hello.. my name is angelisse eddison, im 22 years old and i live in Leeds west yorksire. i am a single mother to a very cute 3 year old boy.
i hve decided to share my experience with IIH so far in hope tht i could help someone or someone could help me.. however my story i very long so please bate with me lol.
it all strted in august 2010, i strted with th flu and was having the usual headache aches and pains ect... after a week or so these symptoms disapeard however the headache did not :/ i thought nothing of it an just plodded on. by the end of September my hedaches were becoming unbarable.. u couldnt lie down, coughing and talking loud left me in agony so i went to my gp. he never even looked at me and just gve m anti depressants and sent m home. that nite i got up as usual to feed my baby and everything went black.... i was soooo scared and te pressure in my head was horific. it passed so left it. it then started happening everytime i stood up but still i just got on with it. on day woke with the horrid headahe and i could barely see so my sister escorted me to the opticians. i was seen immediatley. the lady took one look beind my eyes and said ih dear!!! :/ she said that i was hemoraging bhind my eyes and tht i had to go to the hospital now... i phoned my mum and off we went...
t th hospital a neurologist was waiting there for me and i was wisked strate to CT. fterwards i was taken to the neuro ward and told i was waiting results. when he came he sat on the end ofm my bed and said that thy rushed so much because thy thought i had brain tumour but thankfully tht wasnt the case. i hd a lumber puncture and was started on diamox. the diagnosis was IIH. i had to stay for 2 weeks wich was hard being a single mum to a 13 month old.
finally i was home but the struggle was not over..... i started reacting bad to diamox so the dose was lowered. but because it was lowered my pressure shot up and was admitted again. more lumbar punctures and i hate them. the rest of the year is a blur and my memory is shocking lol.
in December 2011 i wa admitted again to have a icp spinal monitering to see what my pressure was doing and after discovering that even with diamox it was high so an lp shunt was the next thing. Jan 2012 i had my shunt fitted... woke with li pressure headache and back pains but was told this was normal. unfortunatley not!!! i still have th shunt in and its been over draining since it was fitted. i get awfull low pressure symptoms and spend my days laid flat in bed with my poor three year old at my side. it also disturbed my sciatic nerve so i get agonising back hip bottom and leg pain with shocking pins and needles... i struggl everyday and its just too much... i have been admityed with the same symptoms and even having lps with pressures of 2 wasnt enuff for it to be removed. i finaly got ohphone call o be admitted for shunt replacement for vp shunt last Tuesday. after being prepped for theatre i was then told to go hom because there are now no beds..... i was furious... also that im now not having a vp shunt now. just having my lp shuNt removed to see how i go???? i still have pap and visual disturbances so surely my pressure will just shoot back up Agen....

well sorry it so long but thats part of my story and i hope it helps someone or hope tht someone can help me.... i completly sympathise with all IIH sufferers and i hope that one day a cure is found....

thanks xxxxxxxxxxx

Hello Angelisse, and

I don't understand the thought processes in the UK by the doctors. How can they be so cruel? This makes no sense to me at all. Can you refuse to let them take out your lp shunt? Once again, if they had used a programmable valve you would not be overdraining, instead they are talking about taking it out and leaving you with nothing?? I hope that Heidi comes along soon and has some ideas for you. Maybe PALS?? Seems like y'all need to get an mass education process going on to teach your doctors how to deal with IIH as well as improving bedside manner.

Have your eye doctor fight on your behalf. You need to save your vision. That has to be your number one priority. Do whatever you have to to save your vision.

Wishing you a better day, and some better doctors too.

Hi Angelisse welcome to the group. I had similar problems with my LP shunt which was my first one, it ended up permanently damaging my sciatic nerve and lumbar area. I have had short periods of time without a shunt after infections, and I was put on a high dose of meds. The shortest time was 3 weeks and the longest was 6 weeks. Under the circumstances I recommend you get in touch with PALS and tell them about your concerns, especially as you are a single parent with a very young child. They should be able to then convey this to your Neurosurgeon and find a more satisfactory resolution.

I was a single parent until my daughter was 8 and started with IIH during pregnancy, so I know how hard it is caring for a child alone with this condition. So you need this to be resolved as soon as possible so you can care for your son. Please give PALS a ring and let us know how you get on. We're all here for you and please feel free to contact me for anything.

Heidi

hello and both for your reply and advice.. its nice to talk to people who truely understand.

i have been in touch with PALS twice and nothing seems to be rushing things any further
sadley i took a funny turn today and ended up on the ward in agony... they later sent me home even after i begged them to help.. they told me they had no beds and tht there was nothing they could do... well.. from were i was stood i could see four beds empty.

im at my whits end tbh and starting to loose hope...
there is so much i want to do like drive and train to be nurse but atm im just too ill to even get out of bed.
ive applied for DSA twice and got declined both times.. there just doesnt seem to be anyone who wants to help me.

oh and also the registrar told me today that my shunt will NOT cause nerve damage... hahaa ye rite.. were has my back pains ect come from then lol

thanks ladies needed to vent xxxxxxx

Oh Angelisse, I'm so sorry!!! It's so frustrating and disheartening, but hang in there! Getting the diagnosis is half the battle and symptoms can improved so dramatically once they find the right treatment (and actually install it!).

I was also told that my lumbar shunt couldn't have caused my sciatica, but I didn't have it prior to surgery. I also didn't have any accidents or injuries in between surgery and symptoms that could have caused it. They're clueless..lol.

Unfortunately, your story isn't unusual with IIH. They just don't know enough about the disease and it's rare enough we barely get a mention in medical schools, so no one is trained on what to expect or how to deal with it. It can be really overwhelming and isolating, so I hope you're at least finding that you're not alone and do have a place to come for support.

I honestly would keep contacting PALS until they do something to help you and Linda's right, it really may help if you can get your optician involved. I hope you find some much needed relief soon!!!

Take care,
Julie

thanks for your reply.....

not good atm. spent the last four days in bed because im in absolute agony :(

dont know Wat to do. ive contacted my neurosurgeon but there are still no beds... im sick of being in pain and not being able do anything about it...

the back if my head hurts soooo much.

thank u for letting me vent out... im completely stuck
xxxxxxxxxxxxxx

I am so sorry to hear that you are still suffering. Please contact PALS again. Contact the doctors, everyday if you have to. Keep pushing, maybe even go somewhere else to be seen. You need to find someone who will listen to you, who will help you. Please keep fighting to get better!!