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Migraines and Pots


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Ive been reading that many people who suffer pots have a variety of odd neurological symptoms - like muscle twitches, hand and body tremors, visual changes, blurred vision, tunnel vision, increased sensitivity to light and sound, etc.

Many of these symptoms also occur during migraines.

I have been having what some people here call 'autonomic storms', and during one of these i went to see my doctor - he seems convinced that it was actually a rare type of migraine - or atleast migraine related.

Since we all seem to have neuro-excitability (a term a doctor once told me that CFS patients suffer from), could POTS be a strange form of migraine, could the autonomic storms (tremors, mental confusion, increased heart rate, restlessness) be a severe type of migraine aura - since both leave you with that same 'wasted and beaten down' feeling the next day.

Or are the migraines a symptom of POTS caused by neuro-excitability - itself related to pots...???

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Yes! Weird huh.

I posted last year sometime about these strange visual problems I was having, I had no idea it was a migraine. I sometimes get a twitch, sometimes my eye just starts running tears like I'm crying but I'm not. I have had my vision bounce up and down, that was scary.

I also get a regular migraine on one side of the head with severe pain and sometimes N/V.

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Guest Mary from OH

I get both types of migraines as well. Unfortunately, the one's with pain MUCH more often. Actually, if you are suceptible to auras, it's not all that unusual to have an aura w/o pain. Some people have them some people don't.

I have one now (and strep) otherwise I would go thru the phases of a migraine predrome, postdrome etc., but my brain is fried!

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im having trouble working out when a migraine stops and an autonomic storm begins - they both seem pretty similar to me.

I havent had a migraine or many pots symptoms for ages, then WHAM! Ive had 4 migraines in nine days - and pretty much constant POTS and aura symptoms as well. They are sending me for a brain scan, but i doubt they will find anything - as usual...

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Well, I just got back from the neurologist about my headaches and he said they were definitely migraines (they had previously been diagnosed as tension headaches). He knows about dysautonomia and says that he doesn't think, in my case, that it's directly related...

However, I have bulging discs at C5/6 & C6/7, and he said two things:

A) the bulging discs are probably playing a part in my headaches by causing muscle spasms which start a tension headache which then goes straight to migraine...

:) He sees dysautonomia frequently in people with bulging or herniated discs in this same place.

The second really isn't big news to us all here, but it does lead to a tentative and empirical connection between dysautonomia and migraines, I think.

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So what do you do next, Texasgrrl? did your doc prescribe physical therapy to deal w/your neck issues and hopefully cut down on the frequency of the migraines?

My disks are bulging in the same places ... grr ... and I just got my PT scrip extended for 4 weeks. I too get wicked headaches; a handful of times I've wondered whether they were migraines.

What a drag it is getting old...

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I have a question. Sorry if it is dumb. To tired, don't waste your time. I'm "windy".

Years ago I had migraines alot and now only rarely. My trouble seems to be what I call "eye migrains", for a lack of a better term. I get nasty, horrible pain in my muscles around one or both of my eyes. It happen about every 6-8 weeks and lasts for about a week. It is really hard to do anything as just looking around is painful. :) I can't watch tv and right now even reading is tough. I rarely take anything for pain anymore than the neurontin, but with this I have to have something else. Though it makes me feel yucky(upset stomach, nausea), I have given in to ibuprophen as it seems to be the only thing that works. Asprin doesn't help and though helpful, the neurontin isn't strong enough. The worst pain is when I try to look down or to the right.

Anyone have this trouble? I have on other symptoms of a migrain, sinus trouble, or any other kind of headache. Most of my other POTS trouble is a little worse but not to bad. I have tried more water, less water, eletcolytes, salt, mineral and vitamins, diet changes but no luck. I KNOW this isn't a hormone thing, those haven't changed in years. I have also tried hot and cold packs.

