I am under investigation for papilldema and the docs say it is probably pseudtumor cerebri causing it,I have banging headaches,lack of energy and blurred vision.Anyone got any info or tips?

hey anna,thanxs for your reply,i was starting to think i was the only person with this.i am still waiting(since september) for my lumbar puncture and to see the neuro opthalmologist,but have been told it could be a six month wait.ive had a mri scan,flourescene angiograph,ultrasound scan,eeg,blood,urine just about everything going.my field vision showed that i cant see to my sides at all and my optic nerves are swollen,the eeg showed a under average result.Ive had a few visual disturbances that were quite frightening and i get alot of tingling in my hands,otherwise everything else is pretty much under control due to pills and potions galore.I still get sharp stabbing in my head,but it only lasts seconds.this has been going on now since june 02 and i just wanna get my life back,im also on sleepers and anti depressants and have been on the sick since then.They reck ive had this all my life but it has only appeared as i have put on alot of weight recently,i am 32.I looked it up on the net and its apparantly too much fluid surrounding the brain,which puts pressure on the brain.Have your docs suggested papilldema to u??I hope u get sorted soon,its not nice not knowing.take care.

Hi Anna and Head,
I was diagnosed with BIH (Benign Intracranial Hypertension)during pregnancy in 1997. BIH is also known as Psuedo-tumour cerebri. The headaches are caused by increased cerebral spinal fluid, this also causes blurred vision due to the pressure on the optic nerves, nausea, vomitting, and much more. If you want more details on the symptoms just ask. I am a typical textbook case study. I am 34 and had to give up my post as a RGN Sister in 2002 due to increased problems. If you have this condition, you will find all the tests that you have taken will be 100% ok. The only positive way to detect BIH is to have a lumber puncture and Spinal tap. Only 1/100,000 women suffer with this however I fear the numbers are growing.
I understand your fears at this time, but keep strong, there are ways of easing the pain. If you get a positive result on BIH and want to know more please contact me, even if its just for a chat.

thanxs for that finder.I finally saw the neuro opthalmologist yesterday and i get the lumbar puncture next week.The neuro is certain that it is pseudotumor cerebri and pappilledema but as u say the lumbar puncture will confirm 100%.I will let u know the results.I have read plenty on the net but not spoken with a sufferer so it would be good to hear about how u have coped with the condition,meds ect.thanks again for taking the time to reply,take care now.

I was diagnosed with pseudotumor ceribri more than 20 years ago. I haven't had the margins ov my optic nerve checked in many years, but I haven't had any symptoms in all these years either.
I used to have "obscurations" when I'd stand up quickly. Lean over to pull the chain on the lawnmower and standing up, my vision would bo black. Never had headaches, or other symptoms. Great Neuro opthal....gut at the Jules Stein Center said it was due to obesity. I lost weight and lost the condition.
My field of vision is still lousy, though.
Good luck.

hi guys,well i had my lp and my pressure was sky high.pseudotumor cerebri has now been diagnosed 100%.Its amazing how after the lp my head felt so much lighter and everything seems more bearable.unfortunately no vision has returned,but i hold out hope yet!!I am just awaiting treatment now and hopefully things will soon start to get better.
My only advice is to keep pushing the neuros and dont let it lie like i have,your sight is at risk as i have found out!!good luck to u all.

Hope your vision returns. The doctors thought i might have this problem too, when my optic nerves became inflamed in both eyes last December. Though i didn't fit the usual criteria, not being overweight at all --mind you, I had gained a tremendous amount of weight a short time before and had just lost it when my eye problems started. They got me in for the lumbar puncture within a week of my second eye blurring, but the results were negative, in fact my fluid pressure was one of the lower scores the dr. had seen. My eyes have since cleared up more or less, a few showers of sparks when I move my eyes suddenly or squeeze them shut, but light and colour have returned.

well guys i started the diamox a few months back,its keep the pressure down but im still having symptons so i now have been offered regular lumbar punctures to which i refused after my last episode so drs are now on about putting in a shunt!

