Who here has pseudotumor cerebri???

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

[rosemary67]

i have been told i have ptc, still waitin to have a LP done, have blurry vsion and headaches in the lower part of my skull. I was first told i had chiari malformation and needed immediate surgery and then the second MRi did not reveal that, so a lot of unanswered QNS.

[medchick0523]

You both know I have PTC,... but I'll put it out there for those that don't know yet!

Do either of you get neck pain at the base of your skull? It seems to correlate with the intensity of the headache.

I know a few others with Chiari, though theirs developed after shunt surgery. I think I'd ask for a third MRI... how can a MRI show a Chiari.... and then not?

Have a good weekend ladies!

[mamita00]

Heya! I have PTC and all of it's head hurting beauty :) And yes Samantha as you know my neck kills. When the pressure in my neck is intense so is my headache. Gotta love it.

I am having a good weekend, thanks. Snake catching with my daughter. Baby ones, too cute!

[Cath278]

Just to make it official, Im here to( cant resist being included!) Diagnosed in July this year after being treated with the wrong thing for a year. By the way ,everyone,symtoms (symptoms) are very similar with other illness... Cath278

[mamita00]

Just a question. I was noting the times that we all tend to be online. Do any of you trouble sleeping? I do from the fibromyalgia but I think this adds to the problem.

Hope you're all having a good and pain reduced day!

[ulike2no]

I have been going to a nuero-opthamologist for about two months because my regular eye doctor notices that my optic nerves were swollen. I had an MRV which was normal and I had an MRI which came back normal. I am scheduled to have a LP on the 17th and I am scared out of my mind. My NO told me that she thinks in IIH so thats why I am going through all of these tests. I am so scared. My vision is fine. I just have neck and back pain, nausea, and headaches. I am 26 years old and I hope this turns out to be something that will work itself out. I was told that weight loss has been known to reduce the swelling of the optic nerves. I have lost 50lbs but I need to lose more. Has anyone had an LP before and if so, can you give some comforting words?

[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

[rosemary67]

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

[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??

[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

[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]

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."

[blondeclb]

ok i was browsing the net and seen ur post so i signed up just to say yes i have IIH and papilledema

[BIGBANGTHEORY]

I HAVE HAD PSUEDO TUMOR CEREBRI SINCE 1987 OF NOV. NOT DIAGNOSED AT FIRST. AFTER TEST AFTER TEST THEN I WAS DIAGNOSED. I STARTED OFF WITH THE BLURRED VISION,HEADACHES,NAUSEATED,PAIN AT THE BASE OF THE NECK,WHITE SPOTS IN FRONT OF MY EYES. I'VE HAD LP SHUNTS OVER AND OVER AND OVER AGAIN. FINALLY THEY PUT IN A VP SHUNT IN 1999 AND EVERY TWO YEARS THERE AFTER. NOW DEC.2008 MY SHUNT IS NOT WORKING AGAIN NAUSEATED,DIZZY AND THIS IS JUST THE BEGINNING.

[galaxymap]

Finally, I had my shunt put in on Monday. I am still taking it easy today resting. The fullness and headaches are gone. The incision sites do hurt a little but only if I move wrong. I think the med staff at the Univ of Utah were awesome! They even helped me find a very nice motel that gave good rates to patients and their families. The only negative to all of this was the massive snowstorms that hit while I was in the hospital. When I took the bandages off it shocked my little boys...I think they will use me for a halloween prop.  I am glad I got it done...the meds had not been effective and my job was being interfered with.  Now, we just have to monitor the shunt...Happy Christmas to all

[Anglepark]

I have had Psuedotumor Cerebri or IIH as we call it in the UK,I refuse to use the term Benign as there is bugger all benign about having it.
Had IIH since Aug07 when I only had Papilledema in the right eye,I now have it in both eyes,oh and I`m a man as well so am one of the chosen few I feel so special to `share` thus wonderful illness with all you lovely ladies.

[TJRasta]

I too have IIH since April 08.  And I get the rare opportunity to share in that "chosen few" status with Anglepark because I too am a man.  "wonderful illness", I can think of a few other names but have actually been known to use that exact one from tme to time.  Welcome aboard!

