Hey
My name is Krissy and i am 20 years old almost 21 and in January i got severly ill like trhowing up 24/7 and doctors could not figure it out i had two 5 day hospital stays but nausea and vomitting were my only symptoms ... its a long complicated story in which i barely understand myself but in march which was the second hospital stay they did a ct scan and then immediatly did an mri and found a small cerebral ectopia the neurosurgeon said its was probably herniated 2mm something like that but he said that would not cause my symptoms so they discharged me and sent me home still didnt know why i couldnt hold down food or liquids even antinausea medicines didnt work... i started taking an over the counter diuretic because my friends mom told me too and amazingly it worked i didnt know why but i wasnt about to question it i still felt nauseas but could at least drink and hold down some foods... whil in the hospital they kept asking me about headaches and well i have had problems with headaches since i was probably like 12 years old or so but i usually just used ice to the base of my skull because thats what my mom always told me to do the headaches happen about twice a week but were "normal" so i was denying with the doctors that they were a concern however a doctor convinced me to take this medicine called fiorcet in which i had a bad reaction too it would severly sedate me i ended up in the er 3 times i think because of it i started taking it April 27th because i got this terrible unberable headache where my "normal headaches" happen at the base of my skull except the headache hasnt gone away its now been 5months and no repreive from thsi stupid headache some days are better than others and since being on diamox it doesnt reach the 10 unbearable pain as often... for pain i have tried hydrocodone, fiorcet, gabapentin, amitriptyline, several types of triptans, and then just recently tried topamax but after being off diamox for just over 24 hours i am vommiting uncontrollably and had to take a phenagran sapository to keep down the diamox ... in may during the bad reactions to the fiorcet i started not being able to walk they call it ataxia its extremely frustrating and they said if it was the fiorcet that caused it would have cleared by now because based on my mri there is no permanent damage to the brain (thank goodness) but i still cant walk correctly so in june 29th i went the er again and they admitted me a third time and thats where they did a spinal tap and the opening pressure came back 22 not too high and they said it doesnt explain the ataxia and loss of feeling in the right leg but anyways the advice part is i was seeing a neurologist who just gave up because he doesnt know what to do with me because im so complicated and i see a new neurologist here on oct 12th what should i ask him for?? i know i need him to come up with a plan for this pain i cant tolerate the headache any longer and they told me they may never be able to get rid of the headache that i might need to learn to live with it is this an appropriate response should i accept that from the doctors because i feel like being in pain all day everyday isnt an option they need to figure something out right?? and also the last neuro said he doesnt really think i have IIh but all the neuros while i was admitted in the hospital said i did... plus the the doctor said my symptoms were consistent with IIh the nausea vomitting headache numbness tingling in hands and feet ringing in ears oversensitive hearing burning in leags (they said that could be a side effect of diamox) and they never really addressed the spine pain i have it hasnt been so bad lately but it feels as though electrical shocks are shooting up and down the length of my spine... excruciating. Oh the other thing after the spinal tap which took them 6 tries that was hideous it hurt too but anyways i felt so so so so much better my headache lessened and i was hungry th first time in 4 days i didnt feel nauseaus and i got that relief as they were puling the fluid out and the doctor in the hospital said that is consistent with IIH... so they tell me to loose weight which im cool with but they dont harp on me about it they arent that big about it ... i just dont understand why one doctor would say it may not be IIh and the others are saying it is?? its all so confuseing at least thats how i feel escept i know everything why am i confused about what i know i have all the facts i just feel like i dont understand i want answers and i want some relief... so waht would yall aske the doctor?
take care
Krissy

Hi Krissy, I read this twice because I was so shocked at the way you have been treated, and have had no help whatsoever in trying to help you find a solution and decent treatment. At least you are going to see a new neurologist, so we can prepare for that with the kind of questions that should get you some answers and hopefully some progress.

It also sounds like some damage may have been done to your sciatic nerve, which would explain the electric shock like feeling. I know from my own experience, as the nerves in my back were damaged by ther lumbar punctures and the LP shunt that I had, and I had the same problems. This is something you need to bring up when you see your new neurologist, so that you can be given the correct medication to help it.

Unfortunately, there are doctors who don't know very much about IIH, or just know the basics, and this could be why you have had so many different explanations. It is not an appropriate response to say you have to live with the headache, and you are right to question it and demand the correct treatment and diagnosis.

I applaud your efforts on trying to help yourself as much as you could, especially under the circumstances, but in the long run you need to be on the right medication, and be getting the right treatment in order for your symptoms to be under control.

If you are happy to, we can help you prepare the questions and help you to be ready for when you see your new neurologist, and get you on the right path.

yes please help is greatly appreciated i have no idea what i should be doing so any and all help or advice is more than welcomed
Krissy

We have two handy guide sheets that you can printout and use, that offers advice and suggestions of what questions to ask your Doctor and Neurosurgeon, so I hope they will be of help to you. Anything else you think is necessary please don't hesitate to ask

Guide to talking to your Doctor

Guide to talking to your Neurosurgeon