Topic: I require LOTS of sleep.....what infection is this? What combo tooked yours away?
Hoosiers51
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Member # 15759
posted
So, I'm up at 11:35 today because someone knocked on my door for something, and I thought I had to get dressed to let them in (until they said, never mind), so the getting dressed, etc "woke" me up enough to be awake and not fall back asleep.
I have figured out that if I set my alarm any earlier than 12:30 in the afternoon, I will get up, turn it off, and go back to sleep without remembering it.
But if it goes off at 12:30, I can "will" myself out of bed, but it isn't easy.
I am in a daze for a long time afterwards. I can get on the computer and type, but I usually don't remember the first 3 or so hours of my day at all. Can't remember what I ate, who called me, what I typed on Lymenet (though obviously I CAN post on lymenet), etc.
Like, I literally don't remember what posts I started in the first few hours I'm up. I look back later that evening and see them and don't remember them.
This can't-get-up-before-12:30 thing is there, no matter what time i go to sleep. If I got to sleep at 11:30, midnight, or 2 AM...it's the same.
Who else has had these problems?
Can anyone say, "it's X coinfection, and Y drug made that go away for me."?
If you think it's adrenals, fine, I welcome adrenal suggestions, but I will just say that to me it seems like it's from some sort of specific infection that once treated, this will heal itself. I can just sort of "tell" this will heal itself, but I want to know what is "behind" it.
Because some lymies don't have this problem, so it has to be something specific causing it, and I just have a "gut" feeling it is an infection, because one day I didn't have this, and the next day I had lyme with this symptom. It WASN'T a slow progression AT ALL.
Make it go away! I need advice!
And stimulants like Provigil, etc are out of the question for this.....it's way beyond what a stimulant can help, i've tried them all. I will just be zombie during those hours and not be able to sleep at night to boot.
This is a really deep-seeded problem and if anyone can shed light, please do so! thanks.
PS----I meant "tons of sleep" in the sense that, I need it in one session. I can't take naps even though I'm tired.
So only looking for advice from people who have trouble coming out of their "one BIG sleep" they take, as opposed to people who sleep multiple times a day......because that isn't me, and I feel like this might be a different problem.
In other words, the problem isn't just "FATIGUE", though that is another problem unto itself!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I slept a LOT before I was diagnosed with hypothyroidism. Even with lots of sleep, I felt sleepy al the time and didn;t get good refreshing sleep when I did sleep. Meds helped that go away.
Getting Lyme disease made it all come back. I think the disease increased my need for thyroid hormone and I had to up my dosage.
With more meds (Armour thyroid) I sleep a normal amount now.
My advice is get a thyroid panel done.
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Hoosiers51
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posted
Thanks, I appreciate the suggestion.
I did indeed have a thyroid panel done. I think mine were a little off, but the medicines didn't help me much at all. I think I took T3 at one point and T4 at another point. Both times I took them it was for a decent amount of time. But I will keep it in mind.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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The Brain requires sleep to heal. While establishing some sort of routine and fitting in some enjoyable movement, if your body is telling you it needs more sleep, please listen to it.
Even for some who wake up after comas, there are experts who say the brain really needed to shut down in order to heal.
These sort of infections really damage the brain. Sleep can help repair cells, functions.
posted
Hoosier, I didn't know it, but I wasn't getting delta wave sleep for years. I slept my life away, and was still exhausted. My problem was a revved up CNS which kept my mind too "up" to get into the slow wave sleep.
There are medications that can help. If this is your problem, you need to find a good sleep expert, and probably have a sleep study done. It made a big difference in my health to get that deep sleep.
Dr. Cheney described the mind as a continuum where coma is on one end and seizure is at the other end. A normal brain is in the middle, and gets a little on the coma side during sleep--which is very healing.
Someone with a revved up CNS is slightly on the seizure side and, in sleep, doesn't get far enough into the coma side to sleep deep. It's called the alpha wave intrusion sleep disorder of FM.
I was diagnosed with CFS/FM before finding I had lyme. Enough deep, healing sleep made the tight facsia with it's tender points, called FM, go away for me. I now sleep 8-9 hours and don't need to nap.
