Can anyone have regular good sleep without a medication to help?

[bertiedog]

I wear a Fitbit Versa everyday and night which monitors my sleep and from this it is so obvious for the most part I only get good sleep for a reasonable amount of time which for me is around 6 hours non stop, if I take 1/4 clonazapan before I go to sleep.

This has been going on for years so it's not recent and I should add that I only have one prescription of 30 tablets a year for clonazapan so in no way am I addicted to it. For most nights I just take my usual 25 mg Lyrica which is supposed to help sleep and stop me from waking up but in reality it isn't obviously doing this. I also use GABA which sometimes helps me to go back to sleep but is useless for getting me off to sleep when my brain won't switch off. I don't think my SNPs like COMT ++ help either!

I don't take any caffeine after 3 pm btw and no other stimulants at all at any time.

I have tried low dose melatonin but this makes me dizzy, and I always have some magnesium around 9 pm but that doesn't help.

Therefore I have been wondering if anybody here has been able to achieve good, regular sleep without any medication. I find that any of the B supplements apart from B2 and P5P helping me being able to get off to sleep makes this issue way worse and I am not able to get to sleep at all unless I take a tiny bit of the bento.

Thanks for any comments.

Pam

 

[Jyoti]

It is a nightmare, Pam. For good reason, sleep deprivation is used as torture. @Mary is relentlessly at work on this question and might be able to offer some ideas. Also, here is a thread she started that is devoted to sleep: https://forums.phoenixrising.me/threads/what-has-helped-you-with-sleep-insomnia-post-links.78501/

Many of the suggestions are stuff to take, like meds and supplements. But there are some others as well.

I hope you can find a way to sleep through the night more often! I hope that for all of us.

 

[lenora]

Hello Pam.....I'm a very long term sufferer of "no sleep." I can go days without it, obviously don't always feel with it, but manage to survive.

This has been going on for approx. 35 years....and menopause didn't help. Still, it is what it is and many are right in saying that no sleep meds work beyond one or two nights....so why bother? I don't any longer and my neurologist agrees that it's right for me. Sleep clinics have been a waste of time.

I was sleeping better for the first 7 mos. of this year, but I think it was b/c I fractured my pelvis in 6 areas, plus a fractured vertebra. I was in a daze, bedridden and in pain. Not much can be done for pain relief for this type of injury. Anyway, for some odd reason I was getting more sleep.

I'm older (75) and have many changes of meds, plus I change my vitamins and herbs to see if this will help. Thus far, no luck. I have nothing to offer you and I'm sorry. I can't deal with the B-vitamins, although I'm supposed to be taking B-12 by injection every week. I would check out Mary's site.

Overseas travel used to be a nightmare (my mother-in-law lived in England)....it would take days to a week to adjust. In my case I've been told it's b/c a brain surgery that was needed was close to the sleep center of the brain. If so, it's something that I'll have for an even longer period of time.

Oddly enough, I can sleep from 4-5:00 a.m. to about 9 a.m. if left to my own devices. I do know that tampering with my sleep schedule in any way makes everything worse. So, please, don't let me sleep in....up and at 'em like it or not. No, I don't nap. Yours, Lenora

 

[Crux]

Therefore I have been wondering if anybody here has been able to achieve good, regular sleep without any medication.

I'm beginning to sleep pretty well now. It may change, but I'll risk posting about it anyway.
Taking calcium chelate for over a year now has been the strongest factor for regular sleep . Potassium still helps a little.

Before calcium chelate, I couldn't tolerate magnesium, but now I can, if not too much.

 

[Mary]

@bertiedog - I've been wrestling with sleep forever it seems, like most of us here! I was on a benzo - lorazepam - for 11 years when I realized I was going to have to up my dose, again - I'd already done it once, so I tapered off over a period of about 7 or 8 months. I had always thought I was on a low dose (first 0.5 and then 1 mg at night) and that I would have no trouble stopping it, but it was surprisingly hard to get off of. Had to go very slowly - if you do try to do this, I highly recommend the benzo buddies forum and the Ashton Manual, which were very helpful. I did learn that vitamin C and taurine can help with brain excitotoxicity so they helped with my taper.

My latest sleep experiment is using a CBD product called Delta 8 (THC is not legal in Texas). Several years ago I tried CBD oil which did nothing for me, but Delta 8 (in the forum of gummies) is helping and also doesn't make me feel yucky like the THC did when I was in California. Also I'm adding a capsule of NAG (n-acetyl-glucosamine) in the middle of the night. This is supposed to help process or reduce glutamate in the brain, and this is helping too.

