Have any of you received a diagnosis of IIH after or during having VM?
I did and I was good for a little over a year. Well now my IIH is back and the headaches stiff neck. I’m so afraid that my VM is back
Have any of you had this happen to you or someone you know.
I know the logical thing would be to go get a spinal tap but I’m scared.
What is IIH?
Sorry what is IIH ? .... also did anyone else get a terrible pain in their groin ? I know it was probably the infection but I only had that once ... and that was with the feb 2019 mini bout, of vm.....
Hi Taryn, I have both as well. When I started the Keto diet and lost weight the IIH was under control. The Keto diet is great for inflammation, that is why I think it helped the IIH. The only problem is staying on the diet, which is my problem. I have failed many times and the IIH returns each time with a vengeance. This February I contracted VM. This with the IIH made life unbearable. I take vitamins, I try to keep (vegan )keto, and yet the VM is still lingering. I think because the extra CSF the brain creates to cushion itself for the VM, makes the IIH feel ten fold worse. I hope you can get relief. I’ve had IIH for thirty years and VM since Feb.5,2019.
Hi there, I was diagnosed with IIH in Jan 2019. I have some many questions and there doesn't seem to be alot online about it. Quick question: what's VM?
What is IIF?
gonebaldy Thanks for your interest. I've just written a piece on my experience of being diagnosed with IIH. I'll tag you in the group if thats ok.
Edit: actually it won't let me. IIH (idiopathic Intracranial Hypertension) is a rare neurological condition. The cause is unknown but its characterised by increased spinal fluid which causes, among other things, migraines and can lead to blindness if not treated. Studies show that its more prevalent in women over 30 who are carrying excess weight. I've written something on it which I've placed in my profile so please have a look if youre interested. All the best!
Yes I had exactly the same after VM I lost 7 stone in weight after being told to and hey still have Iih and keeps reoccurring. So know what you are going through
yes, I was diagnosed after having meningitis I was good for 2 years although my doctor assured me my meningitis had no bearing. I don't buy that one bit, they blamed my birth control and my weight which oddly I had never had the issue ever until I got meningitis. I lost 60 lbs and came off the Diamox with no issues for 2 years gained some weight not a lot and had a bad reaction to an antibiotic and I've been struggling ever since 4 years now with this miserable condition. just had a lp drain done 2 days ago the pressure affects my energy sleep breathing vision hearing moods and memory too now I'm being refferred to get a shunt because Diamox causes metabolic acidosis with long-term use my c02 levels are dropping to 14 and my blood is too acidic I have not had meningitis again but they say once you have iih you will have recurrent episodes of it at some point which just sucks honestly no one knows enough about it and it should be treated like encephalitis because the pressure can cause many of same issues and your doctor should get a new MRI every 6 moths as well to make sure there isn't anything new.
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