Just another option to look into. Hope you find help.
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
daisys,
What exactly did you take or do for that problem that helped you?
I currently take Lunesta....is there something better to get deep sleep?
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Some of the prescription sleeping meds are pretty hard on the liver which can make it harder for a body to filter out toxins and then result in the CNS being too wired.
Magnesium won't do that. It is one thing highly suggested by Cheney to help settle down an over-excited CNS.
Magnesium will lower the NMDA over stimulation and allow the GABA calming action to take place.
You might first try up to 2,000 mg of magnesium citrate or glycinate - up to bowel tolerance - divided throughout the day.
B-complex vitamins by day and B-6 with the magnesium before bed.
Only the sedative herbs (Table 3) have limited capability to resolve fluids (fu- shen functions like hoelen to resolve moisture; polygala helps get rid of ...
Zizyphus refers to the seed of Zizyphus jujuba, var. spinosa, often labeled .... The liver- and heart-nourishing zizyphus seed, with its astringent quality ...
You can read more about those herbs above at this site - and maybe look up Gotu Kola (it is not a cola) to help you achieve a better state of wakefulness that will not be overpowering.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Devin,
I have the exact same problem. For me it isn't thyroid, I've had that worked up pretty well.
It is much better on days I feel good, but most days it is just as you described. What I hate most is the waking up fog and trying to get through that 3 hour peroid. It makes me not want to go to sleep at night because I know I am going to have to do that all over again.
I always think of it as my body just being exhausted from fighting the infections. Maybe that's too simple....I don't know.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I am on xyrem. It's a controlled substance, because it works so well, it's been used as a date rape drug. When it's processed in the brain, it looks exactly like a brain in deep wave sleep, so the body knows what to do--the end results are water and carbon dioxide, so the kidneys and liver are not involved in this, except there is sodium in the form called xyrem.
It works real well, but only for about 3-4 hours, so it needs to be taken twice a night. I wake up naturally when the first dose wears off, to take the 2nd one.
It has an alerting effect as it wears off, which used to keep me from getting a full 8 hours sleep, until klonopin was added to modify that effect. Now I sleep 8.5-9 hours a night, and my health improved dramatically on this regimen.
Now that I'm much better, I'm either lowering or cutting out entirely many meds and supps. Xyrem and klonopin both are being lowered together, and I hope to be able to sleep with an herbal concoction that Prohealth offers. We'll see.
I'm printing out information from Dr. Cheney that reassured me about taking klonopiin. My LLMD was happy to get that information too.
Dr. Paul Cheney Discusses the Benefits of Klonopin
by Carol Sieverling ImmuneSupport.com
10-12-2001
Editor's Note: The following is based on a recent interview conducted by Carol Sieverling with Dr. Paul R. Cheney, M.D., Ph.D., and the article "CFIDS Treatment: The Cheney Clinic's Strategic Approach" (CFIDS Chronicle, Spring 1995). Dr. Cheney gave permission to share this information, but has not reviewed or edited it.
Many CFIDS specialists prescribe the drug Klonopin. In the October 1999 issue of The Fibromyalgia Network, nine CFS/FM specialists summarized their most effective treatments, and six included Klonopin. Interestingly, the three who did not are primarily FM specialists.
Dr. Cheney prescribes Klonopin to address a condition associated with CFIDS called "excitatory neurotoxicity." To explain this condition to patients, he draws a line with "seizure" on the far left and "coma" on the far right. A big dot in the middle represents where healthy people are when awake. A dot somewhat to the right of the middle indicates where healthy people are when asleep - slightly shifted toward coma. He highlights in red the left portion of the line, from seizure to the middle, and labels it "Neurotoxic State" (damaging to the brain). He highlights in blue the right portion of the line, from coma to the middle, and labels it "Healing State."
