Friday, September 30, 2011

What am I Allergic To

So another random anosmia post! The latest on the anosmia front is that after almost 40 years of living in a very dry southwest USA climate, the past 2 years being in a hugely populated, polluted, dusty and hot area of southern California, my wife and I have thankfully moved to a smaller community just north of San Diego and for the first ever, are 3 1/2 miles from the beach.

Wow...talk about a run on sentence!

So we are living near the beach where the temperatures got into the high 80's maybe 3 times during the entire summer and we are loving it.

When we first got here in the spring, I went to yet another ENT to have her take a look inside my sinuses. Of course she confirmed, and for the first time I actually saw the polyps in my sinuses. She was not so insistent on surgery but of course she said that it was an option.

She suggested two things. One was to use budenoside rather than Flonase or Nasonex or Nasacort and prescribed it to be used with a nebulizer twice a day. Well, that lasted about a month. I just could not deal with standing there with this nebulizer for 5 minutes or so twice a day.

The other thing she suggested was that I start my allergy shots again and felt that I might get better relief this time around. I told her I did them for almost 3 years and 1, my anosmia did not get better and 2, the polyps still kept recurring. She said she just felt she should test me again. So I asked her "what am I allergic to" at this point?? I felt that after 3 years of previous allergy shots, it almost just sounds like a money grab. She felt that doing it with an ENT might be better than with an allergist.

So I'm debating yet again whether I want to go through this. The drive down to see her, the drive back up, the expense etc.

Other than that, nothing much else to report. Best to all who occasionally read this.

23 comments:

Trucker said...

Sounds like the doctor is refusing to admit being beaten. Yes, that is turning you into an ATM. Might be her foolish pride, or simple greed, but you are being chumped.
I've been circling anosmia treatments for five years now and every doctor is like that - let's just keep doing what failed until you go away - I will never tell you to stop treatment and admit failure.
Doctors think it's okay to treat people this way, but it isn't. It's wrong.

Trucker said...

Sounds like the doctor is refusing to admit being beaten. Yes, that is turning you into an ATM. Might be her foolish pride, or simple greed, but you are being chumped.
I've been circling anosmia treatments for five years now and every doctor is like that - let's just keep doing what failed until you go away - I will never tell you to stop treatment and admit failure.
Doctors think it's okay to treat people this way, but it isn't. It's wrong.

Kimber Yoga said...

Hey, I just found your blog. A friend led me to it because I've been experiencing anosmia for about a year. We now think it's aspirin-induced asthma, which weirdly, you can develop without exposure to aspirin. Have you ruled that out yet for yourself? I haven't developed polyps yet, but apparently they are extremely common in AIA. Not all ENTs know how to diagnose AIA. But you are close to Scripps, and that's where they've done a lot of research on AIA. I found it so helpful to talk to an AIA specialist.

Snuffy in Sequim said...

I have recently had sinus surgery and after 10 weeks I still cannot smell and my taste is iffy. I can taste things like apple juice but not most other things. I too had a year of allergy shots and when re-tested, I showed no reaction. All the same, I still have a runny nose and sound like I have a cold when I talk. I take one adult aspirin per day. Any comments?

Kimber Yoga said...

I saw four ENTs, an allergy specialist, and a pulmonologist. None of them mentioned aspirin-induced asthma as a possibility. It's also called Samter's Triad, and many other things. Most doctors only heard about it in med school and have never diagnosed a case of it in their lives. The three of the main symptoms of it are: sinusitis, nasal polyps, and asthma. Anosmia is also very common. The weird thing is, you can get it by exposure to aspirin, but also other NSAIDs, like advil, and worst of all, it causes a metabolic disorder in the body that continues in the absence of the allergen! Once you've got it, you don't have to be exposed to NSAIDs to feel sick with it all the time. There is something called aspirin desensitization that they do for some patients, but mostly it's controlled by topical steriods like Flonase, and sometimes leukotriene blockers. I only found out about it because my partner kept Googling different combinations of my symptoms. I'd been taking very small doses of ibuprofen for years. Once I stopped taking it, my symptoms have been easier to control with the steroids, while before, they hardly touched it. If you're curious about AIA, search some of the medical articles online and see if it seems like it applies to you, then ask your doctor about it... bring them the article, 'cause they probably know less about it than you do!

Valerie said...

