As some of you may know recently I have really been suffering with some problems with my ears, feel like I am going deaf! 😦 Not been good. I have been on for the last month, antibiotics to also deal with a sinus infection. Both of these are connected, although I am near the end of the antibiotic course and I am still having issues with the ears. I am seeing the Doctor again on Thursday about the ear issue.
Back to the point of this blog…sort of…I suffer from something called Samter’s Triad. So I get nasal polyps which I have had surgery to remove more than once, most recently 2 years ago. I suffer from Asthma, which if I am honest hasn’t been the best over the last 6 months either. Usually it is fairly well controlled and I have no problems with it, not so recently, being a triad that means there are 3 things, and I have the third as well, however in someways it is the least bothersome of the 3. I suffer from anaphylaxis shock if I have any NSAIDs, (non-steriodal anti inflammatories), these are things like nurofen etc. The only time this proves a problem when I do something like break a limb etc as they are usually the best for joint pain etc. Otherwise I don’t have a problem with this particular symptom.
About 12 years ago when I had my last surgery in New Zealand the surgeon actually mentioned the salicylate link. Before then I had never heard of it at all. We got a book that was about allergy free diets and I followed the Salicylate free side of it for about 6 weeks. It was hard and restrictive but we did notice a difference. No problems with my asthma at all, no issues with my sinues etc. The most significant part that showed us that it was working was one day I had a crisp type snack which we thought was OK, and within minutes of eating it, I was sneezing and reacting in a severe way. We reread the ingredients and realised that it wasn’t actually permitted. We agreed that yes the diet worked, however it was very restrictive and too hard to do longterm. So just went back to ‘treating’ the symptoms as per usual.
Then just before the last surgery a couple of years ago Samter’s Triad was finally mentioned. I say finally mentioned as before I never knew what was wrong. It is such a relief when you find out what is wrong, even if you find that there isn’t much you can do, just having a name can be a big help. We started researching Samter’s back then, but there wasn’t really much information around and what was around got very complicated very quickly. Think bio-chemistry type stuff. Certainly beyond my knowledge. The Husband even found it confusing. So at that time we left it and just had the surgery and carried on as usual.
So are you all up-to-date yet. 😉 So a month ago when I started on these anti-biotics, talked about the Samter’s etc with him and I decided I needed to do something again. So we did more research online again, and there seems to be more information about Samter’s itself and Salicylate free diets. There seems to be more options open to me about what to do. One of them is Aspirin Desensitation, which freaks me a little bit. Also something to do with Leukotrines. Both of these would still require a referral to an immunlogist, I think. So when I see the Doctor on Thursday about the ears will be asking to a referral to the right person…if they know who it is.
Now both of these options are probably going to require me to do a Salicylate Free Diet, so we decided that after the holiday I would start on this again. So it starts on Tuesday. I will be eating things in the Neglible and Low columns, which gives you an idea of how restrictive this diet is. Main fruit is bananas, and pears, peeled mind you. Herbs and spices are pretty much all gone! Tomatoes are all gone as well. Will probably be having the same thing for breakfast and lunch, and just varying dinner for the most part. Since I am at work Monday to Friday this should be OK, just the weekends will be harder. Will be pretty bland food wise as well…or very garlicky. Hopefully this will help my symptoms fullstop, and then when/if the referral comes through for the right person, I should be ready to start whatever they decide is the right action for me.
This is why my curry tonight was my last curry for awhile. Tomorrow my last supper is going to be Nachos.
Hopefully this will also have the bonus of doing something about my weight…lol
My Blog 
I too suffer form this disease, and was just poking around the internet for research. I know this was posted awhile back, but I HAVE done the aspirin desensitization, and have found TREMENDOUS relief….one problem. I suffered my first miscarriage, and can’t help but wonder if it is due to the aspirin I have been taking, along with the steroid treatments I do nasally. This does seem like it is a rare disease. It can be maintained, and I really do encourage the aspirin therapy. I am able to smell again for the first time in years after two nasal polyp removal surgeries, and have had not a single issue with my asthma. I get so frustrated feeling like a science experiment at times. I’m headed to my specialist next week. Good luck to you!
Unfortunately my doctor here doesn’t actually believe in Samter’s, or any diet related issues with it. They also don’t do the Aspirin desensitisation here. So at the moment I am following the diet and that is working for me! 🙂 Off medication for my asthma, sense of smell the lot. Will be seeing my specialist in a couple of months and he will be able to see if the polyps have shrunk as well.
I am finding it frustrating at the moment that most of the research into food intolerances is in Australia and because I don’t live there I am swimming in the dark and fighting medical professionals who don’t believe in it!
After spending much of my thirties and forties with ongoing sinus and asthma issues and getting chest infections that would last two months despite taking numerous antibiotics I was at my wits end. After going to a new doctor and being referred to an ent specialist and having my second operation on my sinuses I was referred to an immunologist. I was diagnosed with samters triad. Finally an answer to all my problems. My immunologist has been great I have been on aspirin desensitisation which took me quite a few months to get up to the correct dose to be most effective. I feel wonderful, my asthma symptoms have disappeared, I can smell again for the first time in years. I would highly recommend this treatment.
Thanks very much for that feedback, off tomorrow to hopefully start the treatment. 🙂
Hi! Please help! I’m a physician at Scripps Clinic, San Diego, CA and if you have Aspirin Exacerbated Respiratory Disease (AERD), please take the time to fill out this 15 minute survey which is confidential and anonymous. It is part of our research project at Scripps Clinic and your response will help us learn more about AERD and help others with it. Thank you! Feel free to send to others. My email: ta.von@scrippshealth.org
Link to survey: https://www.surveymonkey.com/s/aerd
-Von
I can’t beleive a Dr. would say he doesn’t beleive in Samters. The new name by the way is A.E.R.D aspirin exaperated respiratory disease. It is diagnosed only if you suffer from all three, aspirin sensitivity, nasal polyps and asthma.
The only place doing real research is in Boston and the Dr doing it is
Dr. Tanya M Laidlaw
Allergy & Immunology
She gave a very interesting but long seminar on the syndrome and talked specifically about diet. The fail safe or any other low salicylate diet is really not related to this syndrome because it’s not the salicylate but rather the acetyl part of the aspirin that causes the problem.
If someone says they feel better using the diet then they should continue on that path but I have tried and it did absolutely nothing. I hope through Dr. Laidlaws research we will one day be cured rather than just treated. If anyone is at all interested please watch this lecture and learn real information before you try anything else. For the person who has a Dr that doesn’t beleive in Samters it’s time to find a new Dr and tell everyone you know who uses him or her the same.
http://partners.mediasite.com/mediasite/Play/cfadf1d0da264970a1a4aedeaa51abb61d
Dr Laidlaw is probably right. For those of us with Sampters she is a heroine. Big pharma not interested in fixing asthma.
However, COX-1 inhibition exacerbates aerd and some high sal foods (and others like high resveratrol foods) are known to inhibit COX-1.
Resveratrol is at least as potent as aspirin in this regard.
I was diagnosed with Samter’s triad about 6 years ago when I had my first and only surgery to remove the polyps. My doctor here is not qualified to do the aspirin desensitization either and I would have to travel far to get that done. I don’t even know at this point if the insurance would cover it. I have been using the nose rinse and these eye drops that I put in my nose with an eye dropper. It is called tobramycin/dexamethasone sups.and I have used it for the last 6 yrs, which has kept the infections and polyps under bay. Without these drops I was starting the sinus infections 6 months after the surgery. I am now having problems again and I am looking at starting the salicylate free diet after the holidays too. The blandness is no big deal for me as I smell absolutely nothing since starting the drops in my nose and I can’t taste food very well anyways. So I figure feel better is the way to go.
I have just had my third polypectomy and my Consultant informed me that i have Samters Triad. I have been suffering with asthma, allergic rhinitis and aspirin sensitivity for the last 10 yrs (i’m 39)…1 week in hospital 3 yrs ago due to anaphylaxis…but this is the first time he’s mentioned this condition.
I’m about to start researching the salicytate diet but i have a feeling it includes a lot of the foods i enjoy :o(.
My Consultant mentioned i may be a candidate for aspirin desensitization, which i’m a bit nervous about but think it could be wonderful. I am really tired of the polyps and feeling so bunged up all the time.
Check out this site…http://failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/ On facebook there is also a failsafe diet group. There is also a site called fedup. Unfortunately most of the research is from Australia. Getting some cookbooks helps. I have the Sue Dengate book and the Prince Albert hospital diet book. Good luck, and if you need any further help let me know. 🙂
Hi I have, today, received a letter from my Gp saying that I have been diagnosed wih Samters Triad. I had never heard of it before and am at a loss of what to do next.
I have had two polypectomies in the past, but the nasal polyps grew back within eighteen months each time. Eighteen months ago, both my ears perforated and ended up taking 2 or 3 (can’t remember how many, just knew it took months) courses of prednisone and anti biotics before I was given antibiotic, steroidal ear drops after having my ears hoovered out (painful procedure). Also, started Flixanase nasal drops. All of which dealt with the problems and I regained my sense of smell back after 13 years! Bliss. However,this was short lived as, within six months nasal polyps became a problem again, asthma became difficult to control and I lost my sense of smell again!
