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Insomnia, in a very bad way: Hi all,I'm... - Cure Parkinson's
Hi all,I'm wondering if anyone has tried suvorexant or ramelteon for sleep. I've tried almost every other sleep medication. Also wondering if anybody has had worsening sleep after starting sinemet; my motor symptom are minor compared to sleep/fatigue and wondering if I'd be better off without it. I take 25/100 3 x per day starting a few months ago. My sleep has been deteriorating for years and I've tried CBT-I, ligh therapy, hypnotherapy, mediation, breatwork, Qigong and scores of supplements for sleep. If you have occasional insomnia, please spare me the the tips or supplement regimens that work for, this is something different and I really have tried them all.
My hobbies and social life have completely disappeared due to sleep related fatigue, and I have been struggling to exercise and work part-time, but don't see that continuing much longer. I live alone, have no family in town to help me out or provide company, and to be honest, life in this state isn't worth living. I'm currently taking clonazepam (0.5 mg) and it stopped my RBD and gave me 10 days of great sleep when I started it a few months ago, then my sleep went back to usual (although the RBD is still improved) and now my sleep has worsened further. My MD suggested I increase the clonazepam dose, but that doesn't seem to be more than a very short-term fix, with long-term negative consequences (although long term seems less and less a concern). I'm home sick from work today with a sore throat, feeling feverish and headache, but I don't think I actually have a cold or flu, its just my immune system overwhelmed by endless days of 2-3 hours of sleep deprivation. Other than those 10 or so days at the start of clonazepam, I've maybe had 10 nights of adequate/ refreshing sleep the last 10 years. Life has become more and more of a struggle and wondering how much longer I care to endure this.
Sorry for the self pity session, not sure where else to turn.
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Well there are some decent answers around, I have insomnia long-term as well and there are good answers but not if you say to muzzle people. Yes supplements don't do much if you have real serious insomnia, it's a relative thing, but people are genuine in their desire to help and you don't want to squelch that cuz maybe in there somewhere is the pearl you've been looking for. I mean if you're up anyway, then read them and then ignore the ones that don't fit. Anyway I have it bad like you doing I've developed a few ways and also I have had a professional experience on both sides of the desk. There are things to consider especially if your doctor is willing to think about your ideas, even if you get your ideas from, say, one of us. All you have to say is there are a few people on the list who are not just patients, they have been doctors and psychiatric specializing psychologists who also know something about psychopharm and if your doctor truly wants to help them he she it they them can keep an open mind when you come up with ideas.
Ramelteon isn't going to do much for you because all it is really is a melatonin receptor agonist.
For now I would stay away from the orexant medications like belsomra because you mentioned life is not worth living, it sometimes can give you side effects of a downturn in your thinking. And I'd report that to your physician.
Would need to have some detail about your complete medication list and medication history to talk further about what to turn to on the prescription front. Also there are some behavioral things to go along with that which definitely can make a difference, that is if you haven't already ruled them out.
Hi Marion, Thank you for your thoughtful reply. I will take your advice and try to stay open to all suggestions. I guess some of my deep frustration leaked out about not having anyone really being able to understand what my experience is like and the level destruction my insomnia has caused in my life and the level of effort I've gone to try to seek help, with nothing make any difference at all. It's just hard to endure telling someone about my sleep and being told, "have you tried magnesium, that helps me a lot when I can't sleep". I've just got to deal with the fact that people are just not going to be able to empathize with something they haven't experienced.
In the very early 1980s in a clinical internship with a psychiatric division of a medical school for psychologist and psychiatrists and therapists I was given a list of "survival rules" devised for us by psychologist from Texas Tech (his program was heavy on hard science), and one of them was "people will rarely "understand," so don't bother trying to explain." (Another was "people don't change just because you want them to.") It still holds.
Day night sleep reversal was one of my very earliest Parkinson's symptoms. Had it continued I imagine that I would be feeling just as you do. It was alleviated by levodopa medication.
Is your Parkinson's medication regimen adequate? Are you taking carbidopa levodopa? Inadequate Parkinson's medication may be part of the problem.
I am taking sinemet 25/100 3 x per day, but my motor symptoms are minimal. In fact, I don't think I'm benefitting at all from taking it. I'm pretty certain motor issues are not disturbing my sleep.
I have had a sleep problem since my teenage. Could sleep maximum 4 hours between 3 am and 7am. This was ok until I left university and med school.Often was an asset as a young doctor and within a busy hospital when I barely slept 2 hours.
