idiopathic intracranial hypertension

Hi VDubs TDI I have just watched some of your videos on you tube, in one of them you mention Pepsi max putting your pressure up, I didn't know that as I drink that a couple of times a week, so that was really good to know. Could you tell me what else could affect the pressure as I really don't know. I have read a lot about IIH but all they say is to loose weight nothing else, so I would really appreciate if you could let me know what else could cause my pressure to go up. Thanks

I was diagnosed with Pseudo tumor (an older term used for IH) about a yr and a half ago, but had no symptoms except for migraines. I was basically told nothing, he performed an MRI which shows a blank space where my pituitary gland should be. He said the pressure had flattened it out. He said lose weight, referred me to an eye physician. My eye Dr.said my eyes showed no symptoms of IH, but still wanted to see me every 3 months, so far nothing.. This Valentines day was one of the worst I have had. My head hurt so bad I thought I might have an anurism. I went to an emergency center they gave me a shot to help the headache, and sent me for another MRI, it was the same. I cannot take diamox because it was affected my kidneys. But I didn't notice any difference before or after the diamox. My problems aside from headaches, staggering, I have blindsided by depression. The worst thing now is my headaches have subsided and are manageable, but I am experiencing severe memory loss and blackouts. It was just now and then nut now it is an everyday thing. My neurologist just brushed it off, my family Dr. looks terrified like this is way out of his abilities. I am looking for any thoughts is anyone else like me? I take blood thinners because I have several blood disorders, and lately I have felt so low I am almost wishing for an anurism.

Kim Hi, I feel for you as I know what you are going thru. I am still on max doseage of Diamox. Should have had a shunt on 25th September but cancelled it.The depression Diamox causes has had me on several ocassions with a lap full of every pill in the house thinking this will just be enough to finish me off. It got that bad. My memory is now to the point that I forget to turn off taps, forget if I brushed my teeth to querying what day is it. Having said all that I have been really lucky cus it is only the last 12 months I have had the headaches. I got away with nothing beforehand exceptbuzzing in my ear. Blackouts have not happened although I get very dizzy especially when bending down - minimal gardening now. What I have done (and why I cancelled the Shunt Op) is loose 2 stone in weight. This was mainly thru worry (yep anurism worries, relationship worries etc did it for me). My specialist is fabulous and said if I can do another 2 stone in the next 3 months it may mean no Op is required. That's my goal now although headaches are worse, dizzyness is worse, light flashes are worse (and so is my eyesight) I have to see if loosing more weight works. If I can get pressure low enough to come off these tablets, maybe I can get my life back again.

My family Dr just throws a repeat prescription of Diamox now to the receptionist - they don't want to see me either!! I've joined an America research group that specialise in IIH - its free and they put all the info from patients around the world together to see if there are any common denominators.

Thank you so much, just for responding. I have a few symptoms I haven't heard much about, for instance my memory, I changed my banking password 3 times on monday. I didn't know that until wed, when I tried to sign in. I watch television, movies and like to facebook. I can watch or do these things, but have no memory of them later. When i say I have black outs that is when I lose whole blocks of times usually hours but have lost some days or period of days. I have been taking drugs for depression for about 5 yrs, which is actually when I think all this started. My bad days are when i discover something important or at least to me, that is gone. I go into big depressing states when this happens. Last night I realized that I took lipitor (for cholesterol) I took about 250 pills or so last week. Thank god it can't kill you but it can affect your memory. I know I sound like a really sad crzy person, which I can be, but up until this year Valentines day to be exact I was friendly, funny, upbeat a little dingy, I love my family and adore my cats. I do know about that registry for IH and am going to join I just keep losing (forgetting) where my paperwork has gone. I live in the US in a small town. If you are interested in doing facebook, I would like that. Thank you so much for a little validation, ~~Kim

Hi Kim. Well, it sounds as though you are on a real rollercoaster ride. Blimey, I do feel for you but I may have found you/us some comfort. Have a look at this linkhttp://www.iihsupport.org/index.php?topic=2949.0