Now I find, that I am permanently congested, with a dripping nose. Sleep becomes difficult as I make “percolating” noises, according to my husband and I wake myself up. Night time mouth breathing also leaves me with a very dry mouth in the morning. I am constantly tired due to poor sleep patterns. I could go on! I just feel the symptoms are getting worse. Reading Samters triad, it does seem to make sense except for the fact that I don’t think I have much of a sensitivity to aspirin. My Gp suggested in his letter that I could try Montelukast talents but there may be a link to Chugg Strauss which scares me.
I would appreciate any positive support out there. Thank you.
Hi
A low salicylate diet has really helped me. Unfortunately here in the UK not many doctors know much about the diet. Most of the research seems to be from Australia. There are 2 dietitians here in the UK who know about the elimination diet. One is in the IOW and the other in London. One in the IOW is private. The link to the the information is online http://failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/ There is another website http://fedup.com.au/ that has a forum etc. The owner of fedup is also the author of a book that deals with food intolerance. I recommend her book The Failsafe Diet and another bookhttp://www.amazon.co.uk/Friendly-Food-Essential-Allergies-Additives/dp/174045376X/ref=pd_sim_b_5 which follows the elimination diet as well. They are helpful if you want recipe ideas if you do follow the diet. The diet is hard, but you get used to it and learn your limits and then every now and again you can have something that isn’t allowed. The benefits are great though. I have a sense of smell now and had one for about 3 months now. I still take the flixonase spray, however the spray alone wasn’t giving me a sense of smell. My asthma is well controlled I use one puff of my preventer once a day at the moment and haven’t needed my reliever unless I have had a cold.
Well done on getting a diagnosis though. My surgeon suggested that I had it but wouldn’t give me the official diagnosis, even though I fully fit the criteria. Any help advice whatever I will do my best.
x
Than you for your response and I really appreciate your advice.. I will try the diet as it seems to be the most natural and positive way forward. Can I ask if you have excluded perfumed deodorant, cosmetics, skin creams, toothpaste etc. Don’t know quite how far to take this.
x
Hi – I know this is an old post but I am really keen to find a Failsafe dietitian/nutritionist for my daughter, do you have the names of these tow that you mention? Would really appreciate a response. thanks Kim
I’ve just been diagnosed with after years of misery. I lost my sense of smell and taste c. 15 years .Tell me how did you find out you had perforated eardrums and how did this happen. Is it related in any way to the diagnosis and or treatment. I’ve noticed when I do my nasal irrigation my right ear bubbles and pops and I feel the saline is being forced into my ear! It really hurts for a good time after. I get stabbing intermittent pain in that ear. Is this a complication of Sampters or is it possibly caused by some anatomical issue which manifests when doing the nasal flushing?
Hey Alice
Having had perforated ear drums three times, I notice the first sign to be ‘blocked ears’ and when i blow my nose, the ear pops and sometimes there is pain just as you describe. Then they fill with fluid. I guess this is because they are unable to drain away. It then feels like I am under water as my hearing gets distorted. I used to use cotton ear buds to clean my ears after a shower, and also when they ‘itched’ and I think this contributed to impacted wax which blocked the ear and I have stopped using them and I do believe that has helped.
I am currently awaiting another hospital appointment for third time surgery and trying to deal with the symptoms although ears seem to be ok, just constantly blocked nose which runs especially when I lay flat in bed.
I did try the diet for a very short while but found it so prohibitive that I returned to what I normally eat so song know if that would have helped. I am back on flixanase nasal drops to try and control the inflamed polyps. I’ve to tried the saline washes – I’ve had conflicting advice by doctors regarding this. One suggests I try it and the other looked at me in horror and forbade me to.
Let me know how you get on. It is good to hear of other peoples experiences.
Enca
I wish I had an answer for you but I don’t. I have the same thing but not just when I irrigate. I feel like I am talking underwater all the time and my voice echoes in my head. The pain gets so bad sometimes that I have to lay down on the opposite side with an ice pack over my ear and do that for hours at a time. Then eventually after awhile it seems to loosen stuff in my head and the pressure is released. I think it all comes from the sinuses and when it is full and swollen it puts pressure on the ear drum. Even loud noises bother me a lot. I will keep on trying new things and I will keep you posted. Hang in there though. It’s got to get better, at least that’s what they keep telling me.
At this stage yes I have excluded everything perfumed etc. Boots have a pure range of shower gel that seems to be OK. I am using Baking Soda on my hair, which after the first month is fine. I used Baking Soda on my teeth and then ordered a toothpaste from Australia called Plain Toothpaste that has nothing in it. You can always start on just the food and if you don’t think the improvements are enough go further. Or go further to begin and then add stuff in and see what happens. x
I have suffered with Samter’s since1984. I just returned home from the Middle East and moved to Arizona. I started sneezing when I got off the plane and had to take antihistamines daily along with decongestants.
In December of that year my immune system gave out I guess because I was wheezing, short of breath and couldn’t figure out what was going on. It would be many years and several sinus surgeries plus a frontal sinus packing before the Samter’s Triad would be mentioned No way to control it I just avoided aspirin. The salicylate free diet back then wasn’t as good as it is now and yes it’s great to have a name for it finally. I am now prednisone dependent and hope if this diet helps perhaps I can at least decrease the dosage. I use Advair and Flonase to help also. I ordered a book called Clever Cooking with salicylate Intolerance , written from a lady in New Zealand. She literally started doing her own experimenting with foods and says she has very little trouble with her health now . I’m anxious for the book to arrive and get started. Here is a couple of links for those interested.
http://www.livestrong.com/article/318943-elimination-diet-for-salicylates/
For the cook book:
Contact us at
Linda Donald
salicylate.org
P.O. Box 37152,
Parnell, Auckland,
NEW ZEALAND
Tel: +64212991894
Email: ldonald@imagesandwords.co.nz
website: http://www.imagesandwords.co.nz
Hi, I’ve also had Samter’s triad for just short of 20 years. My 3rd, and most recent, operation, 8 years ago, worked pretty well as the surgeon opened up my nasal cavities. However, one side of my nose is now constantly blocking and it feels as though I have a packet of bluetac stuck to my face. At present I am taking oral steroids to try to bring them under control, and I go back to the consultant to discuss my options at the end of June! I would love to hear if your diet has helped, as I find the condition a pain! Thanks.
The diet does help for sure. The major problem is lack of support in the UK from the medical profession. It isn’t something that shows up in a ‘test’ so they don’t believe it.
Thanks for your reply. If you don’t mind me aksing, does the diet slow down the growth of the polyps?
That I will be able to answer in a couple of months time. I saw my surgeon just before christmas and I am seeing him again at the end of July. Fingerscrossed it has. 🙂
Glad to hear the diet can work! I am on day 4 of the Failsafe diet, the strict version as described on the Food Intolerance Network website from Australia. I’ve avoided surgery so far mainly since I’ve spent the last five years either pregnant or breastfeeding between my two children, although I’m seeing an ENT again at the end of the week. I was diagnosed with Samter’s Triad about 8 years ago, and have had asthma (pretty easy to control if I take my flovent regularly) and pretty much no sense of smell for the last 4-5 years (it used to come back just during exercise before that), and now it will randomly come back but very rarely. I used to be completely blocked up in the nose all the time until I discovered oranges were a food that was making it super bad. Once I cut out oranges, I’ve been breathing a lot more clear but often one side will be completely blocked for awhile, and I blow my nose still several times a day – so this has made me a firm believer that it can be treated through diet! Anyway, I’m going all out with the diet and hoping to see some results. I just haven’t found any information on how long it could possibly take to see any improvement. Happy to have found this blog/thread 🙂
The failsafe is brilliant, but hardwork. 🙂 Good luck. You might start feeling worse before you feel better doing it though. I started feeling better at about week 3-4. Then you have all the trials to go through as well. Can feel very up and down.
Really need to write some more about this don’t I? lol
x
Thanks for the heads up! From any other elimination diets I’m expecting the worse before better part. I’ve been strictly failsafe so far, as in avoiding all chemicals. But since samters triad/nasal polyps appears to be more linked to salicylates, have you played with or noticed a difference between going strictly failsafe versus simply low to no salicylates? If that makes sense?
I found going completely failsafe to begin with comes clear you out completely. I didn’t show up any other reactions to any other foods just the salicylates, so the maintenance diet is low to no salicylics. Unfortunately with the nature of salicylates that still knocks a lot of your cleaning, particular personal care ones, out the window. 😦
I just got this definded to me as Samters recently… I have always had reactions to things and have a long list of “true allergies”… I tired of being tired. If I eat 2 apples I have to go to the hospital the reation is so bad. If I take the steroids I gain weight. If I don’t take the steroids I can’t leave my house or eat anything really besides meat. Once dr told me the chest pain I had from the asthma was acid reflux. At the hospital when I go the just give me a steroid shot and send me away. I started singular and it seems to help with the breathing but I am misserable. I am affraid to ask for the aspirin treatment out of fear it will not work…. I am desperate to know of someone who had it like this and had wonderful results from the treatment…. I really want my life back. I have 3 young boys that need thier mommy again.
