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Myalgic Encephalomyelitis Community
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Newbie here.Why am I so sleepy?

I have had ? ME ? Addisons? POTS ? anything you want to insert here!! for a few years now although the Drs I have seen cannot seem to decide what is wrong with me! I have seen every field of specialism there is. I am waiting to see a ME specialist in the new year although I have been waiting 6 months already! The problem is I keep falling asleep in certain situations.My body starts twitching something terrible and I get kind of a 'spaced' feeling although I am fully aware where I am etc.If I'm trying to type or use the mouse my hands just jerk with no control, they have a mind of their own.

I can nod off 3 or 4 times especially when at my computer, in a meeting or at home watching TV or even talking to people.There is no way on earth I can stay awake I feel that ill and I awake totally confused then drop off again then wake etc.

Its driving me mad and causing problems at work as you can imagine.People have to keep kicking me to wake me up or nudging me (although I do not remember this or feel anything)

My Background.

I have been on the same medication now for years so there is nothing new there. I take Lyrica, Clonidine, Celecoxib, Bueprenorphine, Fludrocortisone, Venlefaxine.

As I said I am under investigation as 3 years ago i suddenly collapsed with fatigue,dizziness,very low BP and Vit D level of 8. The fatigue lasted about a month and I couldn't even lift my head off the pillow I was that weak. I had these episodes roughly every 3 months for 2 years but now they are a lot less frequent unless I go on a long trip or exercise since taking Fludrocortisone.I also have a heart device implanted to record any symptoms I have as a couple of ECG's show Bradycardia I have a family history of HOCM. I have had CT scans,MRI, every blood test known to man, ECG, ECHO.These were for my fatigue though, not for this .Its a waste of time going to my GP.She is useless! No one had even mentioned ME until my previous meticulously went through my medical history, notes etc and though that is what the problem is.Although i have told my other doctors this they refuse to consider it and dismiss it as an illness that doesn't really exist.I have had to fight to get this appointment with thee MR specialist after going round in circles for 3 years.

Does anyone know what is happening to me or what could be the cause of this? I am so desperate and I am worried about my job.I understand the fact there are side effects from medication etc but mine hasn't changed for at least 12 months if not later.I have no social life, my confidence and enthusiasm is shot.

Thank you for anyone who takes the time to read this or who very kindly answers me.I'm not one for writing on forums but everyone seems so nice and friendly and doing all they can to help others.

4 Replies

Hi Daisycav1, I fully understand what you mean about GPs. I saw a handful at my surgery and went for every test under the sun until I saw a elder more experienced GP who actually listened to what I told him . I hope you can get a diagnosis soon. Some of my symptoms where similar to yours, particularly the falling asleep but my ME hit a low when I suffered a infection following surgery for my osteoporosis and never really picked up again.

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Thankyou for your reply 😀I’m sorry you went through such a rough time.Its tough trying to get a diagnosis.Can I ask if you were diagnosed with ME prior to this or after and if it was the ME that caused it.Thankyou

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Hi, I had been having various tests for long before the operation as I kept telling my doctor's I didn't feel well and all the varying symptoms. I was actually diagnosed with ME after the operation and according to the GP it was the infection that triggered the ME to deteriorate to a level where I am now unable to work and get worn out very quickly.

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I hope your ME specialist appointment is helpful. Diagnosing should be only done after lots of exclusionary tests to rule out other health problems, thyroid, eds, lymes etc.

Have you seen a sleep specialist at all to eliminate sleep disorders?

Have you tried strict pacing and does it make any difference?

Do you experience Post Exertional Malaise?

I hope you are able to find the answer.

I was properly diagnosed only after having the condition for 20 years. As soon as I read the symptom list I was pretty sure. It coming on right after a severe virus both initially (glandular fever) and on my big deterioration (suspected viral meningitis) and diagnosis made it clearer too I guess. The ME associations website is pretty good.

I'm under investigation for POTS now I am worse and already have Endo. But I do wonder if it is all just a different aspect of the same thing.

Good luck xx


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