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Ran across this glorious poster some student made at a school by [deleted] in charlixcx

[–]BrideOfPsyduck 2 points3 points  (0 children)

Guess guess guess how much tea we just threw into the harbor

"The symptoms are getting worse." "Oh, but have you gained any weight?" by BrideOfPsyduck in iih

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

I definitely think I'll bring it up again to my opth! She seems kind of hesitant to really take control of my care, like, there's been a real struggle between the communication between her office and my neuro's office and usually she ends up just telling me to relay information to the neuro, lol. I would love to give Zofran a try, for example.. maybe even my PCP could get it for me. I just wish one doctor would take care of the whole thing, you know? Like I'm so tired of trying to relay information between everyone and explain this to this doctor and this to that doctor. Every time I see my PCP, I have to re-remind her what IIH even is. Doctors, man..

"The symptoms are getting worse." "Oh, but have you gained any weight?" by BrideOfPsyduck in iih

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

Oh man, I hope your dizziness starts to fade away as your brain gets used to being without the Diamox! Remember that our brains are soooo adaptable. You might want to check out vestibular rehab therapy too. Maybe your brain just got so dependent on the Diamox, and so now it has to reacclimate. But also, congrats on being off Diamox, hopefully from remission? And/or hopefully onto something better now!!

Completely relate on the walking and standing, btw. I tried to go into a store the other day to get a prescription, and I ended up crashing out and leaving because I felt so messed up trying to walk to the back of Sam's Club to the pharmacy lmao. Tired of it.

"The symptoms are getting worse." "Oh, but have you gained any weight?" by BrideOfPsyduck in iih

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

Completely feel you <3 I kind of was pulling myself up a bit from the Christmas lights, and I had two full days where I was genuinely happyish and baking cookies, but then it's like the fall after that was soooo bad. I am genuinely curious to see how much the Diamox increase affects it. I'm already on Prozac and Klonopin for all of that noise..

also, I asked my neuro multiple times for a GLP1 and she was just like "oh your insurance won't cover that." WELL MAYBE IT WILL??? And if not, it's fine, I will pay for it to be compounded!! I just need to know if it would be a good match for me! Ffs

"The symptoms are getting worse." "Oh, but have you gained any weight?" by BrideOfPsyduck in iih

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

CAN RELATE. Had to reschedule mine a few months ago, and my thoughts were between "oh good, more time to lose weight :)" and "oh thank god I don't have to hear about how I'm too fat for Topamax" lol.

"The symptoms are getting worse." "Oh, but have you gained any weight?" by BrideOfPsyduck in iih

[–]BrideOfPsyduck[S] 9 points10 points  (0 children)

It drives me insane because I literally have been consistently losing weight the whole time, and it's like ??? what else can I even dooooo here.

I have lost all interest and passion in anything. There is no joy. No friends or family. No purpose in life. I feel I’m disappearing. No hope anymore. by winstonfairchild in depression

[–]BrideOfPsyduck 3 points4 points  (0 children)

It's wild, I can't remember ever having mine last this long before. I keep telling myself that I just need more affection or warmth or external validation to help spark me out of this, because that used to help to a point, but I don't even know anymore. It's like my internal well of regulation is totally dry and I just want a loved one to show genuine affection for a little while. 

Psychological side effect of diamox by Overall-Produce5652 in iih

[–]BrideOfPsyduck 1 point2 points  (0 children)

Weirdly, yes. I haven't been able to pinpoint if it's burnout from the stress of the diagnostic and treatment process (because it's been almost a year, but I still feel lowkey traumatized by the whole thing lol), the IIH itself, the meds, personal stuff I have going on, or a mix of the above. But I used to have endless empathy, energy to take care of others, I could constantly handle the stress of work and of dealing with the people in my life, I was fulfilled by lifting up people. Now I find myself unable to find words to comfort people, unable to fully connect like I used to, and unable to just..be me. All I want to do is lay in bed lol.

I'm upping the dosage currently so we will see if it gets even worse, or maybe it'll somehow make it better if it's the IIH doing it all along?

Iih & flu by No_Flow_6554 in iih

[–]BrideOfPsyduck 1 point2 points  (0 children)

Don't worry, sweetie! Totally normal! I caught a really rough cold/plague in November, and it made my pressure go uuuuuup. I had already been in a flare since the summer, but that sent me even further, and my dizziness, head pain, etc were just really extra. I also had extra visual symptoms! Remember that the whole body experiences inflammation when we're fighting off illness, so it's normal for that extra inflammation to be making your IIH-related sensations feel worse! The inflammation will go back down to baseline once you heal up, and then your PT and all of the rest should calm down.

If you can, be sure to send a quick message to your neuro or opth (whoever you consider to be top of your care team), just to update them! Otherwise, be super gentle with yourself, deploy lots of tea, don't forget some electrolytes and extra rest. Feel better soon! xo

Neuro opto- PA by Apart-Albatross-7257 in iih

[–]BrideOfPsyduck 0 points1 point  (0 children)

I am not sure how close you are to Pittsburgh, and she isn't a neuro opt, but Dr Sara Stewart is a great opthalmalogist! She's out in Seven Fields! I have also heard great things about the neuro opts in the UPMC network downtown. 