I was diagnosed with Samter’s Triad 3 years ago. I literally woke up one morning thinking I suddenly had seasonal allergies but it wasn’t that simple. I was lucky I guess, to have my condition diagnosed so soon compared to so many others who waited years to know what it was. I have had surgery to remove polyps and found then that all my sinus cavities were full and infected. It was not fun. That was last August and here I am now again feeling no different. After Ct scan, after Ct scan I still have severe pain in my ears and all throughout my head, especially in my right side. I think that happens because I favor my right side when I sleep and in the mornings (the worse for me) seems that because there is so much mucous and inflammation in my head that stuff just stays there and collects, which in turn causes pain, pressure and I can’t sometimes even walk or talk because of it. I tried de-sensitization but it didn’t work. I was feeling worse than before and I developed hives all over my body and severe ulcers. I had to stop I was suffering too much. My asthma is under control and of course I don’t go near any NSAID’s at all. I find though that no one really knows anything about this. I feel I have to look myself into finding a cure or something that could help me. I live in Ontario, Canada and I will soon be going to another specialist in Toronto that may help. My brother told me about the salicylates and the diets so here I am reading and debating what to do for myself. I feel really discouraged.
I say give the diet ago. It is hard, can’t lie about that. However having your symptoms under control is worth it. You also start learning how far you can go in terms of relaxing as well. My last surgery was 4 years ago. This time last year it was looking like I was heading for another surgery but last check up by the surgeon in July, has discharged me for the meantime and no need for surgery at this stage. 🙂
Hello,
I have had three ops (different ENT surgeons each time) to remove nasal polyps over the past twenty five years. I also know I’m allergic to salycilyc acid. In January of 2012 I was having difficulty breathing and following numerous visits to different General Practitioners, I went to see a Professor of Respiratory Medicine here in Dublin, who immediately diagnosed Samters Triad.
The treatment prescribed was as follows:
Four weeks of reducing quantities of steroids ( 5mg prednisolone beginning with 60 mg per day)
Singular 10 mg ( one per day)
Avamys Nasal Spray
Sertide 500 Diskus (Asthma Preventer)
Ventolin Inhaler (If required)
A diet sheet listing foods to avoid which are high and medium in Salycilyc Acid.
I returned for a follow up examination in April 2012 feeling much better. I have gradually
reduced my medication and my symptons of 25 years have practically disappeared. I continue to
use NeilMed Sinus Rinse every day. I am fairly sure if I had continued to attend the G.P my symptons would not have improved.
Hope the foregoing may be of some value to those of you experiencing Samters Triad
Michael
Hi Michael
Was wondering who was the respiratory specialist you went to see in Dublin. Have made some progress with this condition my self but only realising the salycilyc acid connection now
patricia
Curious to see how you are doing now with your samter’s triad. I had the aspirin desensitization done on Monday and had to start 40 mg of prednisone for 5 days yesterday hoping my body will not reject it. I feel helpless !
two years in and it is great. 🙂
I tried aspirin desensitization and I could not do it. I got 2 ulcers from the aspirin within a week plus I broke out in hives all over. It was a disaster. Since then I had another sinus surgery and now just living one day at a time. My Dr has recommended the injection Xolair so I have had 6 injections once a month. It is helping with the asthma symptoms more than my sinuses and ears but he is still positive that it will help with those symptoms. This disease really is a living hell as far as I’m concerned. Nothing has really worked for me and I guess everyone’s is different but mine seem to be unbearable at times. Not a lot of support from others because no one understands it. That is my view. I understand your helplessness feeling.
I am going to a laser clinic in a couple of weeks. I don’t know anything about it but I am going to research it. They advertise big results in terms of helping sinusitis so I feel I have nothing to lose at this point. And I think I may also give the diet a try. I just have to psych myself up for it. Thanks
Random side effect of samters that my husband has found is an allergy to mint. I haven’t been able to find a toothpaste he can tolerate. It is both artificial and fresh mint. We only found out the other day from a nurse who looked it up and found mint has some similar properties as aspirin. I wonder what other foods there are? I think we may have to try a low salicylate diet…
Yes Mint is high in salicylates. As are most herbs and spices. I have ordered toothpaste from here http://www.oralhygienesolutions.com/ it is Plain toothpaste, it has fluoride in but no flavouring at all. For a really clean feeling add some baking soda.
I use Crest Cinnamon Rush toothpaste. I have never had a diagnosis, but after a friend said she had been dealing with similar symptoms as me, I started doing my own research into Samters Triad. I think this is me! The cinnamon toothpaste is the only one that I don’t immediately start wheezing with.
Hi there ‘Triads’ Well, I’m a new comer to Samters Triad. I was diagnosed 6 months ago but was told by my ENT specialist that it’s an inflammation of the sinuses and there is no cure. I had my follow up appointment only yesterday and it was mentioned again. This time, I took it more seriously and started to wonder what it actually is and if there was a special diet I could follow to help ease my symptoms. I was not given advise on this problem so I felt I had to research myself. Thanks to the internet, I’m starting to learn and i’m shocked to find the trigger of my allergic reactions: runny nose, headaches, recurring polyps, asthma attacks oh and not to mention, my most annoying persistent cough! It’s been food all along! But, most devastatingly, my favourite foods and drinks `Spices and Wine!’ arrrghhhhhh Nooooo!!!!!!
After reading everyones messages (hope you don’t mind) I have all these. Over 12 years I have suffered with Asthma, Polyps, sinusitis, Rhinitis, Allergies to Dust, Pollen but most of all Aspirin! I took a Neurofen about 6 years ago, a pain killer I normally take, but this was a day i’d like to forget because I had a severe reaction which led to swollen lips, my face turned bright red, my eyes quickly went blood shot and I couldn’t breath, a very scary time! I couldn’t understand why my body started to reject this pain killer? I’ve now been told I’m to have surgery yet again 4th time! News I dreaded!
Recently, I have also noticed my skin has become more and more sensitive to things too? I break out in small red blotches all over my skin after a bath. Certain perfumes make me itch and small like blisters have appeared. I am now at the end of my tether! It is getting me down and depressed. I’m shattered because of lack of sleep and I feel all energy is zapped due to constant blowing of the nose, constant coughing and worst of all my wheezing which i’m finding hard to control.
I just want ME back again. I want energy, I want to be able to go places without wheezing, I want to be able to smell the beautiful things life has to offer, I want to be able to live life and not struggle with a tissue always in my hand or annoying people around me with my cough. I also want to pursue my dream job and become an art teacher/lecturer but I feel all of this is stopping me.
I’m sure you all understand where I’m coming from! It’s great to find people that can sympathise with this disgusting and annoying problem.
The diet is hard, but when I find that if I do it for a couple of months and then stop for a bit, then restart when I start feeling my symptoms returning I go on the diet again. The salicylic acid builds up in your system. I need to go back on the diet at the moment, however I will shortly be seeing someone to hopefully try Aspirin desensitisation, to get onto this I had to go through immunology rather than ENT. Worth seeing if you can get a referral.
Hi there, Firstly thank you for replying to my rant message! I have felt on my own with this lingering problem, until today. Finally found people out there who can understand the hardships we deal with, that effects our everyday life. All i want out of life is to be able to breath and take in the fresh air, especially now Springtime is here. Also, to be able to make a conversation without breaking out into an annoying cough along with a persistent wheeze. It looks like i’m going to have to try out this salicylic diet, much to my despair. l know that doing this diet will benefit me, as I long to feel fit and energised again. I’m only 40 yet at the moment I feel 60 year olds are healthier and fitter than I am.
I do get frustrated especially when people moan about a seasonal cough and cold? “HELLO, THATS WHAT WE DEAL WILL 24/7!”
Anyway, as you can see I feel quite upset to read about this problem knowing I’m taking out my little luxuries in life ‘Food and wine’ being the main concern. Even through all these complaints there are three precious people i’m most grateful for and they are my beautiful healthy twin daughters and my caring and supportive husband who has listened to the most dreadful and disgusting noises that comes from me.
Aspirin desensitisation? “Aspirin’ the name makes me cringe! What is involved?
Well, here goes…. “Good bye tasty food, Hello Plain boring food!”
If you get hold of some cook books there are some good recipes out there. Family favourite is sugar roasted potatoes…nom nom. Like Christine said you may notice that other things you react to as well. I find that if I have dry fruit I have to check out the preservative used, common one is sulphur based and that really upsets my tummy. Homemade bread is really good as well. You do get creative.
I am not 100% sure what is involved at this stage, appointment is on the 5th of March, will no doubt do a big blog about it then.
