Shows the Silver Award... and that's it.

Thank you stranger. Shows the award.

When you come across a feel-good thing.

  1. I'm not a doctor and this isn't medical advice obviously but I was in kind of a similar boat where my case was mild with paps but very bad headaches and migraines the way my doctor explained it to me was basically the headaches suck but rarely cause permanent damage and topamax is decent at treating them and tends to cause fewer side effects but isn't as good at treating the paps, meanwhile diamox tends to knock out the paps which can damage your vision permanently and also knocks out the headaches pretty well, but tends to have worse side effects. So if your eye appointment isn't for a while I could see the doctor suddenly changing their tune to hmmm ok let's make sure we're preserving your vision just in case since we don't know how bad your paps are right now.

  2. Interesting! That makes more sense… in my case my headaches are way worse than my eyes are, but I do have some mild blurring in one eye… so yeah I guess better safe than sorry with the eyesight. 😬

  3. You're welcome, I hope you're able to get some relief soon!

  4. I'm managing with medication (topiramate) and lifestyle changes like physical therapy for neck and shoulder tightness, and more exercise and better eating for weight loss (just over 10lbs so far, doc wants me to lose another 15ish but my symptoms have already significantly improved and the big over eating holidays are right around the corner so we'll see lol).

  5. I had one booster before IIH and it kicked my ass for about 18 hours with mild fever, chills, awful body aches, exhaustion, etc, the "standard" flu symptoms I'd say and I was maybe a little extra tired for a few days after. I recently got the bivalent booster and flu shot at the same time and it did pretty much the same thing, felt like ass for about a day and then was pretty much fine just more tired than normal. I didn't notice it have any effect on my IIH symptoms whatsoever. I'm also on medication and pretty stable right now so that's different from your situation unfortunately. Sorry your neurologist won't even look at you, that's really shitty. I haven't even been to an NO, my neurologist is managing my IIH without an NO at all so it's really stupid that they're just letting you suffer like that. I know you didn't ask for advice so sorry if this is annoying and feel free to ignore, but I've found "TheraIce Rx" freezer caps help me a ton with the pressure headaches and they're pretty cheap so that might give you a tiny bit of relief until you can get a doctor that won't be an asshole. Best of luck <3

  6. I have adhd and am prescribed adderall but haven't been able to take it since my IIH symptoms started around April of this year because it triggers migraines and brutal neck/jaw pain once it kicks in. Previously I was on the same dose of Adderall for several years with no issues besides some mild teeth grinding and loss of appetite so my doctor is pretty sure it's either the IIH or an interaction with the meds causing the sudden crappy side effects so he advised me to stop taking it until we get the IIH managed, which has been a bummer. I might be an outlier though but figured I'd respond and at least boost engagement in the thread a bit even if it's not particularly pleasant news.

  7. I can’t take adderall bc of another brain condition that I have but I believe that it acts like how caffeine does and we aren’t supposed to drink caffeine with IIH.

  8. That's interesting, my neurologist never said anything about avoiding caffeine. After my LP they actually told me to rest and lay down as much as possible and drink a lot of caffeine lol but that was just for the couple of days after that procedure. I haven't been drinking much aside from a diet coke or the odd fancy coffee as a treat every other week or so if I have a morning appointment out so I don't think I'm having enough to mess with anything. I have a follow up appointment with neurology in a couple weeks though and now I'm really curious about my doctor's opinion so I'll try to remember to ask

  9. I found TheraIce brand cap online, I think it was Amazon or Walgreens and ended up liking it so much I bought a second one so I always have one cold lol. It's basically a beanie that goes down to your eyes and it feels like heaven when you have a bad headache

  10. I've had a ligament shortened in my dominant shoulder and it has held up pretty well for almost 3 years so far. I've only just gotten a hEDS diagnosis about a month ago, but long before I knew EDS was a thing I knew my shoulder would dislocate at the drop of a hat and it was very painful. I went to an ortho and after asking me a bunch of questions and yanking on it a bit, he said sent me off for an MRI arthrogram thing (which was not very fun). At the follow up he basically said I could continue to do PT without the surgery but it would probably keep happening so I opted to do the surgery and follow up PT. Recovery was R O U G H because I couldn't use my dominant arm very well for about 3 months and had to do some intense PT during that time, but I haven't dislocated it again since and only sub luxated it two or three times vs before the surgery I could dislocate it taking off a particularly tight sweater. It hasn't made it completely pain free, especially if I have to carry a heavy backpack for a while or take a long flight, but it's much better than it was, so I'd highly recommend it if your doctor says you're a good candidate.

