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sunflower
Member in Phase 3
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Posted: Fri Nov 25th, 2005 04:43 |
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hi everyone,
i've had sleeping problems for a long time, as most of us do, and was wondering what meds people are taking that really help. i've taken all sorts of natural things in the past; valerian, melatonin, 5htp, calcium, magnesium, etc., but nothing helped. i once tried an over-the-counter sleep med and it gave me worse insomnia. my problem is it takes me a long time, sometimes hours, to fall asleep, and i have restless-leg syndrome. i have never wanted to take a drug because of dependency issue and side effects such as dizziness. is anyone taking anything that works and that doesn't have much of a downside? thanks...sun
See I have insomnia and fatigue. What should I do?
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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Larry
Member
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Posted: Fri Nov 25th, 2005 11:23 |
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Hi, sunflower
I, too, have had sleep problems (including diagnosed sleep deficiency at one time) and have tried countless remedies. My sleep now involves 9 1/2 hours in bed each night with some wakeful periods, but I am usually able to get enough sleep to function well at work the next day. This is a huge improvement over what my sleep had been.
The significant improvement in my sleep I credit to an over-the-counter product called Gravol. Gravol is the brand name for dimenhydrinate. I buy the 50mg tablet Safeway "no-name" product which is about 1/4 the price of the brand name. Gravol's claim to fame is its use by people who suffer from motion sickness (while travelling in cars, etc.).
About 45 minutes before I go to bed, I take HALF of one tablet. When I wake up during the night, I take another 1/4 or 1/2 tablet, but only if there remains at least 3 hours before I intend to get up.
I find that the product makes me feel drowsy, but there are no unpleasant hangovers/metallic taste the next day. I would, however, mention that you will feel slightly groggier during the night; therefore, take extra care when getting up for that nocturnal trip to the washroom or for any other out-of-bed activity.
Regards,
Larry
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-osteopenia,psoriasis,sleep disorder,floaters, depression, rosacea, blepharitis, psor arth. Celexa, ApoFlurazepam,1000mgVitC,Gravol -OCT/04: 1,25-D=45;25-D=39 JUNE/05:25D=7; Dec2/05=Benicar
40mg4QD;Dec14Mino25mgQOD;Dec21=50QOD;Jan6=75QOD
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dsiebenh
inactive member
| Joined: | Tue Aug 31st, 2004 |
| Location: | New Jersey USA |
| Posts: | 156 |
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Posted: Fri Nov 25th, 2005 11:34 |
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I take 600mg Neurontin before bed, which doesn't help me fall asleep, but helps me STAY asleep.
When I still have difficulty with sleep, I take .125mg (1/2 of the smallest tablet) of xanax and I'm out within a 1/2 hour. It lasts 3-4 hours.
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Bulls Eye Rash 1988, MS Dx 1999, Chronic Lyme Dx 4/04. No D in diet 9/13/04. NOIRs 10/15/04. Phase 1 12/1/04, Phase2 1/24/05, Phase 3 5/26/05. 1,25D=52 pg/ml 10/23/04, 40pg/ml 1/10/05 30pg/ml 6/16/05 24pg/ml 10/7/05. 25D=7ng/ml 10/7/05.
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MicB3x
Member
| Joined: | Fri Jan 28th, 2005 |
| Location: | .Canton, Ohio USA |
| Posts: | 107 |
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Offline
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Posted: Fri Nov 25th, 2005 13:11 |
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Hi Sun, Still battling the sleep demons?
I was diagnosed with Periodic limb movement disorder / RLS Oct. 2001
Sleeping problems for over 15 years. Have been awake for 72 or more hours at a time with no sleep.
Benedryl- Worked for a while at first and then made things worse plus daytime drowsy.
Valerian root- No results
B-5- No results
Various teas- Sleepytime etc:- no results
Elavil - Can’t recall if this did anything but it must not have because I did not continue
Paxil - Caused severe mood disorders and addiction/withdrawal problems. Psycho problems. No good for sleep
Ambien - Like eating candy. Provided no sleep at all
Klonopin or Clonazepam - worked only slightly better. Still woke up 99 times every 6 hrs. Addiction problems also. Used this for 3 years. Daytime handovers.
Temazepam, Lorazepam - provided very little sleep and hangovers.
Neourotin/clonazepam combo - Sleep never improved beyond what Clonazepam alone provided.
Meripex/clonazepam combo - No difference in sleep beyond Clonazepam alone.
Permax/clonazepam combo - Bad allergic reaction. Nose swelled shut as did throat and tongue. Passed out a few times and came to in the floor. Severe vomiting, Cold sweat.