I was diagnosed about 2 years ago with ptc. Took diamox for a year, but didn't help much, so because of severe headaches, had an lp shunt put in on Dec. 2002. For the first couple of months, it worked great, but am now back to daily headaches. Have had my shunt tested and had an mri and an mra, and they come back normal. So I am at my wits end, trying to figure out what is causing these awfull headaches. Just living on pain meds, and am sure tired of that. Might go to Mayo, or the Michigan pain and head institute. Anyone gone there? God bless,Susan from Iowa

I have had a month of wild symptoms. An odd unexplained pressure in the left side of my head. This is accompanied by extreme fatigue, i feel as if am always about to get a headache. I also have floaters, muscle twitching, balance issues, anything physical i do makes my head feel like the pressure is increasing. Have pain and stiffness in the left side/back of neck that extends into the shoulder. I never feel rested. I have spacial issues and sometimes a little off balance. My first Neuro said she thought it could be pseudotumor. I am a 32 year old male who got sick quite suddenly. I am overweight but in the process of downsizing when this all started. Any suggestions?? I am getting puncture on next friday, had an mri and cat scan but they did not seem to notice anything there except for a fatty place in the cerebellum? Did or do any of you experience these symptoms. This is definitely worse if i bend over or try to do any of my normal activities. I have been a worried zombie for the last month. Please offer any comments

hi tenortime,it sounds very much like bih,iih,ptc, everyone has different symptons to others,personally i had the works thrown at me and it took a year for diagnosis, as u can see from previuos mssges, i have lost alot of sight permanent due to bih and even though am on drugs i am still fighting.its a horrible disease and i still sleep all day and night and dont have a life anymore along with alot of other problems.if u think u have it push fa diagnosis,it will only truly show as high pressure ona lumbar puncture

May I ask what might seem like dumb questions? I'm only now in the process of being diagnosed and don't know anything other than what I'm finding on this board. My first question is, does the lumbar puncture hurt? Is there any reason why I wouldn't want to have it done? How is it done? Also, hmmm, I forgot my next two questions.

Just remembered my second question. If I'm not obese, but am about 10 - 20 lbs overweight, does this mean I can't have this disease?

hi lifejourney,in ansa to ur q,yes thin people do get bih too,i am not obese either,there has been no reaserch into it as its a rare disease but from what i have read the drs r clutching at straws as most sufferers r women of child bearing age which is obviously when they start to fill out.can i ask do u take any hormone products of any kind as they r a big no no.as for the lumbar puncture,yes it has to b done as its the only true sign that your pressure is up,mine was awful but others have had fine lps,i think it very much depends on how experienced the drs r ect.my nerve and bone got hit which as i was already nervous enuff didnt help any and have refused any more lps,basically u will b asked to lie in the foetal position on the edge of the bed,a anaestetic is injected into the lumbar area of your spine(which is i think about 3 or 4 vertebrea up)then another needle is inserted actually in to pierce the lumbar,a pressure test will b taken and then if u r over pressure some will b drained off.after which u will be made to lay down for a few hours as the pressure drop gives u the headache from hell and i suffered terrible dizziness,this lasts for about 12 days,but plenty of rest and re hydration is all that is needed after.after i felt very stiff in the spine too but overall it is just uncomfortable and unpleasant.no damage should come off just one lp but i have read that too many will damage your spine.everyone is different though and reacts different,but try to relax is all i can say,if i ever have one again i will ask for a blood patch as your lumbar will keep leaking foir a few days after as it has been pierced but apparently these blood patches do help the after affects so might be worth equiring about.i hope everything goes ok and do let me know how u r gettin on,i have found that its so important to talk to suffereres as as it is a silent disease that cant be seen u sometimes feel that nobody believes u,i am a memeber of a very good forum for bih,which i find very helpfull and as everyone understands u dont feel so abnormal.anyway hope al goes well.

Hello,
I have a friend who has a daughter that was diagnosed with pseudotumor cerebri and all of her problems were truly from a pineal cystic lesion in her brain. Doctors did not tell her this, so please get a copy of your MRI reports to read for yourself.
My daughter had spinal fluid blockage from a pineal cyst also and she had all the same symptoms plus more. Please get a copy of your tests - doctors do not always tell you everything.
My daughter was forced to suffer for over 4 years with no medical help due to a pineal cyst that was growing.
God bless you always.
Chryl

[This message has been edited by Dodger8 (edited 09-23-2003).]

well guys,to keep u updated,now the drugs aint controlling the pressure,have been offered regular lumbar punctures to which i refused so next it is a ventricular peritineal shunt.has anyone been through this op and does it hurt??????