In CFIDS, an ongoing injury to the brain shifts patients toward seizure. A dot to the left of the middle, marked "injury," represents the position of CFIDS patients. This puts us in the red "Neurotoxic" zone. When we shift toward seizure, we often experience "sensory overload." It's as if our brain's "radar" is too sensitive. Our neurons (nerve cells) are sensing stimuli and firing when they should not. This causes amplification of sensory input. Light, noise, motion and pain are all magnified. At the beginning of their illness, many patients report feeling exhausted, yet also strangely "wired." The "wired" feeling is the slight shift towards seizure that occurs as a result of the excitatory neurotoxicity.
Cheney frequently uses the term "threshold potential" when discussing excitatory neurotoxicity. (Think of the threshold - bottom - of a doorway. The lower it is, the more accessible it is. When it is at floor level, everything can enter. When it is raised, access is restricted to taller people. If it is too high, no one can enter.) Threshold potential refers to how much stimulus it takes to make neurons fire. If the threshold potential is too low, even slight stimulation is "allowed to enter" and is detected by the neurons. This causes the neurons to fire, resulting in sensory overload. If the threshold is dropped to nothing, all stimuli get through and the neurons fire continuously, resulting in a seizure. If the threshold is raised, only stronger stimuli can make neurons fire. A healthy person's threshold potential naturally rises at bedtime, promoting sleep. If the threshold potential is too high, you feel drugged or drowsy. If the threshold potential is raised extremely high, coma results.
Two receptors in the brain, NMDA and GABA, determine the threshold potential. During the waking hours of a healthy person, NMDA and GABA should be equally active. This balances the person in the middle of the seizure/coma continuum. NMDA stimulates, and GABA inhibits. If NMDA increases, one moves toward seizure. If GABA increases, one moves toward coma.
In CFIDS, NMDA is more activated than GABA, lowering the threshold potential. This causes neurons to fire with very little stimulation, resulting in sensory overload. This condition of excitatory neurotoxicity is dangerous. Dr. Cheney emphasizes that in an attempt to protect itself, the body will eventually kill neurons that fire excessively. He states that brain cell loss can result if this condition isn't addressed.
How can the brain be protected against excitatory neurotoxicity? Klonopin. This long acting benzodiazepine has been Dr. Cheney's most effective drug for CFIDS over the years. He believes that Klonopin and the supplement magnesium may be two of the most important treatments for CFIDS patients because of their neuroprotective qualities. He recommends two or more 0.5 mg tablets of Klonopin at night. Paradoxically, very small doses (usually a quarter to a half a tablet) in the morning and mid-afternoon improve cognitive function and energy. If the daytime dose is low enough, you'll experience greater clarity and think better. If the daytime dose is too high, you'll become drowsy. Adjust your dose for maximum benefit, taking as much as possible without drowsiness. Adjust the morning dose first, then take the same amount mid-afternoon if needed, then take three to four times the morning dose at bedtime. Dr. Cheney recommends doubling the dose during severe relapses.
Dr. Cheney most frequently prescribes the combination of Klonopin and Doxepin, along with the supplement "Magnesium Glycinate Forte." Magnesium Glycinate alone is a good choice for the more budget minded(www.ImmuneSupport.com sells it as "Magnesium Plus".) A common dosage of magnesium is 200 mgs at bedtime. Too much magnesium can cause diarrhea, though glycinate is usually the best tolerated form.
Cheney prescribes Doxepin in the form of a commercial elixir (10mg/ml). At low doses, this tricyclic antidepressant acts as a very potent antihistamine and immune modulator. Doxepin acts synergistically with Klonopin to assist sleep, and may improve pain. Patients tend to be very sensitive to Doxepin, which can cause morning fog and fatigue if the dose is too high (5 to 10 mg or higher). He recommends starting at two drops a night and gradually increasing the dose until "morning fog" becomes a problem. Most patients can't tolerate more than half a cc.
