Autonomic Testing
 

I am finally being tested this Friday ... My flare is on the taper and am wondering if this improvement will change the test results. I suppose I always have dysautonomia, it is just a matter of degree. He is having me taper some of my meds for the test.

I have small fiber neuropathy, dysautonomia and some AI disease (probably ankylosing spondylitis) for some members who do not know me.

Precisely which of the ANS tests are they going to do?

Sheltiemom

Hi Sheltiemom. How are you. It's Anita from SjS World. First post and just trying to navigate the hugeforum.

Do you have AN as well? What aspects?

I don't think it will effect your test results. It is good they are tapering meds, some meds really mess things up. I imagine you will have a tilt, a thermoregulatory sweat test, qsarts, valsalva and heart rate variability testing.

I haven't had any in years, but I KNOW my autonomic function has declined significantly.

Hope things go well for ya!!:hug:

Mere,

It all depends what things are "tapering" and what meds you will reduce as for what might be effected. By in large if the dysautonomia is there, it will show.

Cycleops,

It's Anita...I finally figured out how to navigate a bit. Drop me a message. I searched, but have no idea how to do so.

Thanks guys... The tests you mention sound about right. He explained that the tests will point to what part of the autonomic system is defunct. I don't seem to have fluctuations in my BP as in POTS, but I do have significant increases in my heart rate when standing. Along with the other lovely symptoms I have mentioned before. He may also do a test to check the fluid in my eyes as I have seem to have sicca syndrome, although, my sjogrens titers are negative.

He feels it is autoimmune, not sure what specifically, but autoimmune.

My bladder has also been acting up a bit more (retaining urine) and he has asked me to have a dynamic flow study as well. I feel fortunate to see him, Dr. Khurana, he is an 'expert' in autonomic neurology.

Are you continuing to feel better Cy?

Meredith

Hi, en bloc (Anita) - small world. How are you.

Yes, do have some ANS dysfunction; namely, overreaction to heat and underreaction to cold. Sweat production down somewhat in certain areas only. Symptoms have gotten better over time, but probably still photosensitive. When the sun returns in spring will have a better idea about this. Thankfully, the NLD SFN has improved greatly without Rx meds.

Sheltiemom

Mere, I am up to baseline....not swinging in the trees by any means, but I can eat a banana and use simple tools.

I can at least listen to Moodscapes music :boy(music): and not flip out.:p Nervous system is calming down a bit. I still feel like 14.1 trillion pins are sticking me...oh, wait, that is the budget deficit....well that too.:p I can't tell where I end and other things begin. :BeamUp: Really, I will be fine.

Which brings to mind, how on earth does one ever explain this to others??? If one hasn't felt it, one can't understand it, no matter how good of analogies are drawn, right?

I would liken my last autonomic storm to sticking my head in a black hole, (I am nosey about string theory), and having my backside orbiting around at the speed of light.:eek: (And some er physician pulls out his algorithim and tells me that serotonin will fix this....oy vay....try to convince him you need dilaudid and a beta blocker. I tell them it's cheaper! I am one of the 'lucky few' who has too much serotonin, and I have many of these issues to begin with.) I did as Monty Python's characters in Holy Grail advised...'Run Away! Run Away!'

I do understand one of these times I will blow a gasket, and that will be that.

I don't have POTS. I have PLOPS (my term)....my heart rate goes up only to plop into the 40's along with my BP....unless I lie down to relieve my misery....at which time, all the fluid in my body decides to enter my head, grow my nose twice as big, at least on the inside, and makes my right eye play sibilant tunes....all in all, making my head too small to contain its contents, eventually forcing nerves to trigger esophageal spasms with concomittant vomitting (which by the way is an interesting experience, given the two should not occur at the same time in the physics of this universe). Oh, and everything constricts, trapping things in my head and holds like this for 36-48 hours, kinda like an affectionate boa constrictor on viagra hugged me and forgot to ingest me. He just kinda got stuck like that. Oh and my body that doesn't sweat, sweats 'generously'.


My entire family, all of my friends are on notice not to 'provoke' me in any way, and that won't take much, lest my next volley is in their direction.:vomit2: I won't warn my enemies.

If I seem a bit too amused by all this....my take on things is this: this is rare, there is no cure, and it is very misunderstood, so humor seems like the best perspective. It is not funny when it is happening, it is misery, and death seems a better option if one can't get dilaudid. I have cried 'Give me death or give me dilaudid' and I just get wierd looks.