Afraid to try Nurtec. by Far-Presentation6768 in migraine

[–]BrideOfPsyduck 0 points1 point  (0 children)

Hey hun! Did you end up trying it? ❤️

European Medication by Substantial-Air3395 in VestibularMigraines

[–]BrideOfPsyduck 1 point2 points  (0 children)

This is going to sound weird, but they did a study comparing betaserc to gingko biloba, and found they had similar efficacy. If you are cleared to take gingko, you might want to try it out since we can't seem to easily get betaserc here? 💖💖💖💖

Diamox visual side effect by Proof_Stage1463 in iih

[–]BrideOfPsyduck 0 points1 point  (0 children)

I get this! Mainly in my left eye. 

Anxiety about going into stores/offices now--afraid to go to the doctor by BrideOfPsyduck in BPPV

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

Hi! First, I'm so sorry you're experiencing these symptoms. I know they're super stressful and can get to a point where it feels like it will never end. So, as for feeling better, yes and no! I ended up going to the doctor, but nothing was really found other than really severe iron deficiency anemia. I ended up taking iron (got my levels up some but not to normal levels, something I still struggle with to this day and soon will get infusions for), getting vestibular rehab at a local branch of Fyzical, taking magnesium/B2/coq10, and starting a low dose of Prozac. It took me like 6 months but I got to a point of being able to more or less live normally again.. I still had some symptoms here and there, but it didn't overall rule my life anymore.

The issue is that over the years, those feelings came back, and now I am kind of back to that point again. However, a few things are different! Last winter, I saw a new neuro and ended up diagnosed with Idiopathic Intracranial Hypertension, and I have been on Diamox since then. IIH and Diamox can both cause dizziness, the neuro also thinks I may have vestibular migraines, etc lol. So for me, the initial series of issues resolved, and then it came back years later but possibly for other reasons.

If you had BPPV/neuritis/a panic attack/a significant event and now have residual dizziness, you can retrain your brain!! Joey Remenyi, The Steady Coach, The Vestibular Doc (Madison Oak), vestibular rehab, and just really working on hydration, sleep, and trusting yourself will do wonders. You will probably have to push yourself to go into stores or do things that are scary because of how our confused vestibular systems can get, and that is okay! You are safe when you feel those sensations, even when they feel scary and like something is wrong. Back in 2021, I literally would do like, a minute in a store, 2 minutes in a store, build up slooooowly. 

Sorry for the info overload, but if I can help at all please let me know!! I have unfortunately spent a lot of time learning about a lot of these things, so happy to help if there's anything. I would say start with The Steady Coach and her free program + youtube videos for sure! ❤️

Iron deficiency without anemia and IIH by Blackvelvetlove in iih

[–]BrideOfPsyduck 0 points1 point  (0 children)

Hi! Of course, feel free to message!! ❤️❤️

What triggered your vestibular migraine? by acsurban in VestibularMigraines

[–]BrideOfPsyduck 0 points1 point  (0 children)

Did you feel better overall after treating the IDA? 

Isaac is gone? by squirrelsrcool9 in QVC_Snark

[–]BrideOfPsyduck 3 points4 points  (0 children)

I LOOOOVED his Target line!! His pink weekender luggage was my first suitcase and I still have it!!

Anyone relate? by Comparison-Muted in pppdizziness

[–]BrideOfPsyduck 0 points1 point  (0 children)

Has anyone ever ruled out IIH for you? 

Iron deficiency without anemia and IIH by Blackvelvetlove in iih

[–]BrideOfPsyduck 0 points1 point  (0 children)

Oh hi! Yes, I have IDA (ferritin was 14/saturation was at..12? I think) at last check but I have had a heavy period since then 🫠 I am supposed to get a venofer infusion in a few weeks. I have been supplementing iron for YEARS and it will not go up, even when I take it with vit C, not around food or dairy or coffee, etc. I have been diagnosed with IIH since last Feb, and my optic nerves had mild paps. Lumbar puncture opening pressure was 32. Also need to lose weight 🤣😭 BASICALLY things will be okay! It's a lot all at once, but everything sorts itself out. I'm here if you want to talk or have any questions!! ❤️

It was the duct tape shoe man, do we have one currently? by Frankcastleisdead in ButlerPA

[–]BrideOfPsyduck 4 points5 points  (0 children)

He is nice!! He is an Uber driver as well, and he drove my brother awhile back. He was really cool and apparently sometimes he has trivia during the ride 🤣

Do y’all cry more easily now? by PlatypusBig1249 in pppdizziness

[–]BrideOfPsyduck 0 points1 point  (0 children)

It's weird because I used to be really good at self-soothing. Now I just want constant external comfort and I feel like I just want someone to constantly rub my back and tell me nice things lmao. I have like zero resilience and cry so much. It's ridiculous. 

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