hi there.  lovely to make your collective acquaintance.  and many thanks to you all for being here  


my name is lara.  i'm 39, am a north american transplant who relocated to the UK for work five years ago, and reside in the northeast near to newcastle :Good Luck


i don't know whether this is feeling common amongst others on, or around the time of diagnosis...
but in all honesty 'this' is the among the last places i thought i would find myself :shock:


i have always been a 'big gurl' with a tendency to eat my feelings, and thus have amassed a curio cabinet of maladies - which i assume responsibility for, largely as a consequence of my lifestyle/choices (e.g.: pcos, nonalcoholic steatohepatitis & hypertension).  for good measure i was diagnosed in my teens with hashimotos thyroiditis, and - admittedly the most challenging battle of all - have struggled with a longstanding history of clinical depression :(


that said i have coasted along relatively well, and - despite my somewhat sedentary state - manage to peel myself out from under the duvet for the occassional 10k or half-marathon so as to prove to myself that: a.) even though it may take me half a day to complete i am still physically capable & b.) i am still well enough to do so in the absence of a stroke and/or cardiac arrest ;) 


in tandem with said depression i have experienced headaches and lethargy.  thus when headaches became more frequent and i became even more tired over the last two to three years i thought little of it.  i went to the gp, swapped ssris on numerous occassions, visited the rheumatologist to no avail + my endocrinologist to double check my thyroid, and ultimately was counseled to de-stress... get my a$$ on the treadmill... drink heaps of water... and refrain from putting anything in my mouth that didn't need to be there :quiet:


things got so bad in the past couple years that on two seperate occassions i turned up to the gp and was signed off work for due to what was thought to be depression - though headaches, fatigue, and cognitive features (e.g.: problems with memory, word finding, and feeling uber spaced out) were the precipitating factors :frustrated


in december of last year i started to see stars when i would get out of bed, whilst in the shower, when bending over, and sometimes getting out of a chair.  i figured it was my blood pressure, and my gp thought the same so she upped my lisinopril.  then come march of this year things got really weird as i started to hear things (unbeknownst to me at the time this was tinnitus), see things (which i now know to be associated with paps), my headaches were off the rails, i was so exhausted i could barely get out of bed, and cognitively i was not operating as i should  


if i am honest i was TERRIFIED, less because of what was happening, and more because of my theory as to why... as i was absolutely petrified that if my symptoms were psychiatric and linked to depression (in that to date all that i had been experiencing was thought to be) that i may fully be losing the plot.  not that there is anything wrong with and/or remotely undignified about losing the plot, but as someone who works in social services and has academic responsbilities in higher education, if this was in fact the case i was panicked that my licensure, academic tenure, and ability to support/care for myself as a single person may be in jeopardy  :afraid:


(pardon the oversharing... and excessive emoticon use... i'll be bringing this home here in just a jiff)


to make a long story short i crawled back into the gp... told her i was seeing & hearing things (at this point i was also dizzy & doing the occassional face plant whilst walking to and fro) and that i was terrified i was losing the plot.  she looked in my eyes... shuffled me off to the eye infirmary straight away... and a ct, two mris, four lps, numerous visits with opth/neuros, a couple of visual field tests, and a partridge and a pear tree later i was diagnosed with iih at april end  dance 


things aren't sorted quite yet, in that despite upping the diamox to 1000mg and dropping a stone my pressures seem to be increasing (i had my last lp yesterday and the opening pressure was 45)... but i've not been sectioned ;), the care and attention i have received has been both speedy & phenomenal... and i could not be more grateful to be clued in as to what's really been going on


MASSIVE THANKS to all of you for being here at the ready via this forum... as the info i've gleaned whilst in limbo awaiting a definitive diagnosis has been invaluable.  not to mention the fact that having y'all at my fingertips made me feel like i wasn't alone :flower: 


hugs,
-lara p.

