Autonomic Testing

mrsD · 02-08-2011, 07:03 PM

Carcinoid can grow for over 20 yrs.... before symptoms are noticed.

There is only one serotonin, but many receptors for it.

Mere · 02-09-2011, 03:28 PM

Quote:

Originally Posted by cyclelops

Also, the thing I keep in mind is these episodes are superimposed on the PN.

Autonomic issues are not rare in spinal injury and in head injury. I did not have these until I was 36 years old.....after that, I have gotten on average 8-15 per year. Using my arms above my head always brings this on....as does a 'window washing' movement. SSRIs bring it on. Several bad stressors in a row will bring it on.

Mere, I may turn red, but don't know it, since I retreat to the dark....I never noticed my color....but nasal congestion and 'migraine' are familiar, but to the extreme.

The condition is alternatively listed as Autonomic Dysreflexia or Autonomic Hyperreflexia. I would say I am more hyperreflexia....altho, constipation or filling myself a bit too much on food, will bring it on. I have not noticed a relationship to my bladder function.

I was cracked head on by a truck, both of us going roughly 55. It was most unpleasant and altho I saw a light, I met no religious figures.

I hear you saying 'migraine' Mere, and I always told them that too....'eh, it is one of my 'migraines'....I have seen people with migraines, and what I am having is not it. I also do get some quite high BPs during these...and some relief, not much, by dangling my legs over the edge of the bed....head up helps pain some, but, I am so sick, I can't stay sitting. The nerves on my head are so sore that it feels like my pillows are concrete block.

I should probably go to the academic center ER, but my problem is not getting past the ER. Grrrr. Usually I am so sick, it is the local ER which isn't far away, or I lay in bed incapacitated with my bucket. Now that my K+ levels are unstable, this is getting to be more of a concern. Since I went on K citrate, my last lab was normal....so that is a factor.

It is so complex, I don't if they will ever get to the bottom of it.

When I was 'hit' so hard with one of these flares, I was hospitalized. I had severe abdominal pain and I was diagnosed with gastroparesis. What was ignored was the brain splitting migraine, severe itchiness all over, bladder dysfunction (inability to start the flow) and extremely low BP. For months later, I had numbness in my fingers and arm, head and inside my mouth. I did have bad POTS at that time, but it and the "numbness" subsided. But, every time I have an onset of dysautonomia (or whatever it is), I get a mind splitting migraine (ER type and one that lasts for days and then mildly for months) and I get the pain in my upper arm and tachycrdia. The flushing, GP, severe fatigue, pains and intermittent tachy are a daily event.

Importantly, eating always brings on the flushing as does alcohol.

WTF is all I have to say...

cyclelops · 02-09-2011, 08:26 PM

I used to be able to have a drink or two....NOW I do not DARE drink, lest I get extremely ill.

You may want to check out 'Cyclical Vomiting Syndrome' it is basically an abdominal migraine....this is all 'Autonomic Storm' in my opinion. Migraines are associated with dysautonomia. I imagine this is all on a spectrum with some of us having overt PN and severe autonomic symptoms, and others with 'migraine'.

With my 'headaches' my entire upper body gets nailed. From the collar bones up, the muscles are hard as a rock and exquisitely tender to touch for days afterwards...up to a week. Then of course, the puking splits your ribs. Your case is very similar to mine....except I have an elevated ANA....which you may still get.

Mere · 02-10-2011, 11:43 AM

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?

en bloc · 02-10-2011, 12:18 PM

Quote:

Originally Posted by Mere

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.

Mere · 02-10-2011, 02:38 PM

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.

cyclelops · 02-10-2011, 04:43 PM

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??

Mere · 02-10-2011, 07:17 PM

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

cyclelops · 02-10-2011, 08:15 PM

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.

Mere · 02-11-2011, 02:05 PM

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.

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