Severe chronic insomnia. Deteriorating. No strength now. Almost bedridden. Help.

[ejaji]

0-2 hours sleep daily now. Too weak to write much. Body feels like it's collapsing from inside. For last 7 months deteriorating. I hv insomnia n RLS both. Insomnia even if rls not there. Tried zolpidem, clonazepam, etizolam, but not working anymore, n increasing them makes me sick. I think trazodone was already tried once but didn't work. Mirtazipine was the only medicine which helped a little with sleep but aggravated rls so badly n then stopped working after a month so it had to be stopped. When I tried it again after some gap, it didn't work. Already take iron, magnesium. No strength to talk to doctor or research or arrange medicine now. Feel scared to try new meds as due to the extremely prolonged sleep deprivation, my body is too weak/sensitive to side effects n vulnerable right now. Get severe side effects. Read abt CBD oil but no idea which or abt availability here?

Pls tell me anything else I can try which won't aggravate RLS. Pls reply urgently.

(By the way, Blood tests hv not indicated any other reason for this serious situation. Only liver was mildly enlarged in ultrasound but doc said LFT was normal. I still don't know what exactly has happened to me. I used to be healthy n sleep normally before February. But Right now I just need urgent relief to sleep so I survive.)

Had such bad side effects of some medicines, n the sleep problems have developed into a fear of sleeping too. I dread the coming night. Feel scared upon trying to fall asleep too. Not able to actually get into sleep anymore. Seems like sleep centre in brain is damaged.( I used to sleep 8 hrs normally before, but in February 2021 I had a severe reaction to a dental RCT treatment which i believe affected my nervous system , and the insomnia problem suddenly started the day right after that.)

Any other medicine that can help to sleep urgently?

[Elffindoe]

You'll hate me for this, but I think your problem is psychological as much as physical. e.g. some key words you use "fear", "dread", "scared".

It may simply be that your RLS treatment is not being effective.

There is no real alternative to effective medical treatment for severe RLS, but where effective treatment isn't possible and sleep is a particular problem then cognitive or behavioural stratgeies may be of some help.

A well respected RLS expert has advised me that CBT-i is known to be of some value for sleep problems in RLS.

[Markes]

Listen, man. Try natural remedies for your insomnia. I suffered just before three years from insomnia and RLS. Tried different medications and remedies. Very weak effect. Finally I decided to put in order my daily routine. I turned to vegetarian regiment with more (animal) protein. Exercises with heavy weights three times a week. Began two meals a day. Breakfast 6.30. Dinner between 2 and 3 o'clock PM. So I got to bed at ten PM with empty stomach. I needed two months until my body accustom to this regiment. During this time I continued to suffer RLS and lack of sleep. But slightly convulsions lowered and sleep came back. For sure I consume magnesium and iron. Now I sleep well and have very weak RLS. Severe RLS came when I have my dinner right before getting to bed. And sleep comes after 24h. So my friend, put in order your life. Many complaints and diseases will disappear. And it will take you long, long time.

[Nb72]

I feel it for u its awful

[Mum007]

I did sleep restriction therapy. Google it. I used to sleep between 0 and 3 hrs per night. I used to dread going to bed. Basically you are only allowed in the bedroom to sleep. If you hardly sleep at all then 5 hours is the time you should spend in bed. Ie go to bed at 12 and get up at 5 or go to bed at 3am and get up at 8 am. If you can’t sleep after 20 minutes get up and do something else for a while in another room. No tv. No computer. No exercise. Something light like reading (except you will be too tired). Or ironing or empty the dishwasher. Then go back to bed and try again. Do this every night. When you have slept for I think 80% of the 5 hrs every night for a week then you can increase it to 5 1/2 hours until you reach 80% for another week and then you can add another 1/2 hr And so on. It’s brutal but it works and can’t be any worse than how you are already feeling. No napping during the day by the way. Good luck.

[Goldy700]

Where do you live? I have insomnia and have tried many medications for it. What has worked for me is CBD:THC oil 2:1 titrated to a dose that works for you. I sometimes need to supplement this with vaping a good quality Indica variety of cannabis bud high in myrcene, a terpene that is commonly believed to provide relaxing effects. I am lucky this is legally prescribed in Australia. I feel so much for you not sleeping - nothing makes you feel worse and a lot of the medications are addictive. Cannabis on the other hand has a very low index of addiction and I feel great the next day. It is worth putting this in your filing cabinet as something to try but best get a good doctor to work with. Best of luck.

