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 and not flip out. 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. I can't tell where I end and other things begin. 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. (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. 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). . 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. 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.

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.

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

Cycleops,

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

* edit*

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.