It's been a year ago since I had a sleep study test done. I was told I had hypersomnia. If any of you experience this, then you know what kind of misery I am talking about.
I started doing some research and found a doctor who did a study on ppl w/hypersomnia.
He found all the patients had excessive amounts of GABBA in their spinal fluid that caused a "sleeping pill" effect.
Bingo, that's me...I feel like I'm sedated when I look awake. All your brain says is... go to sleep...
The doc who did the clinical trail found a drug that was very helpful. Can't spell it but it is used for people who have ODed on valium or heroin
Just wondering if any of you have been dx w/hypersomnia and what has helped you.
Thanks Posted by GretaM (Member # 40917) on :
Lee-is it low dose naltrexone?
Posted by Leeintn (Member # 25999) on :
Hi Greta... I wrote it down so here it is....Flumazenil
Not sure if the drug has been approved for hypersomnia or if it is still in testing.
Never thought I would feel like a valium junkie..haha
Do you have hypersomnia?
Posted by Keebler (Member # 12673) on :
- Don't try to wake up your brain. Seriously. It took me a very long to time to see that the harder I pushed, the worse it was for my brain.
I strongly suggest that you NOT try to take any drug to wake up your brain.
Certainly, do not let them do a lumbar puncture (spinal tap) to measure your GABA. Just say "no" to any such test.
If you have a LL doctor, be sure to discuss this with them. It's so typical of lyme & co. So very, very typical.
I tend to think the sleepy brain is not the problem but a symptom of a more complex issue.
Even the doctor who connects GABA is short sighted. It's so much more complex than that. For most with lyme, this is a major issue until lyme, other infections are under control.
With that, support for liver & adrenals is essential. The brain cannot be alert if the liver is overwhelmed or adrenals are stressed. It's just not possible.
GLUTEN? Are you gluten-free? If not, that IS one thing that can certainly easily help your brain to possibly be more awake. Most LL doctors suggest those with lyme are to be gluten-free for excellent reasons, brain alertness is just a nice benefit from that.
SLEEP - REST
While this can be like nailing jell-o to the wall, your brain may be telling you that it really needs more rest & sleep time. Forget our wishes and the normal number of hours, if your brain is tired, let it rest.
Of course, with your LL doctors, figure out what all needs to be done but as for that hour to hour functioning, listen to your body. If your brain is sleepy, let it rest.
Practically, I know this is not always possible. But, just in matter of what your brain NEEDS . . . . it's telling you.
When there is infection, the body needs more rest. No matter how long that all goes on. Hope you have a good LL doctor who can help you figure out a plan out of this, though.
I would steer far away from any doctor (whether MD or ND) who is not ILADS educated and completely, thoroughly and completely lyme / TBD literate. Lyme / TBD changes so much about every system and function of the body. -
Posted by Keebler (Member # 12673) on :
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posted by Keebler (Member # 12673) on :
- Nutrients. Getting enough protein and fat? That is key, along with antioxidants in your carbohydrate choices - bright, dark colors, whole foods from the earth.
EXERCISE INTOLERANCE is (partially) explained in the article: "when exercise doesn't work out" (and what we can do about that)
ADRENAL, CARDIAC, MITOCHONDRIA & MYELIN SUPPORT - that all helps movement better work for us
Styles discussed: Pilates; Qi Gong; Tai Chi; Yoga; water; strolling; etc. -
Posted by Leeintn (Member # 25999) on :
Keebler, Thanks for all the info and links... After 5 years of this, you get desperate and will try anything.
I am GF..have been for about 2 yrs...I'm sure it's not 100 % but I very aware of it.
I decided to go grain free about two months ago...If I don't die from lyme...I'll die from starvation ...lol
The drug for hypersomnia was only used in a clinical trail. I'm a chicken when it comes to needles so I don't think I will be having a spinal tap anytime soon
I've decided to get a Food sensitivity test so I can not be so paranoid about what I can and cannot eat...it's frustrating
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