[ejaji in reply to Goldy700]

Thanks for ur reply...I am in India...will try to find out abt the CBD:THC oil 2:1. How is it to be be taken, how many drops? Any particular strain or kind I shud look for? Can u tell me the name of the exact one u use so I can search for a similar one here?

[TheDoDahMan]

I was sleeping only 2-4 hours per night because of RLS symptoms; then Dr B prescribed me low-dose methadone. Immediately I began to sleep 8 hours per night.

If it's legal where you're at, cannabis with THC content is very sleep-inducing for many people. Familiarize yourself with the literature regarding it.

Kratom also helped me sleep before I found a doctor willing to prescribe methadone for RLS.

I feel so bad for you - no sleep is really disabilitating. Best of luck.

[ejaji in reply to TheDoDahMan]

Thanks for ur reply... am trying to find out abt the cannabis with THC content. Any idea what the ratio of CBD to thc shud be, n particular strain or kind I shud look for?

[TheDoDahMan in reply to ejaji]

I don't know what kind of laws apply regarding cannabis in India. As regards the best ratio for CBD vs THC would be for sleeping, I'm pretty sure that Google will help. A lot may depend on how experienced you are with that product. The Indica strain is said to be better than the Sativa for sleeping. We are pulling for you!

[ejaji in reply to TheDoDahMan]

Can you pls let me know which vein/strain of kratom worked for u...n how is it to be taken (amount/technique)? Did it help with rls n insomnia both?

[TheDoDahMan in reply to ejaji]

The "red" strains are said to be the most potent as regards ameliorating RLS symptoms. "Red Borneo", to be more specific. I rotated between a half-dozen strains in hopes of not becoming too tolerant to any specific strain, but, to be honest, couldn't really tell the difference among them.

I would mix the kratom (2-8 grams, depending on how tolerant I had become) with 8 ounces of milk and a packet of any flavor of Carnation "Breakfast Essentials" (same as "Instant Breakfast"). I found that method to make the taste of the kratom quite tolerable.

It did help with both RLS and insomnia, in that the RLS symptoms were what caused my insomnia. I hadn't had problems sleeping before I "contracted" (is that the right term?) RLS. Again, best of luck!

[ejaji in reply to TheDoDahMan]

Thanks for ur reply. How long did you have to take kratom for? Did u face any withdrawal after stopping it. (Just wondering as I read online that some people even without prior rls got rls after stopping it. Maybe their dose was too high. I hope rls doesn't increase if I hv to stop it for any reason.) Do u still hv to take it sometimes?

[TheDoDahMan in reply to ejaji]

I used kratom for about a year and a half. It worked well to dispel my RLS symptoms until a gradually increasing tolerance made me see that I had to find another solution for the long term. In that time I increased my dosage from about 2 grams per day to 32 grams per day (taken in 4 separate doses). At no time did I incur any untoward side effects.

I have NEVER heard of kratom causing RLS after stopping its use. Of course, RLS symptoms probably would return if a person quit using it. I don't still have to use it because my specialist prescribes me low-dose (5 mg, twice daily) methadone which I have found completely stops RLS symptoms for the long term. It may have been that I felt NO withdrawal after stopping kratom because I immediately started the methadone at the same time.

Note that I cannot recommend kratom as a long-term solution for RLS, because of the growing tolerance problem. It served me well, however, as a stopgap solution while I tracked down a doctor brave and well enough informed to prescribe the low-dose methadone. If I have to be on this prescription for the rest of my life, that would be greatly preferable to not being able to sleep for more than 2-4 hours per day.

[ejaji in reply to TheDoDahMan]

Yes u r so right. Thanks so much for ur reply. Will try kratom.

