Cyclelops, I was diagnosed with abdominal migraine about ten years ago at Johns Hopkins. As a child, I had stomach pains and migraine headaches started at puberty. After the Hopkins diagnosis, I was referred to a headache specialist and prescribed the whopping dosage of Verapamil (480 mg). Prior to Verapamil, I was on a Beta Blocker for the tachycardia. Verapamil is one drug I have been tapering for tomorrows testing.

I have also been diagnosed with "complicated' migraine as I can have paralysis in my face (left side) and my eye waters and I have trouble talking. Also, parts of my body feel huge, not painful, just huge and out of proportion... Also, I have severe chest pain. I have had some help with nitroglycerin in the past from the pain. It is indescribable. I would imagine it is similar to what a heart attack feels like. But everything goes back to normal after an hour or so. Also, dilaudid did work for this pain (when I had some).

When I am in a flare, I often find it difficult to use my arms (as if there is a temporary paralyzing) though it is swift and passes quickly.

Do you think the abdominal migraine/complicated migraine be related to the SFN and autoimmune issues? Or, is it coincidental?

Mere,

I have suffered severe autonomic dysfunction for years. One thing that caught my mind in your last post was the chest pain. I'll assume the did a routine work up for that?

My thought is whether you could be having cardiac spasms (vasospasms). These are actually an autonomic dysfunction caused by spasm of any one of the arteries around the heart. I have these frequently and truly understand how they feel just like a heart attack. nitro is my best friend!! In a sense they are like a short lasting heart attack as the artery can momentarily collapse during spasms, thus giving you that crushing chest pain and other symptoms.

They can be extremely difficult to diagnose because they are hard to catch in the act by echo or heart cath (and the cath itself can cause one so not the best diagnostic tool either). Diagnosis is usually more clinical according to my cardio at Johns Hopkins. I do have some indicators with significant heart wall dysfunction during stress echo, so between that, clinical, other autonomic dysfunction, and ruling others things out, we've come to this conclusion.

I'm certainly no doctor, but if you are having other autonomic problems, then maybe the chest pain is related to autonomic vasospasms.

en bloc, thank you for sharing... this is a very logical and probably a correct assumption. I understand you are not a MD and are sharing your experience. This has happened enough times (I have been ill for 18 years following a bad viral pneumonia), but has never been documented or explored.

I assume it is fairly benign... fortunately, it does not happen too often. It is usually present with the mind crushing migraines that precede the flare.

When I first became ill, I was given nitro by the er and it did work.

Other than that, I have noticed a wave of heat/adenaline(?) flushing the area of my chest and heart just prior to an attack. Sometimes, I even have irritation in my chest for a few days after this occurs. Perhaps it is some sort of aura? Who knows.

Such weird stuff. Sounds like you have good care.

Mere,

It IS neurological, but what is causing the nerves to deteriorate is the million dollar question.

My neuro feels there is both a hereditary AND autoimmune problem in my case.

Likely pain is caused by ischemia due to massive vasoconstriction.

I too have the sensation that parts of my body are huge, AND, interestingly, I remember as a kid, really young kid, I would have a similar sensation with almost a pulsing of the environment around me....really odd. Sounds like fruit cake stuff, no??

I passed out at age 8. Had horrible nosebleeds....my nose was cauterized so much it is charcoal on the inside.

So, yes it is neurological.....yes, it can be autoimmune....and vascular. Unhappy nerves>>>unhappy blood vessels>>inflammation>>vasoconstriction>>ischemia> >unhappy nerves>>

The autonomic nervous system rules the world.....when it is unhappy, the whole body is involved....every organ. How the autonomic nervous system gets in this shape can be from any number of processes.

Chicken or egg??

Thanks Cy, I am being a bit of a drama queen . I suppose I am a bit on edge... testing is tomorrow. I hope so much that some conclusions or answers can be reached. The time frame for "things getting better on their own" has passed. After all this time, disability - physical, emotional and monetary - and frustration, I want to know why. And, if possible, stop it. Or, at least try something new.

I realize this may be asking too much, but I can hope...

Thanks always for listening and helping...

Meredith

Mere, YOU are not a drama queen!

You have valid concerns. This is a frustrating condition. I have slipped quite a bit in the last year, and it is disconcerting. You have every reason to be concerned, and I am glad you are getting this testing done. This disease has some really odd symptoms, and every time I get a new one, I go thru a process where I do not believe myself initially. I have found some useful info at the Dysautonomia Information Network. (Altho this forum here is my 'home' and I have yet to find a comfortable place other than here.)

We have a very similar syndrome. I will be interested in what they have to say about your case.

Thanks Cy,

The testing went well. He did the breathing studies and tilt table. No results yet. He said probably in about two days, he needs to calculate the results.

I felt awful during the breathing studies and after standing for 45 minutes (or so), the migraine started, hand and feet pinching (fullness), some shaking and visual graying. I did not pass out though.

His only comments for today were that my BP is too high after standing on the tilt table and that he noted the flushing in action.

I will know more later. BP has been scary high since d/c the verapamil. Last night I registered 167/127 and 165/120. Back on the Verapamil for now. At least until I get some answers and he can switch me to a beta blocker.