I really feel for you but I understand perfectly. I have been on the diet for 3 months now. It has made a difference for sure and “it” being hard is an understatement! I agree that it does build up in your system again if you have followed it precisely and then you cheat a little. I did not cheat at all for the first 2 months and just lately I might have had just a few pieces of green vegetables or a piece of chocolate and for sure it hits me mostly on the right side of my face and into my ear. A lot of face pressure and a terrible feeling all around. The one thing that I have also noticed with me was my sensitivity to any preservatives/chemicals in foods as well. I didn’t think that I had that but I really noticed it when I started this diet. I wasn’t cheated but still was getting a lot of exaggerated symptoms still so I immediately changed my diet again and it became even smaller because I had to find food that was not full of preservatives. That in itself is a hard thing to do. I have since been making my own bread and shopping at organic stores that have more natural ingredients and no preservatives. It’s hard and I hate it. I am being booked for another surgery but I am not sure if I want it. I am trying everything else to help me in the meantime. I am still hoping that I find myself a cure or an almost cure for this condition. I can’t wait and hope that someone else will. I will keep you posted.
Thank your for replying to my Rant Christine. I will try organic food to see if it also helps me. Good Luck to find a cure. If you do, then please share!! I know i’m going to have to be strong because I know it’s my health I need to think about.
I’ll be back to let you know how I get on.
Thank you for your advise!
Joolz
Hi there triads… Just thought I’d update you all on my first week of my new diet ‘the elimination of salicylate… What a transformation!!! After all my years of suffering, wheezing and runny nose thinking its dust or pollen. Not even a week and I noticed a difference immediately!!! AMAZING! I have been really strict with myself and really reeped the well deserved benefits. No wheezing , no stuffy nose, no headache, no sinus pressure, no coughing. I’m sure the wine will be calling and I may givin to the odd glass or two, however my life has changed dramatically 😉 thanks for everyones advice !!
From one happy joolz
Hello fellow sinus sufferers. Thought I would tell you my experiences with Samter’s Triad and aspirin desensitization. A few years ago, I developed sinusitis and asthma symptoms. I also developed a sensitivity to aspirin, which I had no idea was related to the other two symptoms. After 3 sinus surgeries and more sinus polyps, I was referred to a physician who immediately diagnosed my condition as Samter’s Triad. I have since had a fourth surgery, then went through the aspirin desensitization last December–not a difficult experience. The results have been wonderful so far. I feel great and can breathe well. I do continue to use Dulera and Singular for the asthma and do not have any asthma symptoms. I take 4 aspirin daily at this time. The only negative effect I am recently experiencing is tinnitus. Perhaps, if I can reduce the daily intake of aspirin soon, this problem will be aleviated. We will see….
It’s nice to see someone blogging about this finally. I figured out I had Sampter’s about 10 years ago now (Actually had the symptoms since 1992) and the ENT doctor I have now is the first one that actually ever acknowledged that I have it. (this year). I am allowing myself to suffer somewhat because the diet seems so strict that it looks like I would end up dying of heart disease or something like that if I followed it to the letter. So I eat fairly normal, but keep away from preservatives and boxed foods, having worked at home for the past eight years has probably helped. The biggest triggers are still tomatoes and my toothpaste, which is why I came upon this blog, looking for something I can brush my teeth with at night and not have to get up at three a.m. to empty my sinuses. If it weren’t for that I would sleep through the night since I do not try to eat anything past about 4:00PM. except maybe one or two things that are on the diet. Beconase AQ and Advair always helped the symptoms otherwise. It took me 10 years after they stopped selling Beconase (or Vancanase) in the US to find a Canadian source for the Beconase. Alas, my polyps have returned though, so will probably need another surgery before I can access the full effects. It kept them from returning for the six years I was able to purchase it after the first surgery.
Well, good luck, all of you and thanks for the tips.
Hi. Please tell me your status with the Samter’s Triad. Are you still on the Salicylate free or low diet? How are you feeling? I have not been diagnosed but have all 3 issues….for years! Trying the diet. I would love to know more about how everyone is doing.
Hi, I am actually not on the diet…but only because I have just recently done the aspirin desensitisation…new blog time I think!
I have sulphite/salicylate sensitivity and my dear friends Sarah and Becky have come up with some amazing recipes to help me out! I hope they will help you and your readers, too … they are delicious!
http://sulphiteandsalicylatefreerecipes.wordpress.com/
I have had no sense of smell since 1990. I’m 54 now and would dearly love to be able to smell again. A couple of you mentioned success with aspirin desensitivation therapy. I developed asthma and allergies a year after moving from Michigan to Florida in 1988. I developed a sensitivity to toothpaste as well as some of you did. My asthma has improved in the 21 years since I moved back to Michigan and I don’t have toothpaste problems anymore, so I don’t think an anti-salicylate diet would benefit me. I have had 3 sinus surgeries to remove polyps in 1992, 1995, and the last in 2002. The last surgery was very successful, but I still have chronic inflammation and some small polyps. But I’m able to breathe through my nose and I can sleep at night with my mouth closed. I would like to hear more from the folks who regained their sense of smell via aspirin desensitization and other means. It’s unbelievable how many people tell me I’m “lucky” when I can’t smell something like dog poop or dead skunk. I remind them that I can’t smell flowers, baking bread, cinnamon, freshly brewed coffee, or any of the other pleasures of life either, thus, I’m not “lucky.” Having no sense of smell has of course rendered me relatively taste-less as well. I can taste sweet, salty, sour, and bitter, but not flavors.
Irene! Your story is my story. How has life been? Find the magic cure yet?
Hi Kirsten! I had to reply to you, my heart goes out to you and anyone suffering from this! I found 10 years ago I lost my sense of smell, taste, had sinus pressure, never ending congestion, etc, etc…have had 3 polyp removal surgeries the last in may of this year. I even after the surgery noticed no sense of smell, and wasn’t long before I felt the development of new polyps. then in September I read for the first time about AERD, and the triad. I said wow that is me! So against Doc’s recommendation if he had known I preformed the Aspirin Challenge myself at home just as the described in the case studies. I can tell you it has made a huge difference! I go back to Dr. the 22nd of this month, and that is just to request having the existing polyps removed because I am confident with them removed, and on this aspirin regiment I will finally put this problem behind me! it has also been my experience that the polyp growth obstructs the smell sensory, and once removed will regain smell, quality of life! my hope, my prayer! I hope you get some real answers and help in your situation, but know that despite the lack of knowledge in this by the doctors, this is a real condition, and there are real solutions! God Bless you!
If you have the surgery just be aware that you will have to go off the aspirin before the surgery and while you recover…you might have to do the challenge again after it as well…this is due to the fact that aspirin can thin the blood and cause more bleeding.
Hi there,
just read this when trauling through the next trying to find more information on Samters Triad. I was diagnosed this year after a multitude of asthma attacks, running nonse, no smell an generally feeling not me! I have had a polypectomy and sinus blow out surgery last week and am just recovering and following the salicylate free diet as best I can..even though I could murder a glass of wine most nights! I have not been told about the aspirin desensistisation and wondered how this works and what happens and who I speak to about this. It good to know ther are others out there anyway..
kate
Hi
The process for desensitisation is actually quite easy really. I had mine done at the Sheffield Immunology Department, so an immunologist referral is your first port of call.
Once I got the appointment the first appointment involved the usual skin test malarkey to check there wasn’t anything else. There wasn’t, which I knew there wouldn’t be.
Next appointment involved getting liquid aspirin put down my nose. This was pretty unpleasant. This was happening over the course of a couple of hours, with careful monitoring including your nasal breath…think peak flow meter but for the nose. There had to be a reduction of your breath and an increase of your symptoms for you to be considered for the next stage. I had that so could do the next stage. The next stage was over a month at home. It involved putting aspirin down my nose each day increasing the dosage every couple of days. Then back to the clinic for the oral challenge. This involved giving you aspirin tablets over the course of a couple of hours again monitoring you. I was scared before all of this that I would have a full on fit while there, but didn’t either time. They are very good and watch you carefully.
Now I have to take a low dosage each day, 150mg and also montlukast as well. My sense of smell will vary a bit but I think that is more normal variation rather than what I used to be like…today have it and everything smells so good!
Good luck.
My aspirin desensitization was much simpler. I was in the hospital from Monday to Friday afternoon. I was given a very low dosage of aspirin orally–less than a child’s dose. After tolerating that much, then next dosage was increased. I experienced one reaction about half way through the process, but I was being monitored carefully and was given what I needed to counteract the reaction. After that, the dosages were increased until, by Friday, I could tolerate a high enough dose to be released. As of this writing, I still take 1-1/2 aspirins twice daily and have not had sinusitis or polyps since the hospitalization. I still do have asthma and use Dulera for that. I am also sensitive to wine now and cannot drink it. I would highly recommend aspirin desensitization for Samter’s Triad (AERD) based upon my experience thus far. ( 10 months since hospitalization.) Good luck to those who are still suffering from this condition.
Hi
I have found 3 fish oil capsules per day have greatly helped to reduce my salicylate intolerance, although I am still very careful about what I eat. When I forget to take them I’m all itchy scratchy again.
Buteyko breathing has brought my chronic and acute asthma under control. I no longer spend the day gasping for breath.