I have had allergies and asthma ever since I was 3 years old. I developed anosmia after taking Zycam around 2005. I have been to an ENT, had a surgery to remove nasal polyps but without success. One doctor put me on Prednisone and my sense of smell came back and lasted for a couple of months. The doctor didn't like the idea of me taking Prednisone so he suggested a Kenalog shot which is a derivative of Prednisone. Now I take them approximately every 4 months and I have regained my sense of smell. The steroids have some big side effects, but to me it is worth it to smell again and taste my foods. I hope this can help someone!

Brindley75 said...

As an ENT physician I can tell you that every ENT knows about AIA or Sampters triad (what ENT's usually call it). It is a real obnoxious problem to treat and requires multiple modalities to treat. Usually surgery to remove the polyps and open the sinuses, allergy/immunotherapy to treat allergens or to perfrom aspirin desensitization, and nasal steroids/irrigations/nebulizers. The main problem is that the surgery is only one of the steps, but often the patient neglects the other steps. Even if the surgery returns smell, it won't last long once the polyps have returned. And even when patients do everything (irrigations/nebs/quit smoking/desensitization) etc, the polyps can still come back. It is a chronic condition like asthma or arthritis and patients may not realize it and think surgery will fix anything (it won't). Some people are having success with Zyflo (haven't used it yet) in recalcitrant cases. Recently authored a blog post on anosmia (not specific to nasal polyps) that you might find interesting. http://www.enttx.com/blog/nose/scent-and-sensibility Good luck. I know it isn't an easy condition.

Smooth said...

Even though this blog is sporadic, I wanted to share my own story for others who might find it helpful...

I have suffered from anosmia (from a sinus infection which also left me with bronchitis then asthma) off and on for about 14 months. The amount of time I can smell has been about 10% of that time, but interestingly I have been able to taste all along even though my smell is at 0%. Long story sort of short, after realizing the Drs (2 ENT and 2 pulmonolgists) had no real answers for me I tried a couple things. I am 3-weeks into the Whole Thirty diet (can google more for info on that) and I've added in some vitamins that are anti-inflammatory, but I think the item that is finally working is a weird comment I found elsewhere on the web... I have been putting a drop of cold-pressed castor oil into each nostril before going to bed, and in the morning. I know it sounds like quacky internet advice but I decided to try it anyway. I lie upside down for several minutes to let it get around - you can feel your sinuses clearing pathways as it moves through them. After about a week my sense of smell has started to come back - especially right after treatment. Each day it has been getting better. I've also had ongoing, severe sinus stuffiness (which I believe has actually been tied to asthma inhaler use - another annoying health story) and use Xlear nasal spray to help clear and moisturize my sinuses. I highly recommend this product too - has no side effects and helps get rid of any bacteria that might be deep in your sinuses. But to fellow sufferers of anosmia, try the castor oil - I am very happy so far with the results. I also recommend the diet I mentioned above to try to address the allergic underlying cause.

Home Body said...

Even though this blog is sporadic, I wanted to share my own story for others who might find it helpful...

I have suffered from anosmia (from a sinus infection which also left me with bronchitis then asthma) off and on for about 14 months. The amount of time I can smell has been about 10% of that time, but interestingly I have been able to taste all along even though my smell is at 0%.

Long story sort of short, after realizing the Drs (2 ENT and 2 pulmonolgists) had no real answers for me I tried a couple things. I am 3-weeks into the Whole Thirty diet (can google more for info on that) and I've added in some vitamins that are anti-inflammatory, but I think the item that is finally working is a weird comment I found elsewhere on the web... I have been putting a drop of cold-pressed castor oil into each nostril before going to bed, and in the morning. I know it sounds like quacky internet advice but I decided to try it anyway. I lie upside down for several minutes to let it get around - you can feel your sinuses clearing pathways as it moves through them. After about a week my sense of smell has started to come back - especially right after treatment. Each day it has been getting better and lasting longer. I've also had ongoing, severe sinus stuffiness (which I believe has actually been tied to asthma inhaler use - another annoying health story) and have been using Xlear nasal spray to help clear and moisturize my sinuses. I highly recommend this product too - has no side effects and helps get rid of any bacteria that might be deep in your sinuses.

