Hi, I was Diagnosed with IIH after 2 weeks of being sent between my Gp and the Hospital!! I had been to my Gp several times with my symptoms but was fobbed off several times with different diagnoses, it came to a halt though when i finally saw a different Gp at my surgery and he feared that I was going to have a Stroke he then had me admitted to hospital to have Ecgs, a Ct scan etc to find out what was going on after a few hours I was sent home after being told its ''Just Migraine'' (the number of times i sobbed hearing this over and over knowing it was more than this) no ct scan or anything they listened to my story that was it, however they did discover I have Pappalodema so referred me to an eye clinic within the hospital in a few days time to check what this was for sure, so in a few days I returned and had drops to Dilate my pupils! (how horrible) it was confirmed there was sweling behind my eyes (pappallodema) but they would need to see me again once my eyes were no longer dilated so i returned again in 2days to which I saw a consultant in the eye clinic, I explained my story he was extremely concerned he said I should never have been discharged the week before without having the ct scan, that I should have had an Mri also, and that he can confirm also I do have Pappallodema so yet again I was admitted to Hospital, I had a Ct scan and Mri done straight away and this revealed I had a Chalri Malformation and IIH, because of the chalri malformation I cant have a Lumbar puncture ever! If they did it could cause major complications and could kill me! (sorry to be blunt but not really a polite way of explaining it ) so at the moment Im on medication Im on Acetezolomide, Topomax and Amitriptyline! However they are now having to wean me off Topomax as its given me panick attacks so will be going back to Acetezolomide and although Amitriptyline is an anti-depressant its also used for neuro pain so thats what they have put me on it for at night time to help me sleep! Since being admitted to hospital i was in for a week and being discharged I have felt completely abandonned by the hospital!! I am not under a consultant so if i have any problems there is no-one for me to call Im having to try and contact doctors that saw me when I was in hospital or I have seen at the 2 appointments I have had since, which were to see the opthomologist!! I dont feel the acetazolomide work for me, I still get alot of pressure headaches, i struggle with day to day life and feel this is not how it should be!! I have 2 young children and my husband works I dont have time to be ill!! So my question is to all you peeps out there what sort of meds are you on and how long have you been living with the condition?? I have no idea how long this road will be!! Please help!!!!!!

Hi Kirsty,

hello and welcome. Unfortunately your story is not uncommon but is shocking. Your first port of call should be PALS at your local hospital. Write/ring/email/pester and tell them you need a neurologist. I ended up paying privately to see one and then going back on the NHS. To be fair to PALS they are slow but I have made progress with them - I would give them a list of all the reasons you feel the way you do and give them chance to sort it out.

I too have two children - one 9 and one is 2 so I know that feeling of not having time to be ill. I was diagnosed again in March this year after many many years in remission. I have tried all three of the medications you mentioned and am currently on topiramate. It is a bit of a battle with the crying fits but I find that it really does stop the headaches and the face pain. So I'm battling the mood problems that come with it.

I am sure there are people on here who can give you much more information with regards to Chalri Malformation. It's something I have no experience of.

The very best of luck on your IIH journey. Hope today is a pain free and happy one

hi Kirsty;
welcome to our group! normally you would have gotten many other notes by now, I think everyone is off for the weekend. but you will find lots of support here so keep coming back.

I think I've had this since 2001, but really crashed 3 yrs ago. I didn't get diagnosed until this spring. I am still trying to figure out the best treatment and I do have daily symptoms but I am functional with the regimen I am on, so far. so, yes, it is a long road usually. many people on here have gotten shunts and are doing great. some do fantastic on the meds. you will have to just figure out the best thing for you. I found Diamox and Topamax to be extremely sedating. I can take a very low dose of Diamox but that's it. when I get very foggy (my big symptom) then Lasix can help to clear it. what works the best is Prednisone, which of course no one wants me to be on long term. but I can feel normal on Prednisone. now I am on a very low dose of 5 mg twice a day that my neuro is OK with.

I am in the US so I don't know the medical system there, so not sure what to tell you. listen to Zoe above about that.

one thing I like to talk about is triggers. you may not realize you have them or you may already know what makes you worse. for me, chemical scents, noises, stress, crying, all can make me very sick. anything that creates a Valsalva can raise the intracranial pressure; this is any type of bearing down like a cough or sneeze. I get dizzy when I sing or just raise my voice. so, try to stay quiet and calm and don't cry. you'll figure out what you need to do for yoursef. it IS a tough road, but we are here to hold your hand.

Deb

Thankyou to both of you for your replies!! Unfortunatley not a good weekend for me, I have continued with high pressure head aches and continuous face twitching (extremely frustrating) and alot of pain in my neck :(

A quick question to yourself Zoe (PennyRoyal), I havent heard of PALS, what is that?? I am on topimirate (topomax) but having to slowly come off of it again because of the panick attacks it was causing :( but it didnt seem to be taking the pain away at all, but none of my meds do and im beginning to wonder is this all because I cannot have a lumbar puncture?? as people that can then the tablets manage it better at a lower pressure i dont know but nothing seems to be working!! It all just makes me extremely drowsy and im constantly crying so can sympathise with you on that one! Thankyou Very Much hope you have had a happy pain free weekend xx

Hi Sophiasmom, Wow what a long journey you have been on! I also find the diamox and topimirate sedating which is not good with a 14month old baby! I try to nap when she does, I'm on a fairly high dose of diamox I think, I take 500mg of diamox am and 500mg pm, I havent heard of prednisone but its good to hear all the different ones as it may be something different my docs can try! I also have the same/ similar triggers as you which make my mine worse also walking in the cold! I have found that out recently!!