Any suggestions would be much appreciated!!!

blackwolf :(

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Just so you know you're not alone...I used to get a similar type of eye pain -- inside and right around my eye (usually my left one), like a lot of pressure. Sometimes I also got eyelid twitching or a bloodshot eye, other times just the pain. I find a cold compress usually helped, or just closing my eyes and resting them. In the last year or two, I rarely get that pain anymore and it doesn't last as long if I do (knock on wood!) ;) I really don't know what causes it, but it sure does hurt! :angry:


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Guest Mary from OH


Sorry, I've been out of commission for awhile....

IMHO Your eye stuff sounds migraine connected, possibly even an aura. I've had migraines for over 30 years.

Try getting one of those eye gel packs. They have them where you can put them in the fridge to chill them and it has a strap that goes around your head that fastens with velcro. I do that and tighten it around my head as TIGHT as I can possibly get it. Then do the typical try to lie down/still, dark room thing. The colder you can get/tolerate it the better.

Take care.

Migraines suck and are actually VERY complicated. Many drs don't know much about them at all. You really have to go to a specialist to learn a lot.

I saw someone on here somewhere post about their neuro or autonomic dr or someone trying to explain that their migrianes and POTS aren't related. Well, got news for that dr!! The research says that Migraines go along with POTS!! So does FMS and other conditions!! I wish some drs would be educated before they open their mouths!!! That's ok. My daughter's cardiologist tried to tell me that it wasn't genetically inherited, and didn't have any more of a tendency among women!! SHE'S a PEDIATRIC ELECTROPHYSIOLOGIST!!!! I could have scremed!!!!!

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He put me on 25 mg/day of Elavil as a prophylactic.. hopefully to avoid getting the migraines to start with. (At 150 mg, Elavil is an antidepressant, but at low doses supposedly treats nerve pain.)

He also switched me from Butalbital (which he thought was causing rebounds) to Relpax, but we're still fighting with the insurance company to pay for it. Since it's $260 for 30 pills, you can bet I'll just make do with the Butalbital until the insurance company gets its collective head out of its butt.

I've tried neck stretches, heating pads, ice packs, and almost anything else you can think of, but all any of it does is postpone it for an hour or so, if that.

His impression is that the bulging discs are, at least in part, causing the migraines, but that this is the appropriate first-line treatment. Traction, cervical collars, etc. might be down the road, and at the far and hopefully distant end is surgery.

Some of you that know MightyMouse may remember she's had several neck surgeries to repair herniated discs in the same locations. She has EDS III, as do I, so I think I'll learn from her experiences and avoid surgery for as long as I possibly can. There is little doubt in my mind that at least part of her poor recovery has been due to the EDS, and I don't want to have to go through what she's been through unless I can't function anymore. Certainly MM waited that long, so I can too.

Besides, he doesn't think that the discs are contributing to the autonomic problems, at least not yet, because they're not putting enough pressure on the spinal cord yet. Eventually, he says, they probably will.

He did warn me that a small number of patients have dry mouth, hypotension, high heart rate, etc. with Elavil and that I should stop it immediately if I notice a worsening with it. So far, I'm on half the 25 mg per day, and I haven't noticed any increase in symptoms. He's got something else up his sleeve if the Elavil does that, so we'll see what happens.

I went for 2 months without any headaches until the day before the appointment, which was Wednesday the 23rd. I had another last night, and waited too long to take the butalbital. I took another a couple hours later, but it didnt help much, so I eventually quit trying to fight it and just went to bed. Fortunately it was gone when I woke up.

These headaches are real stinkers, but fortunately since I've had the Butalbital, I haven't had one get a full head of steam. Now that's debilitating. :angry:

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My 13 yr. old daughter and I both have migraines and she has dysautonomia. Her migraines are all pretty classic with pain on one side, light and sound sensitivity, nausea, numbness and tingling, etc. Mine always begin with a pinpoint of jagged glittering "lights" in one eye. The "pinpoint" gets bigger and bigger until the vision in the whole eye is effected, then suddenly my vision clears. Then either the head ache begins or nothing at all happens. The neurologist says that both are migraines whether or not the head ache is present. If I get the headache, I too am sensitive to light and sound, have nausea, etc. My daughter's neurologist says that there is a very high correlation between dysautonomia an migraines.


