Anyone else diagnosed with Hypersomnia?

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unwillinghostess
Regular Member


Date Joined Jan 2008
Total Posts : 63
   Posted 3/13/2010 9:55 PM (GMT -7)   
I didn't have any sleep problems until I contracted Lyme nearly 4 years ago. Now I have excessive daytime sleepiness despite 10-12 hours of sleep. I get sleep attacks at the worst of times.  It's such a struggle to do anything as I live in this sleep-like state. I was diagnosed with Neurological Hypersomnia and have tried Provigil, Ritalin, and now Adderral. None have been very beneficial. Anyone else going through this?

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 3/13/2010 10:27 PM (GMT -7)   
Didn't sleep for 10-days straight when very ill with lyme this past summer. Spent a week in the hospital recovering.

Do you have any problems with sleep apnea? Do you still have other ongoing lyme symptoms after 4 years?

Gary

unwillinghostess
Regular Member


Date Joined Jan 2008
Total Posts : 63
   Posted 3/13/2010 10:53 PM (GMT -7)   
I had a sleep study done and it showed that my brain can't maintain a regular asleep cycle or an awake cycle. So I'm unconciously awakening all during the night the night and my brain is telling itself to sleep all during the day. I'm seeing a sleep specialist and he says it's neurological and I will most likely have this the rest of my life. He says the condition is severe and the prognosis is poor. OI'm wondering though that if I can kill off all the Lyme in the CNS if the condition will resolve.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 3/14/2010 3:05 PM (GMT -7)   
I have a lot of problems with normal sleep/wake cycle...can't sleep at night, can't stay awake certain times of the day but it is different from week to week. My doctor did a mini-sleep study on me and we discovered that I seem to wake up a lot and my oxygen level drops frequently. Not enough for a sleep apnea diagnosis, but enough to really disrupt my sleep. So now I'm on oxygen through a nasal cannula and I sleep so much better. I'm still tired all day, but at least I can stay awake a little better when I use the oxygen at night.

Gary, I had a stretch of about 3 weeks where I only slept for a second or two once in a while...this was when I was a teenager. It was really strange. The only way I could get to sleep finally was to sleep with the sheet pulled over my head! It was so strange! I'm sure it was the Lyme messing with my nerves, but I didn't have a clue about Lyme in those days.
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


unwillinghostess
Regular Member


Date Joined Jan 2008
Total Posts : 63
   Posted 3/14/2010 3:15 PM (GMT -7)   
Wikipedia-Hypersomnia is a disorder characterized by excessive amounts of sleepiness. Those who suffer from hypersomnia have recurring episodes of excessive daytime sleepiness (EDS) which is different from feeling tired due to lack of or interrupted sleep at night. They are compelled to nap repeatedly during the day, often at inappropriate times such as at work, during a meal, or in conversation. These daytime naps usually provide no relief from symptoms.

Patients with hypersomnia also often experience prolonged sleep at night and have difficulty waking from long sleep, feeling disoriented upon doing so. Other symptoms may include anxiety, increased irritation, decreased energy, restlessness, slow thinking, slow speech, loss of appetite, hallucinations, and memory difficulty. Some patients lose the ability to function in family, social, occupational or other settings. (...) Typically, hypersomnia is first recognized in adolescence or young adulthood. These symptoms are present in both types of hypersomnia. A sufferer from primary hypersomnia displays these symptoms continually for months or even years. Recurrent hypersomnia is characterized by recurring periods of symptoms many times throughout the year mixed with periods of normal sleep-wake cycles. Kleine-Levin syndrome is the most well-known form of recurrent hypersomnia, though it is very rare, these people often sleep up to eighteen hours a day and yet do not feel refreshed upon waking.
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