Have you tried niacin before bed? I can't take any of the other B's at night (including P5P) as they cause insomnia for me, but niacin does the opposite. I started taking it before bed several years ago - I don't remember how I came across doing this - but it noticeably helped me go to sleep more quickly. I take 400 mg before and 300 mg more middle of the night. I also take several other things - inositol, melatonin, 5-htp, magnesium glycinate. I told one of my sisters about niacin and she started falling asleep more quickly almost immediately.

Niacin does cause flushing - it can be uncomfortable but is temporary and generally I feel very relaxed after the flushing stops. I found that niacin which causes flushing works better for sleep for me than niacinamide or non-flush niacin. Also time-release niacin has been associated with liver damage and is not recommended.

I wish I had a magic bullet for us all!

 

[ljimbo423]

Therefore I have been wondering if anybody here has been able to achieve good, regular sleep without any medication.

I use to have terrible insomnia, for many years. Maybe getting 3-5 hours of sleep a night.

Now I get about 8-8.5 hours of sleep, out of 9, almost every night without medication. I have for several years.

I take 6-700 mg holy basil, .62 mg (620 mcg) sublingual melatonin and 50 mg 5 htp, about 30 minutes before I go to bed. If I wake up, I usually go back to sleep within 10-15 minutes or so.

 

[Crux]

I forgot to add that I still take 1000 mg. tryptophan and 1 mg. melatonin. They still help a little.

 

[LINE]

I'm beginning to sleep pretty well now. It may change, but I'll risk posting about it anyway.
Taking calcium chelate for over a year now has been the strongest factor for regular sleep . Potassium still helps a little.

Before calcium chelate, I couldn't tolerate magnesium, but now I can, if not too much.

Calcium work for me as well. Try with magnesium if calcium by itself does not work. GABA as sublingual works wonders (this is not taken orally but under the tongue). Other ones include, Sleepy Time tea, valerian, lemon balm, CBD oil. I also find that some methionine helps when dealing with insomnia. Insomnia for me is from histamine release, methionine works on this for me.

 

[Wishful]

Instead of 'medication', which includes supplements and herbal remedies, you should probably use 'pharmaceutical'.

For me, it's more about what I need to avoid in order to have a full night's sleep: exertion--both cerebral and physical--after 2 PM, or quickly-absorbed carbs between ~2 and 6 PM or so. Both of those factors are my main triggers for insomnia. Socializing makes my brain rev too much when I go to bed, so that delays falling asleep for a few extra hours. Too much fatty meat will make me wake up sometime in the night feeling overheated, so that's disruptive too. There are probably other dietary factors that I'm not aware of because I'm avoiding those foods due to other ME sensitivities/symptoms.

One experiment to consider: try avoiding or at least rescheduling the things you normally do every day, such as reading, listening to music, watching TV, etc. One of those things, perhaps done during a certain part of the day, might be overstimulating at bedtime.

Has anyone here improved their sleep patterns by listening to certain types of music or other sounds before/during bedtime?

 

[bertiedog]

Has anyone here improved their sleep patterns by listening to certain types of music or other sounds before/during bedtime?

I have used Ocean Sounds playing on Alexa for an hour if I am in a bad pattern and find this helps as long as I have taken some Gaba and a very small amount of liquid melatonin. Sometimes that will work for me but not if my central nervous system is really stirred up. (Obviously it wouldn't work for somebody who isn't confident in water!).

Because I am steroid dependent it can cause this issue of the nervous system being very stirred up because the amount of steroid in my body has to be very low in order to sleep but if it is too low then it is the only time I get anxiety because I will become very dizzy. If that happens my CNS is overstimulated and I can be awake for hours before everything calms down but if I don't take that 1/4 clonanzapn in that situation then I won't sleep all night and will feel horrendous the next day with a guaranteed severe migraine. Obviously I don't see any point in going through that so it makes far more sense to me to take that tiny piece of the benzo but day to day I don't take it.

I think I am getting a better understading of why my sleep has been so poor recently. At the beginning of the year I developed high blood pressure and it was necessary to take a lot more Propananol than I had been taking for years. Over time it has been blocking my thyroid medication which I thought might happen, it was masked I think because we had such hot weather here in the UK for a long period.

For the past month and a half I have only been able to do a fraction of what I would normally be able to do along with other symptoms, one of which I think is the poor sleep quality and so many muscle issues. At last the penny has dropped and it also explains why my bp had dropped last month to 98/63 and pulse barely 60.