Sinemet/clonazepam combo - Accelerated heart rate and brain activity. Induced suicidal thoughts, extreme fatigue, No sleep at all.
Darvocet-N / Clonazepam - No help
After 1 1/2 years of this I was ready to off myself so I settled on 15 mg Remeron to reduce the depression, and 0.5 Clonazepam for 2 years - Sleep was still horrible but I got tired of all the trial and mostly error.
Tried Lunesta recently - Nothing there for RLS. No sleep for me I have changed to Diazepam at Trevor’s suggestion and I have now weaned down to 5mg Remeron since starting the MP. Sleep quality has been steadily improving. Of all the meds that I have taken and as you can see, they thru everything in the book at me. Trevor mentioned taking the smallest dose of the brand name Valium needed as a muscle relaxer because it is the easiest to wean.. I still use the generic Diazepam at a higher dose (Addiction) and this has helped me and it has the least residual hangover on most days. I also put two small 2x4 boards together and stapled carpet to them to raise my legs slightly while seated for long periods. This really seems to eliminate the pressure points. I truly hate drugs. But sometimes there is simply no other choice.
Good Luck, Mic
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Not MP: Dx 1977 Sarcoidosis NeverTreated/ Classic Sarc Symptoms/ Dec04 25d=20/ 1,25d=40/ Sept06 25d=9, 1,25d=45 Quit Vit.d Dec. 04/Bolle 100's outdoors only
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Larry
Member
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Posted: Fri Nov 25th, 2005 13:38 |
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Hi, again!
I forgot to mention that I also use a sleep medication similar to the Diazepam.
Usually twice a week, when I feel the need for a better sleep than on "Gravol-only" nights, I take Apo Flurazepam--a prescription medication which my pharmacist tells me is in the same family as Diazepam. The Flurazepam has a shorter life (of is it half-life) than the Diazepam, according to the pharmacist.
I try NEVER to take the Flurazepam on consecutive nights, since I don't want to impair its effectivenes in the longer term.
When I do use the Flurazepam, I take 1/2 Gravol tablet 45 minutes before retiring, and then Flurazepam 30 mg about 30 minutes before retiring. I take no further Gravol during that night.
Regards,
Larry
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-osteopenia,psoriasis,sleep disorder,floaters, depression, rosacea, blepharitis, psor arth. Celexa, ApoFlurazepam,1000mgVitC,Gravol -OCT/04: 1,25-D=45;25-D=39 JUNE/05:25D=7; Dec2/05=Benicar
40mg4QD;Dec14Mino25mgQOD;Dec21=50QOD;Jan6=75QOD
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metalevel
inactive member
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Posted: Fri Nov 25th, 2005 14:35 |
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Hi sunflower,
I initially used a combination of melatonin and elavil (3mg/10mg). My biggest problem was figuring out when to take it as I would take it too late and wake up very groggy, kind of hung over. Eventually I let go of the melatonin and experimented with timing the elavil and now take it 12 hours before I want to wake up. I very the dosage (10-15mg) depending on my pain levels and discomfort as I can't rest or sleep on the left side of my body. I have noticed no side effects. My doctor assures me that is it very safe and has been in use for a long time for chronic pain and associated sleep disorders. It is also very inexpensive in Canada. I also tried some "natural" products - valerian, 5HTP, etc. and did not find them useful.
take care,
metalevel
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Dx. pelvic/spinal-malalignment, head injury, visual dys, cranial nerve dys, seizures? myofascial pain syn, fatigue, brain fog. Jan/05 1,25D=53.9, 25D=28.8. Oct/05 1,25D=26.9, 25D=15.6 No D/light, Noirs.10 mg elavil, Full MP Oct 19/05, 3x40mg Olm, Mod Ph
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sunflower
Member in Phase 3
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Posted: Fri Nov 25th, 2005 16:17 |
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thanks everyone, for such a great response to my query . i have plenty of things to try now--think i'll try the over-the-counter one first and go from there. God bless all of you...sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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Meg Mangin R.N.
Research Team
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Posted: Sat Nov 26th, 2005 03:25 |
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Sun,
See also:
Which sleep med, anti-anxiety med or muscle relaxant can I take?
Best,
Meg
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Aunt Diana
Advocate
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Posted: Sat Nov 26th, 2005 07:23 |
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Hi Sunflower,
I've been struggling with insomnia for 20+years. I have found that getting a good nights sleep is the single most important factor in how I am going to feel the next day.....achinesses, pains, energy level, mood, etc. So it is probably my most important treatment.
