Orthostatic Headache Treatment Poll (Pots Patients)

[davecom]

Hey everyone,

I previously made this poll:

http://forums.dinet.org/index.php?/topic/23615-orthostatic-headache-poll/?hl=%2Borthostatic+%2Bheadache

It seems an astounding 76% of respondents had orthostatic headaches (probably a selection bias though!). You would think it would be a symptom more prominently featured in journal articles about POTS.

This new poll is a follow up to the first. It's about treatment and specifically what POTS related treatment has helped, and what has not.

Also let's talk about what other non-POTS drugs have worked in this thread (other than the obvious... pain killers right). What non-pharmaceutical approaches help too? I think chewing gum was mentioned in the other poll.

[Chaos]

Topirimate was what I finally had to go to as a solution for my headaches/migraines which started after POTS. I've had migraines since I was 7, but they were rare in adulthood until I got POTS. Then I was having up to 20/month.

Ice pak, dark room and time are also options depending on how bad it is. Excedrin can work for me sometimes.

If I get a breakthrough migraine I use Relpax and phenergan if the above non-pharm options aren't cutting it.

[davecom]

I think it's important to distinguish between orthostatic headaches and migraines. As awful as POTS orthostatic headaches are, it is my understanding that they are not technically migraines. Although it must be awful to have migraines be triggered by POTS!! I feel for you, Chaos.

[Chaos]

So do you only get headaches when you stand up? Do they go away when you lie down?

[davecom]

Pretty much yeah, but they don't always go away. But the clear trigger is the orthostatic change bringing them on. See this thread:

http://forums.dinet.org/index.php?/topic/23615-orthostatic-headache-poll/?hl=%2Borthostatic+%2Bheadache

It was completely orthostatic when it started, now it has become (and I suspect this is largely drug related) not only orthostatic. But the ones we're talking about here are the orthostatic ones. I'm sure POTS causes non-orthostatic headaches too though as well as is a potent migraine trigger.

[blueskies]

Hi,

The migraine comes on after I've stood too long -- pushed myself too far. It will occur later in the day and last about 3 days. They used to last 5 days.

From what I've understood from docs migraine and headache are really both the same thing. There is 'classic migraine' but you can have a terribly painful headache which is not classic migraine but every bit as painful and considered migraine. It might just be a case of semantics.

blue

[s-pot]

My daily Headaches got horrendously bad approx 3 months ago. I got to the point of crying with the pain some evenings and had to start talking regular painkillers...I only ever got relief when I lay down for 20 mins or so.

Docs doubled my florinef to 0.2. I have not had one since...and after buying a new BP machine my BP on the double dose of Flor is in the 100/60s mark during the day and dropping down to 90/40-50 at times in the evening. I do wonder what kind of lows I was hitting when the headaches got so bad!!

Defo Orthostatic headaches anyway I have never suffered from migranes.

Good Poll btw!!