On a handout entitled "Neuroprotection via Threshold Potentials," Cheney lists six substances that can protect the brain. Under the category "NMDA Blockers" Cheney lists:
1. Parenteral magnesium and taurine (intramuscular injections of magnesium and taurine, usually given with procaine) 2. Histamine blockers (Doxepin Elixir) Under the category "GABA Agonists" (increases GABA) Cheney lists: 3. Klonopin 4. Neurontin 5. Kava Kava 6. Valerian Root
Klonopin is taken "day and night"; Neurontin "night, or day and night"; kava kava ``daytime only''; and valerian ``nighttime only.'' The first four are by prescription, the last two are herbs. In my limited experience, only certain patients are put on magnesium/taurine injections, and then only for a limited period before switching to oral supplements.
Many myths abound concerning Klonopin. When asked about these myths, Dr. Cheney shared the following information.
MYTH NUMBER ONE: THE GENERIC IS JUST AS GOOD.
When the generic Clonazepam came on the market, many patients switched to it because it was less expensive than Klonopin. Cheney then began hearing that most patients had to take more Clonazepam to get the same effect. Generics aren't exactly identical to the original products, and with most drugs the slight variations don't matter. However, most CFIDS patients can tell the difference between Klonopin and its generic form, Clonazepam. Most find Klonopin to be more effective.
MYTH NUMBER TWO: KLONOPIN IS ADDICTIVE.
Dr. Cheney was adamant that Klonopin is not addictive. In treating thousands of patients, he has never seen a patient become addicted to Klonopin. He reviewed the definition of addiction, stating that it involves: (1) psychosocial disruption, (2) accelerated use, (3) inappropriate use, and (4) drug seeking behavior.
Dr. Cheney said a case might be made that Klonopin is habituating. It's true that it can't be stopped suddenly. You must taper off of it gradually. However, he was cautious about even calling it habituating. The process of tapering off a drug is not the same thing as withdrawal, a term that implies addiction.
Dr. Cheney said to keep in mind that Klonopin is given for a physiological problem - excitatory neurotoxicity. It's prescribed to adjust the threshold potential: to keep neurons from firing inappropriately and being destroyed. He stressed that Klonopin should never be given unless you intend to raise the threshold potential. He stated, "Problems arise when you begin to use benzodiazapines for reasons other than threshold manipulation." However, CFIDS patients have a "threshold potential aberration" and need Klonopin (or something similar) to avoid brain injury. Dr. Cheney has never seen a recovered patient have difficulty coming off Klonopin. He stated, "When you no longer need the drug, coming off it is very easy."
On the other hand, trouble arises when someone who still has an injured brain tries to come off Klonopin. It's like a thyroid patient stopping their thyroid medication. Dr. Cheney warned, "All hell breaks loose". However, it's not because the drug is addicting, and it's not withdrawal. The condition still exists, and the body lets you know it has a legitimate physical need for the drug. Cheney stated, "When a CFIDS patient who is still experiencing the underlying mechanisms of brain injury goes off Klonopin, there is a burst of excess neural firing and cell death. That's the havoc we hear about that is mistakenly called withdrawal."
MYTH NUMBER THREE: KLONOPIN DISRUPTS STAGE 4 SLEEP.
Dr. Cheney said that he honestly doesn't understand this concern. He believes Klonopin might disrupt the sleep of people who take it for conditions other than the threshold potential aberration found in CFIDS. He also acknowledged that if you are looking just for drugs to facilitate sleep, Klonopin is certainly not the first one to come to mind, nor should it be used to induce sleep in "ordinary" patients. It's not a sleep drug per se. However, a large part of the sleep disorder of CFIDS is excitatory neurotoxicity and the resulting shift toward seizure. If you treat this condition with Klonopin, then you have treated a large part of the sleep disorder in CFIDS. Most importantly, he said he simply does not see stage 4 sleep disruption in his patients on Klonopin.
Towards the end of this discussion on Klonopin, Cheney smiled, and remarked, "But suppose I'm wrong about the brain injury and the threshold potential aberration and the shift toward seizure? What if I'm wrong about your need for Klonopin? I'm absolutely sure I'm right, but what's the worst case scenario? Do you know what long-term studies on Klonopin have shown? Reduced incidence of Alzheimer's Disease. Alzheimer's Disease is a complicated and convoluted way of knocking out your neurons, and Klonopin protects your neurons. Now it's believed that Klonopin didn't actually stop Alzheimer's. It just delayed its onset so long that everyone died of something else before they ever got it - which is to say you won't get Alzheimer's. You'll die of something else first."
