Who here has pseudotumor cerebri???

[bethaniet586]

I am just curious to see how many people have pseudotumor cerebri on this forum...?

[mamita00]

iih means idiopathic intracranial hypertension. it's a term doctors are using more and are trying to phase out pseudotumor cerebri. they feel the name ptc doesn't hit the mark whereas iih does. it does explain it versus having to say " no I don't really have a tumor, my body's just acting like it does."

[Cath278]

Hi you guys. thinks seems to be getting to a point here.My eyes are pretty tired tonight so please forgive mistakes. Dont know if I said this yet but so far no-one has said a word to me about my weight.Not sure why, i dont want to invite that trouble and distraction on my head. Is it because they dont know yet? To threaten me with this hollow claim? Or is it just that , not a big deal in Ireland? I was an ok weight before I got sick.Was nt afraid to wear a bathing suit kinda way.But since I started on the steriods last year i have put in 30 lbs. Not a preety sight! For health reasons i will be seeing a dietian soon. Im quite small and need to get the weight down but it haw never been suggested that it causes my symptoms. I think, that they have nothing else to say to us. They, the drs , are at a loss what to do with us. So very little is know about this illness its frighting!
Pinky, im afraid you have to have the spinal tap/lumber puncture. That will confirm if its IIH.Im quite sure you have heard all the horror stories about it, now let me tell you about a good one. Mine! I had it done in July and really it was not too bad. Im allerfic to local anaesthetic so I didnt even have pain relief.And it turns out ,I didnt need it. I did get some thing to help relax me and I would highly recommened that.Find out who is doing it, have they done many? Dont let a med student do it. They can practise on someone else. I wouldnt call it pain as such, more pressure. Its not very nice but it s over inno time. My dr talked me thru it and distracted me. You have to lie down for a few hours after and that was easy. The Valium made the time go by quite nicely!
Ill finish up now. I hope this helped you a bit.
Kim, Im too tire now but i will pm you tomrow for a chat and i think ive found something interesting...A foundation, non profit, in America, hwo are looking for us!They are tryinh to build members so they can get backing to investigate and correlate all the data so maybe they could help some one.I sent away for the "pack" and got it this morning. Told them I was from Ireland and they dont care.All you need to have or be is sick with this illness. Interested? I will give you more details in the am.Sleep well ! Cath

[mamita00]

As some of the others may know this is a hot topic for me. The constant buzz is lose weight and you'll be better but that just isn't so. For some, perhaps.... but I think there is some critical piece missing they have yet to find. That would be the link other than our appearances. What medically has been going on with us? What medicines did we take? Are we just genetically predisposed? Don't waste my time telling me I'm fat.. duh! Help me, look for the source of the illness, that's what needs to happen. I was heavier and lost 30 lbs. but the ptc is still going and throwing me for a loop. Weight loss is not a cure. It's a good thing but no miracle. Going on with our lives is our miracle and you can do it. Take each day as it comes and hopefully the next will be better than the previous.

Don't fear the tap, it's not too bad. It's a more sound way to determine what is actually going on and affects your treatment options.--------Kim

[Minsue36]

Hi I have pseudotumor to and I think that I got it from having an IUD put in after I had my twin boys or year later I started showing signs of the pseudotumor cerebri and I have heard  then IUD can cause it I wondered who Wawa on here has had that happen to them as well?

[Pinky86]

Hi, I was diagnosed with PTC in the early part of 2007. It first started with the headaches, then the blurry vision, after a few days my left eye was swollen.I went to a few doctors who told me that i had contracted an STD, I needed new glasses, someone had punched me in my eye and the responses got weirder as the days went by. Finally i went to another eye doctor who called the ambulance and had me rushed to an emergency room because he thought i had a brain tumor. There i met who i think is the best neurologist in the world Dr. Ekede Magnus. After 2 catscans an MRI and a ultrasound he assured me that i had the condition called PTC. I had a lumbar puncture and he wanted to give me a spinal tap but i refused. So i tried the weight loss it started off good i lost 50 pounds but i gained twice as much. After trying so hard i realised that not only over weight persons have this problem a few other persons who i met with the same condition were thin. This makes me wonder if i loose weight will i be safe or will i continue to be plagued with this condition??

[rosemary67]

hey i am a ly man here what is IIH and how did you loose the weight give me some guidelines.

[Cath278]

Hi there . First thing I will say to you is try not to be scared. i know how frighting this all can be but its not the end of the world if they comfirm that you have IIH. I have it and Im doing ok.   Lets do this one step at a time ok? Your MRI and MRV came back normal. That is good news. It means you dont have a tumour.Or anything else bad going on. Your N-o thinks you may have IIH. She is preparing you until she can comfirm it.That is also good. She sounds like a good and caring dr and is helping you on the way to accepting it. Having a lumbar puncture will decide if you have IIH. I had one done about 4 weeks ago and believe me, its really not that bad. Im allergic to local anaesthetic so I had no pain relief for the procedure. And! I didnt need it. I did get Diazopan to keep me calm and relax me. Its very important to stay in the postion which could be hard if you feel afraid or panicky.Did it hurt? I wouldnt say hurt, more alot of pressure and I did feel nauseasous.It did not take long and you have to lie down for awhile after. Thats where the Diazopan really helped, i felt nice and tired. i know you will hear terrible stories about it, ignore them. Stay calm and focused and it will be over before you know it. I talked all the way thru mine, asked questions, it distracted me from the job at hand.
Its also good news about your eyes.And , you have lost50lbs! Way to go! If you can do that, you can do anything! You have a lot on your side,believe me. Its not the worst illness to have and if you do have it, you will soon be free of all those terrible headaches etc...One more thing, if , it turns out you do have IIH, there are agreat bunch of people here that will help you every step of the way.So, please write and let us know how you get on and remember, if you need us we will be there.Cath278