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Migraines?


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Hey, everyone! I've started having some pretty nasty migraines this past week, pretty much every day. I don't think it's a normal tension headache, because it's not responding to Advil at all, even though I normally do pretty well. I took the maximum dosage, and saw absolutely no improvement. Also, i've had a lot of light/noise sensitivity, and it just feel different from a "normal" headache, ya know?

I was wondering if migraines were common with POTS, and what you guys do about it. I have a cardiology appointment this week, so I guess we'll see what he says. We may end up being referred to a neurologist, and I guess that if he can help, we'd be happy to go see him. But we don't want to keep bouncing from doctor to doctor all the time. I mean, I'm a little worried about raising red flags for Munchausen syndrome.

Ah, well. I guess I'll give you all an update after the appointment. Do you have any tips for dealing with these pretty debilitating migraines until then??? Any advice is appreciated! Thanks all!

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Hi, LastUnicornLady. According to Dr. Grubb, over half of patients with the hyperadrenergic form of POTS have migraines as well. I have migraines, too, and I have reduced their incidence and severity by following a diet free of migraine triggers. This diet was recommended by my neurologist instead of medication.

My main diet triggers were caffeine and chocolate, followed by onions and garlic. Other triggers for me include doing too much in one day and hormonal changes.

Here is a link about the diet:

http://www.neuropt.org/docs/vsig-english-pt-fact-sheets/migraine-diet-triggers.pdf?sfvrsn=2

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My POTS neuro calculated that 80-85% of his own dysautonomia client load at any one time suffers from migraine. He said that there is quite a bit of anecdotal information showing that there must be some sort of link based on the numbers of patients with these two comorbid issues.

I am on Depakote ( an anticonvulsant) as a preventative treatment and on generic Maxalt as a treatment for break-through migraines. I also will sometimes have to have a small amount of caffeine such as half a Coke or a half-caff coffee and take some Tylenol along with the Maxalt. Sometimes I also take Benedryl if I have rashes that might be my mcas since mast cell degranulation could contribute to a migraine. I also find putting an ice pack wrapped ina towel (gentle cold) against the back of my neck or on the side of my face where the headache is helps. Sleep is a must if it gets wicked.

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I dont know if you have low BP issues but read up on Magnesium & Migraines. Also, read about Arginine for migraines. Both can lower BP.

I have suffered from hormonal migraines since I was 10. Can no longer take any kind of triptans aince I am on Zoloft and had seratonin syndrome which dropped my BP to 57/37 (this was pre-POTS) I have taken Arginine with 2 Advil at the beginning of a migraine and stopped it in its track

It is worth reading up on!

Liz

Liz

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Liz,

Does the arginine work most of the time for you? I have been on magnesium and not sure if I have a reduction in severity and frequency. I do have low bp already as well as low HR.
As for the arginine- have heard of many supplements (feverfew, COQ10 etc) but never that one for migraines. So it is a rescue med, not a preventative?
Any feedback is appreciated.Thanks

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I am trying to sort out how to deal with migraines. I suspect that a lot of my head symptoms is related to migraines. I did not know there was so much to migraines. I had always thought they were bad headaches. I had no idea.

My trigger is being upright.

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Thanks everyone! We had a little confusion with my doctor's appointment, because somehow we managed to get the wrong date... Thankfully the office called for a confirmation! I'll be bringing up the migraines when we go to my appointment tomorrow.

I glad (???) that this is a common symptom. It's nice-ish to know that I'm not the only one who's experiencing this. Liz, I don't believe I have BP issues, but I guess they'll be checking on that at my appointment. I suspect we're also going to get some bloodwork done to check my electrolytes and all that checked. I guess I'll have to post an update sometime next week, as I will be unable to get to a computer over the weekend.

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