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IIH/PTC Not new..been awhile since I've been on here

How often do you say these? #iihbrain , #iihsucks , #iihbrainpain ,
#whathappenedtome , #brainsurgerysucks , #WTH , #ididntcausethis , #iihrareincurablebraindisease

I am saying or thinking these at least 2 or 3 a day. It took from 2004-2016 to get a dx. l would love to tell you how after all the procedures, Scans, eye tests,and Specialists, I am in remission. No. I am not a candidate for shunt placement. Surprise! I didn't want one. But, I also didn't know of any other treatment option other than Diamox, which at 750mg twice a day caused extreme leg pain. Plus add the tingly, painful medication,
#Topamax every time the dosage was increased. (did I mention the horrible painful tingly in my face, hands, legs/ feet #BrainFog . Some days I had to have help out of a chair. Imagine doing that at a funeral for husband's side of the family?(who ,some have already told you how they feel about your illness...a sign of weakness) My father-in-law looked at me and walked over to help me stand up. He was close to 40 years younger than me that day...most days.
This above isn't even the most uncomfortable on.

I end up reading everything I could get my hands on. From case studies (yes,real ones.) To calling Johns Hopkins because they have a CSF center, and they were one of the 1st hospitals in do studies and place Stents in 12 patients with IIH/PTC. To NORD's website, including clinical research trials ,and many more.

I ended up on the table 5x's and 2 venous sinus stents all between 2016-2017.I don't have to guess anymore about what happened to me. I know what happened.
I got sick, really f sick, and not many believed how sick I was. Except for one Specialist,he did . He never gave up on me.
I don't think I fully understand him when he said something about letting the brain rest,and it probably wasn't best if we tried to go back in there. In case we caused me any problems. Already had TIA and one stroke after the left stent. Nothing he did. It's the way my brain is. I'm an odd duck. And I wasn't wrong about my brain not being right after surgery and medications. Many days my brain still hurts, my ears and eyes feel like they are going to bleed.
I suppose the reason for this post is it has taken my family, my career, friends, memories, lifestyle, and more, interesting enough as much as it has taken from me,.in the last 6-7years IIH/PTC made me think and
Understand how important it is to let your brain rest,and reset. It may take you in a completely different direction alone

Please remember, from one odd duck who did it the hard way, when you are going through the same thing in your head over and over, stop. Yes, IIH sucks, blows AND so many other things.

You do not. You didn't cause it, You didn't ask for it, and holding it inside makes it easier for you, me, we, excuse people who think "that illness is a weakness". Also, you,we,us,y'all, me when we listen to the bad brain talk..we are not healing. I still have bad brain talk days. I feel like up blank creek without a paddle ,if you get my drift. I hope my rambling reaches a few of you.
Have a pain free day ✨️ 💙💚💙💚
#bilateraltransversessinusstenosis #bilateralbrainstents



I was recently started on #tegretol to replace #Topamax because it caused me to have metabolic acidosis. I have noticed in the last few days that I have been super forgetful, saying things that I’ve already said, and the #BrainFog has been real. Has anyone else had this issue with tegretol? If so does it get better over time?
#MultipleSclerosis #AutonomicDysfunction #TrigeminalNeuralgia #SmallFiberNeuropathy #PosturalOrthostaticTachycardiaSyndrome #Gastroparesis #Epilepsy #Portacath #TPN


When you feel ignored by professionals

I had been having #Migraines since 12 and I had had enough at 33. So my family doc prescribed #Topamax/Topiramate. Everything was going well, no migraines, until insomnia, #Anxiety and #Paranoia. At first I thought it was me until it got worse and went to see a #Therapist. The place I go states I need to see the psychiatrist at least once and as soon as I told her that my mom was bipolar, from what I remember as a kid, she immediately diagnosed me as such. I had even brought up Topamax and said a lot of this started around the time I started taking that, could it be that? She said no, I don't think so. Prescribed Latuda and moved on. I had an adverse reaction to it when mixed with #trazodone(for insomnia); stopped Trazodone and continued Latuda at 20 mg. My mental state got worse after going up 40 mg. Went back down but, still didn't feel right. Moved on to #Lamictal. Every appointment I kept discussing Topamax. Both the therapist and psychiatrist ignored my pleas. So two weeks ago I stopped Topamax with the help of my family doc finally listening to me. Today I feel like myself after so many months of not being heard. Everyone kept saying these two docs are the best at what they do and I'm over here a complete mess. After also being lied to about hospital policy. I had to find out on my own by the hospital's website and forms they gave me about seeing both docs at the same time.
I don't know what to do now. I feel lost as far as how I was treated eventhough I came to them for help. All bc of #Topamax. The fact that I had to find out on my own is sad. When you go to a #MentalHealth specialist for help they act like they are superior and you have no authority over your mental state. You know how your mind makes you feel and everything that's feels different. I believe a second, even a third opinion is helpful bc not everyone is right all the time even doctors.



I have been in a sea of trying to get my doctor on track with me.
I have been dealing with candida that has taken over my mouth sense before #Christmas and so far she has thrown #Diflucan at it and #nystatin rinse at it along with me doing a #candida cleanse nothings working.
Now she wants to cut my #Topamax because I’m wanting to change from my #Plaquenil to #Benlysta due to my chronic #Nightmares that make me feel like I’m suffering a #HeartAttack nightly. When I do sleep…
Anyone have any sort of experience in these areas?
#Fibromyalgia #BipolarDepression


Anyone else prescribed Topamax for Fibro? #Fibromyalgia #Topamax

I went to see my Rheumy last week and he added a bunch of new meds, including Topamax. He said it's to help with my Fibro pain. Has anyone else been prescribed this or had experience with it?


How long have you been on Topamax?

#Topamax I’ve been on Topiramate for around 6 months lost loads of weight which I love but I just hate the fact I can’t function without them! I have awful headaches/migraines. I don’t like the side effects either like mood swings, forgetting things etc. How do you cope? 😌


Migraine Meds Change #Migraine #Emgality #Medication #Topamax

I just started month 2 on Emgality for migraines. I am supposed to wait until April to wean off Topamax, but I’m asking my doctor if I can stop taking it Monday. I think it’s making me sleepy and fuzzy like I can’t get my brain to turn on all the time. It helps with headaches, but I can’t keep sleeping all the time. This med is taking my life away. I’d rather be in pain and present than half awake and not myself. Has anyone had similar experiences on Topamax/topirimate?


Has anyone been prescribed topiramate (topamax) for their BPD and has smoked weed ? Did any of you have any weird experiences? I’ll personally never in a million years ever mix the two again. I won’t go back on those meds and my interactions with cannabis have not been the same since. #BorderlinePersonalityDisorder #Topamax