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.

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*

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.