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Chronic Migraine (Chemical / Scent / Food / Weather Triggers) and Recommended Clinics
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smith_brad posted:
First time poster, and I apologize for the length of this. I've been reading various discussions on and off in this forum (and many others) and would like some advice on how to deal with my increasingly desperate situation.

I've had migraines since I was 4 years old (now 33) and they've grown in frequency over the years. They reached episodic status by the time I was in high school and really blew up when I started college.

During that period, I learned about biofeedback and lifestyle / behavioral modification, which helped lessen the frequency. A combination of Fioricet (w/ Codeine) and Midrin was my magic non-frequent combination to help me maintain a professional life in I.T. Flowers, some scents, chemicals and weather changes were always a problem, but I was able to cope.

However, in the past 10 months, my attacks have reached chronic status, a process that took about 2 years to really peak. It began with a complete intolerance for any form of alcohol. Then, eating raw onions would trigger a near immediate 8-10/10 migraine that would last for days.

Soon after, even the smell of raw onions would trigger the same reaction. Many flowers, most fragrances, and chemical smells now trigger the same type of attacks, and the multi-day migraines have now taken over my life.

Living in AZ, the weather changes during the summer are hellish. My situation is now desperate and my neurologist has recommended an inpatient stay at MHNI or a similar facility.

When this all really began to reach the chronic status, I was in great shape, eating very healthy and trigger-food-free (after the onion incident) and the bottom fell out. No injuries or anything like that to
coincide. I was taking my Fioricet / Midrin very sparingly since I was familiar with the problems of MOH / rebound.

I have been on a full vitamin supplement regimen for months (B2, B12, Magnesium, CoQ10, daily multivitamins), avoided trigger foods (nearly ALL of them, even the ones that have never been a problem).

I have tried several different triptans (very bad reaction), Botox injections (expensive, unpleasant, and useless), Verapamil (awful), Inderal, Nortriptyline, and several other preventatives that are escaping my memory at the moment. I am now having to take Klonopin to help me sleep, which is marginally successful. In addition, I've had to add hydrocodone to my list of meds as well.

With the frequency and severity of pain, I know that probably 1/4 to 1/3 of my lower-intensity attacks are from rebound, but when the pain is so frequent, so severe, and lasts for days at a time, I needed the additional firepower just to cope. I'd go stronger on the narcotics, but I know that is usually a losing battle that only gets escalated in potency / dependence.

I've had CT scans, MRI, MRA, MRV: All came back clear. The scent / chemical triggers are so consistent that I only leave the house for doctor appointments these days and the anxiety / depression is really starting to take hold.

My quandary: From what I've read (after a LOT of digging), it sounds like MHNI and other similar clinics don't adequately provide relief for my specific set of triggers to justify the thousands of dollars that I don't have. I've been practicing the biofeedback, relaxation, and other alternative therapies they espouse for years. There's no relaxing your way out of sudden onset attacks like I have.

The symptoms I have (and have had for the past 29 years, with increasing frequency) do not seem to coincide with conditions that respond to nerve blocks or similar therapies. I've seen enough negative feedback on the Omega Procedure to dissuade me from pursuing that.

Does anyone with similar triggers / issues have any advice on a specialist or clinic that might be able to help me? I'd rather not roll the dice on MHNI at this point, but I'm growing increasingly desperate since I have almost no quality of life.

Thank you very much to those who trudge through this wall of text.

Brad Smith
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jadeopaliris responded:
Hi, Brad.
I'm going to respond to your long post with an even longer post myself.
I totally empathize with you. I'm sorry that things have gotten worse for you despite what sounds like pro-active and consistent treatment over the years.

I understand quality of life being diminished with multiple and severe migraines. I have a similar situation where foods and fragrances will now trigger multiple migraine days.

Onions are also a huge no for me. But my main trigger is soy. As you say with onions, even smelling soy will trigger an awful migraine and also a weird overheating where my temperature will soar. Doctors are really unable to explain the temperature increase.
But since soy is in everything (as Vitamin E)—candles, shampoos, soaps, lotions, perfumes, colognes, etc.—I can't venture into public places either for fear of an attack.
Restaurants are out of the question because most places use vegetable oil, which is soy, and just smelling it from the kitchen or other people's food starts a days-long migraine along with vomiting and other symptoms.

But my main trigger is light. I am "allergic" to sunlight and fluorescent light, so in addition to fragrance/chemical triggers, this makes going out impossible.

Anyway, that's my story, but I wanted to respond to a few things in your post:
1) supplements. I was just put on magnesium and B vitamins, too, and my neurologist told me that they would take about 3 months and a week to work. So she said if they didn't seem to be doing anything, to just hang in there and wait until that period to access their effectiveness.

2) tyramine. It sounds like you know a lot about food triggers, so I'm sure you know all about tyramine and how to avoid it. But I just wanted to add that since I miss onions so much, leeks and shallots are great substitutes that are low (or lower) in tyramine. For me, these do not trigger my migraines.

3) The biggest thing that has helped me is to find a good neurologist. Not very many understand migraines. I went to the Migraine Research Foundation and found neurologists in my area that are "cerfified in headache medicine." This has made such a difference.

4) I don't know whether NHMI would help or not.
I went to Mayo Clinic over a year ago and they were the ones that educated me about tyramine, foods, triggers, etc. They were the first to diagnose me with "migraine syndrome" as up until that point I didn't even know I was having migraines. I went to Mayo for my light sensitivities, food allergies, vomiting, what I thought was "headaches," and found it was all tied together.
So another thing to check out, if you haven't already, is the Mayo Clinic in AZ.
Of course NHMI is more specialized, but Mayo can offer sliding scale fees that don't cost a fortune, and will give quite a bit of advice and assessment over the phone to see if they could help you at all before you spend a dime or thinking of going there.

