Any Others In Uk?

Hi
I have been researching everything I possibly can on the subject of Idiopathic Hypersomniia and came across this site. My son has been diagnosed with this extremely disabling condition about a year and a half ago. He had Epstein Barr Virus and then another illness which seemed to trigger a whole load of other symptoms including sleeping around the clock! He was originally told it was depression but I didn't think it was the real problem. I have fought long and hard to get him sorted. I can't believe how difficult it has been! He is now under Papworth and takes 800 mg of modafinil although this merely takes the edge off his deep sleeping. I am so very proud of him, he battles on with his uni course and rarely ever complains even though he suffers with one of the worst conditions I know! I so wish there was better hospital and GP care but they are not very knowledgeable or understanding! I would like to do something to raise awareness and support other families going through the same experience! Not sure how but going to try!
Good luck to all who have to cope with this dreadful illness!
Dx

My dearest friend has not been properly diagnosed but I am sure he has IH. He is 59 and his health is deteriorating. He is both depressed and has this sleeping illness where he never feels refreshed. What do we do? I live in another country but want to help him. His doctor doesn't seem to know what to do. I don't understand? Do you have any advice? Anybody?

Hi I live in the UK ,nice too know you all do as well :-) as I also know no others until now.nice too meet you all at long last.I have had i.h for 29 yrs and have been on meds 2 yrs now x

I have Idopathic Hypersomnia too. I live in the UK and I too know of no-one with it. I am 42 and have had it for about 6 years.

I was referred to a Nerulogist who sent me to St Thomas's in London. I had an over night stay and lots of tests. I am on 300mg of Modafinil twice a day and was discharged by the Nerologist soon after diagnoses.

I know exactly how you feel. I had suffered with depression for many years and still take medication for that along side my IH meds.

I dont even have a Doctor to talk too about the way I feel as G.P's don't seem to know much.

I often feel sick along with being tired and disorientated. I am forgetful and even forget what I am talking about in mid sentance.

Hi all.



I've been on the modavinol for about 6 month. Before that I was falling asleep at the wheel. Had to pull over for ten minutes on the way to work. With medication I'm still able to work three days a week and sleep on the other four. I have constant migraines and nausea but its a trade off between having some help and sleeping all day everyday. Some days I was getting up for two hours every 24hrs. Medication also stopped that weird zombie feeling. I wouldn't know if I was awake or asleep. Have noticed terrible impact on my memory.

totally get that ysabet people dont realise because they just think it's being tired when it's more than that it's horrible.anyway i started the modafinil i have had all of the side effects so far arrhh stomach upset shaking sweating ect ect the thing is although i'm awake (also at night as well now) i feel physically drained so although my eyes cant shut and my brain is awake my body is saying sit down and rest it's making all my muscles ache and even though i'm abit more alert i wouldn't say it is helping the ADD symptoms one bit.also might i add the crash from the tablets is not a very nice experience i feel like i'm going cold turkey when im coming down from them but not sleepy just shivery shaky and stomach pains i dont know what to do i'm worried if i complain to the dr/psychologist who i only see once every 4 wk he'll stop them and leave me without anything at all.@labeep how's thing's going on the dex? i'm intrested to see what work's without the side effects i am experiencing. how long did you try the modafinil for?

Hi, I'm new to the UK - moved here July 2011 with my husband. I was diagnosed Feb 2011, but I'm yet to find a specialist who really understands my condition over here.



My only long standing friends are in GMT 10, as are all my family. I wake up tired, go to sleep tireder. Except when I can't sleep because the depression from being like this has triggered my anxiety which gives me insomnia. I walk around my house in a fog (when I'm not lying down). In a good week, I'll leave the house once, but I've gone 2 months without doing so sometimes.



I feel like a cripple. Like my existence is invalidated by this condition. Like a waste of space and oxygen, because the best I can do with my day is play videogames, or reread old books again. It takes days - sometimes weeks - to make a phonecall.



It was worse before medication; then I just spent most of the time unconscious (I logged about 20hrs a day asleep for most of a year).



This sucks. And what's worse is you tell people about it and they say 'Oh, I wish I could just sleep whenever I wanted'. I HATE that. So much.

I tried modafinil. Lasted two weeks. Got humongous headaches, on dexamphetamine now. Hope you get sorted x

yes i live in the uk i have idiopathic Hypersomnia resentley diagnosed awaiting treatment,i am also diagnosed with AD(H)D innatentive subtype,not sure if this mean's i have both or not as the symptoms overlap.I don't know if the hypersomnia is a co-morbid condition that can exist because of the adhd being untreated for many years.or it's the hypersomnia causing the adhd like symptoms.I have to go for an ecg because there hoping to start me on modafinil (provigil) which i know can be helpful for both conditions.i think the hypersomnia causes depression not the other way round in my opinion not being able to function normally always late as u can't fight that daytime nap.and the worse thing for me is feeling drunk or drugged when u wake up i have actually taken my children to school whilst asleep.woke up and actually panicked they wasn't in the house.you're not alone just don't think many people share that they have it just suffer in silent's.