I can't really answer your question since I'm not a doctor but I was having a lot of visual disturbances and other neuro problems.  I saw a top neurologist, he said I was having migraines without pain, pretty rare.

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Guest Julia59

I can't say that I have migraines, but I was given a medication commmonly given for migraine sufferers----Topamax. I do have headaches of a different kind---occtipal---or lower brain and upper cervical spine due to blocked cervical spinal fluid. This is due to chiari malformation/cervical/cranial instability----cervical spine stenosis, and a deformity in my C1--occitapal bone called a basilar impression of retroflex odontoid. I also get some pretty bad ear aches.

I also have EDS. I thought I would chime in because I also had surgery for two herniated disks on C5,6, and 7 and of course a POTS diagnosis. Nina (Mighty Mouse) did have two surgeries unfortunately due to her doner graft collapsing----probably the EDS, like you said. I had a titanium plate added, so my doner grafts didn't collapse, but the levels above and below became more unstable----and very quickly! The EDS is the culprit also.............

I found that the Topamax is helping with the headaches, but there are side affects. I have only taken 4 pills ----so kind of early. But I am also EXTREMELY sensitive to meds because of the dysautonomia combined with my hashemoto's which is auto immune thyroid disease. Just the 25 mg have made my BP low and made me extremely sleepy, but it does improve after about 4 hours after taking it. And it seems to take less time as I take it more---the same goes for the side affects (dizzy, sleepy, fatigue, cranky, low BP which was already low but now lower)---less as I take more. And pop does taste funny----no kidding!

Julie :0)

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Hi, everyone. As long as we're on the topic of migraines here, I wanted to recommend a book that was just published: All In My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache

by Paula Kamen. Paula is a friend of mine--and I was delighted to see her book front center eye level on the new nonfiction rack at Borders over the weekend.

I think most of us will be able to relate to her story on some level--she describes her battle against an invisible chronic illness (headache pain) with great humor and clarity.

Here's part of what's on the amazon web site about the book (I'm not promoting amazon here--in fact, I AM promoting your neighborhood independent bookstore so that books can continue to be published by smaller publishing houses ... but that's another rant. ;) )

From Publishers Weekly

Imagine the sensation of a fishhook lodged behind your left eye and tugging backwards. Now imagine that you live with that pain 24 hours a day for 15 years. That is Kamen's headache, one that she attempted at first to cure but finally learned to accept. Kamen (Her Way: Young Women Remake the Sexual Revolution) first tried all sorts of drugs?some were addicting, others made her gain 70 pounds in six months; none had any effect on the pain. She turns to alternative medicine: cranial-sacral adjustments, acupuncture, gluten-free diets, magnets, yoga. Kamen intersperses her account of these increasingly bizarre treatments with a look at how Western medicine, and even feminism, abandons patients with chronic pain and other invisible ailments: since her pain has no discernible physical cause, she has been told it's "all in her head." This book may not be uplifting, but it is undeniably funny. Kamen's irreverent sense of humor about her pain and herself makes the book a delight to read as she unabashedly pokes fun at the corporate pharmaceutical industry (even while she hopes for a test-tube cure), doctors and other caregivers. Kamen makes the reader understand what it is like to be happy even while one is in pain.


I hope everyone's feeling pretty good today ...


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Guest Mary from OH


Yes!! I am not so good at getting the right references down yet!! I remember reading it!! (which I consider pretty good for my POTS, FMS topamax brain!!!)

I was just so shocked that it almost angered me!! I think that my regular electro cardio knew, but not the peds one!! So, I was pretty irritated. I would like to be able to have the articles printed out. In fact, I may compose a letter and send them to her!

Thanks for your help!!!

I also had gone in because I was concerned about my daughter having POTS (possibility - she has many signs already and she's only 5 1/2 ;):( ) Marissa has low body temp, low blood pressure, SEVERE motility problems, migraines, intolerance to heat, cold hands, sweats!, and I forget what else!!