My remedies have changed over the years (I started with benadryl, but that doesn't always work, graduated to Xanax, but found I would wake up at 4a.m. and couldn't get back to sleep unless I took a half a pill, then that wouldn't always work and would leave me feeling groggy. For a few years lorazapam seemed to do a good job but I seemed to have to up the dosage for it to continue to work and I would wake up at 4a.m. and not be able to get back to sleep.
Now I use a combination of 1 melatonin and 1 ambien (10mg). It works like a charm for me and I can sleep from 8-9 hours and wake up feeling refreshed. Once in a great while I'll need to take another 5mg ambien if I am having a really bad night.
I hope you can find something that works well for you.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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FeatherRiver
inactive member
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Posted: Mon Nov 28th, 2005 19:02 |
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| Early in the MP it helped me sleep well - then I had to go back to Ambien - but I have been sleeping very well recently - do not need to take abien - I do feel our pain has a lot to do with our sleep quality - the nights I am awake is usually due to my pain level. (I call it the "Princess and the Pea" night - NO comfortable position will help)
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DianaF:CFS,Fibro,RA since childhood, Dysautonomia
VitD 22/33, 7-04,Started Ben.MP 5-04 Ben 40mg q6h + Mino 100mg q48h + Quer as needed, Phase II Started Jan 15, 05 Ben 40mg q4h stopped mino and Z temp 2/22/05
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sunflower
Member in Phase 3
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Posted: Mon Nov 28th, 2005 22:59 |
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thanks feather,
i am in process of trying the dramamine, that larry has had luck with, cause it is over-the-counter, cheap, easy and no side effects. however, so far it isn't working real well for me. i have been researching the various drugs members have suggested, and i think i am going to try ambien next on a qod basis, to try to minimize the possible tolerance problem. i will post the results i have with it once i give it a trial. pain definately is a factor, but for me a wired feeling and sometimes restless legs are the major issues. glad you are sleeping well right now. bye...sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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Meg Mangin R.N.
Research Team
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Posted: Tue Nov 29th, 2005 01:02 |
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Sun,
If restless legs and a feeling of being 'wired' is part of your sleep issues, you might want to ask your doctor about low dose Valium (not the generic variety).
There is info about pain control, including ways of treating it without medication in PAIN CONTROL.
Best,
Meg
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sunflower
Member in Phase 3
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Posted: Tue Nov 29th, 2005 01:15 |
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hi meg,
thanks for your suggestion; it's just that i'm so afraid of getting dependant on a drug and having to wean off of it later . my friend's father was once addicted to valium and started having terrible fears and paranoia, etc. it made me scared to death of it. if i just took the lowest dose maybe 3 times a week, do you think i would avoid the addiction possibility? by the way, you're terrific ...sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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Meg Mangin R.N.
Research Team
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Posted: Tue Nov 29th, 2005 02:09 |
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Sun,
Valium can be addicting but if used carefully for obvious and intolerable physical symptoms like feeling 'wired' and restless legs, I think it's worth the risk. Use the smallest dose first (1/2 a 2mg tablet) to gauge it's effect and don't expect complete relief of symptoms. That way you are taking the least amount possible. Using it every other night or only the nights you really MUST get to sleep may reduce your chances of dependancy if you need to use it long term.
I used it only very occasionally when I traveled years ago, knowing, from experience, that not taking it meant a sleepless night in a strange bed when I needed to be at my best for a meeting the next day. I was initially prescribed brand name Valium. Later, perhaps this was when the generic form became available, I was given diazepam. I had no knowledge of inflammatory diseases and fully expected to get the usual effective help falling asleep with diazepam. Imagine my dismay when I didn't. I recall having to convince my doctor that diazepam didn't work so when Trevor recounted a similar experience, it was just another piece of my disease puzzle.
I never minded not getting a good nights sleep unless I had something really important going on the next day. And Valium's effect wears off in a few hours so if you have trouble staying asleep, it's not going to work for that because you don't want to take it too often or too close to when you need to wake up.
Best,
Meg
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P.Bear R.N.
Research Team
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Posted: Wed Nov 30th, 2005 00:28 |
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I have found valium to be occasionally helpful for motion sickness and for sedation, and I too have found that brand name has a much stronger effect. However due to the cost concerns, I have found that generic will help if one takes two to three times the dose of the brand name product. I have not had problems with hangover etc. from a higher dose and only use it occasionally. Generic is very cheap as compared to Brand name, so if money is a major problem it would not hurt to see if generic would work for you at a higher dose.
Meclizine is a med usually used for motion sickness, but is an over the counter antihistamine that makes one drowsy and is another option to add to the long list of meds to try for sleep. best, P.B.
