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Hannah36

Headache help

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Hi everyone,

I get a ton of the dreaded coathanger-headaches that often come with POTS, and I'm desperate for advice on how to deal with them. I'm going to be asking my doctor the next time I see him about potential medications that I could take as needed, but I'm trying to find out what else I can do. Painkillers don't do much, and while it definitely helps to drink even more water and Gatorade than usual, it doesn't help all that much. Has anyone found things that work for them that I could try? 

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Hi @Hannah36 - I’m in the exact same boat as you... Coathanger headaches with no relief from painkillers. I have them everyday, I honestly can’t temember the last time I didn’t have a headache. I’m so sorry to hear you’re going through this too - it’s just awful! Doubling up on ibuprofen and putting an ice pack over my face and neck used to help, but not so much anymore. I’m seeing Dr. Raj in a couple of weeks and am hoping he will have some other suggestions for me. I’ll be sure to share them if he does!!

I hope your doctor has some good suggestions for you too - best wishes and hang in there!!

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I get these quite badly too.  What I do that’s only marginally helpful but every little bit helps, is get massages at physical therapy because my muscles are very tight, use an arnica rub on the trapezius muscles, use a hand held massager (PT recommended this to work out the knots) and this https://www.amazon.com/gp/product/B071JFYTLD/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1. I have an IceKap  Https://www.icekap.ca/  that helps too.  I also  have a prescription for Fioricet for when they get bad but my neuro won’t let me take more than two capsules three times a week so I really have to be suffering to take any.  I wish there was more research into this symptom because it’s awful to have headaches every day. Another thing I have found is that I am worse with a pillow that doesn’t align my spine properly.  

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What I do for these - and this may not be advisable for everyone - is I take 1/2 Flexeril ( Cyclobenzaprine ) before bed time. This really worls for me with the coathanger headaches and other muscle-spasm issues as well. In my case it does not at all seem to affect me adversely. 

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I take flexeril too but it seems to have stopped helping recently so I just got a prescription for orphenadrine today so haven’t tried it yet.  

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They put me on Topomax because it had an off lable use for this. It isn't great, but I can tell when I don't take it. You might ask your doctor to research this. The med is normally used for seizures, but I don't have seizures. Just a thought.

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I get headaches when my BP is low, and also when it spikes.

At the moment my BP is low (90/55) and my head is throbbing. Not much helps me, other than water and salt / trying to increase blood volume.

I'm sorry I can't be more help, but you have my support and well wishes! 

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Just FYI-I was on top ax for severe migraines years before my dys hit.  I tried it again post dys diagnosis and it gave me headaches so I had to stop.

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What about a little caffeine?  Not a cup of Starbucks, but like a Coke?  My daughter gets a ton of headaches, and she cannot tolerate a lot of caffeine, but just one Coke a day really helps her.  Think it might help her very lax blood vessels to constrict better.  She has EDS along with POTS.  Just a thought....

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On 6/28/2019 at 4:19 PM, jklass44 said:

I’m seeing Dr. Raj in a couple of weeks and am hoping he will have some other suggestions for me. I’ll be sure to share them if he does!!

We'll be waiting!!

Meantime thanks for the suggestions above. I stopped drinking diet coke when POTS hit because I became intolerant of caffeine, but I may just try one. I also love my ice pack, and for a treat those Cool & Soothe strips that you can stick on your forehead or back of neck. 

Also currently trying to get a better pillow at the moment as the lovely softie I got at Christmas is now as flat as a pancake. 

I find using my neck pillow (like this one but mine is an electric blue zebra print) https://www.completecareshop.co.uk/orthopaedic-aids/neck-cushions/neck-cushion-view-large?gclid=EAIaIQobChMIqYOIwb6W4wIViLbtCh38mgCkEAQYAiABEgLaZPD_BwE helpful when sitting on the couch.

B xxx

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The best medication for me was Celebrex/celecoxib. The best exercise for me was to pull my shoulders up to my ears (like a shrug) and squeeze that as hard as I could and repeat until they fatigued. This stopped my neck spasms. 

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On 7/6/2019 at 1:13 PM, firewatcher said:

The best medication for me was Celebrex/celecoxib.

I know the coxibs have fallen out of favour now, at least in the UK, but I wonder if part of the benefit of this was also a bit of fluid retention due to its renal effects, hence increasing blood flow upstairs? I take ibuprofen also for this reason, but I know long term it suppresses renin which is a bit of a catch 22. 

I wish I could find a painkiller that didn't worsen my presyncope. Anything that results in me needing to lie flat defeats the object as just lying down would take the pain away itself.

B xxx

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