I am considering aspirin desensitisation for the ongoing sinus problems and rhinitis.
I also have ringing in my ears. I’m not sure if this is related but if I can get rid of it I’ll let you know
I developed chronic sinusitis in 2007 and the Doctor’s said that I had
external allergies, so I went for allergy shots for 2 years. Of course they did
absolutely nothing to relieve my symptoms of loss of smell, stuffed up nose
and headaches and no energy.
I finally went to ENT doctor who did Fez surgery and opened up my turbinates
and rmoved tiny poyps.- no relieve-. I discovered that every time I used nasal sprays
Nasonix, Rhinocort etc., I started getting post nasal drip and a asthma attack.
There is a perservative in the nasal sprays that I have become allergic too so
I stopped taken nasal sprays and my post nasal drip went away.
I finally fired my ENT doctor and found a ENT professor who was highly
recommended and he said that some people can not tolerate nasal sprays
and he prescriped saline nasal wash ( squirt bottle) with
an ampule of PLUMICORT). I could finally breathe again and slowly my sense
of smell returned . This Doctor has saved my life and I am sleeping better
and my asthma has improved.
However , I took an Advil ( Canada ) nsaid and I immediatley felt nauseated and
my mucous membranes in my nose became swollen and I could not breath through
my nose. ( so I still have Samter Triad ) and ended up in the ER.
I am allergy to mint, contact lens solution,,perservatives in certain medicines,
nasal sprays,aspirin,advil ect, But at least I am able to smell again and breath again with
nasal Plumicort wash. Please ask your Doctors about this new treatment and
throw away the nasal sprays because they are loaded with perservatives
and destroying your cilia in your nose and causing post nasal drip ( asthma)
Cheers,
Barb
Wow this blog is amazing, it’s very easy to believe that you are the only person who has to deal with this and it’s very easy to go slowly insane with it all. I am sick of being sick, too many surgeries with no results. This has been truly interesting reading, I will definitely look into the diet and talk to my ENT dr in regards to desensitisation , am so over being blocked up, nose and ears, constant headaches after all the blowing and then of course not being able to take anything stronger than panadol or else I’d have another fit, good luck everyone
If the diet works or helps more power to you but for me all it did was help me to be more unhealthy because of such severe restrictions. Please if you have been diagnosed look at this in it entity. she talks about this diet at the end and explains how it is not the salicylate but the acetyls that we have difficulty with.
http://partners.mediasite.com/mediasite/Play/cfadf1d0da264970a1a4aedeaa51abb61d
Hi everyone! Thanks for sharing your stories. My 13 year old son was recently diagnosed with the big S. Looks like a long road, but glad to hear some of the treatments offer relief. He has a good excuse to not eat his fruit and veggies now, at least. Most of the docs think he is too young for aspirin desens.. So just doing singular, dullera, nasonex for now. I just feel a bit helpless in trying to help him feel better.
You will get there. 🙂
Found out recently from a new (& very smart) ENT ( after a year of one sinus infection after the next) that I have Samter’s Triad; however, I don’t have the asthma, but it runs heavily in my family. Had a shock reaction to aspirin 18 years ago. Luckily, I had some liquid Benedryl in the house and drank some of that. Have dropped apples and other spices, etc. from my diet (found that out on my own) Have nasal polyps on one side, but seems useless to have them out. The only medication that helped me was Singulair. However, started having terrible mood swings and had to get off. Sad! That med gave me immediate relief. Sigh! I have just started allergy shots for my other allergens (grasses, molds) and hope that helps over the long haul. And now I carry an Epi-Pen. Any foods that I need to drop? I hadn’t thought about mints and toothpaste! Thanks for the heads up on that. Ate 4 mints yesterday and felt bad all day! (Forgot!) So nice to know that I’m not alone in my situation! Any suggestions appreciated!!!
If you google salciylate free diets you will find most of the food you need to drop. Unfortunately most fruit and vegies are on the no go list. 😦 Which is another reason I am so glad I have now been desensitised and don’t have to worry about that. The diet is boring as all hell. Sue Dengate’s book is a fantastic book to get your hands on. The failsafe diet. Good luck.
Going through aspirin desensitization was the best solution for me. It took five days and was well worth it. I don’t have sinus infections now. I continue to take aspirin every day. I use Dulera once daily for the asthma. I am still sensitive to wine and beer, but not sure what causes it. I have pretty much lost my sense of smell, but I can get along just fine without it. Life is pretty good. M. Smith
Hi I am in my sixties and have had Samters symptons (Triad), I now realise, for thirty years. This was diagnosed about four years ago and I am on a generic version of Singulair called Montelukast which has no side effects for me. I also take a very effective inhaler named Flutiform and my asthma symptons have all but disappeared as verified by my lung function tests. Over the past thirty years I have had three nasal polyp removal procedures, the most recent being about six years ago. Following the last procedurethe the ENT surgeon recommended I use Neil Med nasal rinse every day and my polyps and polyp symptons have not returned. I am fairly fortunate as regards diet and the main type of food I avoid is anything spicy e.g. no curries.
I understand that if nasal polyps are not removed they may have a tendency to increase in size and make breating through nose difficult. I had some heart problems in 2007,(coronary blockage) and they gave me tiny dose of aspirin. This caused me severe breathing difficulties and I now take a drug named Plavix as a “blood thinner”. Overall my health is excellent and I can exercise regularly without any difficulty notwithstanding my medical history.
Michael
Any results back after thehigh salicylate foods diet?
There are further updates on this blog. I have now been desensitised and things are all good. 🙂
I have had sinus problems infections since six years old, asthma from fourteen, at 19 first sinus op after two years of being on antibiotics. My asthma was brittle for ten years and I had a home nebuliser. Second sinus op at 29 years, other issues as severe migraines, allergies chest infections. I cant take prednisolone as I have a severe and very adverse reaction to it. I was finally diagnosed with Samters triad five years ago at 38, the “specialist “couldnt help me and said I probably know more about it than him. I found a great deal of relief in the low salicylate exclusion diet, particularly from hives but this is impractical to follow for many years. So far I have tried anti candida diet, low salicylate diet, selective carbohydrate diet and disastrously the GAPS diet. I would not recommend GAPS as it is extremely high salicylate. I have also tried two different enzymes that rid the body of phenols, magnesium therapy, high doses of vitamin C, fasting and raw foods. I have severe reactions to Asprin, coconut oil, oregano oil, gin, cider, commercial wine, mustard, any sort of artificial colourings or flavourings, grains and goats milk. in July 2014 I was admitted to hospital with eosinophillic meningitis with severe pulmonary involvement, all my lymph nodes were full of fluid I was told that I almost certainly had Churg Strauss. I had had enough! I have been studying herbal medicine most of my life and set about researching my declining health and the loss of quality of life which the doctors seemed unable to do anything about. I found a scientific research paper in puBmed that I have saved somewhere on my computer but am currently unable to find! there is a link in woman with as they approach menopause and their hormones decline and Asthma, nasal polyps, and auto immune disease. Womens hormones begin to decline as early as 30 years old, sometimes earlier. I had a great many of the symptoms since I was 28. I decided to do an experiment and take red clover, which is estrogenic and anti-inflammatory, it does however contain salicylates. Since taking red clover in the morning and Hypericum perforatum at night I have noticed a dramatic reversal of symptoms. The red clover has got rid of the chronic chest pain caused by the chronic eosinophillia to the point where if I miss a dose I notice within hours. My salicylate tolerance has dramatically increased and I am able to have herbs and spices again, I alternate spicey days with several low salicylate days just to be safe. My asthma is virtually non existant, the only thing still bugging me is polyps which I have been treating with a nasal spray I made using sea salt, thyme, and garlic in small amounts. This clears a sinus infection within days, I have not taken antibiotics since 2008.Also cutting back on salt intake may help – too much salt in the diet has been linked to auto immune and inflammatory diseases. Also I have no sugar in my diet, this includes honey and fruit. I have just been studying ways to reverse the polys as well. I will get back to you after some more self experimentation! Thank you for this blog it has been so helpful. When I find the Pub med studies I will post the links in the comments. In the meantime please feel free to email me if you think I may be able to help.
I found some things that could help us all.
http://aerd.partners.org/ this page contains several studies about raised IgE levels in Samters patients, amongst other things they are experimenting with high- procyanidin chocolate for its anti inflammatory effects – think organic dark cocoa rather than sugar laden milk chocolate . There are other foods high in Procyanidin as well, Wiki has some info on that but always check the reference material at the bottom of the wiki page. If you are going to experiment with cinnamon – always use cinnamomum verum not cassia that you get from the supermarket as cassia contains coumarins, which can cause liver damage. The poly phenols in cinnamomum verum are different to cassia. Heres another experiment worth doing: http://www.bionette.ca/v/vspfiles/assets/pdfs/Neuman01.pdf
Near infra red therapy has been used by physio therapists since the 1980’s. There was an article in New scientist recently that explains how the near infra red works. It speeds up the rate at which the mitochondria processes ATP which produces quicker healing times. I also found this… https://www.wellnessproducts.ch/?lan=en&page=2&id=66916 if anyone is going to experiment with a near infra red lamp make sure to read all the safety data, never have the lamp too close or shining on one area for more than 12 mins, particularly your head as it is not wise to increase the heat of the brain. Always use a timer as infra red therapy makes you relaxed and sleepy if you fall asleep you could be under the lamp too long. If you have ever been diagnosed with an auto immune disease ie eosinophillia that involves your lungs, your should shield your chest area with several layers of foil while using in your sinus area. Near infra red dramatically stimulates your thymus & can cause an increase in eosinophils in people who have pulmonary eosinophillia, I found this out the hard way. For people who are suffering eosophillia as well as Samters triad (I have found quite a few cases studies on line) you would do well to avoid accupuncture and sambuccal (Sambucus nigra – Elderberry), both have a tenancy to stimulate the immune system, raising eosinohills and increasing cytokines.