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MCS, neuroborreliosis, fatigue, tinnitus, neck/facial/shoulder/lumbar pain, Bells palsy, Prostatitis, blurry vision, dizziness, 1,25D=48, MP2/05 MP3, cytomel, D25<5
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Ames
Member in Phase 3
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Posted: Wed Nov 30th, 2005 15:44 |
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Hi Sun,
I have struggled with insomnia for several years now-at some points it was terrible and I did not sleep for weeks at a time. It only got worse as my CFS got worse, creating a terrible spiral of pain and fatigue.
In any case, I feel that if you are not sleeping well, finding one or two over the counter meds that help you get the rest you need is crucial. I think it will be very hard for your body and immune system to function successfully on the MP if you are constantly exhausted. Most sleep meds do have some side effects, but there are quite a few out now that do not lead to dependency. If you are worried about dependency issues down the road I would suggest staying away from sleep meds from the benzodiazapine family. Although they tend to work well, they are the drugs which down the road may cause you to have to wean off them slowly.
When it comes to sleep drugs, it's hard to simply recommend them to another person, because different people can all react quite differently to the same drug depending on their illness, type of sleep disturbance etc.
If you suffer from restless leg and feel wired at night, I have a strong feeling that you are probably not getting enough stage 4 sleep. I take a sleep medicine called Gabitril, which more than doubles deep sleep and has no side effects for me whatsoever. Since taking it, I have yet to wake up during deep sleep periods of the night, and I feel that during the day I do end up having more energy.
I find that Trazodone is a good drug to help you fall and stay asleep for a good 8 hours. It has few side effects. Take it with food at night and it works very well.
Drugs like Amibien and Sonata tend to work well helping people fall asleep, but due to their short half lives can sometimes cause people to wake up during the night or after only 5 hours, which is what happened in my case.
In any case, I could go on about sleep meds for a very long time...probably because I literally have tried them all, and seen specialists all over the country for sleep.
You may find it helpful to go to a site called Remedyfind.com. It has a list of nearly every sleep med, describes how it works, and then allows people to write about their experiences with the drug. Maybe reading the reviews can help you decide on a drug that sounds promising to you....
I am the insomnia "host" for the website. I write the insomnia newsletter which comes out every other month. Sign up if you are interested!
I'm not trying to promote the site because i write for it, simply because I think it can be helpful.....
My profile with the story of my battle with insomnia is up there somewhere also...if you want some extra reading...
ALSO
To anyone else who may check out the site. It also reviews remedies for CFS. Under remedies the MP is actually listed. However it has only been reviewed by four or five people, all of whom give it terrible reviews for the most ridiculous reasons. It's embarrassing and terrible that people are getting the wrong information. For a while now I've been meaning to post that if anyone has the time, they should get on the site and write a positive review. I know about 8,000 people sign up for the CFS newsletter alone, so I feel a few positive MP comments would really reach a lot of people.
Hope you can get some ZZZZZs.....
Amy
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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BARNEY
Member in Phase 3
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Posted: Wed Nov 30th, 2005 22:17 |
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Sun,
Before I started MP, I had restless leg syndrome bad, no longer have it.
An hour or so before I go to bed, I take 3/500mg Tylenol, when I feel sleepy I go to bed, turn the electric blanket on 4 and lay there for less than 15 minutes and usually go to sleep. It seems to me that the pain we do not realize is bothering us, is keeping us awake and with the warmth from the blanket, I get a good nights sleep, except for bathroom call. I do not do this every night, but lots of them.
Hope this helps!!!
HANG IN THERE, WE WILL MAKE IT!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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Rosie
Member
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Posted: Wed Nov 30th, 2005 23:17 |
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Hi,
Since chronic insomnia has been my most frustrating and life changing symptom, I would very much like to know how the MP affects this symptom. Has anyone gone from sleeps meds every night for years to not needing any?
Thanks, Rosie
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Thyroid disease/Spondylitis/FMS/Osteopenia/Parox Atrial Fib/Severe Insomnia; 9/19/05: 1,25D=53, 25D=27; stopped D suppl (525iu/day) on 8/3/05, limited D intake.
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19133 |
| Status: |
Offline
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Posted: Wed Nov 30th, 2005 23:33 |
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Rosie
see MARSHALL PROTOCOL SUCCESS STORIES page 3 for Guss' and Sam's story INSOMNIA post
Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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sunflower
Member in Phase 3
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Posted: Thu Dec 1st, 2005 03:11 |
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thanks so much meg, pbear, ames, barney, rosie, barb,
wow, i am truly overwhelmed with great suggestions. and i had just decided to ask doc for a valium rx! ames, i have already checked out remedyfind.com for info--good site. i am going to have to rethink what to try next--will read up on gabitril and trazadone. good nights to everyone...sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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