Does Dysautonomia Cause Severe " Attacks"

[Ckitz]

When I say attacks, I mean, weird headache, nausea, pale face, with very cold lower face, slurred speech,

Very severe chest pain, cramping,vomiting, passing out. These attacks can last around an hour. Afterwards, I am very weak and take days to recover, and have been hospitalized on occasion. Some attacks are a milder version. They are not panic attacks, and they occur usually in the evening or even in the middle of the night.

I don't hear anyone with POTS talk about this. I want to know if anyone else deals with this.

[gjensen]

I have had some spells that I could put in a similar category, but not precisely. I dare not make too light of it, because some of the symptoms can be serious. It is best that a doctor be involved in that.

I do know how difficult that can be.

What have they told you so far? What doctors have you seen about it. How often do they happen, and has any of them been caught on a monitor?

I am not implying anything. Guess, I am going through the what has been ruled out thought process.

[Katybug]

I used to have full blown attacks like that. It turns out mine were abdominal migraine and included diarrhea in addition to the symptoms you describe. I would be so sick and weak that I would just sleep on the bathroom floor in between episodes that usually occurred every hour or so until the whole incident was over. We thought it was somehow related to the dysautonomia and it wasn't until I was put on Depakote (an anti-epilectic) for my migraine headaches that these episodes stopped. That's how we figured out it was abdominal migraine. There are also things called cyclic vomiting disorder and abdominal epilepsy that are similar and rare and of course hard to get a diagnosis. It it not unusual to find various forms of migraine associated with dysautonomia. On my EDS forum, at www.ednf.com people discuss all three of the conditions I mentioned above much more and most that discuss it seem to have some form of dysautonomia in addition to their EDS.

[Bigskyfam]

Mine around my cycle

[Ckitz]

I appreciate your input. I have had these attacks all my life. I have been to so many dr's ref this, and none can give me answers. Once they thought I had Acute Intermittent porpheria, but ruled it out. In Oliver Sacks book, "Migraines" he describes an attack like this, saying it was a stomach migraine.( he is a neurologist who has written many books) I went to a neurologist, and found out that stomach migraines are basically a illness that no one knows anything about. You will see a childhood stomach migraine, described on the internet, which is different. I was really hoping that my dysautonomia would be the answer, but no one is describing these attacks.

My heart goes out to you if you are dealing with this. It is not something I would wish on anyone. Luckly, my attacks have not been as severe in the last several years, and I think it is because of more rest, less stress, and better eating habits.

[Ckitz]

Katybug....just read your input. So happy to hear that you know what I am talking about. No doctor can tell me anything about stomach migraines. Just blank stares, and I even have had doctors that don't believe me....and others that said, " Oh, just come to my office when you have one, so I can see it". He was obviously not listening to my description of an attack. It is a hellish thing to live with.

Do you know of any doctors or any literature ref stomach migraines? I will also check your EDS forum.

THANKS SO MUCH

[Katybug]

I would look it up as abdominal migraine or cyclic vomiting syndrome to find info on the internet. My gastroenterologist said he couldn't think of anything else it could be and my pots neuro who also has a subspeciality in headaches said that depakote has no known benefit for GI problems except for abdominal migraine or abdominal epilepsy. I don't show any seizure activity on an EEG. I went to www.headaches. com (or .org, not sure which suffix) and they have a doctor's list on their. You might start there to find a doc in your area that is familiar with migraine. One thing that is hard about abdominal migraine is that it is rare but more prevalent in childrenand very rare in adults, so it's hard to get the dx. The diagnosis is also complicated by the fact that it is a diagnosis of exclusion and can only be proven ultimately by failing all other GI tests and tx and then being successfully treated by a drug like Depakote if you can convince a doc to do a trial. I kind of defaulted into finding my answer because I also suffer severe migraine headaches. I'm on my phone now so tonight I'll get on my laptop and see what medical info I can find for you.

Fwiw, I had episodes of this on and off since chilhood and you're right....I wouldn't wish it on anyone.

[Freaked]

Yes, I've had 'attacks' with most of those symptoms. Sometimes loads of them together, sometimes only a few. Mine tend to occur if i haven't eaten enough or if i've pushed myself too far physically, but sometimes they seem to come out of nowhere. They are most definitely a part of POTS and dysautonomia. I assume you have docs that have tested your heart, endocrine system and neurological activity, because obviously those can be symptoms of serious conditions. But yeah, 'POTS attacks' are a term many of us use for them. Fluctuating BP and adrenaline levels are mostly responsible.

[Katybug]

http://www.abdominalmigraine.org/abdominal-migraine-in-adults.html

http://www.ncbi.nlm.nih.gov/pubmed/9760558

http://www.ncbi.nlm.nih.gov/pubmed/16245431

http://www.ncbi.nlm.nih.gov/pubmed/16420398

http://www.relieve-migraine-headache.com/abdominal-migraine.html

http://www.ncbi.nlm.nih.gov/pubmed/17260810

http://www.ncbi.nlm.nih.gov/pubmed/10490043

[Ckitz]

Thanks..." Freeked" , that is very interesting. I haven't seen anything ref this, "pots attack" while reading up on POTS. I will have to look more.

also, Thanks so very much, Katybug. I am going to check out the sites you have listed for me. I will be thrilled to death if this is the answer to my attacks. I have dealt with them since childhood and am now 59, still looking for answers. Hopefully I can finally put this mystery to rest.