cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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sutherngrl
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I deleted my other post.
Why are you taking trazodone in the middle of the day? Are you trying to go to sleep?
I just looked up restoril. I don't see why it would be hard to stop taking it. I was on Ambien for sleep and just stopped taking it cold turykey and never even noticed any side effects. I actually slept just as well without it.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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yes, i wanted to take a nap, also i wanted to see if i get a bad reaction from the half that the took,
when i first took the whole 50mg, it mess me up big time, and i did not fall asleep from it, so i knew taking the half would not put me to sleep,
BUT i knew i had a BAD reaction from the 50mg dose, so if i took the half now, instead of tonight, which it will not put me to sleep anyways..
the half that i took this afternoon, by night time when it is time for me to sleep, the half will be out of my system, and i will be able to take the restoril and get some sleep, that is why i took the half this afternoon to see how my body would react to it.
its going on 5pm, and the half of the pill has not done any thing to me, i dont feel DRUNK, i am not heavy in the eyes, and my head is not heavy,
i did wish i has fallen asleep thou, but i didnt and it didnt affected me one way or the other..
Tracy9
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I'm confused; if the Restoril is working, why stop it? I take Restoril every night. If I miss a night I don't have any problems either like withdrawal.
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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I think it is really important to keep your body in a healthy wake-sleep cycle. I would not suggest taking the trazodone in the daytime, even at half dosage.
Some people have an extremely difficult time getting off benzodiazepines, which would include similar drugs like Ambien, Restoril/Temazepam, Lunesta, etc. You should not stop taking these drugs cold-turkey. Stopping them cold-turkey will cause a siezure in some people.
My opinion is that your body will sleep when it must. Having learned the hard way, I no longer agree with the use of these medications except on a very short term basis in extreme cases. Long term Lyme is not one of those cases.
An additional issue is not whether the individual drug will cause problems, but the interactions between it and the other medications and supplements.
If you have been taking sleep meds for a while, you may have become tolerant and will experience withdrawal - that is different from a herx, but feels the same.
Posts: 42 | From Lymeland USA | Registered: Mar 2010
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posted
Also, after you have been taking a lot of medications for a long time, you do build tolerance. Even you have have not been taking a sleep medication specifically, but have been taking meds for pain, or for depression, or other issues, taking a normal dosage of a sleep med may not effect you at all.
Think of it as similar to someone who drinks a lot of alcohol every day expecting to feel an energy boost from drinking one cup of coffee, or one soda. only one cup will not have the same impact on them as someone that does not drink or take any CNS drugs.
Posts: 42 | From Lymeland USA | Registered: Mar 2010
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It is not the first night that would be rough. The rough part kicks in a few days later when you go deeper into withdrawal. Over time, you will become tolerant and need more to help you sleep. It is just the way the human body responds to these drugs - dependence is different from addiction.
Posts: 42 | From Lymeland USA | Registered: Mar 2010
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Keebler
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posted
- I thought my eyes were playing tricks. It may help others to know that this is a DUPLICATE THREAD !
posted
well i am at the stage where one temazepam 30mg is not putting me to sleep, i have to take 2, i dont like this, this mean i am getting addicted, by needing more, i feel very depressed by this.
the half of the trazadone, that i took earlier today have set in, it have me feeling yakky, not feeling right in the head...hope it wares off soon...
should i take the other half of trazadone tonight, so i can see if it will put me to sleep, i have to find out how this drug will work. i would like to take it around 10pm....if it dont put me to sleep, i am usually up late at night, so i want to try trazadone...maybe i'll use a whole pill instead of the half..
cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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sutherngrl
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Its up to you what you try; but I have one suggestion when trying sleep aids. Take them right when you are ready to sleep, with lights and tv off.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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Tracy9
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Every night I take 30 mg of Restoril and 150 mg of Seroquel. I have horrific insomnia. Nothing else has worked but this combo. Seroquel is not a benzo or addictive med.