It is from 2007 and lists lots of people who are also showing memory loss problems and that the medical world deem it a) either something they should not be concerned about or b) nothing to do with IIH or c) connected with their medication.Clearly though that is not totally the case.. I actually feel better having read it and at least now can say it is IIH causing the problem and not a brain disorder, alzheimers or similiar which has been worrying me! My surgeon did tell me that brain cells do get killed off due to the high pressure and those "under threat" can get better when the pressure is reduced. The dead ones though remain that way and are gone for good. There is hope that you will be back to that funny and friendly person again just hold in there and put some processes in place that help such as getting all that days tablets out first thing in the morning - at least then you know what you have or have not taken.

I have just tried explaining to partner that I have read three books lately (to try and keep the brain cells working) but could not tell you the name of the book or the author, the lead character/s or the story line in any of them.In fact, concentrating long enough to finish one chapter was difficult enough.I now have to get ready the correct amount of Diamox tablets for the day otherwise I forget if I have taken them or not but 250 pills ......... wow please be careful. You are not sad or crazy just frustrated and worried like the rest of us. I guess I have just put systems in place to counteract the forgetfulness and do things where I have to concentrate such as jigsaws or decorating. No problems on communicating separately but facebook? now what password did I use for that ...........

Hey, Im a 16 year old girl and I have been suffering from headaches since I was in primary school. Since hughschool they have gotten a lot worse but I have only recently been diagnosed with IIH but they wont give me medication, surgery or anything to help me even cope with them.. what can I do? I have another hospital appointment on Wednesday.

Highschool*

My 13 year old was given a Lumber Punture to drain fluid from her spine to help with the pressure. She had it with gas and air which made it not so bad to cope with. She had had an eye test which showed 'greying' which is classed as minor but when the did the lumber punture her fluid level was found to be 35 and it should be about 17. Have you had the full eye test at a hospital? That is usually the first thing, then the Lumber Punture to drain the pressure before anything else is given.

I had the eye test and they said i needed glasses as i was seeing colours around letters and such on the interactive whiteboards at school. They've not mentioned any lumbar puncture to me what so ever, but they have said i have IIH. One doctor said i just have to live with it and discharged me.

I think I'd ask to see a Nuerologist. They are the experts and now after speaking to someone else who also has the condition it seems a Lumber Punture (not pleasent but ok with gas and air) are the main solution. My daughter was then put o Acetazolamise to kstop the fluid buiding up. She lost feeling in her hands and feet so was taken off the drug and on Furosemide now. Has had two subsequent eye tests which show the eyes are ok. The reason they take the fluid is because the build up of pressure on the optic nerve can cause blindness so to say live with it seems crazy. Ask your mum to push for a secong opinion - this is allowed on the nhs. I know we have struggled as my daughter is classed as a child and we don't have childrens neurology where we live and see a peadiatrican for most appointments. If they will class you as an adult (usually 16) it will give you more options and quicker as more adult neurologists.

A word of caution. If you have a lumber punture no matter how you feel come home and lay flat for 4 days. My daughter laid flat in hospital for 3 hours and they sent us home with no warning. She felt fine and continued for 24hours as normal but after 24 hours she became hysterical and said her head was going to explode. It seems the body has to adjust and Lumber punctures which can cause short term headaches but just lay as flat as possible for several days and i'm sure you'll cope.