  11. Thank you very much for sharing this, it’s very insightful and helpful to know your process

  12. You're welcome, I hope you're able to get some relief soon!

  13. I carry ear plugs and sunglasses any time I have to use the subway or go to other crowded places for exactly this reason. I get some funny looks sometimes but I just try to pretend I don't notice lol. Reading the part in the book where he turns off his tin and everything feels numb and nothing I was pretty jealous until the whole fire part lmao

  14. Well... this is embarrassing... I'm having a woooosh moment right now.

  15. No worries goncho, I was scrolling by and saw a post on cremposting asking to make the comment section to look like what Kaladin's messages might be and the very next post I saw was from a post traumatic stress disorder (PTSD) subreddit where someone was very upset and asking for some mental health support by screaming AAAHHHH, which is a funny coincidence because Kaladin and his bridge 4 buds all have big time "battle shock" which is another way of saying PTSD.

  16. Activated charcoal dramatically reduces the efficacy of most medications and a lot of the information you've posted doesn't have any scientific basis. Highly recommend speaking to actual medical professionals instead of YouTube before continuing this regimen and especially before recommending to others.

  17. I've found that very small amounts of THC edibles help with the anxiety and headaches, but I live in a place where it's legal. I've also found that if I mess up and accidentally take too much it makes both way way worse so if you're able to try it I'd recommend starting off really low dosage (5mg or less). I'm also on topiramate not diamox so you might need to check in with your doc if THC is safe depending on your specific meds if that's an option for you

  18. My neuro has had me titrating up to 100 mg over the past 5ish weeks and my headaches have improved significantly. I asked for some nausea meds to help with feeling queasy from it and that's helped me a lot, he gave me zofran 4mg once every 8 hrs as needed. The back and neck pain has sucked big time and I've had to incorporate daily stretching/foam rolling and be really really conscious of my posture throughout the day and have my partner rub my back most nights before bed. It's kinda brutal but nowhere near as bad as the headaches. I'm down a little over 5 pounds and I'm hoping once I hit about 15-20 my doc will have me taper off the meds and see if the pressure has improved enough to go without them. The tingling is so freaking annoying and I haven't found anything that helps, but I haven't tried vitamin c like some other commenters have suggested so I might give that a try as well.

  19. Thanks this ruined my life (complimentary)

  20. I'm so bummed I was upvote 32 and not 33 but my break at work is over in like 2 mins lol excellent job, keep up the good work! You got this!

  21. I notice the painful tingles more when I'm too hot or too cold. Bringing my temp back to normal usually helps mellow them out. Laying down is also my go to for relief.

  22. Seconded on temperature regulation. I'm on topiramate and it makes my lips tingle a ton if I'm too hot or cold. I've found that laying down with two or three pillows (so not quite flat but also not quite sitting up) helps a little as well for the headaches and the face tingling.

  23. I used to really enjoy the smell but I'm just shy of 100 days smoke free and noticed over the weekend when I was eating at a bar/restaurant patio area that all the ash trays were full and smelled terrible to me. I ended up having to move them to an empty table far away from us so I could enjoy my food. It was kind of a fun realization/milestone to hit, I hope you get there soon.

  24. I've noticed my charge 4 thinks I'm sleeping sometimes if I'm super focused on reading something at work and not moving very much lmao

  25. Congratulations, that's huge! I hope the next year is much kinder to you.

  26. Congratulations! Nicely done. I'm just a few months ahead of you and my experience is exactly the same.

  27. Congrats to you as well! 6 months feels so far off but I'm sure it'll go by fast. And I'm with you on the candy addiction lmao my favorite is blow pops

  28. We're within hours of being quit twins! Congrats on the kickass progress

  29. I'm on day 9 of generic champix and day 2 of not smoking with very minor withdrawal symptoms. I've tried to quit about a million times and this is the easiest I've found the beginning stages by far. You definitely want to take it with a full meal though, I tried with a snack and it tore my stomach up. Good luck!

  30. Any night terrors or suicidal thoughts? That's what I'm most worried about. The psychological side effects

  31. I've had a few bad dreams but I wouldn't call them night terrors. My dreams in general have been a lot more vivid and memorable. And no suicidal thoughts, I've actually been quite a bit less depressed than normal now that I think about it.

  32. I have always had a difficult, no, miserable existence. I accept this as fact. I go up, the world goes down. I go down, the world rises to punch me in the mouth. I haven’t won and when I lose it leaves me battered and left alone like roadkill. It was no surprise when I woke up this morning and discovered that my cat had passed in his sleep. A single tear ran down my cheek. That was all.

  33. Omg this was such a fun response, thank you so much. Your writing style flows so well with the comedy drama, many kudos!

  34. There are a lot of comments here so sorry if this is a repeat but, my partner and I are pretty much the same way. He can fall asleep easily and has a bed time routine and I'm a mess lmao. I've found listening to an audiobook of something I love that I've read a bunch (or just white noise) helps me fall asleep, but kept him awake until the sleep timer shut it off. He found a sleep mask that has Bluetooth headphones in it, so I can listen to my sleep noises without having to have anything in my ears keeping me awake or making my sensory issues mad, and he doesn't have to hear it, and it's helped so much. Maybe if she gets one like that she can turn her screen away from you or put it on as dim as it'll go and she can watch her tiktoks without bugging you?

  35. Brandon Sanderson's new Kickstarter. If he runs as fast as he writes I'm in trouble lmao

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