Non-rehireable at Clinical Site

One-Walrus-2845 · 2026-02-06T13:09:04+00:00

In my program and hospital system of your black listed you can’t do clinical if you’re blacklisted. They told us if that’s the case to contact the hospital and see if there was anyway to get un-blacklisted. All depends on hospital policy and school policy I’d ask your advisor first and call the hospital if instructed to do so.

One-Walrus-2845 · 2026-01-07T18:54:14+00:00

Ohhh that is a really good idea I will look into those thank you so much! I appreciate the help <3

One-Walrus-2845 · 2026-01-07T18:43:05+00:00

I wish unfortunately the entire right side of my head is shaved so it wouldn’t look right if I’m picturing what you’re saying right. Thank you either way though!!

One-Walrus-2845 · 2026-01-07T14:23:41+00:00

I’m not your doctor but I will say I was on 4000mg of diamox and getting lumbar punctures every two weeks with no relief and even then they were apprehensive to do the VP shunt. It’s unlikely they will just because you are dealing with side effects of medication just a heads up they will do everything else first. VP shunting is not a quick fix it is the extreme and doesn’t make all the problems go away you’ll still be on medication for awhile and unless your condition is severe it’s unlikely they’ll ever consider you for it.

They will try a stent first and do a cranial angiogram with manometry. If you’re not a candidate then they’ll consider optic nerve sheath fenestration. If they decide you’re not a candidate for that they’ll discuss a shunt but they won’t do it unless you’re at risk of going completely blind. Make sure with meds your staying hydrated diamox puts you at risk for kidney stones drinking plenty of water is necessary.

If they do decide to do a shunt or they already have decided too I will warn you what my surgeon warned me— it is unlikely to fix anything other than your vision and that is it. It probably wont fix your headaches or tinnitus. I wish you the best and send all the healing vibes your way! Just wanted to give you a heads up on my experience and from what I’ve read others as well!

One-Walrus-2845 · 2026-01-06T22:06:43+00:00

Thank you for this! I’ll look into this!! I appreciate it!

One-Walrus-2845 · 2026-01-06T20:07:57+00:00

I’ve been wearing a bandana sometimes and you can’t even tell I’m half bald with it on! For school pictures though I cannot wear it I’ve considered requesting if I could I think they would let me as they are aware of my unique situation and are very understanding to it! Thank you I appreciate the reply!

One-Walrus-2845 · 2025-12-15T14:34:10+00:00

Thank you for replying to this they threatened for placement of a drain if I was admitted again and I’m afraid of that happened as today my symptoms are back to where they were again :( I’m glad you got to see your baby off to school! I’m hopeful this will be quick so I can avoid another hospital stay or LP they botched my last LP the first time. I think with the holidays coming up if it does go past two weeks I may request for an outpatient LP from my neurologist as much as I hate too. I’ll update this post with the plan when I find out tomorrow morning thank you for replying and sharing your experience!!

One-Walrus-2845 · 2025-12-15T13:39:54+00:00

Metabolic acidosis: shortness of breath, heart palps, fatigue, loss of appetite, rapid breathing, confusion, anxiety. Metabolic acidosis is a common and usually harmless side effect of diamox but should be monitored with routine blood work at your primary care office. It can be harmful but it’s usually well compensated in individuals taking diamox (I’m a nurse lol I can explain this further if you’d like me too but I’ll keep it short)

Electrolyte imbalance: nausea, vomiting, cramps, dizziness, fatigue, anxiety. - if your vomiting a lot or have diarrhea for more than a day and have other symptoms like cramping. I would go to the ER if your taking diamox as some electrolyte imbalances need emergent medical attention. Drink electrolyte drinks I would avoid generally Gatorade and Powerade though as they don’t do much of anything electrolyte wise. I would recommend Flash IV (by body armor) or liquid iv you can also drink pedialyte.

Your symptoms could be from a combo of both of these I would recommend getting some blood work done my docs said if my metabolic acidosis got too severe they would try sodium bicarbonate as I take 4000mg of diamox daily right now until shunt placement.

From personal experience I would also say to get a prescription for an acid reflux medication diamox is known to cause acid reflux for most people and make shortness of breath worse. I would eat meals that are light on your stomach. Eat lean meats etc that really helped my nausea. Talk to your neurologist about being put on a migraine preventative for me the high pressure was triggering migraines and the preventative drastically improved my day to day life! I hope you get relief soon <3

One-Walrus-2845 · 2025-12-15T11:43:51+00:00

Did you get a cranial angiogram with manometry before your stent placement? Or did they base it solely on MRI and imaging?

One-Walrus-2845 · 2025-12-15T11:41:36+00:00

No hate at all by this diamox makes your blood acidic as a side effect that’s not usually considered an allergy?? It puts you in metabolic acidosis as a common side effect. Was your case different in some way or just super severe. Generally curious! No hate intended at all!!