Since Sunday I have been able to up my thyroid medication which contains T3, the active thyroid hormone plus from a month ago I was able to reduce the Propananol and already I am feeling more energy but obviously it isn't sustained yet and at last I have actually felt happy at times, something I realise had started to disappear. The past 2 nights I have slept all night but still only for my usual 6 hours non stop but am grateful for that.

I think it goes to show how complex it all is and how we are all very different with different reasons for our symptoms but I am very grateful for all the replies and suggestions.

Pam

 

[FinRinTin]

I've take every night 4mg LDN + 5mg Melatonin and a weak sleeping aid like Betadorm.
Usually I put a timer for half an hour on my iPhone while listening to some audio book.

Fortunately I rarely reach the end of the timer before I fall asleep.

 

[lenora]

I'm sure you've all read about my long-standing sleep problems, so I won't go into that area again.

However, I did want to say that anything upsetting after 3-4:00 p.m., including phone calls, is a definite reason for not sleeping. Also, I can't eat after 4:00 p.m. at the very latest, thus have a very, very light snack and a larger meal at noon. GI problems that will keep me awake for certain.

So many of us have different vitamins, herbs, supplements & meds that may or may not work. Personally, I'm glad that you find substances that work. Mine has been an elusive search. Yours, Lenora

 

[lenora]

@Mary.....Hello! I'm going to try Delta 8, so would like to ask you at what time of day you take it? I assume before bedtime, but wanted to check before doing so. I'm SO glad that it has helped you. A relief, I'm sure. Yours, Lenora

 

[wabi-sabi]

I have found mestinon to help me sleep. It was quite a surprise, but a welcome one! Of course I still need to do all the meditation and relaxation stuff and be very careful with the caffeine.

 

[Wishful]

Over time it has been blocking my thyroid medication which I thought might happen,

It's a bit scary, how taking one drug can require taking another to deal with the side-effects, which needs another to deal with that one's side-effects, until your pill volume exceeds your food volume. Here's an idea for a new service: consulting for downsizing your drug requirements. Probably a high-growth industry for the future. Another service: consulting for how to avoid getting on that spiral in the first place.

 

[lenora]

Isn't that the truth. I thought I was OK until my neurologist unexpectedly died. I just came from seeing his replacement and, of course, as they do now a P.A.

Truly, I remembered the numbers of you who had complained about "troubled waters" when trying to get a Dr. to listen to you, prescribe a proper med, etc. I simply need small amts. of Xanax, but have to go through hoops before this will occur. I'd have to see a psychiatrist (for what?) and no, I can't see that spending 5 min. with my neurologist, starting again with a rheumatologist, GI specialist, optometrist, finding a new internist, my new dermatologist (Moh's surgery for skin cancers), cardiologist and on and on it goes. Plus the dentist, of course.

Forget new clothes, I now dress for doctors' visits. This is all a bit much for my husband also. So, today, I exploded and funny thing, I thought of so many of you and said the exact things you had been complaining about. Really, all you do is show up, see the P.A. who says "No, no and no" again and then they want you to see the new Dr. To what? Be told "No, no and no" again. I'm not doing it any longer....my empathetic neurologist died and no one, but no one can possibly understand my history. Why? Because the medical world is set up against them.

I began this trek a very, very long time ago. The patient actually saw the Dr. and spent time with him/her, insurance was handled by one or two people only. A receptionist was the only other employee....overheads were ever so much lower meaning the Dr. could spend more time with the patient. I'm the recpient of volunteer care by an orthopedist in childhood, I'm grateful.
I have to say that I don't understand why anyone would become a Dr., surely the joy and respect once held has been gone for a long, long time. I have an incredible no. of diagnoses and the only one honed in on is FM. That's it, as if it sums up the entire person over a lifetime. Neve mind that I've tried alternative therapies of all sorts, have been a very capable human being but today I'm yesterday's trash. I've used vitamins and herbs, still take necessary vitamins

I left refusing to see the Dr., was respectful and kind to the office employees and apologized to the P.A., but what's the point of seeing anyone?

So now I'll see my also elderly internist, who also won't prescribe my keppra (seizures) and xanax....and my frustration overfloweth (kind of sort of, a bible quote....or should be).

The news tells me that 17 high-school students overdosed on fentanyl pills. So what's the answer here...stop the vendors, perhaps? No, we'll give them an antidote for the overdose. (So they can do it again, of course). To all the medical professionals out there, I have this to say: You have very ill patients, but we don't ever, ever want to deal with you because you can't or won't help. Your system is a mess, I feel for you because I know what medicine used to be and unless you have cancer forget about being taken seriously. Also, I am not alone in my feelings. Amen. Yours, Lenora

 

[bertiedog]

Another service: consulting for how to avoid getting on that spiral in the first place.

