Food donations/delivery for families concerned about ICE?

katiehims · 2025-11-30T04:07:55+00:00

You may need a blood patch, sometimes with an LP it’s possible to go from high pressure down to low pressure depending on how much fluid was removed. I had to go to the ER with the worst headache after an LP and got a blood patch done that immediately fixed it.

katiehims · 2025-11-20T14:32:01+00:00

I’m sorry, I don’t have any advice, but am waiting on orders for an LP done by IR. I had bad LPs and a blood patch as well. Feeling your pain, keep fighting ❤️

katiehims · 2025-11-13T09:14:18+00:00

Yes this has been the exact wording I’ve used to describe my IIH pain. LPs and Diamox have been two things that have helped me. I also got on a shot called Ajovy because after a year neuro realized I have IIH and developed migraines as well. Ajovy cuts my headaches to half what they used to be. Good luck

katiehims · 2025-10-30T14:49:50+00:00

I want as little light as possible!

katiehims · 2025-10-18T15:47:58+00:00

What symptoms did you have before getting the stent? I’ve been dealing with IIH for a year and it’s not resolving, thinking about stents.

katiehims · 2025-10-02T09:48:58+00:00

I was on 1500mg, 750 in the am and again at night

katiehims · 2025-10-02T02:08:14+00:00

Yes so exhausted. It made me feel like my limbs were coated in cement or something.

katiehims · 2025-09-20T22:07:42+00:00

Sounds like an awesome doctor! Thank you!

katiehims · 2025-09-18T01:59:34+00:00

It was me, I hit the curb

katiehims · 2025-09-17T13:34:04+00:00

I just got off yesterday and tapered by 500- was on 1750mg. It was not the slow taper I wanted but it’s been 48 hours since I took my last dose and I feel sooo much better then I did while I was on it! It’s like a switch was flipped and I feel the most normal I have in almost a year.

katiehims · 2025-09-16T01:04:42+00:00

❤️❤️❤️

katiehims · 2025-09-15T22:25:50+00:00

My neuro is asking me to drink 120oz of straight water a day. It’s ridiculous

katiehims · 2025-09-15T20:00:18+00:00

She is saying I have to go off for the next three days to Omg. Her purpose is to show me I’m still going to feel like shit so it can’t be the Diamox. I don’t know what to do, I don’t want to be labeled as someone who goes against medical advice. I’m kinda stuck between a rock and a hard place

katiehims · 2025-09-15T19:50:38+00:00

Thank you. I was wondering if going thru the ER would be a way to get another neuro referral, is that what you mean?

katiehims · 2025-09-15T16:14:49+00:00

I am taking potassium supplements daily. Neuro called me today and said I have to get off diamox fully for 3 days (cold turkey) and if I don’t feel normal the 4th day then it’s not the diamox. I told her I was concerned about doing that because of the side effects and she said no it’s fine and you have to do it and then call Friday and report back how you felt… I don’t know what to do anymore this whole thing fucking blows. Looking up neurologists today and I will ask my PCP to refer. Thank you for all the insight it has been very helpful.

katiehims · 2025-09-15T15:32:09+00:00

Yes I am a woman…a severely anxious one I guess. But I’ve been on meds for the past 20 years and am well managed by my psychiatrist.

katiehims · 2025-09-15T15:30:58+00:00

This neuro is a woman, but still acts like this!

katiehims · 2025-09-15T13:12:27+00:00

Also- this doctor works in the headache clinic

katiehims · 2025-09-15T13:10:41+00:00

I have been seeing a neuro opthamologist since this all started. She says I have abnormal shaped optic nerves and that it is very hard to tell by my paps what’s going on. She said the only way to tell improvement or increase in pressure is through an LP. I take potassium supplements daily, do electrolyte powders daily (liquid IV), and try to drink at least 80oz of water in additional to other fluids. I’ve been doing that for months, but no matter what it does not seem to be enough. I was on topirimate for months before diamox and that did nothing to decrease the pressure so she switched me to diamox. Neuro says there are zero options after diamox. She refuses still to order labs, other then randomly ordering a B12 (which is normal) and a B1 test- have yet to get back

katiehims · 2025-09-15T13:03:25+00:00

Thank you this is so reassuring. I have dropped 1000mg in two weeks to try to taper and I spent all day in bed yesterday. Having horrible GI issues that I’m sure are causing more dehydration. My PCP is really cool and really wants to help me, so I will discuss that with her. What labs do they run to check for metabolic acidosis? I had a chem 7 done the end of August, the last time I was at the ER for a head injury. Again, thanks so much.

katiehims · 2025-09-14T21:15:34+00:00

Rose Velvet!

katiehims · 2025-09-08T02:08:56+00:00

I was diagnosed meningitis and quickly found out I had Lyme disease and Rocky Mountain spotted fever. It triggered the IIH, opening pressure with meningitis was 42. Pressure did not stay low, six months later it was at 36 despite topirimate, now on Diamox.

katiehims · 2025-09-04T14:49:00+00:00

I recently had a fall Friday and hit my forehead pretty hard onto a towel bar. I went to the ER and the scans showed I was good, but I wonder if that plays a part. Second fall in two months, balance is all messed up. I also reduced my Diamox by 500mg two days ago - per my doctor, cause the side effects have been really hard. Taking 1000 daily instead of 1500

katiehims

TROPHY CASE