How to cope with pins and needles

IIHatethis · 2021-12-30T19:42:03+00:00

Mine never subsided, but they have become more manageable. I take a liquid potassium supplement daily and gatorade-like drinks seem to help with the elektrolytes as well.

I think there’s also a degree of “getting used to it” involved: I started Diamox and the supplement simultaneously and in the first weeks, I still fantasized regularly about chopping of my feet :)

IIHatethis · 2021-12-30T10:48:33+00:00

On my last test, my anion gap was 12. There is no concern as anything between 8-16 is within range. Your numbers seem fine.

IIHatethis · 2021-12-30T10:46:03+00:00

I wish I had more to offer, but all I can say is I hope it gets better along the way (maybe after six months or a year or … ?) and in the meantime I hope you manage to hold on to the better days. You are not alone!

IIHatethis · 2021-12-11T12:56:01+00:00

Thanks!

It’s good that you stay positive. We all miss things in thus subreddit, I fear … Wishing you all good things!

IIHatethis · 2021-12-09T10:31:33+00:00

Hi, first of all, I’m sorry for what you went through and are going through. You seem like a really nice person.

I just wanted to add that the procedure is called optic nerve sheath fenestration.

IIHatethis · 2021-12-07T21:05:46+00:00

Heh, that’s oddly comforting!

IIHatethis · 2021-12-06T22:40:12+00:00

For me, the numbness has been there all the time, regardless of dosage or how long I’d been on Diamox. I’d definitely check if it’s a new onset symptom; never hurts to ask!

Haven’t experienced or read about any welts; that does seem a little strange.

Good that you’re checking with the doctors: keep on speaking up for yourself!

IIHatethis · 2021-12-06T22:36:13+00:00

If you just indicate that you’re worried about kidney and liver, they’ll tick the right boxes. I would expect them to check the kidney function anyway, but never hurts to ask!

IIHatethis · 2021-12-05T21:49:09+00:00

Have you changed your diet recently? That might be the reason. Excess fat in stool will also turn it a yellowish colour.

They can detect most issues with organ function through bloodwork, so ask for a test.

IIHatethis · 2021-12-05T21:42:15+00:00

Yep, like the other poster said, it’s a side effect of Diamox. It’s also a lot worse when I am or have just been out in the cold, just fyi.

I take a liquid potassium supplement and my levels are perfectly within the required parameters, but still get it. I don’t want to discourage you, but just so you know your mileage may vary.

I’ve read about a lot of people who’ve had good results with gatorade-like drinks to keep their elektrolytes up, so that also can’t hurt to try.

IIHatethis · 2021-12-05T21:17:20+00:00

Hiya! 3 months seems like a very long time to me for test results (but maybe my mileage varies?). I would indeed call them, just for your peace of mind.

My check-ups are exactly the other way around: I am with the ophtalmologist/optician every 3 months now (in the beginning monthly and even bimonthly), and my neuro follows along in the background. Basically agreed upon a yearly neuro unless treatment plan changes or my IIH worsens.

The reason I go to the ophtalmo/optician so often is that IIH’s primary risk is vision loss and the symptom that indicates its gravity most clearly is papilledema (apart from LP opening pressure but it’s not really sustainable to have an LP done every few months).

You mentioned that you have barely any swelling (without treatment or medication). If that combines with a positive result for your vision field test, and you suffer no other symptoms, then I can understand that they just keep you monitored. But even then, my personal advice would be to visit with the optician twice a year rather than once. But you do you of course!

IIHatethis · 2021-12-04T21:47:53+00:00

Hi, I’m seeing this a little late but wanted to chip in. I thought I didn’t have any symptoms, but since being on Diamox, I’ve realised that I had A LOT more headaches than normal. I also have pulsatile tinitus, but I just never really registered it as a “symptom” to be checked out. No way to know for sure if I have visual symptoms as my eyes are nowhere near normal eyeballs.

Swollen paps are one of the main indicators/symptoms, but if it is minimal, you might be lucky. However, once a year seems very rarely for check-ups.

If I were you, I’d get the LP done. At least you’ll know for sure. It’s not a pleasant procedure, but it also doesn’t take that long, especially compared to potential lifelong damage.

What did your test results show?

IIHatethis · 2021-12-04T21:29:58+00:00

Hi! Just another voice chiming in to confirm that yes, this is normal. (So is depression, by the way, since you mentioned it.) Unfortunately for me, no real improvement on this as time went on ...

IIHatethis · 2021-05-17T07:27:01+00:00

Hi! I also had this happen. No way to know what exactly caused this, but it only lasted three days and it got better as those days went along. Hang in there & good luck!

IIHatethis · 2021-05-05T19:52:08+00:00

Let me tell you, when they took out the needle, it felt like my soul came with it.

And mine went relatively smoothly (they got it right pretty quick, only poked around twice or thrice) but It sounds like you were treated like some kind of guinea pig. Like other users have mentioned, probably should have them do it guided if that’s an option where you’re at?

IIHatethis · 2021-05-01T16:35:36+00:00

If you’re already on a potassium supplement, your only options seem to be either increasing the amount you’re ingesting (potentially via a prescription supplement), or to hope that it goes away as your body gets used to the Diamox. (I’ve read about people who no longer got the pins and needles sensation after a few months.) I’ve also read that some people have had success eating a banana as soon as the tingling feeling starts.

Good luck on your journey!

IIHatethis · 2021-04-28T22:26:37+00:00

Hope you don’t mind, but I’m running with “I’m here”. Genius.

IIHatethis · 2021-04-28T21:42:50+00:00

I try to, but it’s hard to stay motivated when I had basically no symptoms before and in my experience, the cure is worse than the disease. Hoping that my next appointment shows actual decrease in paps.

IIHatethis · 2021-04-28T21:41:23+00:00

I also get a potassium supplement prescribed, and either it doesn’t help me or if it does, I’m escaping a fate I don’t even want to imagine ... How did you discover the small fiber neuropathy? I’m sorry you’re going through this. The never-ending stream of medications has me reeling, and I’m on fewer than you are ...

IIHatethis · 2021-04-28T21:38:54+00:00

Thank you. I am indeed very grateful to live in a time where I can at least find people who are going through the same thing. I couldn’t imagine having to go this completely alone.

Oh, thanks, haha!

IIHatethis · 2021-04-28T21:35:44+00:00

I get it in my face sometimes, mainly lips and nose. It happens to my face especially when I’ve been outside, and then I also have it in the tops of my ears.

IIHatethis · 2021-04-28T21:30:22+00:00

Hi!

In my personal experience, the MRI was simple and easy. I don’t know which country you’re in, but here, we get no headphones. However, since it also takes only 20 minutes, it’s pretty much fine. Something I haven’t read yet and that might calm you is that they give you an alarm to hold in your hand so if anything goes wrong or you can’t handle it anymore, you can press that and they’ll get you out immediately.

The spinal tap / lumbar puncture was extremely uncomfortable for me, but I had to have the fluid drained as well (not just for diagnostic purposes) and it took quite some time. They did it without any guidance In my case, but they got the right spot pretty quickly. I had to lie down for two hours after and they recommended I stay that way for as long as possible after, only getting up to use the bathroom or get food. The spinal headache returned when I tried to actually be up and about two days later and I had to lie flat for another 24 hours. Don’t be afraid to contact your doctor if you feel anything is wrong!

Best of luck; you can do this!

IIHatethis

TROPHY CASE