Plus she's on a Compassionate Use Drug FDA program. This means that the drug has been pulled from the market, but she is in a special program to be able to get it. We have to go through a LOT to get it. She has EKG's and bloodwork every several months, etc. But, this drug CAN affect your heart. SO, you can see my concern. However, it is a totally different situation. It has to do with your QT intervals. Marissa's only "abnormalities" are: NW axis deviation/R axis deviation. Anyhow, I went to this specialist to find out if there were any problems *if* Marissa has POTS and is on this medicine. I DO NOT want her to do the TTT at 5 1/2!!

She agreed. For some reason, she did find it necessary to do an Echo. So, obviously she was a little concerned about something. The Echo was normal. She told me that her migraine med would take care of her POTS sypmtoms *if* she started having them. She said that they usually start to see them around the teenage years. So, she should be covered. And that my GI should research for info about POTS and the med!!! I was flabbergasted!!!

That's my story!!

Thanks for your help!!

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this page from the NDRF lists Migraines as a POTS symptom



Cyclic Vomiting

Dysautonomia,Cyclic Vomiting Syndrome, and Abdominal Migraines

Dysautonomia (Autonomic Dysfunction), Cyclic Vomiting

Syndrome and Abdominal Migraines

Children with Autonomic Dysfunction often present with some type of abdominal or stomach complaint. These symptoms include nausea, stomach or intestinal cramping, painful or habitual diarrhea, constipation (associated with nausea, vomiting, retching, or dry heaving), intense abdominal pain without cramping, habitual vomiting, and retching or dry heaving when anxious, frustrated,excited, stressed or scared. This is NOT like the ?knot in the stomach? feeling that many people experience when they become anxious or scared. These symptoms are much more severe and often persist for hours or days after being triggered.

The most important thing parents, teachers, medical personnel, friends, etc. must remember is: The child has NO control over these events. The child can no more control an episode than you can control hiccups.

Children with Postural Orthostatic Tachycardia Syndrome or with Orthostatic Hypotension (both are forms of Dysautonomia) often present with abdominal symptoms if they have been standing anywhere from 1 minute to 20 minutes.

Many of these children experience dizziness, light-headedness or excessive sweating. Symptoms often improve if the child walks around and symptoms may completely resolve if the child lies down for 5-10 minutes. Walking helps return some blood supply to the heart as the muscles in the leg contract and pump.

When a person stands, gravity pulls the blood down toward the lower extremities. In Autonomic Dysfunction, vessels in the legs do not respond to messages from the brain to constrict. This causes pooling of large amounts of blood in the lower body. The autonomic nervous system makes an attempt to bring more blood flow back to the heart by shutting down the gut and limiting blood supply to the gut. This is a normal response when a person is exercising. This is why mom always told us not to exercise right after we ate. It is also why marathon runners often vomit if they drink water while they are running.

In children with Autonomic Dysfunction, the gut is shut down simply because they are standing in one place.

The shut down of the gut results in many abdominal symptoms that vary in type and intensity, from person to person, and from episode to episode.

Intense abdominal pain is often referred to as ?abdominal migraine?. It is no different from the vascular changes that occur in regular vascular brain migraines. Research indicates that regular brain migraines may be the result of mild autonomic dysfunction.

Varicose pelvic veins (either hereditary or from years of severe blood pooling) can cause severe abdominal pain. These varicose veins cannot be seen on an ordinary ultrasound, CAT scan or MRI. They can however, in some cases, be surgically repaired.

Autonomic Dysfunction can trigger a series of abdominal symptoms that include frequent episodes of severe vomiting. This is called ?Cyclic Vomiting Syndrome?. Stress, anxiety, excitement, frustration and lack of sleep can all trigger an episode. Certain smells or ingesting certain foods can also start an episode. Other infections can cause all autonomic symptoms to become more pronounced and prolonged.

Certain medications that block autonomic nerve impulses can help decrease symptoms, but they rarely resolve on their own. Symptoms usually improve in adulthood and are replaced with fainting spells (syncope). This may also occur in late adolescence. Some children will enter adulthood without any relief from the abdominal symptoms and may develop even more severe symptoms.