I'm pretty new at this since I only received my diagnosis a year or so ago, so I'm still trying to familiarize myself with all possible treatments, medications, alternatives, etc.
So you know way more that I do about this, but it still sounds like we've tried a lot of the same things.


Triptans did help me somewhat, but I suffered from some very bad side effects, so I'm cycling through the various triptans to see if I can find one to help. My current one is Zomig.
Also have just tried Botox, and the jury is still out on that.
I've been told one of the most helpful things is biofeedback. I was prescribed biofeedback over a year ago, but because of the long waiting list, haven't had it yet.

Well, I really feel for you, and hope you find some relief and/or some good advice that will lead to relief.
Best to you.
 
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smith_brad replied to jadeopaliris's response:
I really appreciate the time you took with your response. I was actually inpatient in the hospital (and traveling back and forth from MHNI) so I didn't get a chance to respond.

Some of my daily attacks greatly diminished in duration as soon as I got to the cooler Michigan weather, which was odd since it would normally work in reverse for someone coming from AZ. Since I just returned home, the only worry is that the environment will rubber-band me back to my previous intractable status, but only time will tell.

As far as soy goes, that's a hard trigger to dodge, and since reading your post, I've been dwelling on how tough that must be for you to deal with. As you mentioned, that stuff is literally in everything these days. Keep Calm, stay indoors and have your sunglasses nearby.

I'll have a better feel for the effectiveness of the MHNI treatment, but I can say that they are a very thoughtful, VERY knowledgeable staff from the top down. They've seen a lot of crazy stuff. Unfortunately, they don't have magic wands for everyone.

While we did bicker about the efficacy of some abortives, the plain truth is that you simply have to ride the pain out as much as you can as you go from one preventive to the next without falling back into the narcotics trap. And THAT is a feat much easier said than done, and a non-sufferer really cannot understand the enormity of that problem.

While MANY respond almost immediately to the medications and lifestyle changes I had made years ago, there are some wildcard patients out there.

Their detox program is great if you're stuck in the narcotics route, and I'm just waiting to see if my more unusual diagnoses and treatment options will start having a greater impact in a month or two.

I'd say stick to the supplements (been going on mine since April), and definitely get some info on biofeedback. It's great for some headaches and calming your body down, especially if you get in a mass panic to get away from a particular trigger. It helped me for years with tension headaches, and some caused by sleep deprivation or irregular meals. It's a good tool to have in your kit regardless.

As you know, the scent trigger issue can seem like it's impossible to deal with. People start asking if you're agoraphobic, etc. and then you have to play the "Here's why I can't leave my house" game, which is never fun.

I did leave MHNI with some new preventatives that I'm feeling positive about, and I do have an awesome local neurologist. While it's been a rough ride since the normal tricks haven't worked for me, we just have to keep slogging through.

The more info you can give your neurologist, the better. With triptans in particular (along with Migranal, DHE-45 and other ergot based drugs), be very upfront about what the side effects are in case you have some sort of unusual vaso-reaction other than the plain-jane vaso-dilation that most migraineurs get.

I'm not a doctor by any stretch of the imagination, but I've been on this road a long time, and my well documented and vividly described side effects radically changed the course of treatment given by the staff in Michigan.

Thank you again for sharing. I know how awful it is to be caged up in your house because you know the migraine monster is lurking outside.
 
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jadeopaliris replied to smith_brad's response:
Hi there.
So glad that you got to be treated at MHNI. Sounds like you were in good hands and are experiencing a little relief so far, so that's great.
Isn't it awesome to be with doctors who don't give you the side-eye and aren't clueless on how to deal with these medical conditions?

I agree about just trying to ride out the pain as much as you can and staying away from narcotics. Although I was prescribed some -- both for migraines and for some recent spinal surgery for c-spine issues -- I found they made my headaches worse in the long term in frequency and I developed a whole host of other side effects, so I got off of them.
But I take triptans more often than I would like. It really cannot be helped when you get to a certain point and are just sick of being in pain all the time.

Thanks for the advice. I'm going to push harder for the biofeedback.
I have continued the B vitamins, but ended up having to ditch the magnesium. It just made my headaches worse and gave me constant nausea. When I talked to my neurologist about this, she explained that it helps most people, but that each person is a unique individual who reacts to treatments differently. Too many doctors overlook this fact.

Something that struck me about you mentioning going out of town, is that when I leave California (where I live) to go to cooler climates, I get migraine relief. It makes me wonder why — the desert air? barometric changes? Humidity or lack thereof? It's a mystery to me.

As far as not going out, I've gotten very used to it by entertaining myself with hobbies, taking care of my pets, and learning as much as I can about my condition(s).

It's a pain- literally! — to be dealing with this, but I guess we all have to keep fighting the good fight.
Best to you, and I hope you continue to get even more relief from your symptoms.
 
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mamajeno replied to jadeopaliris's response:
Is the MHNI you are referring to in Ann Arbor, Michigan.
I went there for years. You can't find better care than they give. After 45 years of migraines (hormonal) finally leaving me, they have returned with force. I live in Michigan and have had wonderful phone consults with a Nurse at MHNI.
Just wanted to add my comments on what a great facility this is.
I was fortunate enough to have Dr. Joel Saper as my personal Dr. for years. Good luck to you.


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