Hello Lara, and 

As you read around this fantastic site, you will see just how much your story is similar to the rest of us.  You are indeed very fortunate that you have been diagnosed rather quickly.  Many go for years still searching for a cause.  I just hope that you are able to get your IIH under control quickly too.
The dose of Diamox that you are on is about "normal."  It can be raised much higher though, if need be, but the higher the dose the more pronounced the side effects.  Have you been experiencing any?  My biggest annoyance was the tingling.  It took me quite some time to get used to that one!
While having the LP, did they draw off fluid for you?  I used to really like that part because it would mean I would feel better for a few weeks anyway.  I would stop the Diamox a few days before having the LP, as requested by my docs, and then take them again starting while I was in the recovery room!  It really helped me to keep the pressure lower, longer.  I did end up getting a LP shunt, which has been problem free (installed 11-11).  
While losing weight is always a good thing, it is NOT a guarantee to "cure" IIH.  In fact, there are many very thin members here on this site that can attest to that!  I hope you will be one of the lucky ones and it will provide you relief.  That would be wonderful 

hi Wylee! thanks very much for tolerating my drivel and for carving out the time to reply to my post.

first and foremost i just wanted to honour your clarification that iih is not exclusive to people of size like myself.  i am well aware that - despite higher prevalence rates for folks like me, and research that speaks to the propensity of these numbers to potentially be on the rise in the future as a consequence of an obesogenic culture - iih knows no bounds.  apologies if what i previously posted read as glib, as this was fully not my intention.  admittedly i do find it challenging to seperate myself from my size.

as well MASSIVE THANKS for the heads up re: your diamox strategy pre & post lp.  i so wish i would have had this kernal of wisdom in my pocket late last week, as the lp i had on friday made for a rather miserable weekend.  they took me way low on the closing pressure... i felt great.... and since i was advised to double the diamox i did so right away... which i'm thinking greatly contributed to my misery.  i've experienced my share of diamox symptoms (e.g.: pins & needles in my heels, numbness in my fingers, fatigue, brain fog, anything carbonated tastes like paint thinnner, i have zero appetite & and my hair is falling out) but all things that i am willing to tolerate in the hopes of avoiding a shunt.

that said i am by no means anti shunt.  but revisions are a consideration, and thus care and coverage are as well.  whilst here in the UK the NHS has been very good to me.  i should probably qualify my previous post by clarifying that i have yet to see a consultant neurologist, i am still in the queue from March for July, and i am happy to wait.  to date i have been cared for by registrars (akin to residents in the US) as a day case on the neuro ward for evals & lps subsequent to an a&e resus admission.  i'm fortunate, and grateful, and have nothing but good things to say about the care i have received. but as a single person without family - it's all me.  and from what i gather about iih - though remissions do occur - i might be in for a long game with this one.  and if i relocate back to the US or Canada (i'm dual) my circumstances would be very different.  in Canada i may be hard pressed to even locate a gp accepting new patients so as to secure a referral to a neurologist.  and in the US as you well know, the care you receive is tethered to the quality of insurance afforded by your employer, your ability to insure yourself, and/or your ability to pay.  (descending from soapbox)

thanks again for your reply Wylee.  i appreciate the kindness and support you, and other folks like you affiliated with this forum, offer.  and to reitterate - it's a help not to feel so alone in this.

big hugs,
-lara p.

Tara, you are very wise.  You have done your homework and have a great attitude about this whole thing!  Good for you.

Surprisingly, it appears that even though NHS sometimes gets it wrong and PALS has to intervene,  there have been excellent reports from our UK members on their treatment.  You may want to PM one or two and see if they may have some words of wisdom for you.

I hope you did not have low pressure symptoms following your lp.  Those headaches tend to be far worse than iih ones.  Also, write a note to yourself, immediately after lp lay flat for at least 45 minutes.  
As you have a look around the site I am sure you will pick up more ideas.  Also, feel free to ask any questions you may have.  Hopefully the others will be by soon. :roll:

Hi Laura and a very warm welcome to our support forums. I totally sympathise with all you've been through and how you feel, unfortunately it seems to be a common story we all have in common no matter where we are from.

I'm so pleased you found us and that our information has been a help to you. We're always here for you and never apologise for oversharing or even for having a rant, that's what we're here for.