New diagnosis of IIH and need advice

Hi Christine, sorry to hear of your diagnosis, my daughter Beth was diagnosed in January 2014 aged 24. Like yourself it was via an eye test and was sent straight to the hospital for tests and the LP was performed the next day..She had 30ml removed and like yourself was given acetazolomide to take..We were not given any information or advise..having to learn the hard way by googling and finding this site for advise..She too had the same immediate effects as you are experiencing, she hadn't even been poorly before, but boy was she after..All you describe seems a constant theme..I believe that with the LP, if you didn't lay flat for 24 hours afterwards, this will account for the headaches and tingling feelings...I'm afraid all she could do was ride it out and eventually it dissipated..The tablets will be something that may effect taste buds, no carbonated drinks was she able to drink, metallic taste at best was her experience..She is still on them but now tolerates them. They have and do make her use the loo a lot..We found our local GP although sympathetic, had no idea of the condition and had to Google it himself and give us a printout to take away and read..For Beth, she has been on quite a journey, but it seems, although sufferers have similar stories to tell, they vary and can be frightening to read..it seems to progress for some to numerous LPs and even surgery, from stents to shunts, to some, like my daughter, to more like memory issues, spatial awareness issues and those crushing headaches, tingling symptoms and extreme fatigue..I feel although this has been a long 2 years, where family and friends don't understand..and little support from Neuology Doctor except to give scans n pills..the only advise I'd give is this..explore IH sites, join IH group on FB..(but don't be influenced by the worst scenarios, shunts and surgery stories etc..as I said everyone is different and hopefully like my Beth,this won't be the path you will travel or encounter!!),

On an advise note, low sodium diet is advised and weight loss seems to be a general theme, although my daughter was not obese herself, a rare petite as the Eye physician recently said..

As I already mentioned, little is known of IH, if you

want I could try n send you a copy of a post describing what it means to suffer this condition, it has helped others, friends etc, understand why Beth is how she is and assist her in her journey. I hope this has helped somewhat, I will do my best to send the above to you..Keep strong and positive. I hope you feel better soon..God bless you..Mary x

Hi Christine, sorry to hear you a feeling so bad now.

each time I've had a lumbar puncture it has knocked me out for a week, I had to spend the hole of that time laying totally flat and anytime I stood up I got a worse headache than before, and was physically sick.  

Caffeine dan help with a low pressure headache so it's worth a try, which I always found odd ass I avoid caffeine usually.

the pins and needles are probably caused by the acetazolomide.  I've been on them for about 3 years o and still get pubs and needles sometimes.

hope you feel better soon x

hey! when i got my LP done the doctor said i could leave within a couple hours, when really you should lay down for 24 hours after the LP just incase fluid leaks out. You can get low pressure headaches once you get LP's done if there's any fluid that leaks out. For me, i couldn't even sit halfway up or my head would start pounding and feel even worse than when I was having IIH headaches!! For me, for a whole week i had to lay down in my bed because I just couldnt handle it. I'd take some meds and wait maybe a week. Maybe some people have low pressure headaches no matter what position you're in. I hope you feel better soon!