Avoiding events that trigger an episode are encouraged. Frequent rest periods should include lying down. When in a classroom, watching TV, etc. the child should be encouraged to sit with his/her legs up or preferably sit in a recliner (with feet elevated and upper body at a 30-45 degree angle.

Most children with this form of autonomic failure are unable to meet the demands of an average school day. Many modifications need to be made if the child remains in the classroom. Some parents opt for homeschooling. Most children do well with taking 2-3 classes at school and home-tutoring or homeschooling the rest of their classes.

This information may be copied and distributed to parents, teachers, etc.

Rita Vargas, RN

This page is dedicated to Matt for his preseverance and bravery in the face of adversity and to Carol for never giving up hope.

revised 8/02, 11/02

Copyright ? 2003, Dysautonomia Educational Information Center





Here are many Websites notating that POTS can be Herediatry!

POTS Hereditary








Hope this helps some

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Guest Mary from OH

Thanks Steph!! You're fast!! I'm off to my neuro this am! Actually, the one I'm going to fire!!! LOL!! I'm going to see if he is educated about POTS!! This should be fun!! Apparently, he lives down the street from my cardio and my cardio said he is!! But, I doubt it!! He is an arrogant..... fill in the blank!! My only reason for staying with him as long as I have is to get scripts, isn't that awful??!! I have a refrerral to a new one. So, thank God I can finally get a good one. His office staff is AWFUL at delivering msgs and he thinks he's always right, etc. You know, the eternal "God complex" some drs have.

BTW, did you know my daughter is dx with abdominal migraines in addition to her regular migraines as well??

You're awesome!!! Thanks again!!

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OMG... another question of my life may have been answered.. I don't think I had these as a kid, but maybe this sounds familiar?

This has happened twice, with no explanation. I know abdominal migraines are usually accompanied by vomiting, but maybe it can happen without?

First time was a week before my wedding. It was late at night and my husband's best friend had just arrived. I hadn't eaten anything all day and had a sausage for dinner. Within a few hours, the stomach pains started - worse than any I'd ever had. It was definitely in the upper abdomen - it felt precisely like the stomach was sort of going into labor or something. I took some Maalox, thinking it was the sausage. It did nothing, so I tried some pepto-bismol, which either made it worse or it just got worse on its own. I was doubled over with pain for no apparent reason, and despite the fact that I protested, my husband took me to the ER. The cramps continued until about 4 am. The ER doctor was quite rude to me after the Xylocaine cocktail he gave me had only a minor and temporary effect. I was falling asleep between cramps, then waking up, sitting up and doubled over when they struck again. The ER doc said I was faking it and threatened to throw me in the hospital knowing I was about to get married. The pains finally passed by morning and I ended up missing my own bachelorette party the next evening because of the drugs he gave me.

It didn't happen again for about three years, then I had another (my last) bout. Since the ER didn't help last time, I didn't bother to go in the second time. I didn't take anything for it, either, since nothing seemed to help. But I had the same symptoms - very intense, labor-like pains in my stomach for several hours. It eventually went away on its own. I hadn't eaten anything weird the second time.. starchy mild foods for dinner.

I haven't had another episode like this, but I always wondered what the heck was wrong. Even though I was 20 and 23 when I had these episodes, and had already had my first migraines (with aura) by then, do you think this could have been an abdominal migraine?

By the way, as a child I was very sick. I am lactose intolerant and they had me on protein-fortified sugar water for most of the first year of my life. At one year old I only weighed 12 pounds, and my mom says I was always screaming even though I didn't have colic. I don't know if that's related, but I guess it could be...

Any ideas?

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Guest Mary from OH

Well. Migraines suck!!

I can barely see. My head is about to explode. My neuro started me on Oxycontin. I'm scared to death!!!! I can't take anything else other than my Topamax. He said it was the Oxy or inpatient. I am terrified!!

This weather is going to be the death of me (and the rest of us with migraines!).

Take care everyone.

I have another sinus infection and a strep test pending (rapid was negative this time, but I think it will turn up positive!)

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