From my 40s I assumed the tiredness was from my work pattern. Early 50s , rumbling aches , cramps from teenage etc and grinding to a halt revealed the Parkinsons.
Excellent response to Sinemet.
Since my mid 40s ,nearly 2 decades I have been trying to improve my sleep. Occasionally I got about 10 days of reasonable sleep ( nearly 6 hours)
Most of the time I now have a biphasic pattern where I sleep for 2 hours and then have nearly 3 hours awake and then catch another 2 to 3 hours.
I try not to fall asleep before 7.30 pm after I get back from work by avoiding the sofa.
I don't lie in bed when I wake up as that has not helped me go back to sleep. But if I get up and do some paperwork like paying bills or catch up on routine stuff like loading the washing machine or clearing the dishwasher /getting my bag ready for the next day I am more likely to feel like sleeping in 90 minutes. And get 3 hours after that.
I hit a wall of tiredness at 3 pm in the afternoon and get through that by doing a few wall push ups in the tea room or my office. If that doesn't work I go up and down the stairs for 2 floors
The fatigue was better after I started regular thiamine / Vit B1 in 3 week cycles.I can tolerate a maximum of 200mg a day. I started with 25mg and worked upwards.
That seems to have made the sleep settle better into pattern mentioned above and a few other minor symptoms.
My social circumstances mirror yours.
Life in general sometimes disrupts this fragile equilibrium too. I cannot handle rigid structured or a routine packed with biohacks although I am trying to up my exercise quality in line with emerging evidence.
Reflecting on it my third world upbringing helps. Even though I had a relatively privileged childhood , I also learnt not to assume that there was a normal pattern of life and not to rely on a health system or society to find a solution.
I am sure you will find something that works for you.
I tried it out after hearing about it from a similar forum like this.* several people post about it.
Possibly 6 years ago I was trying to optimise my control over Parkinsons symptoms ( non tremor, moderately severe lower leg dystonia ; moderate bradykinesia, some postural instability and very early onset of "on" dyskinesia after 3 month of treatment with Sinemet. Lost my sense of smell 10 years prior to diagnosis
I was a bit wary of trying the high dose and work downwards that came from Italy so I tried increasing from 100mg per day for 3 days in the mornings, then 200mg per day for 3 days and started feeling less tired. After a week I thought I would push it to 300mg considering that most people reporting here were taking much higher doses . After 10 days on 300 mg I felt jittery so I stopped for 3 days and then noticed the tiredness return so I went back to 100 mg and was satisfied with the effect it had on my mid afternoon fatigue, but after another 18 months had gone by I tried to increase to 200mg again but found it difficult to tolerate after a couple of months. However by then I could smell a few things occasionally with an altered smell (coffee, garbage, occasional floral perfumes) and noticed I did not feel the need to pass urine as often at night (although I did not have any continence problems and did not have to get up , it would wake me up) and some more improvement in postural instability.
That was when I realised that the 3 weeks probably represented some saturation of thiamine on some cell types ; and this worked well. I still was not disciplined enough to stick to this. Recently as in the last year, I woke up to the fact that my stoic and amazing 90+ year old mother is slowing down and I need to be able to look after her too. So have been on an optimise management drive again. That when I noticed the sleep quality was better on this dose of thiamine.
I use thiamine hydrochloride (which has a shorter half life ; so it gets out of your system faster when the "jitteriness" starts for me) Most of the Vitamin B sold widely is thiamine mononitrate; including the supermarket and health shop products that do not specify.
I do not have a preferred brand but will do not buy on the internet unless it is directly from an approved pharmaceutical distributor. My local pharmacist obliges as it is the only thing he gets money from me . In the UK I do not pay prescription charges as I am over 60.
I also take a low B complex tablet 5 days a week off the shelves (with regular daily recommended (RDA)intake dose. Five days a week because I have a nice brunch on the weekends and the B complex is a part of a go to work ritual of more regimented breakfast.
I try not to be rigid about any medicine or supplement but am lucky that I actually liked pharmacology as a medical student and still research anything I prescribe differently at work.
I noticed your mother is the one who has Parkinson's.
The elderly are more prone to high blood pressure spikes on thiamine higher doses and this can precipitate strokes.
Likewise a large dose of magnesium absorbed quickly in an older person can lower your blood pressure and slow your heart too quickly by direct effects on the heart causing syncope ("faints") and falls.
