idiopathic intracranial hypertension

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