But to fellow sufferers of anosmia, try the castor oil - I am very happy so far with the results. I also recommend the diet I mentioned above to try to address the underlying allergic cause. I tested negative to all allergies, but my blood work showed elevated IgE levels which can be caused from an immuno allergic reaction to improper food absorption and high Omega 6 vs Omega 3s ratio. A lot of info, I know, but these are things I have learned and have found very helpful in trying to figure this out. Health is not about adding in individual chemicals called "medicine", it's about treating our bodies well with food and lifestyle.

Bluegobln said...

I've been thinking about starting an Anosmia blog myself and I felt yours was inspirational and interesting to read. :D

Mine is congenital though ... from birth of course. Very different to be honest - from all I have read for people like yourself it is a devastating experience and loss, but for me its a way of life. I'm alien, there are flat out walls between me and other people, impassable walls of misunderstanding that they simply can't climb over (and I of course can only guess what lies on their side, climbing is futile on my end).

You seem to have experienced a little of what this is like, a taste of it if you will *ba dum tch*

I feel a deep connection to other anosmics, but I also feel like we're incredibly different - us congenital anosmics and those of you who have lost the sense.

Anyway - I hope you have safe journeys and good fortune! :D

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Kelly said...

Wow. Sometimes reading these things are encouraging and sometimes not. I'm a year into my seemed fate of the loss of my smell (and flavor of course). Went through the ENTs, second opinion, surgery denial and everything under the sun to not go on the operating table. Ended up having balloon sinuplasty in Oct. My senses have not returned, except for very rarely for maybe an hour or so. It's very strange, but most of my life is in a bland world except for those few rare moments. I'm allergic to the world, which has presumably caused this problem. I'm doing sublingual allergy drops and am regularly told to "be patient." Medical professionals are not sympathetic to this condition because they don't view it as life threatening. What about accidentally eating spoiled food? What if there is a gas leak in your house? People don't think about those things. I'm almost to the point of trying to find a clinic somewhere that actually does care about this condition, even if it requires me to travel and shell out some $$.

justmehere said...

I've been a sufferer of Samter's triad for 12-15 years. Nasal polyps,asthma, NSAIDS allergy. I've had the surgery and yes they grew back. I usually can't smell, and I'm stuffy a lot. The best you can do is try to manage the symptoms, and not let them manage you. I get a cortisone shot 2-3 times a year, Keep up on asthma steriods, and take a claretin-D daily. after my cortisone shots I can usualyy smell for a couple of weeks before it starts to wear off. It's an unfortunate condition to have but there really isn't a cure. It's amazing what we can learn to live with when we don't have a choice. good luck to all sufferers.

justmehere said...

I've been a sufferer of Samter's triad for 12-15 years. Nasal polyps,asthma, NSAIDS allergy. I've had the surgery and yes they grew back. I usually can't smell, and I'm stuffy a lot. The best you can do is try to manage the symptoms, and not let them manage you. I get a cortisone shot 2-3 times a year, Keep up on asthma steriods, and take a claretin-D daily. after my cortisone shots I can usualyy smell for a couple of weeks before it starts to wear off. It's an unfortunate condition to have but there really isn't a cure. It's amazing what we can learn to live with when we don't have a choice. good luck to all sufferers.

Kimber Yoga said...

I have some good news to share. My sense of smell/taste was gone and I was scheduled to get the whole sinus surgery thing. But then I met a new doctor. He put me on an intense regime of Advair, Flonase, and Singulair for 9 months, and my sense of smell finally started to come back last July! I'm still taking all the same meds and I've had my sense of smell back for almost a year. It's wonderful to be able to breathe through my nose again. I had nearly given up all hope, but this new doctor specializes in AIA and in Santa Clara, CA. He came from Scripps, where apparently they do a lot of research into AIA. It was a huge relief to find an expert who actually understood what was going on for me. Good luck to everyone who is struggling with this. I hope you find some relief.

Nicole Bernier said...

taste and smell gone sleeping for now..are you still here..?a drag when we can't smell and taste..

Nicole Bernier said...

please let me post..

Nicole Bernier said...

try hard to post..problem with smell and taste..would like to share..

Nicole Bernier said...

i will try again to leave a comment..thank you..

Kimber Yoga said...

Hi Nicole, what have you tried so far?

Just so you know, this blog post and comment thread are quite old, and not begun by me, but someone else. I think this thread was started 3 years ago, and it's not very active.

Nicole Bernier said...

i'm glad you feel better Kimber...

Anna said...

NAET is what i heard about amazing results for allergies. that is what i would try.

Anna said...

My friend had good results with NAET for her allergies