It takes 3 days to recover from 2 days of misery, for a total loss of 5. I will be lucky not to have triggered another one due to lifting 10 shovel fulls of snow, to get my pregnant daughter's car unstuck in my driveway yesterday. Between me and my offspring, I figured, they are worth preserving.

Isn't the nervous system a wonder?? Ugh. Why can't I have an ulcer?

En bloc, enable your private messaging to get a private message box on here. You can't be pm'd right now.

Oh Cy, you are just what the doctor ordered... laughter!!

I can identify with what you are saying. So many strange and scary feelings and sensations. I used to be a bit more dramatic in my presentation: gasping for air, tachycardia, swooning and shaking. Now, I can pretty much hide these things (experience and practice). The only overt symptoms I have that might clue one in to my flare is that my face, neck and now (new thing) my left arm turn a blotchy red/purple. And I get that angry eye thing (remember the Fleetwood Mac song). :icon_evil:. I have learned to lean onto something so that I don't tip over.

Such a lovely thing. I also have GI problems (gastroparesis and constipation or diarrhea).

Well, maybe I will try the "give me dilaudid or give me death" thing...

Mere

Sorry, I am geasing. It is a Kenny Loggins song (Angry eyes).

Cy---

Too much serotonin? have you had tests for this? To rule out Carcinoid syndrome?

This can cause serotonin storms, along with other biogenic amine release.

There is now a blood test for this... probably costs a fortune!
Chromogranin A (CgA)

I have taken care of patients with carcinoid syndrome and the prognosis was 'guarded'....I have had these 'disturbances' for 20 years, needless to say, they were underestimated.

I will be seeing an endocrinologist. I imagine they have thought Carcinoid, if not, I will fire them.:mad: Carcinoid is miserable.

I found my dad's death cert, and among his causes of death, 'multiple endocrine abnormalites'. Hmmm.

On the serotonin, I have had all the symptoms of serotonin intoxication, and they reliably come on if I ever consent to take that stuff....pretty much go around the black hole every time. I spent a few years zipping around the cosmos on zoloft, wondering why every 10-14 days I got one of these. They are much worse now as I have aged.

Until one's rump has ridden the 'event horizon' as I call it, with one's head in immersed in excessive mass, they can't comprehend.....and this happens every time they try something that is supposed to increase available serotonin, one can not imagine what this feels like....and then they want to give me more serotonin?? My lord, they would blast me into a parallel universe....and I do not trust any physician or stellar staff to give this a try.

Increasing serotonin is the mainstay of pain management....it is not for autonomic dysreflexia (morphine and beta blockers).

I imagine they can test for serum serotonin? Interestingly, I have a dopamine responsive movement disorder....the two are in inverse relationship.

Also, I was in a really bad car accident....could be head or spinal trauma....then again, I had the dopamine responsive movement disorder way before then, and before the headache, which smacks of genetics. I think I have been around too long to have carcinoid?? I dunno.

Also, bone loss is reported with increased 'gut' serotonin, which I have read both does and does not affect the neuro system.

Alas, I am an enigma.

Mere, quick question(s).

Is that blotchy red/purple you get on the face, neck, and arm livedo reticularis? Does is have a 'lacey' look to it? Take a look a pictures online (be careful some are far beyond the normal presentation). I ask because livedo is actually an autonomic dysfunction according to my neuro. It is caused by the spasms of medium sized vessels in the skin.

I'm new to the forum, but not new to the neuro game :wink:

Cycleops,

Without humor we lose the fight!!! Thanks for putting things in the right perspective.

* edit*

The serotonin from carcinoid doesn't hit the blood stream, until it metastisizes to the liver. So you could have it for years and not know, therefore. All that serotonin pours into your blood and affects your heart and GI tract among other things.

Once it gets into the blood stream, it can dump serotonin when under stress, physical bending, activity etc. In some people it is easy to spot, others continue with vague weird symptoms that doctors cannot put together.

Since you KNOW serotonin is a problem for you... look to carcinoid or a hidden tumor secreting biogenic amines...lung/ovary etc.

I have brought this up to the docs before and they look at me like I am from another planet. I will ask the endo. Part of my issue is I don't usually present to my own docs... I end up in the ER. My present primary just sends me there and has never seen one of these. My last primary was stunned when she saw these, but she didn't think carcinoid....'too rare'. Neuro says 'too rare'.....world reknown GI, 'too rare'.

