Since recovering from my first lyme infection, I have been on ProVigil for excessive daytime sleepiness (eds) or as some call it, Idiopathic Hypersomnia.
I, now, have Lyme a second time and the problem is worse.
ProVigil and caffeine are anywhere from marginally effective to helpful.
I just had a night & day sleep study, back to back and am anxiously awaiting the results.
Has anyone else had Lyme cause/exacerbate a sleep/wake disorder?
IH is sort of like walking around all the time sleep deprived, no matter how much one sleeps.
I know, lyme causes fatigue, so this is really adding fat to the fire!
Posted by Keebler (Member # 12673) on :
- For a lyme patient, the term "Idiopathic Hypersomnia" sort of drops off as idiopathic means without explanation. We KNOW why it happens with lyme. Hypersomnia is not a diagnosis really, but a symptom - a result of brain infection.
Lyme encephalopathy causes the daytime brain waves to be slower, in the theta zone, which is the the zone just before sleep. A QEEG (brain mapping) will tell you more but it's very common with lyme.
Treating infection is the number one priority. Really, not much will help the brain wake up (it's actually protecting itself by running on low energy) until the infection is adequately managed.
Of some help: Tai Chi, or Qi Gong . . . gives your body something to do so the brain has to focus. It's a brain training in many ways and helps the body surprisingly well.
Meditation can be tricky if the brain waves are already slow. Usually, for normal people meditation is to take them down from a hyped to a more relaxed state. So, if the brain is already running slow, I find it nearly impossible to meditate - but also due to distractions that are seriously sensitive for lyme patients.
The music of MOZART (and Hayden) have a more pronounced effect on the brain than any other composer(s) of all time. The book "The Mozart Effect" (Don Campbell). Also look up the work of French researcher, Dr. Alfred A. Tomatis in his 1991 book Pourquoi Mozart?
Learning, or playing, a musical instrument helps the brain wake up, too.
The brain may need more nutrition, too. B-vitamins, fish oil, curcumin, and other antioxidants are helpful.
Adrenal support can help along the way, though. Addressing matters of toxicity and liver support are key, too.
Neurofeedback can help, to a degree, but it's best to wait until infection has been addressed. I bombed 3 QEEGs and did a couple years of weekly neurofeedback. It helped very little since I was never able to adequately treat infection (just trying to figure that out on my own with no LLMD access).
I had a night & day sleep study and they were useless as they did not KNOW how to interpret, they used machines that did not capture what was going on and basically determined me to be nuts because noise kept me awake. Lyme really changes EVERYTHING. Those who are not lyme literate simply are at a loss and send us around in circles.
A QEEG was MUCH more helpful, in diagnostic terms.
But my experience - and just understanding that this is how it is with lyme - can save you from the stress of that (it's hard to find a good QEEG and it's usually not covered by insurance).
You might read about what a QEEG does as that teaches us a lot about the brain but, mostly, treating infection should be our main focus.
More about that and how a QEEG can show you how your brain waves are working when you try to read, write, do math, etc.:
The Complexities of Lyme Disease - A Microbiology Tutorial
- by Thomas M. Grier M.Sc. -
Posted by Keebler (Member # 12673) on :
- Hypoperfusion (decreased blood flow in the brain) can also cause the brain to be sleepy. Hypoperfusion is very common with lyme but, again, improves with treatment. It's unfortunate that the very thing we grab onto - caffeine - makes hypoperfusion worse, as it's a diuretic and decreases needed blood volume in the brain. Caffeine is also very hard on the adrenals and that actually makes the brain more tired from the short bursts with the follow-up drop.
More about Hypoperfusion - and some support measures for energy - in this thread. -----------------------
Topic: To everyone with cardiac symptoms please read ! -
Posted by Keebler (Member # 12673) on :
- As many (if not most) sleep Rx are very hard on the liver or kidneys - and that toxicity adds to brain fog - you may find some new suggestions here. Adrenal support is also discussed: -------
THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTION . . . - 20 pages
Anura V. Kurpad - Institute of Population Health & Clinical Research, Bangalore, India 129. Indian J Med Res 124, August 2006, pp 129-148.
Excerpt:
" . . . In general, the amount of EXTRA protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . ."
- Full article at link (or google the title if it does not go through). -