[Jumpey]

I deeply empathise.I'm experiencing the same. I'm finding CBD oil with thc helps a bit.I obtain this via Project21/ Medical Cannibis Clinics. It's legal in the UK but not available on the NHS so I have to pay. On the advice of Dr.B I'm also going to ask my gp for Temgesic. Because I think the Tramadol I've been taking could be causing the insomnia. Huge good luck.Hang on in there.Things will get better.You could ask for a referral to a sleep clinic.xx

[ejaji in reply to Jumpey]

Thanks for ur reply...I will try to find out abt this...can u pls let me know what the ratio of CBD to thc is of the one which works for u? How is it to be be taken, how many drops? Any particular strain or kind I shud look for?

[Jumpey in reply to ejaji]

The oil I use is Althea THC 20.As the name implies it has 20% thc. You start with 0.1mg and build up until the dosage is effective.

[24Blue24]

I have suffered from RLS off and on for many years. I took trazadone for 20 years, and it helped a lot. But then, it stopped working for me. I was on allergy medication as well. After not taking an allergy med for quite a few years, I started again at the suggestion of a support group member (for sleep). My RLS started again. I then read antihistamines can worsen RLS, so I stopped taking the allergy medication. My RLS has all but stopped, and I have only needed to take Ropinirole two times in three weeks.I don’t know if this is the case for anyone else, but I thinking it’s worth noting.

[Sarasota16]

Try taking a probiotic.

[Battleground]

I had Insomnia and RLS for 40 years, read about Gabapentin and ask my Doctor to start me on it. Now at 15,000mg taken before bedtime I am sleeping regularly for 6 hours and no RLS. At 85 after years of sleep deprivation and above average RLS I am in awe of this medication.

[Guitarpickin]

I am so sorry about what you’re going through. Please try to hang in there. You will eventually find a solution-or at least a way to get more sleep than you’re getting now. I was an insomniac for nearly 3 decades, off and on, but mostly on, and know how debilitating it can be. Having a combination of insomnia and RLS is tough because the RLS rules out a lot of great drugs that help insomniacs. I know you tried zolpidem, but for me, the name brand medication (Ambien) was far more effective than the generic (Zolpidem). Just throwing it out there, in case you haven’t been exposed to both. As others mentioned, and I’m sure you already know, sleep hygiene is probably the single most important thing for you to undertake. But it is difficult to make rational, difficult, habit changes when you are losing your mind due to sleep deprivation. And of course, for insomniacs who are suffering the way you are, it would be best to avoid caffeine in all forms, ENTIRELY. At least until you get things under control. When things were at their worst for me, a couple decades ago, I had a doctor tell me caffeine can stay in your system up to three days. At that time, cutting out all caffeine was the biggest thing that helped me. Ambien was also a huge help, but it lost its efficacy if I took it more than three days in a row. So I made the difficult lifestyle changes (No caffeine. Going to bed at the same time each night and getting up at the same time each morning, even I’d only just gotten to sleep. No TV in bed-and of course no phones or computers in the evening. Getting out of bed and trying to do something else if sleep wasn’t coming….) and eventually got better. But it took a long time. Daily exercise is also a huge help. But no evening exercise. Switching beds or rooms was also something that was helpful somehow. I’m thinking about you and hoping for the best. Hang in there.

[JakeRLS]

It touches my heart that there are so many people giving you the best advice they can. I have had our last for a long time and have taken many of the drugs recommended to you. They have helped a different stages of my condition and many either caused augmentation or lost their efficacy. One that kept me sane was kratom. I was in between effective medications and eventually wound up on a low dose opioid. But before getting to that point and desperation I started using kratom. I think I used it a total of 2 or 3 months before the opioid. The first month was absolutely heaven I got a tremendous relief then began to lose its efficacy. So I increase the dose and then I had to increase it again and by the end of 3 months it was barely working. But it bridged the gap . I had the red Borneo powder and mixed it with orange juice. After a while I even started to like the taste. Best of luck to you.

[ejaji in reply to JakeRLS]

Thanks for your reply. yes I really appreciate everyone's advice so much, wish cud reply to each but right now no strength, can't even think/function due to sleep deprivation so first just trying to arrange some medicine to get relief. I want to try kratom, they had two different products "red vein" n "red Borneo"...right now only "red vein" available. Will that work, or red Borneo better?

[JakeRLS in reply to ejaji]

I'm sorry I can't answer that question about which is better. I would think that either one would would be better than none.