I had been having severe headaches for a few months, I went for an eye test thinking that i must need glasses, the optician sent me straight away to the hospital and I was diagnosed with IIH in July 2011 was kept in hospital overnight after having a Lumbar Puncture.
This week I received my 4th Lumbar Puncture and it was horrendous the doctor tried for over an hour to do the procedure, and my back it like a pin cushion. He finally gave up and went to get the Consultant who managed to complete the procedure. By this time I was in agony. I couldn't even get off the bed or put my shoes on.
The question I have is how many times is acceptable for them to try this procedure?
Hi
I have IIH, had over 56 LP now. Last one for me was over two hours and the consultant had to stop the procedure.
You can ask for the LP to be under Xray guidance. Sometimes works, but have to say never really had a great LP. Always ask for extra local in the area.
You can also stop the procedure at anytime.
Tippy
I won't let them try more than 4 times in one sitting.
Relaxing and getting curled up is the key
Like already said you can stop them and X-ray ones can be so much easier
I also have IIH and I have a vp shunt.
Feel free to follow me on twitter VDubsTDi also on YouTube under the same name
Also you can find support on I have IIH website
Hi I have was diagnose with IIH two years ago after losing my sight· I am under as neurologist have had several different brain scans and a lumber puncture which was how they diagnosed me my lumbar pressure was 56 so they drained fluid off till they got it down 39 and put me on meds. I have had numerous visits with the neurologist who does not seem to tell me much or explain what is going on properly the ophthalmologist isn't much help either. I have six white spots show up on my brain scan but no one will explain to me what they are or what it means and when I have looked the condition up on the net I find it even more confusing I have been put on 1000mg Acetazolamide 250mg Topiramate and 3000mg -dydramol a day and still get head aches some days it's that bad my head pounds with every step I take it feels like it's vibrating through me and shaking my brain can anyone explain this any better to me
Hi I did read somewhere that there can be a risk of infection if lumbar puncture is performed to many timesx
Hello. I had the same as Carling. Eye test resulting in hospital resulting in IIH diagnosis. Have been on Diamox SR 250mg for 2 years and undergone 2 lumbar punctures. The first was so horrendous and I stopped the proceedure after 45 minutes. It was absolutely agony and with no result on pressure found it a waste of time. A couple of weeks later I went to a different hospital for a lumbar puncture and explained how painful the proceedure had been. The doctor was very young but explained he did it regularly and promised it wouldn't hurt. Got to say, he was perfectly correct and after the initial injection, was absolutely fine (even if I was still petrified throughout!). I take 6 tablets of Diamox a day and get horrendous pins/needles as a side effect but at least the headaches are much less. My perreferial vision is getting worse each time I am tested. Am now told only my right eye is affected but I may need a shunt - very concerned about this and putting off anyone poking around in my brain/head. What are other people's experience of having a shunt?
I was diagnosed in 2005. In the first 6 months I had 6 lumbar punctures and was eventually admitting to have a lumbar peritoneal shunt fitted. The upside of this shunt is that there is no brain surgery involved. The shunt feeds from your lower spinal column into your stomach. The downside is that I have found that it doesnt make a difference. I still have to take 6 Gabapentin pills a day to stop any headaches.
Hmmm less inclined for the shunt now more than ever if it doesn't cure the problem or mean no tablets. The other alternative offered is that they can operate directly on my eye. I didn't catch the name of this but did hear it can produce a squint which the Doc said was treatable should it occur. I need to be making a decision on which one. These tablets are breaking up my relationship - tiredness, constant irritability as well as the constant pounding in my head. The bloody memory loss has caused me to loose my job as I appeared so damn inefficient not remembering even the most basic of things. Has anyone had a successful shunt and what are the downsides? Has anyone had this operation on the eye and what were the results?
Hi! I was diagnosed just half a year back, I had all the symptoms, awful headaches, nausea, pulsating sound in one of my ears, weird vision like seeing flash of lights, coloured spots, double vision etc. This disease is awful and hard to live with. First I took Diamox (1000mg) but it did not help too much so I had one lumbar puncture and started to take cortocosteroids. This treatment helped a lot, my papilloedema dissapeared in 1-2 month (my eyes were checked every second week).
I have a really good neurologist and she said that repeating the puncture many times is not the right treatment. First comes Diamox(no more than 500-1000mg) and if it does not help than lumbar puncture and corticosteroid infusion is followed for 5 days, after this I took steroid pills for weeks. I really did not want to take steroids but it actually helped. On the other hand I suffered from several side effects so its not good taking them for too long. But the most important is weight lost (if you are overweight), I just feel my disease is back and I think its all because I did not take the diet serious enough. 
I read that most of you had pain during lumbar puncture. I did not feel anything, but I had post puncture headache that was the worst pain in my life for a week, I hardly could get up... if there is any other way, I would not take puncture again... but not everyone suffers from this headache, I guess I am just really unlucky...
Hi Snowangel. Hoping you can help. Our teenage daughter was diagnosed with IIH after a Lumber punture about 8 weeks ago. She had a week from hell afterwards which we now understand can happen. Thereafter we were expecting some improvement. We have had a further eye test which showed a slight improvement in one eye last week but dispite this she says the headaches are getting worse. All she wants to do is sleep. She says she cannot concentrate on anything if shes awake. Is this normal?
Only thing we are on is a diuretic but waitng to see the neurologist but cos shes not classed as an adult we have to do everything through a pedeatrician which seems to dragg this out. Any help, anybody?
I was diagnosed with IH at 17weeks pregnant in 2004. I too suffered for nearly the entire 17 weeks with agonising headaches which the Dr diagnosed as hormonal due to the pregnancy. Only after visiting the optition and being sent directly to hospital, having an mri scan and numerous other tests was I diagnosed correctly. I underwent one lumbar puncture procedure which helped for a few days until the pressure rebuilt. I was then prescribed furosemide to take daily which controlled the condition up until April 2009 when I finally succeeded in losing enough weight to come off the meds. I regained some of the weight and the headaches, pulsing tinnitus, visual problems all started to come back. I am currently symptom free, and also the lightest I have been in 15years! My question is, has anyone suffered any long lasting side effects other than the ones we all know about? I personally have suffered with a complete lack of libido for almost 8yrs! All blood tests have come back clear, so it's being blamed on psychological problems but after just reading an article on oxytocin and how and where it's produced, I'm now wondering if the pressure has caused damage to other parts of my brain and thinking perhaps I should insist on a scan of my brain to rule this out as I've always thought this is a physical problem as opposed to a psychological one. Any thoughts?
I was diagnosed with IH nearly 2 years ago, I had a CT and MRI scan and then a lumbar puncture which was horrible took them 2 hrs and 3 people before they managed to get it right, I was put on acetazolamide for nearly a year then the neurologist said the pressure had gone took me of that and on amitriptyline and told to loose weight. The pressure is back again, I am missing days off work as headaches are so bad I feel lifeless and totally fed up I didn't think the pressure would come back! I have tried loosing weight but it just doesn't want to go, I dread seeing the neurologist again next month as I can't bare the thought of another lumbar puncture. Can anyone tell me what painkillers they have been put on as I was originally given co codamol got addicted to them then was told I had to stop taking them and work through the pain, anyone know how I can work through the pain as I find that very hard. Ant advice would be much appreciated as work is getting fed up with me being on the sick days at a time.
Hey people find me on Facebook search for Lucinda VDubs Sara
Also on YouTube as VDubsTDi where I have over 100 videos about IH and my vp shunt
I'm on gabapentin for the pain
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 link http://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.