I attended a conference last year where a TOP LLD said Lyme sufferers should take meds to sleep and meds to wake up; that it is critical to force our bodies into sleep/wake cycle. He recommended Ambien, Lunesta, etc and for daytime Provigil, Adderal, etc. I have this all in writing in his handouts.
Since this is what I have had to do for years, I felt validated. For the past two years I have been bedridden so I have dropped the Adderall unless I am having a rare good enough day where it will help me get over the edge and get up; or where I HAVE to get to a doc appt.
Everyone has thier own opinion, I guess. When I had to see the SSDI doctor he called this pracice "speedballing."
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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There's some good information on quitting benzos at http://www.benzo.org.uk/ by an English physician whose practice revolved around helping people withdraw. I used this information to end an eight-year addiction to Klonopin. Now I use only generic Unisom, which works better for me and has fewer side effects. Sorry for the duplicate posting - I'm just learning how to use this bulletin board. Good luck!
Posts: 1 | From California | Registered: Apr 2010
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I'd like to see those recommendations. Can you block out the doctors name and post a copy? Thanks.
Posts: 42 | From Lymeland USA | Registered: Mar 2010
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Keebler
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posted
- As a couple people mentioned ambien, regarding ambien's effects on some people: -------------
IMPORTANT SAFETY INFORMATION for AMBIEN and AMBIEN CR -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sutherngrl
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I have read some of the reports about Ambien in the past; but I took it for 6 months or more and never had anything even remotely weird happen to me while on it. I think those side effects are pretty rare really.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
i am having bad affect from the half that i took today, it has kick in about 3 hours after my first post at 3:57pm this afternoon, the half that i took today, has me very anxious and i am feeling sick, is this part of withdrawal...
i want to stick it out, i want to get off of benos but this is hard because the half i took did not even put me to sleep, i am talking a whole one tonight. if i could sleep, i dont care how bad i would feel...
i just want it to put me to sleep... if it dont put me to sleep,how long do i keep trying and feeling miserable without sleep...i NEED something that would put me to sleep, not HELP me sleep.. everyone see the difference.
posted
I would give it a few days for sure. You may need more than just 50mg.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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METALLlC BLUE
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I really really don't understand the need to get off the Restoril. I've been on Lorazepam for 6 years and I'm at 2 mg. My dose hasn't changed in years. 2mg puts me to sleep for 3-4 hours, which is typical for this drug. I usually don't use another one. I know that no one wants to be on additional drugs if they don't have to, but I'm pretty sure most of us absolutely know when our sleep disorder is crippling us. It has to be treated somehow. I would not advise someone to go on some crusade to find a different treatment if they found something that already worked, even if the risk of dependency was obvious. The reason being is that finding a useful medication can take months, and that's months that the patient is enduring stress from lack of sleep.
I'm not a doctor though, so this is only my opinion as a patient.
Dr. R out of New York was the doctor who I saw at a conference make the statement regarding medication for sleep. He said it's absolutely imperative and he also said that "All this talk about addiction is absurd, Lyme Disease patients absolutely struggle to sleep and they must be treated long term for their Sleep Disorder or they won't recover." Of course he's only talking about patients who haven't responded to other options over the counter. Dr. Bransfield, who published the paper Neuropsychiatric Lyme Disease also made this statement. Dr. Bransfield is the President of ILADS and does not mind if his name is used given his public position papers.
Here is a direct quote from his paper "The Neuropsychiatric Assessment Of Lyme Disease"
"herefore, the treatment of sleep disorder, depression, anxiety, ADD, etc. associated with neuropsychiatric Lyme disease helps the patient recover. The treatment of sleep disorder is particularly significant. Chronic fatigue and fibromyalgia whether or not caused by Lyme disease are associated with a deficiency of slow wave sleep (62). Improvement of sleep quality, particularly slow wave sleep is strongly correlated with improvement of the chronic fatigue and fibromyalgia components of Lyme disease, which in turn benefits overall prognosis."