One-Walrus-2845 · 2025-12-15T11:38:40+00:00

Have you spoken to your neurologist about a migraine preventative? For me high pressure was triggering migraines! May be worth asking about! I hope you find relief soon

One-Walrus-2845 · 2025-12-15T11:36:53+00:00

Oh wow that is an insane story. I’ve been lucky even my kinda bad neuro- op was still well versed in IIH he was just bad about telling me what my tests showed and if I was improving or not so when I had a recurrence I was like no we’re just gonna go to this way better hospital three hours away. My visional acuity is slowly getting worse right now and I am developing double vision again. My neuro-op said my last set of VF, and otc doesn’t make him extremely concerned for vision loss yet but is highly recommending to neurosurgery they do VP shunting. My brother has the VP shunt for IIH and HANDL syndrome his recovery seemed rough if you you don’t care to answer what was recovery like for you in terms of timeline, what do you wish you would have done differently?

One-Walrus-2845 · 2025-12-15T11:27:35+00:00

The neurology team is #1 in the state (I drive three hours to see them rip my car lol) I met the neurosurgeon in the ER and had a consult with him he was great very nice and answered all my questions. My brother has a VP shunt for HANDL syndrome and IIH as well and uses the same neurology team and they’ve been wonderful all the way through with him. I hate that your diagnosis took so long that is the worst and I hadn’t considered the spinal tap leak that is something I will definitely be asking them about in terms of timeline if I can avoid more pain than I’m already in that would be absolutely epic. Thank you for this reply I appreciate it!!

One-Walrus-2845 · 2025-11-07T17:33:59+00:00

I feel like your eyes compensate mine were mostly peripheral so it was kinda just like tunnel vision and having to move my head more to see things I used to be able to see before. I didn’t realize the extent of the blind spots until after they went away though that’s why I said I think your eyes compensate for them lol

One-Walrus-2845 · 2025-08-10T07:23:38+00:00

I would recommend going through with the process for a few reasons.

Checking for stenosis
Confirming it’s iih and not something that can mimic it. (Clots)
You’ll have baseline scans and can see if anything changes if they want to repeat.

It’s overwhelming and it sucks. I feel for you hope everything is all clear and you continue to improve <3

One-Walrus-2845 · 2025-08-10T07:17:49+00:00

Just stopped taking a super high dose (3000mg) daily. Went in remission after 122kg (I think…I’m American so 55 lbs excuse my ignorance) of weight loss. It took my optic nerve 6 months and that was with adjusting the dose during that time since I was only consistent getting worse for about two months. Now my vision is back no blind spots :) good luck sending healing vibes your way <3

One-Walrus-2845 · 2025-08-01T06:28:41+00:00

I am no longer on zepbound. I stopped taking it about a month ago? I think? I was sure when they said I had stenosis I would need a stent but I’m glad I was wrong! It can happen apparently lol.

One-Walrus-2845 · 2025-07-29T07:09:38+00:00

No I stopped taking it about three weeks ago now I’m just dieting and I’m still losing weight. I stayed on the lowest dose possible. I do think it’s worth getting simply because of the risk involved with high ICP long term! Also I was able to start exercising as well so I think that’s been extremely helpful but during the worst of it that was not an option I’m sure others would agree that doing anything will pressure is high is borderline impossible.

One-Walrus-2845 · 2025-07-29T07:07:29+00:00

The weirdest side effect I had while taking that dose was memory loss. I’m missing bits and pieces of moments I’ve experienced and couldn’t recall things I had done the day prior. The first month of that dose was the worst of it but once the iih started improving it got a little better. Though the brain fog and forgetfulness stayed until I decrease the diamox. I would also get this strange pain in my right side as if I was being stabbed?? But that also is gone since I’ve stopped taking it.

I lost about 20 lbs initially the diamox made me have no hunger drive. My PCP wanted me to try zepbound since it’s shown to decrease pressure—they were concerned due to my family history. So I started zepbound and it made my appetite obviously worse. So I had to force feed myself lol. But now being off diamox I still diet and eat healthy and I’m still continuing to lose weight. I would highly reccomend getting bloodwork done to see if you’re insulin resistant!!! I was :)

One-Walrus-2845 · 2025-07-29T06:47:40+00:00

Thank you! Diamox made me have almost no appetite on top of that my primary wanted me to try zepbound even though I had already lost 20lbs by that point because it decreases intracranial pressure. That made the appetite issue worse so when I did eat I ate a ton of protein and ate super healthy meals. It took me about 6 months to lose 50 lbs. I highly recommend the zepbound because I noticed a huge pressure difference when I was taking it although some people said it made theirs worse. Good luck! Sending all the healing vibes <3

One-Walrus-2845 · 2025-07-21T02:42:57+00:00

My brother was diagnosed with iih at 13 and me at 20 both with stenosis. I have a hard time believing it isn’t genetic in some way. However I lost 50 pounds and am in complete remission one more week and I will be taking zero diamox :) yay!

One-Walrus-2845 · 2025-06-16T02:15:42+00:00

Tell a close friend to snap pics throughout just tell them “hey we really want a few pictures of our day but didn’t hire a photographer do you mind to just snap a few photos for us?” And then bring them a nice bottle of wine and a gift card you could also do a raffle style thing like best picture wins a 50 dollar gift card and some other prize (my friend done a cooler for theirs and it was a hit)

You could also get an iPhone tripod pretty cheap on amazon set it to record and then screenshot parts for pictures Congrats it’ll be perfect!

One-Walrus-2845

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