Hello guys,

My doctors felt that I had Psuedo tumor last October, when I presented with papilledema in both eyes with blurred and double vision. My opening pressure was okay however, so it didn't turn out to be it. What I do have is something called Antiphospholipid Syndrome, a disorder in blood clotting that causes clots to develop whereever they feel like. My MRI has been clear, but the lesions can be so small they don't show up! One of the chief complaints with this is migraines, weakness and tingling in extremeties, MS like features etc. It can exist on its own or with Lupus, which I have too. There are blood tests they can do for it.

As for the shunt, it may be an option for you to alleviate your pain and swelling. If its one of the only options, I would go for it for sure.

Just wanted to add a few cents worth in http://www.healthboards.com/ubb/smile.gif

Angelic

[This message has been edited by moderator1 (edited 10-15-2003).]

Hello Everyone,
I was diagnosed with psuedo tumor about 3 months ago. I was having vision problems and thought it was time for an eye exam.. I went to Walmart and was told by the Optometrist that I have bleeding behind my eyes and that I should get to the hospital. She called the hospital to let them know what she saw, I spend about 2 days there while they did a lumbar puncture (yuck), mri and cat scan.. Thousands of dollars later, I was told I had psuedo tumor. I went to an ophthamologist to have him check on my eyes and then back to the neurologist for another lumbar puncture. This last lp hurt me so much I did not go back to the neurologist for a couple of months (just went back last week). My opthamologist prescribed Diamox for me to take but didnt say anything about having blood taken every now and then.
Well last week the neurologist had me give blood and then called the next day saying my potassium levels were extremely low and that I had to take 4 potassium pills that morning and 4 potassium pills that evening and to have my blood checked again the next morning. The next day I got another call saying it was still low and to do the same as the day before and to have my blood taken again.. Well, I just heard back from him today and guess what.. It is still low and i have to take more potassium pills and have the blood checked again. Has anyone else had this problem? I was told that Diamox is a potassium depleting diurectic. Do you think I can have a potassium overdose by taking so many pills? I am so tired of this. I wish it would end.
I've lost about 22 pounds already and am within the weight limit for my height. When will this end?



------------------
Hey!!! I'm living my life to the fullest. How about you?

thanks for that angelic,actually i have read that they think it might have something to do with blood clotting but without any proper research we may never know.but i shall have a look at that illness.
Tonya keep ya chin up hun,u gotta,we all have to,yes u can od on potassium but im sure if drs told u how much to have it will b ok,i have read that some get hospitalised with a iv drip of potassium when its so low as it can be dangerous,i pig out on bananas to keep me going.hope this helps,can i ask r u a member of a support forum on the net???if not get on one,u wont feel so alone when u do.good luck.

I read over the post and do have an answer to your question about getting a shunt. I took diamox for almost a year, and was still having severe headaches, so had a lp shunt put in on Dec. 2002... To tell you the truth, post op pain was intense for me, but have heard others that have had a shunt put in, and they have no problems with pain.. I do have a very low pain tolerance but after the surgery, had alot of pain due to muscle spasms in my back. There are 2 types of shunts, lp(in the spine area) an vp(in the brain). My dr chose the lp shunt, because said the vp shunt was alot riskier, but also you just have to weigh your options. Vp shunts seem to last longer without complications, and if they ever need to adjust the setting, they can do it without more surgery. Lp shunts, have a higher incidence of failure and if they fail, it means more surgery. My shunt helped the headaches for about 5 months, but am now having them again. Hope this helped. God Bless,SusieQ

I am in the process of being diagnosed with a possible pseudotumor. Two weeks ago I went to the eye dr. for a routine exam and he found that I have papilla edema. Last week I had an MRI done which was normal and I am scheduled for a lumbar puncture on Wednesday. Also, I am in the process of taking fertility drugs and these all had to be stopped until the dr.'s figure out exactly why I have papilla edema. http://www.healthboards.com/ubb/frown.gif Wanted to know if anyone else is or had been taking fertility drugs and was told to stop because of the pseudotumor?

hi blynn,in answer to your q about fertility drugs,it is because of the possability of ptc as hormones can be a cause and no hormone product is allowed.there are also alot of other drugs that cannot be taken.good luck with your lp.

thanks for that susique,my docs seem to want to go straight for the vp shunt and i am dreading it.what is your next step now optic nerve fenestration??good luck

just wanted to say happy xmas to all u fellow sufferers out ther,dunno on u guys but i plan on gettin tottally blotto,a couple of hours away from the misery and a hangover thats leess painful than bih in the morning.
lets hope 2004 brings us a cure !!!!!!!