Hi everyone,
Firstly, thank you thwkiwione for this post! It’s been very interesting reading it and all the comments below – it has made me realised that there are other people like who share they same illness and suffering.
I am 26 years old and so far had 3 surgeries to remove the polyps from my nose and sinuses. I had the first surgery when I was 17. I was lucky to find a doctor who diagnosed me well as since I was 12 I was going from one doctor to another who only diagnosed me with allergies… When I was 16 things got really bad – totally blocked nose, loss of smell, asthma problems. I was diagnosed with intolerance induced asthma. No one told me much tough. I thought one surgery was going to solve the problem – how wrong was I!
I think something went wrong at the first surgery as at that time in Poland (only 9 years ago!) it was made in more drastic way. They basically drilled in my mouth, above my teeth and removed the polyps by clamps blindfolded… I had stitches in my mouth, “bandage” (you all know what I mean but I don’t know the name for it) in my nose, couldn’t breath properly and couldn’t eat for almost 2 weeks. On top of that my head swelled to a size of a balloon and no one told me something went wrong. Because it was all new to me and my family we had no clue about the illness or surgeries or how it supposed to look. Anyway, it was horrific, but the other two surgeries went okay (endoscopic).
I am now livin ping in England and seeing an ENT surgeon every 4-6 months. I’m actually waiting for my 4th surgery, I, currently on the waiting list.
Since I was 19 I’ve been taking these medications: Alvesco, Atimos, Singulair/Montelukast, Flixonase/Avamys and antihistamine tablets. I always have Ventolin with me for sudden asthma attacks but my asthma has been well controlled. I have more problems because of my nose.
I did try a diet for 2 weeks but couldn’t manage 😦 I found it really difficult to prepare tasty meals out of such limited number of products. That’s why I wanted to ask if anyone has any recipes/books or could recommend anything? I took steroid course twice this year, once in April and it lasted till June and the other one in August and it inly lasted till beginning of October. I feel awful als,of every day. My nose is totally blocked I can actually see polyps in my nose when I look in the mirror at a special angle. I can’t sleep at night I wake up every day extremely tired. I have runny nose but nothinh comes out of it when I blow it. It’s just Water running down my nose. I have allergic reactions to almost everything now, or just because I’m tir d because had a long day at work or stressed day and in the evening my body gives up and I have a really bad reaction. My face often is swelled and I look like I’ve been ill (funnily I am) or crying and people at work are asking if I’m okay…I cannot go out because alcohol obviously triggers my symptoms and I can’t really eat out because j never know what’s in the meal. I risk it sometimes but it means that I’m struggling with the symptoms for half of the night.
How do you deal with our illness? What do you do for living? I am strong and I keep on telling myself that other people has it worse but sometimes I just can’t take it anymore. I literally cannot drag myself out of bed. I would like to do exercise but I can’t now. Please share some recipes or books with me so that I can try to do the diet until my next surgery. My other worry is, how many surgeries will we/I have in the future? I’m only 26 and I’ve had 3 so far, does it mean I will have one every 4/5 years? Is here anyone older who had many surgeries? How have th affected you?
Thanks everyone for reading,
S
Crap…had started a big reply. Push for desensitisation for aspirin…https://thekiwione.wordpress.com/2013/07/07/samters-triad-and-aspirin-desensitisation/ has transformed my life! 2 years on now for me! It is brilliant. Have your next surgery and then push for it!
Will do a full update.
This is one of the best books I found for recipes as well. http://www.slhd.nsw.gov.au/rpa/allergy/resources/foodintol/friendlyfood.html
I wish I could have taken the aspirin desensitization but my stomach couldn’t take it. I had two big ulcers from it and had to stop. Everyone is different so hopefully it will work for you. I am still struggling.
Thank you thekiwione – this website looks great!
I will also have an appointment about the aspirin desensitization so hopefully everything goes well and I will be able to have it done. I am a bit stressed but also looking forward to it! I told my ENT doctor that I found a blog written by somebody with the same condition as me and that you described your desensitization here. 🙂
Thanks so much,
S
Hi- I am not sure if this will be helpful as I see that you wrote this a year ago…. but I had seven surgeries between the age of 12-20 – I am now 45. My doctor was amazing and I do have to say that by the last surgery I remember the doctor saying they really didnt feel it would be a good idea to keep doing them I( wont go into details) – that was back in the 90s. That is when I started the aspirin desensitization which was amazing and changed my life. I now no longer take the asprin and have not had any polyps. I do have to be careful not to eat any food that cause mucus formation in my body – so basically veggies and white meats (chicken fish…) no dairy or sugar!! good luck!
I really really feel for you, Ive had years when I couldnt breathe through my nose & my face, mouth, ears & nose itched from the allergies also blood blisters in my mouth & on my tongue. Try to get rid of all the chemicals from your house -use unscented shampoo, glycerin unscented soap, fennel toothpaste helps use gloves to wash up. Also drink lots of water. I’ve had three polyp surgeries the most recent May 2017. Without taking vitamin B complex & B12 supplements I become bedridden with chronic fatigue, however you need to find the right dose if you do take it & take too much you wont be able to sleep. I also take magnesium & MSM & Epsom salt baths. Its sad you are so young & having to deal with all of this.
Hi there, I’m new to this blog, it’s made very interesting reading and it’s good to know I’m not alone, I don’t think I’ve met anyone else with this condition. I appreciate these comments were made years ago, but are still relevant, but wanted to add mine. I’ve had the triad since about the age of 15, I’ve had at least 12 lots of sinus surgery, needing to have it very regularly during the early years to very long gaps in later years. I’m 54 now. I don’t know if it helped-I cut out tea, reduced consumption of tomatoes, caffeinated coffee and some other foods. I’m also on Nasonex, Beclomethasone and antihistamines. My ENT consultant has been pleased with my slow polyp growth. As I’ve got older I’ve experienced more problems with my ears (glue ear/eustachian disfunction) and have to wear hearing aids most of the time. I also have a perforation and have regular micro suction to remove discharge and the glue (yuk sorry I know). I’m now cutting out diary which helps my sinuses, but not my ears and am also trying gluten free (the jury’s out on that one) I’m considering trying the Failsafe diet, but am put off by the restrictions and was worried about trying aspirin desensitisation. Please don’t lose heart and take care everyone.
So sorry..what nightmare!
So sorry..what a nightmare!
Poor Saba thats absolutely appalling that you have to live like that, here is a website that has recipes for low salicylate recipes: http://fedup.com.au/recipes You may also find it helpful avoiding foods that are high in histamine as well, examples are here: https://www.allergyuk.org/common-food-intolerances/histamine-intolerance
try drinkning plenty of water and taking vitamin C if you can find one without food colouring & additives etc. I also take magnesium daily.
Can anyone tell me if I have to adhere to a low salicylate diet at the start of the asprin desensitization?
No you don’t need to adhere to a low salicylate diet at the start of the aspirin desensitisation. 🙂
Ellie – thank you for sharing the links – much appreciated!
S
Hi all,
Here is a summary of where I am currently in my Samters journey. Please note I am not a doctor and would advise you to get some professional confirmation before following any of the advice given here.
I’ve had Samters Triad for at least 20 years but have been really battling it in the last 5. I hit forty was overweight, struggling with asthma and depression. I decided to clean up my life. Started serious weight training, started eating organic, then Whole30, then Paleo, then Paleo Autoimmune.
Interestingly, though I was doing everything that the docs suggested in terms of life style and nutrition, my asthma and nasal symptoms got steadily worse! Through an arduous process of self experimentation including every possible strategy deduced from the internet (it feels like I have read everything there is on asthma, allergy and Samters!) I have discovered that a
SALICYLATE CONTROLLED DIET
greatly reduces my symptoms. My lungs feel completely clear and my nasal symptoms are also improving. The digestive distress has almost completely gone and my bowel movements are regular and civilised! My mood has improved and I feel sooooo relaxed. For the first time in many many years I can take a deep breath and feel it ‘catch’.
I still don’t have any sense of smell – a recent trip to the ENT confirmed I have significant nasal polyps. I’m hoping that this will clear up in time but as of this writing I have no evidence that the polyp formation has the same pathogenesis as the asthma, the mood disturbance and the GI tract inflammation which clearly is Salicylic acid derivatives in the diet and, to a lesser extent for me, in the environment.