I haven’t had long term chronic insomnia but I did have a period of months where it became an issue. The think that helped me was CBD oil (3000mg full spectrum) starting lowish to ensure no problems, then increasing amount. I researched to find a good quality source as there is a lot of weak poor quality stuff out there.. Apologies if this is a tip that you’ve tried before.
You don't really explain what the underlying causes of your insomnia might be. In the case of my partner she's had Parkinson's - induced insomnia for years. No levodopa doses through the night means no sleep for her, not a wink. That's mostly due to rigidity and dystopia, she's just incapable of finding any comfort in either a bed or chair when she's in an off state.It's ok to minimise the efficacy of magnesium but it's actually one of the most powerful tools in the toolbox, so when people suggest taking it they are generally on the right track. My wife started taking a magnesium glycinate 665 (120mg available) with every meal, religiously, and as a result I no longer have to massage her neck and shoulders for half an hour a day. And it also has potential benefits with insomnia. What about CBTi therapy? Number one, though, is getting your levodopa therapy right, maybe by nightime dosing or perhaps use of the controlled release version at bedtime.
Thank you puretone. I don't have any motor issues at night, just mild bradykinesia, so it takes me a little extra time to get out of bed. I don't know the specific cause of my insomnia. I know it's not sleep apnea because I have had surgery to correct that, verified by sleep studies. I know its not rigidity or dystopia. I've had insomnia for decades, but continually worsening, with starting to experience RBD about a year ago. So my assumption is it relates to gradual dysfunction of centers in the brain that regulate sleep and was a prodromal Parkinson's symptom, now a diagnosed Parkinson's symptom. I've been practicing CBTi for years, definitely helpful, but doesn't address the root cause.
I've been buying Carlyle brand recently because it's readily available. There's another form called magnesium l-threonate or Magtein which is able to cross the blood brain barrier, I guess it's a matter of trying the different options and see how she goes. I'm surprised how many with PD are able to get by only taking daytime levodopa doses. My partner can't get by without levodopa at night, without it she's restless, uncomfortable, barely able to move and dramatically overheats. Maybe your Mum's levodopa doses should be reviewed to include overnight?
I’m right there with you. I was also on clonazepam for a while. One I got my prescription refilled, and then I thought I lost the bottle. I was completely out so I had to go cold turkey. Got brutal rebound insomnia. Before I found the prescription in my coat pocket a few days later, my movement disorder specialist put me on trazodone. I started at one. That was like a Tic Tac. It did nothing. My husband reminded me that he has some CBD gummies. Now I’m taking one and a half trazodone plus a gummy. That seems a little better. I’m still waking up, but I go back to sleep. I have some fast-dissolve melatonin. I break them in half and keep them on my night table. If I wake up and can’t fall back to sleep, I take one of those. Not ideal but better.
Thank you Jocelyng. I appreciate the ideas. Trazadone was a bad experience for me, but maybe a small dose of rapid resolving melatonin would get back to sleep, so I'll look for it. Thanks
Hubbies MDS is trying different anti seizure meds for RBD. Lamotrigine and Depakote (valporic acid). He says the theory is some PD (especially advanced) involves frequent mini corticobasil seizures, and this is disrupting deep sleep.
I guess gabapentin also is in this class.
Hubbies extremely sensitive to meds and the Lamotrigine made him psychotic, but a tiny dose of depakote seems to possibly be working…still playing with it.
We’ve tried a ton of supplements, and of these melatonin plus L theanine seems best- also recommended by Dr.. (Lemme sleep gummy on Amazon) He also uses a CPAP which helps.. and make sure you get sunlight in the day.
Thank you. More sunlight is the top of my priority list. I'm in this viscious cycle where I'm so tired from crappy sleep that I can't get off the sofa. I know its a bad thing, but lately the lethargy has been impossible to overcome.
I've dealt with hard core insomnia off & on throughout my life. Getting a disease where insomnia is a symptom is my worst nightmare. I'm sorry you are going through this right now because it's just awful.
When I reduced C/L dose because it was making me so anxious and depressed, my sleep did get worse. Now I take 3mg of melatonin and gummies with Delta 8 or Delta 9 THC plus CBN (or not, but this is the type of CBD that is specific for sleep). CBD alone has no effect on me. If you don't have a dispensary near you, it can be ordered online.
Companies I can recommend are Creating Better Days (creatingbetterdays.com) and Wyld, (wyldcanna.com). Ever since I started using these products I have been sleeping well. Much like you, nothing else worked for me (except for klonipan, which I've built up a tolerance to and have been weaning myself off).