I had sever headaches since Jan 13. Finally when i couldn't stand it any longer I had an MRI scan to rule out anything else. When this came back showing a partially empty sella (an area of the brain that was compressed by the pressure) and the radiologist suggested IIH, my young doctor had to look it up in the medical dictionary - not an encouraging start. But i also suffer from migraines and when my eye test came back clear - most suffers show sings of swelling in the optic disc - the headaches were put down to migraines. However, by this point I was suffering constantly I argued that my 'migraine' had been continuous for the last 7 weeks. And i quickly learnt the difference between my two terrors. Although the symptoms might sound similar, for me: a migraine gives a whoosing in my ears and IIH hums, migraine throbs, IIH is pressure, migraine hates light causes tearing, IIH blurs vision, migraine nausea, IIH dizziness for a bad attack, migraine pain usual stay in one place, IIH pain can move, migraines normally 3 days max, max IIH 4 weeks. And NEITHER responded particularly well to anything i threw at them - cocodamol, dicolfenac, ibuprofen, tramodol. Finally last November I convinced the doctors to do a Lumber Puncture to 'set my mind a rest' over the IIH 'question'. the opening pressure was 38. not as high as some on here but bad enough. It took an hour to extract 50ml of fluid and get me down to 28cm/h20. (normal is 15-20) but then i had what many have described on here a LOW PRESSURE headache. Either too much spinal fluid is taken for your brains liking or maybe you have a small leak at the injection site and the result is your brain is less buoyant and puts more stress on its anchor nerves every time you stand up. So I ended up feeling great for a day as the pressure came off then flat on my back for two weeks - dreading having to get up to pee. it gets better as u refill the spinal fluid. Any way now i am on 1000 acetazolamide for the IIH and 100 Topiramate for the migraine. Its a balancing act and i'm not sure i'm there there. Got another LP coming up to check the pressure to adjust the medication, this time they will do it under x-ray, means they go in and out smoother, less poking around less chance of a leak, and they will just take enough to measure the pressure they wont siphon off any extra spinal fluid, so hopefully no low pressure headache for me this time. and then see where we go with the meds from there.

Hi all.

I seen this discussion and thought i would seek some advice as i am at a lost cause also.

About 6 weeks ago i was walking and had a dizzy spell with headache and went to the gp the next day in which see sent me to accident and emergency.

I had bloods and CT done and all came back normal. They wanted to do a LP but i stupidly refused as was terrified of it being honest.

Went home and spent the next few weeks suffering constant headaches and dizziness

Went back to accident and emergency but they said there was nothing they can do now and think i am fine, So they said i should see a neuro doctor for migraines.

I was told i will have to wait 16 weeks on the nhs.

I decided to go private and paid for a mri of the brain and that was clear. The doctor seemed to think i was suffering from chronic migraines and put me on a medicine called PROPRANOLOL at 40mg twice a day.

I have got a little better but i am no where near 100% like i was before i got this condition. I have done weights for like 20 years but now i cant even dream of any exercise otherwise i feel more dizzy and headaches are worse.

I also have glaucoma that i got about 7 years ago but no idea is this has something to do with all this.

I read your post and wonder if i am suffering from this condition call INTERCRANIAL HYPERTENSION.

Mind you the neuro doctor would have thought of this i am sure but they never mentioned this to me.

My symptoms are constant light headed and headaches at my temples like a crushing feeling and around my eyes.

I feel like a lost cause now and every day is a nightmare living with headaches and dizziness and cant even exercise at all.

Would appreciate any advice on this subject if you think my condition is the same.

Thanks

Malcolm

I've had this condition sine I was fifteen years old. I have great doctors and neurologists and have never experienced a Lubar Puncture longer than 20 minutes. Ask for an utrasound/Xray guided LP, and a towel to bite down on. If you stay still and lay flat afterwards, you should be feeling betterby the next day! I hope your case gets better.

I don't know to. be honest.

Personally I'd let them try three time max.

Are you sure they tried many times?

Sorry to question, bit on my most recent try the doctor struggled to pin point the landmarks, so I thought she had injected me with the anesthetic but she was just working out the landmarks.

Also after that she pushed on my spine to remind the landmarks. As I couldn't see, I couldn't tell.

My back was very sore this time. But I am 5 years older with a bad back. Also I got a delayed low pressure headache...ouch.

If you're worried, ring the Secretary and ask how many times they tried and what is acceptable.

I hope you are feeling better x