[Henricogirl]

I must be dreaming I have had ptc for a little over a year now And i have never meet anyone who has it. I am so into the docs know nothing it took the best nerologest in virgina 9 mounths to dignos me. Then theres my mom she says this will only last at the most 2 years. Now i know that it is all bull. Im not shore if this happens to any of you but I pass out with ptc they said it was a sudden rise in spinal fluid that causes me to lose concenness it has happend to me almost 20 time this year. Then my mom ask me if I was faking can you belive it she sits with me while I cry bc of the pain and because every time i pass out Im afraid I wont wake up. My parents wont let me take anything stronger then 3 Advil and it does nothing the when I call from school they say I need to stick it out. They have no Idea how much they hurt. If you have any advice on what to say to my parent bc sence I started the school year it has only gotten worse. Im sooooo glad i have finaly found people that understand the headakes just started comeing back so did the passing out. No one I know can really realate to me all my freinds are worried and feel sorry for me bc of the passing out and I have to leave school for the pain. I am really really glad to find people that understand I hate when people feel sorry for me.
-Tori

[crystalhanzelka]

IH here too...fun times huh?

[Henricogirl]

I know and you have to love the doc. appt. that come with PTC to. Plus those LP are like your own personal party.

[selmaS]

Hello to those with PTC and chiari as a result....u may want to stop by our chiari forum here on MedHelp.We may be able to answer ur chiari questions.

As for one that asked above about how on one MRI it was dx as chiari and the next one not...well we with chiari have asked the same thing and the answer lies with who is reading the MRI study and giving their opinion.

Chiari is misdx all the time and even when it is most NS are under the impression that u will not have symptoms from it and it is ignored.

To recieve propper treatment we need to travel to get to drs that have foucused their practice on chiari and related conditions such as PTC.

I am community leader in the chiari forum...if u have any questions please PM me or stop by the forum.

Godspeed
"selma"

[Meisja]

Hi folks, I was just told of my IIH/PTC diagnosis today. I guess in a way I am somewhat lucky in that I had a quick diagnosis, though. I've been symptomatic (HORRIFIC headaches & double vision, etc.) for about two months. Started Dioxin today, which is helping enough that I can look at my computer screen long enough to find and say hi here. This seems like a great community, thanks for being here.

To Henricogirl; your diagnosis and specific symptoms should qualify you for *reasonable* accommodations to be made for you by your school under the ADA (or Americans with Disabilities Act).  Take this information above, and do some research on the net to help you learn more about what your rights are (and are not), and then try to come up with a few reasonable ideas of how your school may be able to help you overcome the disabling aspects of your  illness and have an equal opportunity in your education. Take your requests, and your legal research, to the school to begin a negotiation called the "interactive process" where both parties come together to find the best solution. Do a really good job and make your mom proud ;)

Good luck and hang in there!

[Meisja]

Sorry, not Dioxin, Diamox (but I'm sure you all knew what I meant).

and Henricogirl, your comment "those LP are like your own personal party" was phreakin' hilarious-- PERFECT satire!

[TJRasta]

Welcome to the group.  You must be very ambitious to be diagnosed with IIH and find and contribute to a support group on the same day!  And you were diagnosed within 2 months.  Where  are you?  Who are your Drs? How did they figure it out so fast?  Most stories I have read it takes much much longer to get this whole thing dialed in with many misdiagnosed along the way.  Please tell us your story.

You also sound like a lawyer or paralegal or someone whose occupation includes understanding of human rights.  That is a nice addition to the group that could be very helpful to some of us.  Thanks for your advise to Henricogirl.  I can not imagine being burdened with this illness at such a young age.  I hope we can all help her cope with it.

TJ

[Cath278]

Welcome Meisja to our commuity! This is a great site for support and information.I admire your courage and   I second all that TJRasta has said and if you need any thing, give me a call. Cath278

[Henricogirl]

Thanks for the tip about the ADA. I already had an IEP before this whole mess stared so we put some accomedations on there. And yes i am  phreakin' hilarious I find it better to put humer into it. Its the only way I can go day to day without being bumd out. Also its just in my make-up as Tori. Im always laughing it off. One day I cant get out of bed the next Im joking about it with my freinds.  Its how I cope. Plus, welcome Isn't this place great so many people who really understand and dont feel sorry for you.

[Meisja]

I just want to say a quick thank you for the warm welcome! I'll be back to answer the questions and say hi when I'm feeling a little better. I have at least 3 more days coming up this week at the hospital- yay! (ugh)

Take care, all.