In addition I am convinced that Samters has a fourth component (it’s not a triad but a quad) which is metabolic disturbance. I have had periods where my airways have been completely clear but have been unable to walk across the room without getting seriously out of breath. My last lung function tests confirmed that my absorption of O2 is normal – ie there has been no damage to the avioli. (a big phew!) In my experiments with Buteyko breathing method (which sadly is hocum at least from a clinical perspective), one thing of value was the Control Pause which enables you to get a handle on how well your Respiratory Chain is functioning. At this time my energy is really good and I am enjoying life and I put that down to the diet! So Yay! and
GO ME!!
The doctors however are not convinced which is their right. I want doctors who apply science and are not swayed by every passing fad on the internet. However they have some serious catching up to do to get the science to tie in with my experience. If you are battling Samters I strongly advise you to give a sals controlled diet a go. Either go it alone like me and just select a balanced diet that is low to moderate in Salicylates or adopt something like Failsafe.
YOU WON’T REGRET IT!
One thing to consider is that it took about 4-6 weeks for my symptoms to improve. So be patient (yes more than the super human patience that you have had so far!), hang in there and you will get some relief.
The second weapon in your Samters arsenal is
INTERMITTENT FASTING (IF)
I can not over emphasise the power of this approach for this problem. I follow a style called Lean Gains but you can use 5:2 or alternate day. Here is one theory about Samters (the medical profession have discounted this on the grounds that Montelukast does not improve symptoms but I think there have been flaws in the trials). You don’t have to fast all the time but it can help when you think you have some Salicylate ‘backed up’ that needs clearing out.
To get technical – the arachidonic acid cascade is impaired in those with Samters. Your ability to metabolize AA is throttled by the amount of Sals in your diet. I suspect the reason why double blind placebo randomized trials have not been able to confirm low sals diet as a treatment is a) they have not been of sufficient duration and b) they have not considered AA levels in participants. Someone consuming super high levels of AA will need longer for a low sals diet to have an effect. This element has confounded research so far.
IF allows your body (probably your liver which manufactures the required enzymes) to ‘catch up’ with the AA processing. It stops the AA cascade ‘spilling over’ into inflammation forming metabolites like LB4 (Leukotriene B4 – your Montelukast inhibits the receptor that responds to this).
The combination of Sals controlled diet and Intermittent Fasting has changed everything for me.
Good luck, my heart goes out to you.
Duncan
x
P.S on the issue of Aspirin desensitisation which is not recommended by the medical profession here in the UK, I have a number of concerns. Firstly does desensitisation reduce the positive influence of salicylates? These have been shown to reduce risk of cancer. You could argue that nothing is worse than Samters but I’m not sure that’s true. Secondly what are the long term effects of taking a full of dose of aspirin every day? 🙂 x
thats interesting- Ive recently (last five weeks) gone over to low sal plus 5-2 style diet & it does seem to be making a difference. It might not work for everyone tho’. The Buteyko will only work for certain types of asthma as well. I cant do Buteyko, however the two things that helped were taping my mouth up at night – I have never had such a good nights sleep! & did it for 8 or 9 months. The other thing was exercising with my mouth shut – this seems to improve my sense of smell & after running or cycling I feel euphoric & recover quickly. very odd!
Very interesting thanks, thought I’d read some negative articles about aspirin desensitisation that but me off, but glad it has helped some of those that have tried it. I was offered it by Guys Hospital as they were doing a trial on it 25+ years ago, but didn’t want to do it as too wimpy 😀
Thank you for your article. I have been told that I have this samters triad. The immunologist is referring me for desensitisation. I have suffered all my adult life with asthma, chest injections, nasal polyps and lack of taste and smell. Have had polyp surgery, but need it again. I feel sorry for anyone with this, but it’s nice to know that I’m not the only one out there with it. Good luck to everyone going through this x
Hi thekiwione, Christine and Ellie,
I’m really sorry for the delayed reply!
I didn’t get a notification when you replied to me, I was reading thekiwione’s blog again today and have noticed your replies! It’s so nice to hear from you 🙂
I will also start reading all the posts/websites that you have shared with me. I am looking forward to finding some good recipes/advises and start the diet to maintain my better health.
So I am now after the 4th surgery. I finally had it done at the end of January. It was the first time i had it done in the UK and I had a very good experience. What was great, is that I was given morphine after the surgery and I didn’t feel any pain! It was so strange because after every other surgery I was given paracetamol as you have probably experienced, it doesn’t really work… This time it was great – no pain.
When it comes to the aspirin desensitization, I mentioned it to my ENT doctor in the UK and he said we should give it a go. They don’t do it in my local hospital but he recommended and referred me to his colleague doctor based in London. I am looking forward to hearing from her and getting my appointment. It should be scheduled for August this year or a little bit later.
Christine – I’m sorry to hear you cannot do the desensitization. I hope you’re doing well with your diet (I read your other post/comment).
Ellie – how are you getting on?
With regards,
S
Ha Ha – Im still experimenting on myself like Im a crazy lab rat! current experiment is 5-2 diet low sal, also exercise helps too. Had another sinus op in May ’17 – hemorrhaged for three hours afterwards, then had the usual blood & guts for two weeks! I had bone marrow biopsy to test for mastocytosis & leukaemia – both negative & am still avoiding the Churg strauss diagnosis for now! intermittant pulmonary eosinophillia, for which I think I will try yoga & meditation. Have also tried hypnotherapy & will go again. Leave no stone unturned!! Hope You are as well as can be expected. X
Hi,
wow this is all so interesting. I am not sure if this will be helpful but I will share my story a bit. I have had 7 sinus surgeries between the age of 12-20 (about) I am now 45. In my 20 I went to Script Hospital in San Diego CA for about a week and did the aspirin desensitization and it really helped and was an amazing experience. I took the high dose of asprin for about 10 years (a little worried what that has done to my gut ) but in my 30s decided to stop taking the asprin. I have been free of polyps and less asthma ever since. I had no idea there was a diet that had been discovered – I will have to check that out. I basically only eat veggies and white meat and some grains. For me I think changing my diet has helped a lot but am very interested in seeing what the diet is that is listed above. I also go to acupuncture and take herbs every week which I am sure has helped so much. I keep the mucus in my body down as much as I can – with diet, acupuncture, nasal netty pot cleanings and steam inhalations. When I get sick with a cold is the only time I have high amounts of mucus or a hard time breathing. Hope that everyone finds some clarity and hope for good health. 🙂 blessings, Liz
I have this disease as well. I had my 4th surgery 2 years ago at the time I was finally diagnosed. I went through the aspirin decencitizing, which freaked me out as well. I have to take 1300 mg of aspirin a day. It helped tremendously. The aspirin has taken the place of former allergy medications. Prior to this treatment, i was very allergic to aspirin.
Hi everyone. I been diagnosed with Samter triad 10 years ago, then Churg Strauss Syndrome last year. Also had many surgeries to remove polyps.
Recently I was a kidney donor in Argentina, and CSS seems to be bit more severe.
So far my best solution has been the return to strict salicylate control diet. Hard to follow, and usually I forgot that builds up in my body when I got relaxed in my diet, and I need to start all over again.
Haven´t found any doctor here that even heard about Salicylate sensitivity.
Going back to polyps surgery is no option, they grow like grass in my case.
Costo corticoids and Salicylate free diet are my best options and worked, also helps me a lot a bit of meditation and insights to understand what my body is telling me, I strongly believe that there is an emotional component in these syndromes, but have no facts to support this comment.
Good luck to all of you, great help to read others posts and stay positive.
HI Javier, sorry to hear about your Churg Strauss, what symptoms & blood work were you diagnosed on? I was told that I probably had it but none of the blood work stacks up. I Also believe it is a deep seated emotional response to stress, the first serious flare up I had was after severe emotional stress, then the second serious flare up again – stress. Other things trigger auto immune symptoms too, for me acupuncture made it worse – however if it had been acupuncture for deep relaxation I think it would have been fine. Elder berry (Sambucus nigra) caused a massive eosinophillic reaction too, its a powerful immune system stimulant. Be vary of every shining a Near Infra-Red healing lamp in your chest where your thymus gland is located, I tried this & the eosinophils went nuts – it provoked a strong auto immune reaction – not good when its your own body its attacking! Good luck & keep searching for answers.
Are you still having Samter Triad issues?
I just ran across this. I have AERD as well. I am just wondeeing if you went to the proper doctors and got your treatment and also did the aspirin descencitizing. I did the whole treatment and it has been life changing great results. I just hoped you got it treated because i didnt quite realuze hiw sick i was until i got it all under control.
Ok, interesting to hear. I’ve made an appointment for desensitization in Boston with Dr Laidlaw Dec/17, though it will be a challenge to get my daughter to do it. Laidlaw’s clinic recently completed a v small trial of 10 people on a 2 week diet with an increase of omega 3 and decrease in omega 6. Most participants reported an improvement of symptoms. I was surprised to see both lentils and chickpeas were high in omega 6, both of which my daughter eats a lot of.