I have heard that astronauts suffer bih in space and that NASA is supposed to be researching this!!! Does anyone know any more on this topic??

hello anna and everyone my name is carol ann and i am 32. for the past three years i have had this dieases. it came out of nowhere!! ive been on meds like u wouldnt believe none seem to help except toopomax for awhile. then i was feeling ok for about 6 months. now i have remission. and my eyes are sore. i am severely fatigued and my wt is up then down, then up. i look like i am 4 months pregnant than i dont. i have severe head pressure all the time! i have cysts in my sinus cavities. been diagnosed with pseudotumor cerebri, optic neuritis, empty sella, severe sinuses. and no one understands what i am going through, they just look at you as if they dont believe u. my mood swings are getting worse, i am angry more. very lonely. i feel as if i am on another planet. hair was falling out, then it starts growing back, then it thins out again.. i am a mess!!! i need to be on disability i cannot stand this crap, i am so depressed i dont/cant even go out with anyone because of my headaches and fatigue. what is this? and why arnt there any support groups all over the world for this!! the doctors act as if they cant do anything. my first endocrinologist seemed as if she just gave up on me!! but i got the bill in the mail for the three min' office visit.. i am confused over this, i feel as if i am walkin in mud. i need help

I haven't been diagnosed with this, but I seem to have many of the symptoms especially the constant head pressure climbing stairs is agony as well as bending down.
Did anyone have any relief with diuretics and if so which ones? This all started for me when I was put on diuretics for hypertension and then taken off them when my head started to get terrible pressure, my CT scan turned up normal. I'm actually afraid to go back on diuretics anyway if I was told to. I can't see my GP until the 29 but the wait between appointments is agony. I've become virtually housebound and my husband is tired of my complaining. I'm so glad I found some of you that are in the same situation.

Hello. I might have pseudotumor cerebri. Have to have an MRI done and then off to the neurologist (sp?). I have been to the eye doctor due to flashers in my eyes and he said that this is what it appears to be. I am 32 and overweight - so it looks like the shoe fits. I really do not have bad headaches though like I have read on this thread. I don't know what to think now - scary!!!

Terri

I was just diagnosed with PTC and was wondering if any of you are still out there and how the battle is going. I am looking for questions to ask of my doctors, things you wish you had known early on. Also looking for advice. Thanks -eko

3 years on......
still the same,diff drugs that still dont work,still in pain,50 % visual loss,still sleep all day and have no energy and headaches from hell.internet support groups have kept me going as neuro/optho a waste of space.good days and bad days,why me?
hugs to all the ptc/bih/iih sufferers xxx

finally getting a ventricular peritneal shunt inserted with stereotactic guidance,hertes hoping for a new life xx

Too bad moderator, this could really help people. makes me wonder what your real motives are.

well i had my vp shunt insertion 5 weeks ago and i had a massive bleed and ended up with the scars and holes and no shunt.dr now says its too dangerous to go back into my brain and am know waiting for a lumbar peritneal shunt,will it ever end?

I Have Ptc. Was Told In 1979. Went Through 9 Spinal Taps To Lower
Presure. Then Presure Went Back Up. I Was Told I Needed A Shunt
And I Agreed . It Has Worked .i Never Had Any Complications But I
Am Getting Head Aches Again. Will Get Shunt Checked Tomorow.
But For Those Who Are Told They Need A Shunt Remember Waiting Can Cause Loss Of Sight. I Had Loss And Donot Want Any More.
You Have To Stay On Top Of It. Good Luck To All You Can Live A Normal Life Again

well my lp shunt is overdraining anf feel like i got a fried brain,worried its causing chairi malformation now,anyone had it ?

I am under investigation for papilldema and the docs say it is probably pseudtumor cerebri causing it,I have banging headaches,lack of energy and blurred vision.Anyone got any info or tips?

HI THIS IS STACY I HAVE THE SAME THING I HAVE SUCH BAD HEADACHES I HAVE TO GO TO THE EMERGENCY ROOM TO GET SHOTS FOR PAIN IT SUCKS I AM TRYING TO GET HELP BUT IT IS HARD WITH NO INSURANCE.

It is tough to get help when you have no insurance, but you have got to find help. If you have PTC, you are running the risk of permanent damage to your vision if left untreated.

I was diagnosed over three years ago with PTC and have been fortunate that for the most part mine has been managed with medications, Diamox and Topamox and have no vision damage. I am monitored regularly and I do have my "bad head" days.

I hope that you are able to find some help and find it soon.

Good luck!