Thankyou so much for your support ladies it really means alot I appreciate it, and Im here for you both also

you're welcome!
if you have to cry, just keep breathing through it. don't hold your breath. let yourself sort of hyperventilate and let the tears run down. the emotional upset is quite toxic and it will lead me to be unable to walk, even if I don't cry! so do try to settle your emotions and know that you will get through this, and you will feel better if you stay calm.
Hang in there! there are several other women on here who moderate and are from the UK and know all about PALS so hopefully by sometime tomorrow they will write and give you more info. for all I know there is something on the site about it you might be able to find. they have all sorts of hand outs in other sections.

Deb

http://www.pals.nhs.uk/

Pals are the people who should liaise with the hospital and get you all the info you need. The link above should help you find your local PALS. My local one is based in the hospital and is the same as the complaints people so it made it quite easy when my inquiry turned into a full scale complaint!

With the topamax I find it does reduce the pain even when I'm not having LP's as it brings the pressure down- I guess everyone is different. Have you got anything else for pain relief? Topamax and Diamox should help reduce the pressure and the amitripiyline with the nerve pain but if you are still in pain you could ask for something else maybe? I guess if you don't have a neurologist that's quite difficult. Get onto PALS and tell them you need them to sort it out

Disaster has struck!!!!!!! I was admitted to hospital yesterday.. it all started with me blacking/passing out yesterday morning while on my own with my 14month old daughter for around 30mins, and me struggling with pain in the left side of my head for 2days which still continues today unfortunately! Its safe to say I now know who PALS are and they will be fully aware of me!! After being admitted to an emergency admissions unit and seeing 2 different doctors both agreeing I needed to see a neurologist and that they were not happy for me to go home and wait for appointments they would request they come to the ward and see me! So I see a neuro Registra that decides a mixture of all my meds the diamox, topimirate, and amitriptyline caused the blackout/passingout that I would Immediately stop taking topimirate, increase my diamox back upto 1000mg a day, and go home! we were not happy with this and wanted a second opinion as id also been told they would do a ct scan or mri but now were not, so the junior doc came back and said that i should go home and wait for letter from neurosurgeon to discuss surgery(one i have now been waiting 6weeks for as it was a referral from neuro registra but 2weeks ago when i phoned it hadnt been done but was assured that day they had then done it to be told again to its not been done!!! angry!!!!!), again we were not happy to just be left, it wouldnt be so bad if they gave us a follow on check up but we are going round in circles!! So said no wanted 2nd opinion so neuro registra was supposed to be coming back with his Consultant, but he did not he came alone, tried explaining risks to surgery and scaring me, as though i want the surgery for the fun of it!! I do not!! but with all my medical issues and medication doesnt seem to be working and no one showing me any other option i see no other option!! During this conversation we said we would be happy to leave even with an appointment from Neurosurgeons to know we are being taken seriously, but It turns out the Neurosurgeos Registra would come and see me to discuss options!! 4HOURS!!!!!!! LATER we are still waiting and the junior doctor tries to chase the registra he tells her to tell me that he will not be coming to see me as he needs to discuss further with the neurosurgeon the ventricles in my brain are smaller than normal so would make a VP shunt even riskier but this showed up on an mri i had in august why not tell me then?? why not come to the ward and tell me yourself?? why refuse to come and see me?? Its disgusting!!! I feel totally let down by the Nhs!!! There are bits and pieces more to it but this is just the basics!! :(

I cannot believe what you are having to go through. They seem to have no clue what they are talking about. I was diagnosed in May this year after a trip to the opticians because of blurred vision, my optic nerves were found to be swollen. I was referred to my local eye clinic who admitted me and gave me a CT scan and a LP and I was them put on 1000mg of Diamox and given an appointment with a nureologist as well. I am now ttaking toprimate as I was not coping well with the side effects of Diamox and fortunately am managing better with these. What I will say is everyone is different and it is a horrible illness but the tablets do work and bring the pressure down but they don't work overnight it does take time it took me a couple of months before I noticed a difference. I know they don't work for everyone. I have been lucky as my only problem was one for difficult consultant who told me I needed to loose weight and that I was very up tight. Incident I was very panicky when I was taking Diamox and I was taking two tablets on a morning and two on a night ny consultant told me to spread them throughout the day and this helped with the symptoms. Just take each day as it comes and I hope things start to pick up for you soon

Kristy, I'm so sorry! I know you've been dealing w/ this for awhile and just want the appointment they promised you..I would definitely contact PALS. They should be able to advocate for you and make sure you get that appointment..sooner rather than later. I have never understood why emergency room doctors make us wait for appointments and tests..it's all right there, so you'd think it would be easier to do it all while you're in one place. In my experience that has NEVER happened. It's very frustrating and disheartening, but keep pushing. Also remember that VP shunt and Diamox aren't your only options..hopefully they'll get you to a neurosurgeon soon and you'll be able to discuss it thoroughly. I'd keep a symptom log for additional documentation especially with your recent change in meds..it will give the surgeon more info about your condition and treatment. Check the guides and print outs section here..you'll find good info on talking to your neurosurgeon, symptom logs, etc. Let us know if you have any questions..we'll do our best to support you through this difficult time!


Julie

Kirsty, this sounds awful - very disorganised. Make sure you do use PALS and get a formal complaint down in writing if you can. I emailed them a list of my main concerns in bullet points because I wasn't well enough to write a formal letter but told them to consider it a formal complaint. They then have 25 working days to investigate your concerns and respond in writing to you (or agree an extension to investigate.) Don't give up - its hard to fight when you feel so ill.
The very best of luck - keep us posted xxx