So what was the result? My 20 yr old daughter was diagnosed with AERD last month and we’re trying to figure out wt to do.
I notice that no one has mentioned Xolair. The allergist has recommended my daughter start taking Xolair injections once a month – supposedly an “off label” use for AERD. The side effects sound frightening. Has anyone tried this therapy? So far I’ve only found the name if of one dr in Canada who does aspirin desensitization and have yet to manage to speak to anyone in the office to see if that might be an option for my daughter. If that doesn’t materialize, where is the best place to go for this therapy in the USA?
I did and it has been amazing! 3 years now. I am going to have one more check up with the ENT surgeon in the next six months, but he is pretty happy as well…can’t believe it has been so long since I last had a surgery…over 10 years!
Thank you. How old were you when you first developed AERD? Where did you have the aspirin desensitization? I’m trying to find a place closest to Toronto and am presently looking at making an appt with Dr Laidlaw at Brigham Women’s Hospital in Boston. Has anyone been there? I have not heard of anyone as young (20yr) as my daughter with AERD.
I had it done here in the UK, Sheffield hospital. I had symptoms from 16 years old, but took me years to get an official diagnosis.
I have a couple of questions for you: How strong an allergic reaction did you have to aspirin before the therapy and how challenging was it to go through the therapy? Also, did you have the therapy after nasal polyp surgery? What I see from several medical websites, the therapy is most effective shortly after surgery – say 4 -6 weeks up to a maximum of 6 months post surgery. I finally managed to get a referral for aspirin desensitization for my daughter today. When the allergist agreed to do it, he kind of shook his head and made some reference to the effect that it doesn’t work, from his experience. He’s an older guy who pioneered nut allergy research here in Toronto and is involved in clinical trials of other therapies. Our window of opportunity for optimum timing is getting rather tight.
I did the asprin desensitisation & it was brilliant for three weeks then all hell broke loose & I had severe abdominal pain & a very bad (I cant breathe reaction). When I looked closely at the ingredients of over the counter asprin – here in the UK it all seems to contain sodium laureth Sulfate – which irritates the lining of your gut. Why on earth they would do this is beyond me & I believe is the reason that the de-sensitisation failed for me. I tried to do the desensitisation with a herb called Meadow Sweet – filipendula ulmaria, but as it is a powdered natural product it is very difficult even with micro scales to get the dose right. I’m now trying a new experiment… I’m eating foods from the low or moderate list & mostly vegetables, low fat, no sugar & zero alcohol – this is important as alcohol makes your gut much more permeable. I also take magnesium & MSM as these supplements help support the liver to get rid of excess salicylate (google phenol sulphotransferase pathways) I take certain vitamin supplements in moderation. Every so often I decide to eat something that I know will make me itch & have problems but Im working it like this. Try to eat sensibly as much as possible, every so often I eat something I know Ill react to – BUT will then fast for a day or several days or go onto calorie restriction mode& just eat an egg & a boiled potato. It kind of a cross over of the “five Two diet” ie five days eating normally & two days either fasting or calorie restricting – this in theory put your body into repair mode & also allows your liver to remove salicylates. So far its going okay – Ive had itchy (hives) feet a couple of times but I just fast for a day or two. Ive lost 5lbs too, when previously I was finding it impossible to lose weight. In the past I’ve found if I remove salicylates from my diet altogether I become ultra reactive. Im also extremely allergic to the chemicals in most perfumes, bad reaction to gluten & allergic to certain dish washing liquid, washing powder, feminine hygiene products – even organic ones, hair bleach and extremely allergic to window cleaning spray. I also have pulmonary eosinophillia on top of the sampters triad.
Thanks for your post. 3 weeks of improvement and then your spirits dashed. Definitely a hard pill to swallow! Your diet etc has a lot of things to take into consideration. It must take a lot of planning, time and energy. I’m curious if these different strategies have had any effect improving some aspects of your health. I know my 20 yr old hasn’t seen any difference when she cut back on some of the major sources of Salicylates in her diet. At present, we haven’t been able to determine any specific food allergies. My daughter eats primarily organic fruit, vegetables and legumes, no meat and rarely touches alcohol. However, when she is out with friends, she eats things like doritos n such, and a lot of various types of crackers when she’s studying. And still we have not been able to identify any triggers. She has no sense of smell and rarely a sense of taste unless it’s particularly sweet or salty. I have read some research on reducing omega 6, and I am going to get my daughter to consider that route. It will be tough as her favourite foods like lentils, chickpeas and oats would need to be significantly reduced. I have been unable to determine if you only need to maintain this diet for 2 weeks to know if it makes a difference. Some say 2 weeks, others say 4. Feeling a little lost in this forest right now.
apparently decreasing omega 6 & increasing omega 3 greatly reduces inflammation, which is part of this really annoying condition. The diet doesnt take too much planning – my partner is vegetarian & Ive noticed he reacts if I make him stuff with too much cinnamon or salicylates, so I am aware of the high stuff & avoid, low stuff is okay & moderate to meduim foods I err on the side of caution, also if you have smaller portions in theory its less salicylate!! I have a bowl that the size of a clenched fist which is apparently how big you stomach is supposed to be, so no more feeling bloated. And when I get itchy, blocked nose, restless legs etc I just stop eating & drink lots of warm water. Exercise helps as it helps to pump waste from your lymphatic system. Its weird but all my hard work comes to nothing if I stop taking the vitamin supplements, it seems to be vitamin B group that keeps the chronic fatigue at bay, you have to careful – to much & you cant sleep at all. I wonder if it helps with the salicylate intolerance too. The strange thing is that sometimes I can eat something muitiple times & Im fine & another time I’ll eat it & have an asthma attack or sinus reaction or hives. It just doesnt make any sense.
Ok, that’s interesting, particularly the bowel size. Did you say you get B12 injections? Who is overseeing all these things for you to ensure your diet and supplements are balanced. Fatigue has been a problem for my daughter, partly due to interrupted sleep – her nasal polyps and such.
that should be bowl not bowel size!!
I take Multi bionta, magnesium, msm, I also take selenium 50ug & coenzyme Q10 as I was having thyroid symptoms – particularly if I eat gluten (there is a link) I take biotin 1000ug as my thumb nail fell apart & biotin helps to grow new nails & connective tissue. Choline & inositol from holland & B for lipid metabolism & more importantly liver function – it also gives me really cool lucid dreams! Now the important anti fatigue & its also somehow helps with allergic reactions: B complex which has B1, B2, Niacin, B6, folic acid, B12, pantothenic acid – it is all one tablet & is 100% of daily recommendation I take half a tab a day. I take a quarter of a tablet of a high strength vitamin B which contains high doses of B6, folic acid & extremely high doses of B12, I have fiddled around & find the current 1/4 tablet of high dose effective it also gives me the option of increasing or decreasing it for optimal effect. It means the B12 is approx 125ug, & B6 3.4mg. The other thing I take for severe mood swings is Niacinamide – 1 x 500mg capsule a day. I no longer have crippling fatigue, horrid mood swings, depression & am managing to tentatively start a business – something I wouldn’t have dreamed of doing a short while ago. Even when I took St Johns wort & red clover I never got rid of the fatigue & had this much control over my head. It was like being on a roller coaster -a normal day, a tired day, a manic day & then two full days in bed sound asleep & depressed. Its no way to live. I gave up on the Drs some time ago, I will go to them for blood tests or if something really strange or bad occurs but apart from that the only way for me to get well & stay well is to be self aware & constantly monitor my food supplements & exercise & keep making adjustments. Also avoid stress at all costs, for me it is a killer.
I’m curious if anyone’s allergist has suggested using Xolair? My daughter’s allergist here in Toronto wants to put her on this drug for her nasal polyps which would be an “off label” use of the drug. They have 240 patients who have used or are using it, many of whom have chronic urticaria and severe asthma, but they say it has been useful to treat the symptoms from nasal polyps for people with AERD. Some patients have had remission, others a lessening of symptoms. Some have used it for 4 months and stopped, others for a number of years. The drug came on the market in approx 2009.
Despite this recommendation, we’d prefer to try the aspirin desensitization first. The allergist doesn’t have much experience with desensitization as an effective tool for nasal polyps for AERD patients.
Anyone have any thoughts?
Years ago I had a very pushy ENT specialist insist I take Montelukast, but I checked out the side effects & declined. On reflection Im glad of this as Montelukast has since been suspected of having a link to Churg Strauss. I’m worried that drugs could make the short term symptoms reduce, but perhaps cause long term effects that no one is yet aware of. I have also had several periods of dangerously high white blood cells which I was initially told was Churg Strauss but now the medical profession seem unsure. Had I taken the Montelucast I would now be wondering if it had caused the auto immune problem. Im also extremely cautious of pharmaceauticals due to the reactions I have, So far Ive reacted badly to antibiotics, oral anti-fungals, sleeping medication and diazepam, the reactions range from all hives everywhere to pounding heart, nausea, violently angry & not being able to breathe.