The last question Cheney addressed concerned the dose: what happens if the dose is too high? He said the only down side was that if you took a little too much (we are not talking overdose here) it would shift you toward coma on the continuum. It would shut your brain down to some degree, and thus impact your ability to function. This is inconvenient, but it's not harmful. In fact, it shifts you into the "healing state" on the continuum. You may feel like a zombie, but your brain is protected and your neurons are not getting fried. However, not being able to function isn't an option for most of us, so we need to find the maximum dose that doesn't make us drowsy.
Dr. Cheney emphasized that Klonopin, Doxepin, and magnesium are very, very good at protecting the brain from cell death due to excess firing. However, they can't stop the underlying mechanisms of CFIDS that are injuring the brain in the first place.
Though it can't stop the underlying mechanisms causing the injury, Klonopin can protect your brain and keep your neurons from being destroyed. Then, as Cheney put it, "When you come out on the other side of this, you'll have more of your brain left."
Posts: 563 | From New Mexico, USA | Registered: May 2007
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Keebler
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Neuroprotective Herbs and Active Constituents: Approaches to Preventing Degenerative Diseases
-- by Subhuti Dharmananda, Ph.D.
==
And, at that site, you might enjoy a search of Salvia, and of Amber, two wonderful herbs for calming and protecting the brain. Salvia also helps with microcirculation. And skullcap's actions are very interesting, too, in regard to calming for a deep sleep.
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[ 21. October 2008, 05:35 PM: Message edited by: Keebler ]
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pamoisondelune
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I knew a doctor who slept a lot as a child, so much that she didn't go to school. It turned out to be because of allergies.
I slept a lot when i was on Tetracycline in the early monhts of lyme treatment. I slept 16-18 hours a day. I assume my body just needed sleep to get rid of toxins from herxes.
---from pamois.
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pamoisondelune
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PS Finally i discovered herbals which remove the toxins so i didn't have to sleep excessively.
There are a lot of detox herbs and supplements.
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Hoosiers51
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Is there anything you used specifically that you could recommend? I am needing ideas! Thanks.
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pamoisondelune
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What are you already taking for detox? People on abx feel a LOT better with detox!
Many people on lymenet have posted about detox; most i haven't tried, like charcoal. Everyone says lemon juice.
Polygonum cuspidatum is a core Buhner herb that people say removes a lot of junk. I have Buhner's book but forget what he says specifically. One way to obtain it is in Source Naturals Resveratrol pills. Read the label to be sure; it should say 1 gram of Polygonum cuspidatum, (also called Japanese Knotweed)(per serving which is 2 pills). Lesser amounts in different brands are not Buhner's recommended dose. I take 4 pills , 3x per day,= 2000 mg per dose, times 3. Buhner says it's a very easy herb to take; he says you can take it every 10 minutes if necessary.
Buhner uses Sarsaparilla for detox, also called Smilax. I take one pill a day. Cowden i think uses Burbur for detox, from what i've seen on posts.
Proteolytic enzymes do a terrific job , for me. When i had more symptoms to notice, the proteolytic enzymes would give me 8-12 hours of head relief. Serrapeptase is one kind of these enzymes. I currently take serrapeptase twice a day on an empty stomach,or actually with an empty-stomach antibiotic. Some people on this forum take proteolytic enzymes twice a day prescribed by their LLMD.
I've heard that Rhodiola protects the brain from herx toxins like quinolinic acid i think someone said. I take Rhodiola.
So i don't know if that's the source of your problem, but people on abx should probably be on detox as far as i know; it makes life a lot more normal.
Good Luck, from pamois.
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pamoisondelune
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PS The Polygonum cuspidatum, 1 gram, may now be in the Source Naturals Red Wine Extract pills as well as or instead of in the Resveratrol pills.
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Keebler
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posted
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pamoisondelune
- great stuff. Thanks for the details.
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