Hi beatles4ever,Thanks for the suggestion, I can't tolerate more than about a 1/2 mg melatonin or I feel rotten the next day. I've tried a cbd/cbn combination and found it pleasant but not helpful for sleep maintenance, but I'll look into the product you mentioned, maybe a different blend of cannabis compounds will work better.
I am so sorry you had so much trouble with sleep. Do you know if your thyroid function is optimal? I had sleep issues ever since childhood, tried so many pills, almost thought I may not survive the insomnia. Things are better for me now that I finally know I have central hypothyroidism and on thyroid combination therapy. I am yet to gain energy and strength, but my sleep is sooo much better even on the tiny dose of medication the doctor prescribes me. My brain was hungry for thyroid hormones.
Hi Gavan;That is a great suggestion, and something I've suspected and worked on for years. I've had autoimmune hypothyroidism since the late 1990s and have tried combination T3/T4 drugs, T4 only drugs, T3 only drugs, thyoidectomy, and nothing helped. That's one of many things I tried before I had a Parkinson's diagnosis., which was a long time coming. My thyroid labs are all normal andfrequently checked.
If I was to describe one of my main concerns before my PD diagnosis, it would be severe sleep deprivation. I hadn’t had a good night sleep since my daughter was born (25 years prior). I even went to the sleep clinic. Not one suggestion worked for me. When I was diagnosed with PD, I did retire from teaching. Getting no sleep and having PD just didn’t work with the high energy required for teaching. I can now say I have worked out a system that works for me. Mind you, I am 10 years past diagnosis. For me it’s about consistency, I decided to go back to when I slept the best, which was when I was a teenager. When I went to bed real late exhausted and slept in real late. Why not, I’m retired?
My sleep hygiene routine requires staying up as late as I can with no naps past 3 pm. I stay up watching routine tv shows like Suits, Greys Anatomy or Seinfeld. I aim for 1 am. Right before I call it for the night I take 200/50 extended release levo/carb (Sinemet). I go to the bathroom and then I put one earphone in and listen to a mundane show and I let myself fall asleep while listening. If I wake up before a decent sleep of around 7 to 8 hours, I get up go to the bathroom and put my earphone in and put my mundane show on and return to sleep. This goes against all sleep experts advice of not watching or listening to anything before bedtime. I believe my brain needs the mundanity of these repetitive shows to unwind.
I also actually go to bed every night about 9 pm, I do my nightly routine, I read or watch tv, and then I follow my pattern as above.
I believe the repetitive pattern, the staying awake till as long as possibly can (like a teenager), the extended release levo/carb and the mindless media all contribute to my sleeping well. Not having a work schedule was necessary for this to work though.
Having horrible sleep isn’t a good way to live. I hope you find a sleep hygiene method that works for you. I finally did after 35 years and I feel so much better.
Have you considered seeing a sleep medicine specialist? Here we're talking about a physician or psychologist employing an array of nonpharmacological approaches including a specialized type of cognitive behavior therapy for sleep disorders. (I haven't seen one, although I intermittently suffer from long periods of severe insomnia, and middle-of-the-night waking due to pain from muscle rigidity. I now set an alarm for 1 a.m. so that I can take extra meds before I am in an "Off" state. Of course, once I wake up to take more meds, I often have trouble falling back asleep. I can then be awake for hours or just give up trying after 4am. ) In any case, I suggest that you "do as I say, not as I do." and seek the guidance of a sleep medicine specialist.
Hi Raphaekg, I've seen many sleep specialists over the years and have tried cognitive therapy numerous times as well as currently. Its a great tool. Sure psychological factors can worsen parkinson's insomnia, but there's also damage to parts of the brain that regulate sleep. Hard to know for a given person which is contributing more. For me CBTi it has had a small effect. After I got covid last year , my sleep dropped from about 6.5 to 5 hours ( I need about 7.5 hours to feel refreshed), I started serious CBTi and over time clawed back about an hour of sleep, not surehow much of that improvementmay have been due to recovery from covid.. I'm back to 5 hours again and CBTi has yet to have an effect. I would encourage everyone with sleep issues to try it, Thank you for your thoughts.
not sure what else to help you. Have you ever completely detoxed your body of pharmaceutical meds and started fresh with only natural therapy? I had to become my own doctor.
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Dr Mark Porter article - link between Parkinson's Disease and sleep disorders
WHAT IS YOUR BEST SLEEPING AID? Zzzzzzzzzzzzzzz!
A nightime story some of you might find entertaining.
