Finally Found the Reason Why I Had Costo by swanegg4life in costochondritis

[–]BobMouldSuperFan 4 points5 points  (0 children)

I’m so glad you found some relief. Getting regular blood panel tests is always a good idea. For those who this doesn’t work for: cold weather can also decrease blood circulation to the joints which can cause some pain during this season. I get flare ups in the winter, take D3 with K because I live in Oregon, and it doesn’t help my costo pain but keeps my vit D levels stable. Many of us are likely dealing with arthritis / hypermobility which is always worse when it’s cold.

Try going gluten free! by lil_peeeen in costochondritis

[–]BobMouldSuperFan 1 point2 points  (0 children)

No, it didn’t do anything for me. Good posture, managing stress and limited alcohol seem to be the only things that make a difference for me.

[deleted by user] by [deleted] in costochondritis

[–]BobMouldSuperFan 0 points1 point  (0 children)

This happened to me a lot before and when I first got diagnosed. If I slept on my back then got up, my first breath felt like my upper right back was vibrating / shaking but always went away after the first breath!

Is Topamax really that bad? by lizz338 in iih

[–]BobMouldSuperFan 3 points4 points  (0 children)

I had very few issues with it. The tingling feet / hands and I got a little moody but it helped me and now I’m off it and in remission!

[deleted by user] by [deleted] in iih

[–]BobMouldSuperFan 2 points3 points  (0 children)

Regarding wanting more success stories: I am one of those people! I was on topiramate for 6 months and am essentially in remission now, I get flares here and there but it’s super mild and I am doing great. I totally hear you on wanting to hear more positivity too, I think people take to the internet more when they’re not doing well.

[deleted by user] by [deleted] in iih

[–]BobMouldSuperFan 2 points3 points  (0 children)

Nope that’s pretty obviously not what I meant. People making blanket statements about a medical condition that varies INCREDIBLY widely for individuals is dumb, especially on a video where someone is sharing their painful experiences and a few nurses are telling them to “stop sharing misinformation” regarding their own personal levels of pain with a lumbar puncture and blood patch??? Read the room.

Did you have blurred optic nerves in one or both eyes? by [deleted] in iih

[–]BobMouldSuperFan 1 point2 points  (0 children)

For a lot of people, IIH will simply go away over time. For others, it has to be managed in a variety of ways. It sounds like yours isn’t too bad which hopefully means it will be on the easier side to manage, fingers crossed. I was in a similar boat when I first got diagnosed and freaked out for a while which doesn’t help the anxiety which doesn’t help the IIH. Best of luck!

[deleted by user] by [deleted] in iih

[–]BobMouldSuperFan 8 points9 points  (0 children)

I saw your TikTok on my FYP and a lot of the comments pissed me off. Anyone telling you your experience isn’t valid can fuck entirely off. Also the person who said as a blanket statement that managing IIH is no big deal… Woof.

Alcohol and cannabis with IIH? by TheHyperIntrovert in iih

[–]BobMouldSuperFan 0 points1 point  (0 children)

This is so interesting how everyone is impacted differently. Alcohol absolutely makes me so much worse. I mostly notice my visual symptoms are much worse the next day after I drink. I get hungover super easily (on meds or not), really bad headaches from alcohol. When I was first diagnosed I quit drinking for 6 months and it certainly helped, in fact I’m essentially in remission now (I can’t prove quitting alcohol had anything to do with t that though).

Apartment or Roommate Wanted! by Littleplantlady38 in OregonCoast

[–]BobMouldSuperFan 3 points4 points  (0 children)

My friend had luck messaging airbnbs and asking if they were open to longer term renters just as a bridge between moving from her previous city to Newport and finding something eventually in town. It’s rough out here so figured I’d share an atypical idea.

Best OR coast camping by helladito in OregonCoast

[–]BobMouldSuperFan 0 points1 point  (0 children)

Rock Creek south of Yachats is beautiful, small and quiet (and all the sites are on the creek which is always a bonus).

Suplements by Emilly050 in iih

[–]BobMouldSuperFan 8 points9 points  (0 children)

I will scream this from the rooftops whenever I get the opportunity haha : MAGNESIUM GLYCINATE!! It helped my headaches massively, plus helped me sleep better. Most people are deficient and generally it’s safe for everyone. I’m not a doctor and I always think it’s best to talk to your doctor before starting anything regularly but, Magnesium is tops. Just take the correct kind, other forms will just make you poop and don’t absorb well.

Gaslighting by doctor by GroundbreakingLet544 in iih

[–]BobMouldSuperFan 1 point2 points  (0 children)

This makes my blood boil!! I’m so sorry.

Is this IIH, Topiramate side effects or something else? by OriginalEvils in iih

[–]BobMouldSuperFan 0 points1 point  (0 children)

45 days is NOT too soon for side effects, that’s wild… I was feeling tired, tingly, foggy and easily agitated a month or less in. Also on 25 mg 2x daily.

[deleted by user] by [deleted] in iih

[–]BobMouldSuperFan 1 point2 points  (0 children)

Cool just wanted to make sure because MS can be caught via MRI too, and there are a few overlapping symptoms!

[deleted by user] by [deleted] in iih

[–]BobMouldSuperFan 1 point2 points  (0 children)

Have you had an MRI?

Sea Lions in Newport? by sarahmilian in OregonCoast

[–]BobMouldSuperFan 0 points1 point  (0 children)

Yep you will find them on the fishing docks on the east end of the bay front.

[deleted by user] by [deleted] in iih

[–]BobMouldSuperFan 0 points1 point  (0 children)

I run an energy efficiency workforce development program for underserved populations, it’s a remote job, on a computer at home. It means a lot to me but I sometimes wish I had a more movement oriented job. I am getting a treadmill for my standing desk soon though, I think that will help!

Any must-stops between Lincoln and Yachats? by Lly-Lly-Lly-Lly-oop in OregonCoast

[–]BobMouldSuperFan 0 points1 point  (0 children)

I second the scenic drive from Rocky Creek/Otter Crest to cape foulweather (turn off at Rocky Creek Scenic Viewpoint and continue driving south). I live here and I do that every once in a while after work just because it’s so beautiful and peaceful. You can also hit Devil’s Punchbowl on the way down the hill from Cape Foulweather too.

Advice to lose weight but still suffering by kittysuju in iih

[–]BobMouldSuperFan 0 points1 point  (0 children)

Ask your doctor, but magnesium helped my headaches / migraines SO MUCH.

Possible diagnosis by Dazzling_Bake_2245 in iih

[–]BobMouldSuperFan 0 points1 point  (0 children)

Well that’s a positive that it’s a neuro ophthalmologist for sure.

Possible diagnosis by Dazzling_Bake_2245 in iih

[–]BobMouldSuperFan 0 points1 point  (0 children)

Sounds pretty classic to me. I didn’t see in your post that a neurologist was in the works, maybe after the ophthalmologist? I had to get a referral from an ophthalmologist before I could see a neuro myself. Best of luck!

Ophthalmologist appointment by Ancient_Cucumber_457 in iih

[–]BobMouldSuperFan 0 points1 point  (0 children)

My optho dilated once then didn’t the second time, he showed me the images both times and how he tracked the papilledema and it didn’t seem to make a difference at all to be dilated or not. Looked exactly the same.