im back

I have been having pc problems so havent been able to update my blog as often, but i ahave a new pc and back.

Its been a while, well the new meds that my neuro put me on as seem to be helping, altho it was a rough couple of wks when i first started them, they made me feel sick, but i also caught a nasty sickness bug on the day of my little girls 6th birthday party(19 april), so with body adjusting to new meds and a bug was not a good.  Thanks to my mother in law and partner the party was fab altho i felt too ill to really enjoy it my little girl loved it.
My youngest is starting visits to school nursery next week ready to start in september.

I think all of us on the chalenge have had some rough times either with iih or family issues, but we have all tried to keep positive. my weight has gone up and down, i cant seem to stay below 12 st for long, but theres a long time left yet so i will get to my target weight.

The one big thing i have managed to do which i never thought i would is i completed a half marathon.  I did the moonwalk london half moon on the 14th may (13miles), i signed up last september when my iih was behaving, but since jan it was a struggle to find energy to do my training and couldnt walk long distances due to my headaches getting really bad.  BUT I DID IT, i am so proud that dispite my illness i managed to cross that finish line, it was a very emotional on the nite and for a couple of days after because i got so many good luck wishes and well done messages from all my iih family on facebook.

i will leave it at that for now, but will be back soon

the start of a very busy week

Been a busy weekend getting the house sorted ready for my mother un law coming over tommorrow, shes staying till sunday which is my eldest birthday party, cant beleive shes gona be 6 its gone so fast.

I had my appointment today wth my neuro today so after getting blood test results back and them being all clear i did what my gp advised. I went with a list of symptons, how i feel each day and a list of other meds often used in treating iih. (which i got of iih uk). I told him about blood tests and what gp had said about not knowing much about iih or diamox so thats wht i had done the list. He actually took time to read it and listen to me, hes told me to take my diamox at night insted of morning, because pressure is higher when laying down so the diamox will be working at its best when needed the most and shud ease some of the side effects. He has started me on amittripline which is a antidepressant/relaxant, he sed this was sometimes used for headaches and to ease the muscle tension headaches can cause, also may help with my sleeping problems, so no diamox till tomorrow night then on thursday start taking my other med with it to, hoping it dont give me any more side effects cos i have enough of them already.

I was feeling a bit down last week because i had only lost a 1lb, then nicola jarmen who is also doing the challenge made me feel loads more possitively by showing me another way of looking at. Rather than seeing it as a weekly loss, look at in the long term, so this week after only loosing another lb i did just that and this is what i have realised.
If i only loose 1lb each week from now till 28 november i will have lost 33lb, which will bring be to just under to 10stone, and will have raised money along the way for iih uk. So altho i wud love to loose lots of weight each week, i think only loosing it as i am will hopefully mean i can keep it off because i have just cut down on portion size, cut out cake and choc.
I am going to start using some slimming world recipes to help me to start cooking more from scratch than stuff from freezer shop, i am a really hopeless cook, it usualy ends it disater and tasting no where near as good as it sounded, if im baking or trying to follow a recipe its easier when i havent got kids running in and out the kitchen stressing me out, but my eldest is in school full time and my youngest is at nursery in the mornings so i ave a bit more spare time to start baking, or preparing dinner ready to just cook or even precook it.
So will keep posted about how meds are working when i can got busy week and weekend ahead
thanks

start of 2nd week

I have a had lovely weekend with the family and friends, my ih has been behaving too so my headache hasnt been too bad.
I was saying all week that even if i only lost 1lb then thats ok at least its a start, well thats all i have lost and i feel very disappointed. i know its healthier to loose the weight slowly and i will be more likelt to keep it off so i suppose im heading in the right direction.
My exerciser is coming later today so i plan on doing 30 mins every other day on that, i have got some more dance games for the xbox kinect so will be doing some of that to, so hopefully will start to loose a bit more. because altho i walk alot it dont burn off many calouries.
I have not heard back from the emails i sent out last week yet so hope to hear something soon.
may not post much on here this week because its my little girls birthday party on the 17 april, which we booked room and entertainer for in feb and i thought i had loads of time left to send invites, sort food and outfits but blimey its come up so quick ive only got 2 weeks to go, so gona be busy this wk.  Have my mother in law coming to stay next wk which is gona lovely so need to organise the bedrooms to.
ok so for know good luck to everyone else on the challenge and will update u all soon

day 5

Got a better nights sleep last night with the help of nytol, so feel a bit better today.
Altho my stomach problems have flared up again, was on meds for inflamation of stomach lining but since ive finshed them ive constantly got heart burn and feel sick. So not really felt hungary or wanting to eat the last couple of days but i ave made my self eat, im hoping i ave lost at least a lb lol more would be good tho.
i have emailed some more people asking for help in raiseing awareness of iih and to promote our challenge so keeping fingers crossed with get some replies next wk.
im off to wheelgate park 2moro with my boyfriend and kids for a long over due family day out.