I think it is worth looking at, but, honestly, I have some really odd thing. Not to make light of these, they are terrible....and full autonomic response. Interestingly, I don't dump fluid.....the next day, one would expect I would be dehydrated, but, nope, I void just fine. The last episode started at 2am but there was a prodromal period of agitation and irritation. Just didn't feel right.

By 7am, the wretching started. Wretched for half the day....it stopped, but I could take nothing by mouth. I sleep for only 15-30 min. at a time during this. Hot flashes, cold shivers, sweats, nausea and extreme head pain, nasal congestion, which goes up the nasolacrimal duct into the eye....ugh... It went on until the next morning, when it remitted, but by then, I felt like I ruptured every ligament in my body. Sometimes it comes accompanied by vertigo, not just dizziness...

I am aware there are different types of serotonin....but some kind makes me really sick....

But you are right, it is a consideration.

Hi En Bloc,

I am being tapered from Verapamil and Savella. The Verapamil for tachycardia and Savella for FMS. After the test he wants to change the Verapamil to a beta-blocker.

En bloc, No, it looks more like a bad sunburn. It is dry and my skin gets hot and ever so slightly sollen. Just prior to the flushing, I will sometimes get some nasal congention. Sometimes, it can lead to a bad migraine as well.

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.

This sounds a lot like my syndrome. Maybe it can be called CyMer Syndrome... When all this crap started - about 18 years ago - I was tested for carcinoid. It was ruled-out as was pheochromocytoma.

I know they ruled out pheo, but I am not sure about carcinoid. It would have to be one slow growing carcinoid.

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

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

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.

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 :cool:. 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.:grouphug:)

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.

You may be rebounding from the verapamil, but, they will have to treat that.

Also, you have a low pulse pressure, like I do. Pretty typical for autonomic disease.

I was wondering if the Verapamil may take some time to work again. I woke up with a whopper of a migraine this morning and my BP is still very high on the diastolic reading (167/110, 168/127), pulse is also running a bit high at 97-98. I developed a headache during the tilt table test yesterday and then had bad nausea last night. The migraine is still raging since morning but I am tamping it down with Lortab.

What really worries me is my husband. He is really depressed about all of this. Nothing new, but more than usual. He comes with me to the appointments and then seems to develop a point of overload. Now do know, he is not an overemotional man. But this crap and my health, in general, has been a paramount issue in our marriage for many years. We've been married for over 29 years. I feel bad. It's his birthday on top of it.

This may be Savella induced. I see on your other post, you take this drug?

Sounds like when I get a massive sympathetic discharge. The only way it gets tamped down is a trip to the ER....or it rages for days.

As you go off meds there is a huge rebound.

I am so supersensitive to meds that I use pediatric doses of many of them.

My thought is they didn't give you enough time to adjust from tapering off meds.

Yes, MrsD, I do take Savella and that is one of the drugs I have just resumed taking.

Fluids and dilaudid. I can't take any anti-emetic. They are all either serotonergic (Zofran) or antidopaminergic such as Reglan. When the pain stops the puking stops.

For autonomic storms they recommend the morphine compounds and beta blockade....my pulse goes so low from the morphine that they don't do the beta blockade.

It is misery trying to explain this condition every time I go in....I don't always go in lest I be labelled a 'frequent flyer'....half the time I gut them out at home right now....really, I should go in.

Well, I have gutted-out this attack. On the couch again all day. Just feel wasted and sick, sleeping a lot. But at least my BP is stabilizing and my head is starting to feel better... I guess it's not going to crack open after all...:):Sinking:

Glad to hear things are settling down for you, Mere. Hope you have a better week ahead.

I have to mention that my little cat, Mac, is a twin to the one in your profile picture. I haven't seen too many like him.

Thank you for your concern. Actually, it is not my cat, but looks like my little one, Riva. One of these days I will download a picture of Riva, or one of the other two - Ginger or Abby. I don't know what I would do without my girls...

I miss my kitties too. My last one died at age 17, just a few years ago. Hubby is very allergic, and at one time, I accumulated 5 of them, rescues from people....I was worried I would be a cat lady. I am 'down' to 3 huge dogs now. I miss the gentle cuddle of a kitty, and could do less with the enthusiastic pounce of a 100# labrador....but I love my pups too.