Thursday, July 24, 2008

My experience with Allergies and the cure discovered...

I am a severe sinus allergy sufferer for 9 years now (as of 2008). My allergies started when I lived in New York City in the late 90's - I was in my early 30's. I now live in North Florida near the ocean and am in my early 40's. I enjoy the ocean, have a boat and fish every chance I get, active tennis player with my 10 year old son, and generally get out as much as possible. Somewhat overweight - but not obese. Just the typical beer belly so many of us men earn as we get older.

However, sinus allergies have caused severe asthma and personal lifestyle difficulties to an extreme of near psychological proportions. I have such discomfort at times of sinus 'attacks' that I literally want to consider ripping my nose out despite the aesthetic consequences. It is bang-your-head severe allergy suffering.

I am so severely allergic that my sinus cavities throughout my head have revolted by growing grape-like obstructions in my nose called POLYPS. I have hundreds. These polyps prevent me from breathing well, I can not smell a thing, and cause great discomfort when blowing my nose or sneezing. My ability to taste is reduced some 90%. At any given time one side of my nostrils are completely swollen - closed off from air intake due to swelling polyps. Polyps are evil.

Allergy skin test say that I am allergic to pollen, grass & weeds. Severely allergic to cockroaches, and minor reactions to other airborne environmental pollutants. Nearly all unavoidable factors on planet Earth.

Pollen season does cause me to sneeze - but that's it. But alcohol causes my sinuses and polyps to swell severely and will last for days. That's right: I can not drink a sip of alcohol without completely going into a severe allergic reaction. Even O'Douls cause me days of discomfort (Yes, O'Douls DOES have some alcohol).

Six doctors later, immunotherapy for 4 years, $600 in drugs a month (co-pay amount!) and guess what:


Lets review the drugs: I have been prescribed (all current prescriptions) Singulair, Advair, Clarinex, Nasonex, Astalin, Pulmicort, Flonase, & Nasalcrom. None of these drugs are in any generic version!

I also sometimes take Psudophedrine & Prednisone (which helps the most) and Claritan D and/or Zertec to boost anti-histamines. These do come in a generic versions and are relatively inexpensive. But they are short-live bandaids.

Prednisone is the most effective drug - period. Seven days of that and all my polyps shrink, my asthma clears, and I can smell and taste. I still am unable to drink alcohol, but at least can function normally. Problem is that prednisone has so many negative side-effects, that daily intake will ruin your life in other ways. Doctors will only give it to me 3 times a year and it only lasts 3 to 6 weeks. The rest of the time I suffer.

I have been participating in immunotherapy now for 4 years. It was aggressive - 2 shots a week for 75% of the therapy cycles. I went on maintenance one year ago. I have now ceased the therapy sessions due to a lack of insurance coverage and time needed for the therapy. Besides it wasn't working anyway so what's the point?

With all these drugs running through my liver, kidneys and bloodstream, I began to really panic that all this was going to effect me one day down the road. How can the body take all that for so many years? Maybe I am naive, but it scares me. There were stints where I would stop taking the drugs out of fear of side effects, but after severe attacks I would go back on them not knowing if they are helping or not.

But one day recently I had a epiphany: What if these allergy attacks are not caused by environmental reasons? What if they are caused by some other reasons?

I started to noticed that when a weather-related cold/warm front comes through the area I get worse. Hmmmm...

I then noticed that high-stress at work cased me to get worse. I then noticed that physical exercise or adrenaline subsided my symptoms. Even playing a intense, exciting highly-mental video game with my son caused my symptoms to nearly disappear!

Was it the adrenaline from the excitement? Was it the mental forgetness of the symptoms? I don't know, but I could find no one on the net who could corroborate my experiences.

I started to do research.

Then I found an Australian paper that exposed something called VMR, VasoMotor Rhinitis. It is a non-allergic sinus disease that is not necessarily caused by pollutants, but by weather, stress or other mental prospects. It can also react with allergic rhinitis. This enlightened me and I began to search deeper.

