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Otreotide

keeley86

keeley86

Well-Known Member
Hi keeley....hope all is well hun...can i be cheeky and ask what you take it for??
 
Aww I'm sorry to hear you have started on this Keeley, but hope it makes you feel much better... God Bless.
Love and hugs xx
 
Wow, what an amazing story ! Hope it works as well for you Keeley ! xxx

And Bev... the kettle's on love, Von & I have had a cuppa and were wondering where everyone else was ! xxx
 
I'm laying the table for everyone for breakfast... 'weetabix soup' for me and how I wish I could go to the gym with you Rose, a few years ago I would have done for sure... I'm limited now with the advancing spondylitis... but have a wonderful time.

Who's having green tea with me?

It's either Yorkshire Tea or Twinings Green on the boil.

Love and hugs xxx
 
i take it for the same reasons this girl did - infact her story is the exact same as mine!
i have IH = Intracranial Hypertension. it too much spinal fluid inside me which is putting pressure on my brain/disks behind my eyes causeing me to go blind, doctors say loosing weight is the cure which is why im waiting for a gastric bypass.
i came across this drugs myself on the internet(doctors never told me) they made me believe i was out of options as all other treatments have been unsucessfull.
so i told my doctor about it and they said i couldnt have it at first because its unliscenced in the uk for what i want it for and the nhs may not agree to pay for it but ive faught to get it because at the end of the day its worth a try and its a damn lot cheaper than surgery surely. so i started it yesterday.

its making me have abit of diarea and feel sick all the time so far but i think its a common side effect, im just hoping it calms down as i get used to it.

heres a video about it...

http://www.youtube.com/watch?v=p3Nlqg9BzPo
 
Hi Keeley,

Goodness me, I felt very moved by this video... so much so that I'm copying and pasting it on our coffee thread, so no one misses it and we can be there to support you more knowledgeably with this illness.

I wonder if there is an aggravator e.g., stress?

Please rest and take your time with everything love you have a lot going on with this illness and it can make you feel so unwell can't it....

If you think there is anything we can do to help in any way Keeley, just say.

Sending a humungous hug and every good wish for this dreadful illness and hoping for relief for you very soon.

Have they said the wls will assist you with this illness Angel?

Love and hugs xxx
 
Hey Keeley,

I hope this works for you and these sideaffects will subside soon.

Will you also be having your WLS?

Hope you and those puppies doing orite :)

Jo xx
 
Jo don't forget we are always around on the coffee thread and the kettle is always on... if you ever want us love xxx
 
Hi Keeley, an amazing story and brilliant that you have managed to get the drug as well. Hope you feel a bit better now as you have enough on your plate without feeling sick etc.
take care,
 
Please watch this...

Please also watch this video... have a box of tissues handy though, as it really brings home the reality of this awful condition. I can't bear the thought of our Keeley going through this...

http://www.youtube.com/watch?v=8tf5V...eature=related
 
It's a horrendous condition to live with and I'm pleased that Keeley has raised the illness for us to explore... so we can understand and support...

Given all you have to deal with Keeley... you deserve a pat on the back for doing what you do, plus going to the caravan and everything else you are involved with, it's a debilitating and depressing condition by all accounts... you do remarkably well to remain so cheerful and vibrant about life.

Love and hugs xxx
 
Good for you Keeley I hope the new drug makes things a lot easier for you :D Hopefully your surgery wont be too much longer either :D XX
 
