Headaches Upon Standing

[griffism]

Over the past few days I have had a headache that seems to be around the temple area. Also, it gets worse when I stand up, which is strange to me. I am wondering if I have a sinus infection or if this is just another lovely POTS symptom. However, I have had no other signs of infection besides the headache. (no fever, cough, etc.) My current diagnoses are POTS, EDS, Gastroparesis, and PCOS. I was wondering if anyone else has this symptom? If so, should I be concerned? Also, if you do have this symptom, have you found anything that has enabled you to get some relief?

Stefanie

[Katybug]

I have chronic migraine. The worst part of my migraine pain is in my temple although I have pain that radiates out from there into most of my skull, the base of my skull at my neck, and into my face and jaw. When I stand up the pain gets worse until I'm up for a while. If I'm up and I bend down the pain worsens as well. Also, if I am laying down on my side and I turn over to the other side , it usually causes splitting pain too. This is all classic migraine per my pots/migraine neuro. I take depakote as a preventative, maxalt as a prescription breakthrough tx, and tylenol or tylenol pm if I need a little more help and an antihistamine (mcas contributes to my migraine).

[westernmass]

When I get headaches that get much worse on standing (like pressure in my head) it's usually my blood pressure fluctuating like crazy. Make sure you are hydrated enough- are you good about that? Do you take salt? Can you monitor your BP? If you are concerned definitely check in with your doc though.

[Libby]

I was just reading an article about this in pediatric POTS patients. Orthostatic headaches are a predictive symptom of POTS, according to the author.

I've gotten them for as long as I can remember. Not constantly, but a couple times a month. Absolutely no headache while I'm lying down, but the second I try to stand my head just THROBS. Ouch.

[griffism]

Westernmass,

Yah, I am pretty good about keeping myself hydrated. I usually drink Gatorade/PowerAde with dissolved salt tablets in them throughout the day, as well as smart water to get away from some of the sugar. Also, I monitor my BP because I am on midodrine, but my BP hardly ever reaches normal (120/80).

Thanks for the feedback! I am going to check in with my POTS specialist to see if he thinks they are migraines or not. I will keep you guys posted

[kitt]

I asked about this to an infamous Mayo dysatuonomia neurologist last month.

Asked 'What's with the headaches'...(We developed a shorthand way of communicating very quickly.) Her short response, 'No blood getting to the brain.' I understood the answer as quickly as she understood the question.

Asked and answered.

As for medications for these headaches, I've found Gabbapentin to be very helpful as this point. (May not be powerful enough in the future, but it's working now, and I stay in the present and focus on what's working now.)

Wishing you the best with this. Good luck.

K

[davecom]

Yeah it's a pretty typical POTS symptom - I agree with kitt about the cause being blood to the brain (or lack thereof) - my neurologist said the same thing. Beta blockers made it much much worse for me by lowering heart rate and reducing therefore blood flow to the brain while orthostatic. Neurologist took me off of them even though they successfully lowered heart rate for this reason. It's important to remember that the tachycardia in POTS is actually a compensatory mechanism for blood pulling and therefore lack of blood to the brain. In some ways it's a good thing - otherwise you could pass out (and you might anyway).