When Acetazolamide(Diamox) hits back.

Acetazolamide (Diamox)

So today is turning into a pretty crappy day as regards side effects and symptoms of the condition itself.
Where to begin - 2 days ago I had a flare up of IH symptoms - the pressure headaches, the vision issues, the problems with balance, ringing in the ears and the damned word confusion and forgetting the most simple of things.
The waking up at 4.30am to drink gallons of water just to try and take the edge off the thirst this drug causes me and the constant bathroom visits were really taking there toll too.
I took my Diamox and decided to grab an early night, only to wake up covered in very itchy blotches with the worst pressure head EVER! Trying to be sensible I called the GP who decided I was potentially suffering from shingles (yes shingles) or maybe I'd eaten some fish that didn't agree with me so I should take an antihistamine! Bear in mind this Doctor hasn't seen me and is speaking purely based on the symptoms I can declare over the phone. Anyway, having never been one to complain I decided to self administer a dose of 'Suck it up Buttercup' and over the counter Loratadine antihistamine as suggested by the GP. The itchiness subsided but the blotchy rash remained and my IH symptoms were becoming worse :(
The following day even with taking the Loratadine there was no difference and the blotchy patches kept appearing my chest felt tighter and I seemed to have less of a lung capacity. I phoned the GP again and luckily got a different Doctor who took me seriously, she wanted me in that afternoon!
When I arrived to my appointment she gave me a thorough check over and decided it was urticaria but because she didn't know enough about Diamox OR Idiopathic intracranial hypertension, never mind how the two could interact with one another and the sheer fact she was so unnerved by my breathing she sent me across to my local emergency department! 4 hours......4 freaking hours of waiting......4!! But the outcome was seriously worth it, they too took me seriously and prescribed prednisolone steroids to counteract the allergic interaction until I could get around to seeing my neurologist since they feel it unwise to faff around with my Acetazolamide personally >.< 
Yes this means I am now on the grand sum of 15 tablets a day with no improvement to my symptoms and if anything feeling more sh**ty than when I was first diagnosed.
I guess I wrote this post because mostly we see 'I am a warrior, I have IIH it doesn't have me'. Well I like to keep things real, for the last 4 days I have crawled through my battle with IIH and it has certainly bloody well had me. But give it a few days and I'll be back to attempting to kick it's ass. It's ok to feel down, it's ok to be beaten and it's ok to cry in despair because guys even the best soldiers don't feel like fighting some days! Just know that we do all have those days whether we like to admit it or not. We are siblings in arms fighting a never ending war, but through the highs and the lows I want you to know.......you are amazing and you are NOT alone! xx 

Whirlwind Diagnosis

Where to start with such a topic? I guess the best place is the beginning......

Around 3yrs ago I had gone to a routine opticians appointment as headaches and sight problems had begun to plague my life. I was told I had some swelling to the optical nerves behind my eyes and that this was nothing to worry about but a referral to the ophthalmology department at my local hospital would be made. A few weeks later I received and appointment for a months time but due to an unforseen house move I was unable to attend.

Fast forward 3yrs. The headaches are unbearable and the sight in my right eye is like what I can only describe as looking through baking paper permanently around the edges of my eye but with relatively clear vision centrally. My balance and spacial awareness are shot. My eyes feel externally and internally puffy and my sensitivity to light is becoming a real bother.

I decide my glasses prescription must need renewing, so naturally made an appointment to visit the optician......little did I know my whole life was about to be turned on it's head.

On the Tuesday I attended the optician and had my glasses prescription changed and an urgent referral made to the hospital for the swelling of my optical nerves, although I understood now that this was a concern, I still had no idea to what extent.

Wednesday I get a call from my hospitals ophthalmology department requesting for me to attend at 1.50pm the following day. By now things are starting to seem a little worrying to me.

Thursday comes around and the ophthalmologist does all the checks she needs to do, including dilating my pupils (may I add I had never had this happen to me before and the experience is not one that I ever wanted to repeat in a hurry). She got a rather worried look on her face and excused herself to go and grab the departments consultant. He popped into the room and ran through the same checks and dropped the bombshell. 'Madam we need to admit you for further investigation and an MRI, I believe it to be potentially unsafe to allow you to leave the hospital with such tests'. 

WOW! My head damn near exploded! In all my life I had only been in hospital to be born myself and to give birth to my own daughters and suddenly this specialist says I need to stay?!.

Test after test was thrown at me, bloods taken and a CT scan arranged......still I didn't know what and why I was in hospital. On the Friday I had my CT scan......The doctor came back to me with results, ok my dear the CT scan shows no brain tumours and nothing of major concern so we are going with a working diagnosis of 'Idiopathic intracranial hypertension' pending further tests an we will be performing a lumbar puncture later this evening. And off he flounced to see his next patient.

WAIT, WHAT?!? EH?!? Idiopathic intracranial hypertension? no tumours?? Lumbar puncture??? I'm 25 and have no idea what any of this even means!!!! So I google it and use reputable sites to research the condition....

*No known cause

*No known cure

*No licensed treatment only guesswork, tablets, lumbar punctures and possibly shunt surgery!

Eventually around 5pm Friday 2 doctors approach with a consent form for me to sign for a lumbar puncture, I looked at my best friend and right then we realised this was no joke.

I signed my consent and she signed as witness to my consent and the lumbar puncture went ahead.

Holy S**T that was painful, uncomfortable and quite frankly scary as hell! Right then I think we both knew our friendship had hit a whole new level and as she wiggled her fingers to get her circulation and feeling back in her fingers since I'd so kindly released my death grip we discussed wtf all this stuff meant with the doctor!

Pending the results of my spinal fluid tests it seemed that IIH seemed to be the best diagnosis as the pressure was pretty high....34.

And again I was left to process this information and what it meant.

Later that night I was hit with a head and face pain like no other I had ever known, it felt like my head was going to explode.....oramorph was given left right and centre to no avail when suddenly a doctor became available and laid my bed flat and the pressure seemed to disperse.....Post lumbar puncture headache!! Why had no-one warned me about this?? Wow the pain!

The Saturday came in a blur of half sleep and post LP agony. My spinal fluid showed no infection so I was discharged from hospital on Acetazolamide (Diamox) 250mg twice a day and told an MRI/MRA/MRV appointment would be made for me to attend as an out patient.

A week goes by with improved symptoms but certainly not cured, when disaster struck, the headaches became progressively worse and my vision in my right eye started to rapidly deteriorate. I called my GP and went for an appointment to then be admitted back into hospital!!! I spent the day and night being monitored and having a big fat sweet NOTHING told to me again.

The next morning I was taken for my MRI/MRA/MRV to rule out blood clots and neurological blockages.

The results of which were no blockages and no blood clot. My medication was doubled so now it was 500mg Acetazolamide (Diamox) twice a day. 

Then my worse nightmare came about......ANOTHER lumbar puncture! Opening pressures right back up where I had started in the first place! So the excess pressure was drained and I was discharged home again with the Acetazolamide (diamox) and a formal diagnosis of Idiopathic intracranial hypertension. Hopefully my neurologists appointment will arrive soon as I don't think I can cope with the clear lack of knowledge surrounding this condition.

What a whirlwind. And still Doctors can tell me nothing they just don't know anything about this condition or have very limited knowledge and the pharmacists have very limited knowledge on the medication prescribed too and repeatedly tell me well it's not licensed for your condition so I have even less advice for you!

Fingers crossed for a treatment or a cure soon as this condition is borderline unbearable!