If one could change one's DNA that might be possible but until that can happen we have to deal with what we have inherited in the best way which I agree involves doing everything possible to be healthy but unfortunately that doesn't always work out as in my case. For instance loosing 4 pints of blood immediately after childbirth as happened to me way back in 1975 but not having it sufficiently replaced, knocked my hormonal system for six and I was never the same after even though I was only 27.. Within 4 years I went from somebody who was very active and played tennis several times a week. walked my dog daily and looked after 2 young children into somebody who couldn't recover from a bad bout of flu and who could never again play tennis because of the vertigo it caused every time I threw the ball up to serve!

In a perfect world lets face it drugs would never be needed but I for one wouldn't be alive without my cortisol replacement and I cannot get off the sofa without thyroid medication too. I have inherited SNPs that stop the conversion of T4 to T3, the active hormone and as I got older this started to become a problem but was not recognised by me or my GP as I didn't know anything about this sort of issue at that time. I use this as just one example of how over time issues can develop through no fault of one's own and without the help of essential medication one cannot lead any sort of life or in my case no life at all.

Pam

 

[lenora]

Yes, Pam, you sound a lot like me. I have more than ME (other neurological conditions) but all were congenital in my case. I had severe pain after a sneeze in my 30's and from then on, life has been downhill.

I was in casts and braces for all of my childhood, "thought" I was better in my 20's, had two children....but the birth and recovery from the first took mos., the second was probably like it's supposed to be.

Instead of childbirth destroying my life, it was actually surgery followed by two bouts of two viruses that knocked me down. By my own forces I did recover from that, but PT 3 times/wk. lasted for about a year and I was formally diagnosed with CFS and FM. My neurologist had also diagnosed me....so at least I had two definite diagnoses.

A second surgery (this time, brain) was also difficult, but I recovered far more quickly. Probably because I had time to properly prepare my body for the onslaught to follow....plus the fact that it after the first wk., it was a far easier surgery to recover from.

Without medical intervention life would have remained impossible and I would have been another victim of what we now call ME and probably be bedridden and died from it. I do understand those in that particular condition and hope some cause and cure will be available in the near future.

Actually an appt. yesterday showed me what I'll be facing with a new Dr. and, quite frankly, I'm not willing to go through it. Bear in mind, that I have diagnoses of many illnesses but it's interesting that they honed in on FM as the reason I was seeing the Dr. Didn't even ask about my other serious neurological conditions. Wanted me to psychiatrist....the usual. Yours, Lenora.

 

[Wishful]

In a perfect world lets face it drugs would never be needed but I for one wouldn't be alive without my cortisol replacement and I cannot get off the sofa without thyroid medication too.

Yes, some people do need medication; that's the whole purpose of medication. However, I expect that there are a lot of people who get prescriptions they either don't really need, or who would be better off with alternatives. Drug A might be the most popular treatment, but that individual's responses make its side-effects worse than average, so drug B might be a better choice overall. This seems like a good target for AI: looking for an optimum combination of drugs given patients' unique responses to drugs. A regular doctor is not going to be able to do that in a 5 minute visit. I can imagine a phone app, with sensors for blood, breath, urine, etc, that the patient reports responses to a drug, and the AI suggests an alternative drug. Of course, the world being how it is, the professionals will be against it and Big Pharma will exploit it...

 

[lenora]

Hi Wishful.....I never thought I'd be reliant upon drugs the way I am today. However, I now have two different types of epilepsy (which can damage the brain when/if I have seizures), high cholesterol (familial....everyone of my family of 10 had it since testing began), my father died at age 40. I'm not heavy...but have 7 stents & more to follow, (eat a very healthy diet), autoimmune encephalitis and high BP, plus chronic pain. Trust me, I've tried but vitamins just don't do it for me. Of course I take certain ones to keep what's going on here in good working order, but as one gets older things like osteoporosis are just a fact of life.

So, no....here I am one of those people who did everything right, including exercise, but congenital defects rather beat me to everything else. It happens and I accept it. However, one does get tired of it....it's quite exhausting actually and everyone is a specialist today and really can't put the entire body together.

I've had a good life; really can't complain about it. However, I've had to make the best of a bad situation for between 35-40 yrs., and I have and yes, it was worthwhile and I wouldn't have gone in that particular direction without these illnesses. My heart is huge and who knows what I would have been like without seeing firsthand what so many of these illnesses and other things in life can do (ME is not the only one) ? So here I am taking drugs that never would have entered my mind.....but life doesn't always deliver according to plan.

If vitamins and herbs work for you consider yourself fortunate. I can only wish.....Yours, Lenora