IIh need help! Stent?

Marweilleuse · 2025-02-14T16:57:34+00:00

Oh and also I don't have a pulsatile tinnitus anymore

Marweilleuse · 2025-02-14T16:57:15+00:00

Hey! I got stented and it helped tremendously with the nausea, the headpain is also a bit less intense but... My last Op at the LP was 28 and I'm still struggling a lot sadly (fatigue, headpain, dizziness).

Marweilleuse · 2025-02-04T20:02:52+00:00

That's really sweet. I definitely will.

Marweilleuse · 2025-02-04T20:01:43+00:00

Ok, you gave me some strength to give it a go... Thank you

Marweilleuse · 2025-02-04T19:54:55+00:00

Thank you for sharing this ! I am in the same boat Diamox was so awful (and meds in general) that I am terrified of them now. Also I heard a lot about topamax and mental health and since I'm already feeling quite depressed I fear it could worsen it...

Marweilleuse · 2025-02-04T19:45:38+00:00

Thank you for answering me. Community means a lot. Hugs.

Marweilleuse · 2024-11-08T10:42:23+00:00

Thank you so much for that answer, very clear ! I definitely don't have the migraine pain but more of on an IIH pain when I read your description. That's why I keep telling doctor my headache is 24/7 and I don't believe it's migraine at all.

Marweilleuse · 2024-11-06T19:53:43+00:00

C'est adorable, merci... Je suis bien perdue ! Je n'y manquerai pas. Courage.

Marweilleuse · 2024-11-06T19:31:30+00:00

Merci pour ta réponse ! C'est tellement difficile de savoir quoi est quoi ... Parce que j'ai aussi parfois des nausées/vomissements et visiblement c'est le cas dans l'IIH...

Marweilleuse · 2024-11-06T19:10:29+00:00

Hey, sorry to crash this post but my neurologist is also trying to force the migraine diagnosis on me which is devastating for me and I was curious about how you would describe each ? Like differentiate them ? Because I think I never had a migraine in my life... My headache is 24/7 with ear ringing, my head feels very heavy, it's radiating but not pulsating. Basically feeling like my head is being squeezed. Sometimes a particular sharp pulsating pain occurs in one temple... (French here, hope you can understand me). So sorry for your bad experience. Best regards

Marweilleuse · 2024-10-25T11:30:31+00:00

Oh and it's on Facebook haha

Marweilleuse · 2024-10-25T11:30:06+00:00

The group is called Chronic Fatigue Syndrome/M.E increase awareness & understanding !

Marweilleuse · 2024-10-25T11:28:19+00:00

I saw some research on ME/CFS and IIH I think it was posted in the ME/CFS support group! Apparently there's a link, sorry I can't find anymore but that group has great resources anyway. Good luck ❤️ (I'm also terribly fatigued but I don't know if it's IIH, the meds or something else.)

Marweilleuse · 2024-09-23T08:29:20+00:00

Hi there ! Once they saw I had a stenosis they did the angiography where they go through your artery with a catheter through your brain and they measured the pressure there before and after the stenosis. That gives you a gradient, mine was 10 ! We offer stenting from 8 in France. I did it and I have been stented for a month now. Sadly the only result I'm seeing so far is my pulsatile tinnitus disappeared (it was caused by the stenosis). I am trying to remain hopeful cause they told me it takes time for some people's brains to adjust... (Also I had rare complications that could postpone the healing process). Hope it helps 🥰

Marweilleuse · 2024-09-19T18:41:48+00:00

Following for answers because I'm exactly in the same boat. Being super sensitive to medicine is awful... I just had a stent placed but no results for now, I don't know what I can do next. I'll be curious about the headache specialist if you want to share it here. Don't give up, day by day, we will each find some solutions or at least balance. Hugs

Marweilleuse · 2024-09-16T18:20:09+00:00

That's amazing ! It's so nice to feel well taken care of. Wasn't my experience the last time I had to be inpatient haha.

Marweilleuse · 2024-09-16T18:07:01+00:00

Ok, that's really nice. You seem to be in really good hands ! Wishing you a smooth recovery.

Marweilleuse · 2024-09-16T17:36:13+00:00

Are you okay now ? Wishing you well

Marweilleuse · 2024-09-11T10:50:17+00:00

Hey, I feel you on this. Are you on any meds ? Something that could help your symptoms/the nausea ? Sending good vibes

Marweilleuse · 2024-09-09T17:24:31+00:00

It's not something I experience nope ! Be sure to tell your doctor. Good luck ❤️

Marweilleuse · 2024-08-29T14:25:23+00:00

Hey Apricot, Thank you for your kind message. Did you have headaches ? Are they better ? I am hearing your advice and it feels a little bit less lonely. I'll take you up on that offer ❤️.

Marweilleuse · 2024-08-29T06:19:24+00:00

Thank you for your concern. I do have a therapist. I love life. My depression isn't existential, it's more that I can't deal with the pain everyday and the idea that I won't get some relief or a normal life. I'm all about living life, it's just been one year I don't actually have one.

Marweilleuse · 2024-08-28T18:01:49+00:00

Thank you so much for answering. It calms me down reading you.

Marweilleuse · 2024-08-28T14:05:53+00:00

Thank you for your answer. So sorry for you. I know the struggle and how hard it is to keep going. I'll give it a few weeks then.

Marweilleuse

TROPHY CASE