Then came the bomb I was looking for:

The Vidian Nerve is a evil little guy that sits behind your nasal cavities. It is widely published that stimulation of this nerve causes histamine and mucus production (this was discovered in the early 60's).

And guess what:

When you cut this nerve it all stops!

That's right, a Vidian Neurectomy stops sinus rhinitis symptoms in as much as 90% of the patients who have it performed! It is concidered minor surgery and effective. Low and behold I read that this procedure was popular in the 80's and 90's to relieve allergy disease Nationwide and concidered completely worthwhile with no side effects. BTW - while the doc is in there cutting the evil Vidian, they can also clear the sinus polyps - and viola - your cured! There is even a YouTube vid showing the proceedure...but it's not very fun to watch.

So I go to get my Vidian Neurectomy and singing all the way to the doc's office. But I found something odd - NO ONE WILL TALK TO ME ABOUT IT. No doctor, no expert, no allergist, no nobody. They all claim stupid to the procedure or just plain refuse to do it on the grounds it may not help! Hello? Have any of you doctors read something I haven't?

So why won't any ENT or any doctor, speak to me about it?

Because of the drugs.

I believe that the Vidian Neurectomy was discouraged in this country when all these antihistamine and asthma drugs came to market.

I started to put 2 and 2 together and came up with greed. I started to think - if I were the doctor I would say to myself: "Why would I take the risk of performing a 10 year old extinct surgery on this guy when he is willing to continue all the drugs I prescribe him? My pharm reps are happy with my prescription levels and this guy has got most of 'em!"

I am not calling it a conspiracy, but it is really suspicious that when a cure is discovered for a severe disease and then stops being used right when a bunch of high-cost drugs are introduced - it makes you think: WTF is going on here?

Now granted, not all the drugs I was prescribed came out in the 80's & 90's but many did. Also, I am a severe case, it is reasonable to think that many of these drugs can be used in moderation to cure people on a individual basis. But to prescribe all these pills and steroids to me and not introduce the Vidian Nerve concept is either deliberate, or plain incompetent of all these medical professionals.

So hear I stand, uncured when there is a cure out there, suffering daily, and faced with a ton of drugs to bandaid my disease.

Time to act on it...until further notice.


Gockamo said...

I have terrible allergies as well. I was skin tested and it seems that I'm allergic to pretty much everything out there, indicated by large round whelps on my back. I'm a professional classical singer and it's vital that I don't suffer from these allergies to perform. I hope you can find someone to perform this procedure. What about medical tourism? I've heard of many people going abroad to have vital surgeries done at a fraction of the cost, especially when it's life altering. Perhaps you should look into this. Keep us posted. I'd love to hear how the procedure goes if you decide to go through with it.

GrundleSnuggler said...

Where do you live?

I've been looking into the procedure as well. Vasomotor Rhinitis isn't some little know condition there's loads of info on it (though little on Vidian surgury). My allergist told informed my about it on my first visit.

Anyway, your condition sounds pretty crappy but I'd be hesitant to percieve the surgury as a magic cure-all to your affliction. You tested positive to allergies. Vasomotor rhinitis is different from allergic rhinitis, and while it's possible you have both, cutting the vidian nerve will not relieve your allergic rhinitis. (vasomotor rhinitis does not usually result in polps). Insurance will probably be reluctant to cover the procedure.

Still, if its a combination it may help some. Post if you find a willing doctor

MsWanda said...

Thank you for this site, I suffer from the same ailments and you are right. I can't seem to find a doctor that will perform this procedure. And I have also had an allergy test and it was found that I wasn't allergic to anything. I live in the Midwest so and so as the weather change so does my sinus condition. I'm also suffering from the post nasal drip which causes foul odors as soon as soon as I open my mouth; talk about embarrassing. I hope and pray that suffers like ourselves are able to find help real soon.

jana said...
This comment has been removed by the author.
jana said...

l feel your pain l am a vasomotor rhinitis sufferer for 11 years now and it s getting worse l hope you will find a doctor that does the surgery because l can t. Keep us informed yo it s easier if you know you are not alone.

jana said...

Is there any progres? Did you find a doctor that vill do the surgery?