Tracy9
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posted
quote:Originally posted by EscapeFromLymeland: Tracy -
I'd like to see those recommendations. Can you block out the doctors name and post a copy? Thanks.
I have it in pdf form if I can locate it; I know it was on my laptop that crashed but I had emailed to someone so let me see if I can dig it up in my email.
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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Been there - heard that - thought that - done that. It is NOT the answer. Those drugs only prolong your misery and prolong getting better. Those medications do not cure anything and the percieved quality of sleep is false. It is not a restful restorative sleep.
Some people can get off those drugs easily. Others build too much dependence. It is impossible to tell the difference between the symptoms of Lyme and the problems caused by those types of drugs. As long as people cover up symptoms and induce symptoms with those drugs, you can not track your treatment progress accurately.
Posts: 42 | From Lymeland USA | Registered: Mar 2010
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Tracy9
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I located the file from the conference but I can't get it to open on my laptop. I would be happy to forward it to you; along with the presentations of four other presenters. You will have to weed through the whole presentation to find this part. It was a public event and public information. I wish I could open it, I'd like to re read it myself. My email is below.
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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Sleep! I need it so badly. I only been getting 30 min to maybe 3 hours a night for past 4 months now in this neuro crash /hell I'm on after taking my first pharmecuticals (flagyl/diflucan) and some herbs.
I've never taken sleep drugs before-
BUT my nervous system is in total overdrive and I have jerking/twitching going on as well as dizzy sick feeling in brain/brain pressure-
On Trazadone but it is not working-- I saw a neuro who said I don't have MS (LOTS of MS symptoms from this crash i'm in). He prescribed Gaba Pentin and said to combine with trazaone to help with nerve agitation (also have that going on in brain/head-difficult to describe). As well as other symptoms and will help me sleep maybe.
I just started GP last night- combined with 25 mg of traz- I didn't sleep I don' think but maybe 1 hour or so.
Any thoughs? I'm chemically sensitive and can taste the trazadone/ and now GP in my mouth all day. I have phase I/Phase II liver detox issues.
Nothing is working for sleep i.e. melatonin, 5HTP- herbs make me jerkier and more dizzy (used to take them for anxiety in pass)
I'm a mess right now- weak, dizzy, numb, jerking ,twitching, balance, gait, hard to hold head up since neck is weak, eye pain (past optic neuritis). Can't believe how I spiraled down so fast. I need to get sleeping to turn this around. I've had periods of bad sleep/not a great sleeper in past but nothing like this!
If I could only sleep I think my body would heal/start to recover from this.
Posts: 200 | From New England | Registered: Dec 2009
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sutherngrl
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F13girl, Trazadone made me feel awful!
Xanax helps calm my nervous system, that feeling of being in over drive. Although its not a sleep aid, it helps me relax and get at least a few hours of sleep.
Ambien with xanax helped for a few months, but stopped the Ambien recently. Seems I am sleeping about as well with just the Xanax.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Tracy9
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F13girl, ask your doctor about Seroquel for sleep. It is the ONLY thing that worked for me. I have to couple it with Restoril, and take 150 mg of Seroquel but for many people only 50 mg works fine. It is not an addictive med, is is often used for bipolar illness but is ALSO USED FOR SLEEP.
It is ridiculous for anyone to say us Lymies don't need sleep meds. Our sleep switch is broken and there are very few Lymies who can sleep without medication. Insominia is almost universal; these bugs are in our brain and our sleep issues need to be addressed just like our physical and other neurological issues.
You will NEVER get better if you don't get rest. Not sleeping does your body so much more damage than taking sleeping aids do. Bottom line.
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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METALLlC BLUE
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I agree fully with you Tracy, as does Dr. H in NY, Dr. D in MA, Dr. R in NY, Dr. B in NJ, oh heck, the list goes on and on.
