Steff1573
Senior Member
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I Love YaBB 2!
Posts: 200
Montana
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still continuing to go through this...
It is awful dealing with this.. I wish I understood, wish I had an answer. I take the sleep medicine and STILL can't sleep but a couple hours? I take 30 mg Restoril 30 minutes before bedtime as well as 2mg of xanax and still I don't sleep but maybe 3 hrs? This has been going on for 26 months now. I know Sporadic Fatal Insomnia is RARE, but I have heard of some living up to 36 months. I follow good sleep hygiene, give myself plenty of time to relax in the evenings, have been wearing earplugs for over 2 years now to drown out any sounds... Still I go through this and I am worried.
Dr's can't figure out what is wrong. I have seen counselors, psychiatrist, neurologist and they are puzzled. Keep saying its the "Temporal Lobe Eplilespy" which I take 750 mg of Keppra 3 times a day for.
My reflexes are jumpy, I feel like I have a hard time remembering certain things, I have tried many medications for anxiety, depression, etc and it has no effect on my brain. I feel no different and I have no side effects of drowsiness when I did take them in the past.
Now this has been going on for a long time.... I know I am worried, who wouldn't be? Something is wrong and I know it..... I pray everyday I get better for the sake of my children and husband and myself.
I know everyone says Sporadic Fatal Insomnia is rare, but why suddenly over 2 yrs ago would I not be able to sleep? No known reason it just happened. Previous to that I had problems falling asleep and it would take over an hr and then it just got worse and worse.
I am still losing weight even though I am eating. I wake up at 2:00 am (after taking sleep meds) and then I lay there or get up and use the bathroom and can't sleep anymore. I then get up and everyday my heart pounds, I sweat a lot, my pulse is always high, etc. Sounds like anxiety but I take anxiety medication...
I take 1 mg at 8 am, 1 mg at 12pm, 1 mg at 4 pm and 1 mg at 9:30 pm along with the Temazapam 30mg as per my Psychiatrist and STILL I can't sleep that much?
I feel whatever this is, is getting worse. I certainly don't want to have a rare disease of any sort. I just Pray I get better....
Thanks RLR.. Please Pray for me..
And for all others who will say this is anxiety, etc please do not. This has been hell to go through. I am doing everything I can to get better. I do not like this at all and just keep praying and having faith I will get better.
Thanks.
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