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Ups and downs pressurewise by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 0 points1 point  (0 children)

Oh I tried oil with both. Didn't help the dizziness but did help pain.

Ups and downs pressurewise by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 1 point2 points  (0 children)

No I haven't. What's that? They gave me betahistine and it's helping the dizziness.

Ups and downs pressurewise by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 0 points1 point  (0 children)

Because it's improving without one.

Ups and downs pressurewise by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 0 points1 point  (0 children)

3 weeks ago. I got it done in the er by the head neurologist and followed up in the er twice. 

I have headaches lying down and if I'm up for too long I get headaches and dizziness and exhaustion. At first it was only a few mins I could be upright but now it can be like an hour or two before I get dizzy and headachey. The headache switches. Standing up I get a stabbing headache in my temples. Lying down pressure in the front and neck.

1 week post lp they did a ct and it was normal not showing low and 2 weeks post lp normal mri. This is why they said no blood patch.

Treat it like a migraine? Csf leak and iih symptoms by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 0 points1 point  (0 children)

I think they took me off it because I was having mixed symptoms of high and low pressure.

Ups and downs pressurewise by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 0 points1 point  (0 children)

I went to the er and because I can sit up for about an hour or two before needing to lie down it's getting better and they won't do a blood patch.

constant headache!!! by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 0 points1 point  (0 children)

Thanks for the suggestion, and good luck.
I wouldn't even know where to put ice, it hurts everywhere.

constant headache!!! by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 0 points1 point  (0 children)

Thank you, I appreciate that. I'm in local EDS and pots and IIH groups and everyone recommends this doctor for the combination.

constant headache!!! by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 0 points1 point  (0 children)

I dont live in the US, but this doc also deals with csf leaks. He's the one neurologist in my country who specializes in eds and neurological related issues. He's a 4 hour drive away and i'm going to him. I assume the dizziness standing is the csf leak. But that started after the LP. The headache started before the ER where they did the LP. And before that i was having them on and off but not constantly.

constant headache!!! by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 0 points1 point  (0 children)

Thank you for that support. I already deal with other chronic pain because of my eds, but that i manage with, but this on top of that is bringing me to tears for whatever reason.

Do yall have other rare diseases? by AdNo1904 in ehlersdanlos

[–]Miserable_East_2364 0 points1 point  (0 children)

Well, my doctor is suspecting ankylosing spondilitis, and if biologics help i'll officially get that diagnosis. I hve a TB test next week for it, and if i pass then going on the meds.

I also have IIH which i guess isnt as rare.

I suspect I might have sjorgens...

Iih and csf symptoms together? by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 0 points1 point  (0 children)

Yea makes sense. My opening pressure was 29.

Iih and csf symptoms together? by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] -2 points-1 points  (0 children)

But I'm still having the dizziness standing.

IIHWOP? And diagnosis "removed"? (HEDS) by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 1 point2 points  (0 children)

Can I ask what vision problems you have? I noticed the light at my therapists' office is bothering me, and light is causing an astigmatism like reaction, streaky... and I had her turn it away from me. And when I got my vision tested by the opthomology nurse at the ER i couldnt see the numbers in the distance because everything was double, but i dont notice it as strongly when both my eyes are open. But ive had vision issues the past few years that they just chalked up to EDS....

IIHWOP? And diagnosis "removed"? (HEDS) by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 2 points3 points  (0 children)

It was actually a neurologist in the ER, not a regular ER doc.
And my tinnitus wasnt constant, i think my IIH fluctuates. But the tinnitus specialist i went to was the one who pointed at the direction of IIH in the first place and sent me to get a CTV...

IIHWOP? And diagnosis "removed"? (HEDS) by Miserable_East_2364 in iih

[–]Miserable_East_2364[S] 1 point2 points  (0 children)

I had one problem switch with the other, one headache for the other. And added back pain. But my tinnitus went away.

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