what a week lol

its been a good start, the publicity for the challenge and getting awareness of iih is going brill, its been on itv news, in papers and going in magazines
i had a interview and photographs done for my local news paper.
im being really good and eating healthy, been walking as much as possible to try burn some fat off, been feeling really tired this wk.

the challenge has started

today is the first day of the pounds 4 lbs challenge.
my weight today is 12 stone 4 lbs with bmi of 30,
i always use the machine in boots bacause it gives u a print out so it easy to keep track, it also tells me my ideal weight for my height, which i found very funny cos it said 8 stone 2lbs to 10 stone 3lbs.
well i dont think i will ever get down to 8 st 2, unless i chop myself in half lol,
so i going to aim to get down to 10 stone, i dont expect to get to that before the challenge ends on 28 november but im going to try and get as close to that as possible.
i have started today as i mean to go on, i have down sized my dinner portions (they were getting rather large lol) to a more normal amount, and i have cut out snacking in between meals.
i have also been busy contacting nottingham evening post and bbc news to get more publicity for our challenge and to raise awareness for iih,

from 2003 till now

Just to bring everything upto date, i was off all medication and sympton free for nearly 5 years, i had a few headaches in those years but lps showed pressure was ok. I thought i was cured of ih, the doctors had said it could just go away.
But in september 2008 i was getting headaches more often but just put it down to stress and having 2 young children.
I was admitted to hospital in october 08, i had kidney stones and pneumonia. my head was so painfull while in hospital but put it down to the lighting, but a week after i had been discharged from hospital my head was even worse, so i went to my gp and told him i needed refering back to neuro and fast.
So thats when my ih which i thought had gone, came back with a vengenace, so i was put back on meds till dec 09, then my eye doctor took me off them (the reason they did that is still unclear to me and my neuro). i was ok for a few months but then towards the end of 2010 my headaches were starting to come back, i know it was my pressure rising even tho my neuro thought it was stress, but i had an lp in jan this year and my pressure was up again, so back on medication.
that brings my story upto present day,

the begining

I was diagnosed with idiopathic intracranial hypertension in jan 2001.
i had woken up 1 morning in late october 1999 unable to move my head, i called the doctor out who said i had trapped a nerve. I was given pain medication and was told it be ok after a few days, well that was the start of my journey to a diagnosis.  I was constant pain with my neck and shoulders for the next 2 months, i went to my own gp and emergency doctors several times being told different things each time, its a trapped nerve, its muscle spasms, i had slept in a draught. I was given a variety of different pain meds and muscle relaxents but none would ease the pain. The only way i could get any releif from the pain was laying in a hot bath with the water upto my chin, i was doing this several times a day. I hardly ate because i was in so much pain.
By mid december 1999 i was starting to have problems with noises in my ears, doctors said it was an ear infection so i got more meds. The week before christmas things went from bad to worse, not only was i still in pain, had the strange noises in my ears but my sight was all strange, the only way to describe it is to imagine starring at the sun and only seeing shadows out of the brightness, so u guessed of to docs i went, all my gp did was check ears and tell me it was a reaction to the strong pain meds i was taking, so they gave me stronger 1s.
After over 2 months of pain i couldnt take anymore, my family didnt know how to help, so on new years day i phoned nhs direct, once i explained all my symptons they called an ambulance for me and i was rushed to hospital. The docs in a&e first thought i was drunk or on drugs because my pupils were fully dialated but after they looked closer into my eyes they called for a nerologist.
i was sent upto a ward where they did my first lumbar pucnture (lp), they thought i had meningitus, but once the needle was in place all i heard from the docs was "o so thats why you have been in so much pain" my pressure was through the roof.
Thats how i was finally diagnosed with iih, i had numerous lps (too many to remember) but wasnt helping my vision as the csf was building back up so quick.
i had an optic nerve fenistration on 1 eye to save my vision, altho i am left with impaired vision i got back more than the doctors expected, and was on meds uptil late 2003 (i think)
Idiopathic intracranial hypertension is a serious neurological disorder where the cerebrospinal fluid (csf) builds up within the skull, causing pressure which can lead to severe headaches, vision loss, blindness and alters your life, there is currently no cure for this. Treatments vary from meds to surgery.
Not many people have heard of this illness, and not many doctors know enough about it, that is why im doing this blog, i want to help raise awareness of iih,