awwww thanks everyone! im filling up here! thanks for your support!
id not seen that vid b4 rose, thanks! - theres a few on you tube about it, luckily what i have is benighn intracranial hypertension - theres people out there that have what ive got that is also cancerous - so i have something to be thankfull for!
ive been through all that - ive had no end of lumber punctures infact ive had that many they had to stop doing them in fear that any more could leave me paralysed - ive allready got curviture of the spine!
theres 2 main drugs that they use to treat it and thats acetazalomide also known as diamox or tapamax and im intoloerant to them both so for the last couple of months ive been left untreated!
my doctor has been talking me into having the vp shunt that charlotte was talking about in the 1st video but if you look that up on the internet it seems more hassle than its worth - ppl that have had this shunt 9 times out of 10 end up back in hospital because its blocked - it even got rapped round one girls heart so ive been telling him i dont want this shunt - if its my very last chance of saving my eyes i will have it but while theres options untried im not having it and that whats lead me down the line of fighting for this octreotide!
people who see me wouldnt think theres much wrong untill you see me have a dizzy spell or with sun glasses on the whole time because the outside light is too bright for my eyes! i think ive learned to live with the head aches - some days there worse than others and i cant get out of bed with them - i even ended up back in hospital once because my head hurt that much!

i will still be having my wls even if this drugs cures it in 6 months time because the doctors say is most common in young obese girls, its a rare desease but the ppl whom do have it are mostly overweight so they are putting it down to my weight.

im so glad ive got the chance to try this octreotide... theres a few out there that havent got this chance, i just hope it works coz the VP Shunt scares me!
funny isnt it - im excited about my bypass and im not scared 1 bit.. im looking forward to it - but talk about a shunt and im kakin my pants, honestly!

check me out... i can go on forever!

seem a little better now with the sickness so hopefully its just because its new to me and my body will get used to it! tell you something tho.....ive not had the ringing in my ears today, maybe thats a good sign? only time will tell!

thanks to you all for your continued support!

luv ya lots like jelly tots!
 
You are doing really well with it Keeley and have your head around it. Develop a technique for the injections, I did with the insulin and knowing you feel better makes it worthwhile taking it.

We wanted to have an indepth understanding of what you are enduring love and we've all learned a lot today.

I'm so glad you have taken your time with the shunt too.. I've been looking around at other cases and not everyone has felt the benefit.

So let's keep hopeful, optimisitic and grasp this treatment with the downside of injecting, but at least it's getting straight into your system, you'll do it love.

We'll be there if you need us and keep plodding on with it.

Love and hugs xxx
 
keeley86 said:
Charlotte Durham beats rare brain condition after father finds cure on the internet | Mail Online

this is the drug ive started today! :D i feel very lucky actually that i dint have to go what this girls been through to get it x
its been prooven to work in the uk so why dont they just research it and liscence it once and for all instead of making people have shunts????

im just hoping it works for me, my tummy feels strange though and thats where the nurse injected it x
Click to expand...

OMG :eek:, I have suffered from BIH for about 20 years on and off, i never knew there was a drug available. I was first diagnosed in my twenties when i kept going blind in one eye but it took them a long time to diagnose, took them 6 months to get me to the eye infirmary where a switched on doctor saw the pressure and thought it could be a brain tumour. Scary times! I had an emergency appt and luckily, i was diagnosed with BIH - treatable :rolleyes:
I am lucky in that a series of lumbar punctures usually settles mine down for a few years but my pressure was in the 30s when first diagnosed.They did discuss a shunt after my 2nd hospital stay but i just kept out of their way for another 8 years or so ;)

Interested in how the drug works for you, hope it does the trick, let us know. Fingers crossed
 
to be honest im not exactly sure how this drug works it is liscenced in this country to treat a hormone inbalance or something but it is mentioned on the ihresearchfoundation website - if you look the drug up - studies in greece show it works - they tested it on 26 people with IH and within 6 months it cured 24 of them - so with them figures i emailed my consultant physician and things went from there!

i found out i had it when i went to the opticians for a check up 2 n half years ago and my disks was blurred so they sent me straight to the hospital that day! ive never been the same since, lol and ive struggled with it since too.

i wish mine would settle down after a few lumber punctures - i was having one every 2 weeks at one point - give it a day or 2 after a lumber puncture and the pressure would be back up again - 38..... its been in its 40s at the highest before!
im glad ive posted this video now..... people need to know about this drug - the more ppl asking for it then they might finally get it lisenced in the uk for treating IH!
im not sure if my doctor at the hospital new about it or not but no one ever mentioned it to me and if it works it should be used to treat people now rather than letting them go through a vp shunt
 
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