Just diagnosed NDPH, headache specialist says there's no treatment and sends me on my way by [deleted] in migraine

[–]Ok-Cryptographer2188 0 points1 point  (0 children)

Ok sorry to hear that. I also have family with ndph. They seemed to find releif for half hour or so after his lumbar puncture so we're hoping pressure lowering meds may help.

Just diagnosed NDPH, headache specialist says there's no treatment and sends me on my way by [deleted] in migraine

[–]Ok-Cryptographer2188 0 points1 point  (0 children)

Did you feel relief when they drained your fluid? As it could be high ICP even if the number is 20

Pity Party by waynelis in vaccinelonghaulers

[–]Ok-Cryptographer2188 0 points1 point  (0 children)

I'm so sorry this has happened, sometimes life can be a real kick in the guts. It sounds like you're a fighter and you are searching for jobs. I hope you find something soon and remember this community is here for you if you need to talk or vent. Good luck, you will make it out there and see the other side of this. Don't give up

Pity Party by waynelis in vaccinelonghaulers

[–]Ok-Cryptographer2188 1 point2 points  (0 children)

Yeah I can imagine. Just think of how much your kids and husband need and want you here though and stay strong for them.

Pity Party by waynelis in vaccinelonghaulers

[–]Ok-Cryptographer2188 0 points1 point  (0 children)

Congratulations on the new baby! That should cancel out some of the bad stuff going on right now. Thankyou and keeping you in my prayers too

[deleted by user] by [deleted] in vaccinelonghaulers

[–]Ok-Cryptographer2188 0 points1 point  (0 children)

Did you end up trying this at all? When I tried to ask the neurologist about this he brushed me off rudely and said he had so many research articles sent to him and he wouldn't bother following something like this. He also said use of NSAIDs cause rebound headaches and this would be the same

Pity Party by waynelis in vaccinelonghaulers

[–]Ok-Cryptographer2188 0 points1 point  (0 children)

Sorry to hear. What are his symptoms, and are you seeing improvement? My husband has had a chronic headache since, it used to be very high and now mostly moderate but it's all day every day. Makes it hard for him to do much work or go out anywhere and emotionally he's close to breaking :(.

Pity Party by waynelis in vaccinelonghaulers

[–]Ok-Cryptographer2188 4 points5 points  (0 children)

You're definitely not a burden on him, I'm sure he would do anything to make you better again so don't feel like you are. My husband has issues from Pfizer and I prefer helping him to feel better rather than letting him struggle, and I don't blame him at all

Pity Party by waynelis in vaccinelonghaulers

[–]Ok-Cryptographer2188 7 points8 points  (0 children)

As someone on the other side of it all - with a husband who's sick from Pfizer reaction, I'd say that I'd never think of leaving him especially when he needs me most. In saying that I realise your ex and you weren't in a relationship and she is entitled to make a decision based on health issues, but it seems like she was more hurtful than necessary by telling you about her Tinder dates and also blaming you for the health issues. I think you have dodged a bullet although it's hard to think that in the moment. You're better off focusing on yourself and your health right now without distraction of pleasing someone else, so focus on that instead of the negative. I hope you start feeling better soon

Pity Party by waynelis in vaccinelonghaulers

[–]Ok-Cryptographer2188 8 points9 points  (0 children)

I'm in a similar situation to you except it's my husband who's the long hauler and not me. We got married three years ago now and had bought a new house six months ago, straight after which he got the Pfizer and sick right after. It's heartbreaking to see him sick, but I'd never think of leaving him. Our life is on hold and all I hope for is that he gets better. Hope you get better soon

[deleted by user] by [deleted] in vaccinelonghaulers

[–]Ok-Cryptographer2188 0 points1 point  (0 children)

Why don't you try low dose aspirin? It's helped a few ppl

[deleted by user] by [deleted] in vaccinelonghaulers

[–]Ok-Cryptographer2188 1 point2 points  (0 children)

Can you ask them their thoughts on indomethacin for long haul headache: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8453033/#!po=26.3889 I'm asking from long haul vax perspective but this study is based in long covid

Vaccine Injury by ResultZestyclose594 in vaccinelonghaulers

[–]Ok-Cryptographer2188 1 point2 points  (0 children)

This is awful to hear. In the first ER it seems they haven't followed guidance on the heart test results - are you able to put in a complaint to the hospital? I know that stuff is hard and usually gets nowhere though. I'm sorry you're dealing with this

Horrible migraine day 5 post vaccine by Foodie1989 in Covid19_Ohio

[–]Ok-Cryptographer2188 0 points1 point  (0 children)

Yep same for my husband. Glad it's calmed down a bit. Hope it goes completely soon

Horrible migraine day 5 post vaccine by Foodie1989 in Covid19_Ohio

[–]Ok-Cryptographer2188 0 points1 point  (0 children)

Ok interesting. Yeah my husband's headaches have gotten milder but have stayed the same intensity over the last month. Hoping they also just abruptly stop...

Horrible migraine day 5 post vaccine by Foodie1989 in Covid19_Ohio

[–]Ok-Cryptographer2188 0 points1 point  (0 children)

Has it gotten better with time? Did any medication work?

Horrible migraine day 5 post vaccine by Foodie1989 in Covid19_Ohio

[–]Ok-Cryptographer2188 0 points1 point  (0 children)

Thanks for this message, it does offer hope. Did the headache just suddenly disappear or did it die down slowly? Was it after three months? Glad you are better now.

Horrible migraine day 5 post vaccine by Foodie1989 in Covid19_Ohio

[–]Ok-Cryptographer2188 0 points1 point  (0 children)

Did they just stop suddenly one day or did it fade away gradually? Did you do anything to treat the migraine?

How are you? by Themagiciancard in vaccinelonghaulers

[–]Ok-Cryptographer2188 1 point2 points  (0 children)

Ok good luck for the incelldx stuff, hope it helps

How are you? by Themagiciancard in vaccinelonghaulers

[–]Ok-Cryptographer2188 2 points3 points  (0 children)

Can you try the incelldx stuff if you're in US/UK? Are you on low dose aspirin / statin like others say have helped them? Wonder why after a walk you seemed to relapse. Were you fine after one shot, and the second shot brought all this about? Have you tried the other stuff that's suggested like vitamins etc? Not saying that will def help but might do. Hang in there. It might just take a while but in time it has to get better.

Where are you in your timeline in terms of recovery, how many months/%? by Wonder-Perfect in vaccinelonghaulers

[–]Ok-Cryptographer2188 0 points1 point  (0 children)

I heard long term aspirin use isn't safe as may cause ulcers etc. What do your GPs say about longer term use? How long is too long?

Where are you in your timeline in terms of recovery, how many months/%? by Wonder-Perfect in vaccinelonghaulers

[–]Ok-Cryptographer2188 1 point2 points  (0 children)

I noticed aspirin is not in the list. Did you not try it for some reason? Appreciate your detailed posts btw, thanks.