The Lyme Disease Solution, written by Dr. Singleton, also states:
" Mild Symptoms: The amino acids L-tryptophan (500-1,000 mg) or 5-HTP (50-100 mg) taken before bedtime can help promote lasting sleep because of their ability to increase serotonin production. Serotonin is a neurotransmitter that is associated with calm, restful sleep, as well as improved mood. Supplementing with glycine (2,000-3,000 mg) can also help with this type of sleep problem in addition to insomnia.
Moderate Symptoms: For moderate difficulties staying asleep, a sleep medication may be required. Helpful drugs to choose from include Rozerem (8 mg), Ambien (10 mg), Lunesta (2-3 mg), or Sonata (10 mg), all of which are common, effective sleep medications. Neurontin (100-900 mg), an anticonvulsant drug originally developed to treat seizures, has also been shown to help sleeping problems, including difficulty staying asleep at night. Neurontin (gabapentin) has the added benefit of helping with pain control. Certain tricyclic antidepressant drugs, such as amitriptyline (10-25 mg), can also help with both pain control and sleep. All these prescription drugs have certain precautions and can cause potential side effects. They are also contraindicated in certain circumstances, such as specific health conditions, allergies, and the use of certain other medications. Your Lyme-aware physician is in the best position to evaluate this for you.
Severe Symptoms: In the situation where other aforementioned sleep remedies are not effective, I recommend considering the controlled prescription drug, Xyrem. Because of its potency and potential to cause harmful side-effects and abuse, its use and dosage must be determined by your physician, and its usage carefully monitored. Despite its downside, Xyrem is a very effective sleep medication and deserves consideration. "
Dr. Burrascano writes in the "The Advanced Topics Of Lyme Disease"
"There are three things that will predict treatment failure regardless of which regimen is chosen: Noncompliance, alcohol use, and sleep deprivation."
Dr. Teitenbaum, creator of the SHINE for Fibromyalgia and Chronic Fatigue Syndrome (Lyme Disease induced included) has preferences as well, including "Dr. Teitelbaum prefers Ambien. At 10mg per night[b], this is the single best sleep aid available. [b]Other prescription options which may help improve sleep include Trazadone, Klonopin, Neurontin, or Lyrica."
Dr. J who was in SC originally also spoke at the Lyme Conference and agreed with Dr. R out of NY, and said "Treating sleep disorder is necessary[b], or the patient simply won't recover. [b]Sleep medications are often necessary."
Dr. F out of NY who has released a number of studies on Brain SPECT scans also states that sleep medications are often necessary for patients with Chronic Lyme Disease.
Bottom-line, the best specialists in the field of treating Chronic Lyme Disease often find that prescription medications are necessary. The body doesn't simply sleep when it must. Not only that, but those who see their bodies finally collapse and do sleep, find the quality is so unbearably unrestful, even with alternative and natural therapies are forced to use pharmaceutical treatments.
They are not preferences in many cases, they are essential. As unfortunate as it is, chemical dependency is low on the list of concerns when a serious sleep disorder doesn't respond to anything other than drugs like Klonapin, Ativan, Valium, Xanax, or Ambien, Sonata, Lunesta, or....in the case of this thread, Trazadone and Seraquel.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Tracy9
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posted
Thanks Mike, the presentation I have which I can't seem to open is by Dr H of Hyde Park where he talks about sleep meds and stimulants. I'm happy to send it to you, maybe you can open it.
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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I would like to read or listen to that presentation by Dr. H, but I don't feel comfortable receiving or opening file attachments this way.
Maybe someone else can open it and post it. If it was a public presentation, shouldn't it be on the Internet somewhere?
Thanks.
Posts: 42 | From Lymeland USA | Registered: Mar 2010
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METALLlC BLUE
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The Hope To Heal Lyme Conference of 2005 Discussed this. You will not find it online as it's a DVD set. It can not be duplicated and costs money. A number of the conferences discuss Sleep Disorder and the need to use medications to treat it, but those too cost money.
For those interested in purchasing any conference DVD's, you can go to:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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