[mamita00]

Hi to all the "new" ones I haven't met yet, I'm Kim. Sorry you're stuck in such a terrible club. And of course a big hello to my "old" friends too. I want to know, do any of you just suddenly get so tired that you can barely fight it? It comes on so suddenly any time, any where. I will just go right out and not realize it or remember falling asleep. Way freaky because it certainly puts a strain on driving or even holding my baby.

Also, to anyone with a shunt who was not in immediate danger- what made you make that leap? I know it may sound kinda silly considering....  I'm just so torn. So sick of feeling this way. Constant headache, living in sunglasses, neck pain/pressure. My medicines are really topping out, depakote at 1,000 mg, gabapentin 600 mg, and topamax 200 mg. This just doesn't end
.
Anyhow, that's me in a nutshell at this moment. I hope everyone else is having a better go than I am. ~ Hugs~ Kim

[lundy101]

Another fellow ptc here. I have a lumbar shunt and it worked fine up until about 3 weeks ago. Had a lp and now my pressure is too low. So, now I am on another journey to fix me again.

[Cath278]

Can you believe its been almost a year since bethaniet first posted about IIH/PTC? At my last count there were 14 of us.We really should keep in touch, to share our experiences and maybe benefit from each others journeys. I know this site has been a God send for me.I dont know anyone who has this illness except me, in Ireland.( to the best of my knowledge!). This illness is a very difficult one to learn to deal with and with its myriad of symptoms, it is comforting to touch base with fellow sufferers. If I can help anyone, just drop me a line.I will do my best. Here's wishing you all a good day, Cath278.

[mandik]

i have PTC or the new name its called . In fact im taking the leap and doing the vp shunt on monday Sept. 21,09. Scared unsure what to exspect, will i be able to continue to work, will i have a long healing time.Will i be a freak to my girls , Most of all important question, WILL IT HELP ME WITH MY SYMPTOMS.But i have no regrets, its time i done the shunt , if you ask me 2 weeks past time. Blessings to all. stay in good sprites talk to you all after the surgey.

[TJRasta]

Hi Mandy,

Welcome to the club.  I too am going to get a VP shunt next week but for me this will be my second time around,  The recovery is really not as bad as you would think,  I was only in the hospital a couple days, some even go home the next day.  I was up and about with in a few days.  I am not working but if I was I would guess that within a what week to 10 days depending on what type of work you do you should be able to go back to work.  A good question to ask you NS.

As I recall, the worst part was just the healing of the incisions especially the one on the back of my head.  Other than that it is not too bad.

I do not suffer any vision problems so for me I did the shunt for headache, neck and back pain and it worked wonderfully untill it got infected and then it needed to be removed.  Mind you that only 3% of the time does this operation result in an infection but I got unlucky.

Not sure of all you syptoms (symptoms) but hope your operations relieves them all.

TJ

[Cath278]

Hi there.I  just wanted to wish you the best of luck on Monday. I had my shunt fitted last Dec and was home within 24 hrs! As soon as I came round from the surgery,I knew things were good.Headaches were gone and eyes no longer blurry. The pain is managable, with some pain killers.The site in your abdomen can be quite sore.Its hard to bend so have every thing ready on the coffee table before you sit down. Sleep,can be a bit difficult, hard to get comfortable but that does not last long. You will be very tired for at least 10 days.Relax if you can and let your body do its job and heal. If you have any questions, feel free to drop me a line.Good luck! Cath278.

[kayladianne]

Hey everyone. I'm 20 yrs old and today I went to the ey DR. and was told that he's 99.9% sure that I have Pseudotumor but i'm going tomorrow for a CT.. i'm so scared! i've never even been put to sleep before.. I need support and comfort, someone please.. i'm in a panic!! reading some stories on here did however make me feel alot at ease and I thank you all for posting your stories up. I'm just honestly scared i'm going to die.. I shouldn't think this way but it's just hard.

[tinanevarez07]

Hi My name is Tina im 25 year ago and i have been diagnose with pseudotumor cerebri. been living with it a year already. finally getting treated since before i did not have insurance, it has been hard to live with it. :( the hards part was the losing of my eye site. i havent met anyone with my condition but really would like to meet ppl who lived with it.