Couldn’t resist this allusion to a song by the Smiths and I do live in Birmingham (not Alabama!).
I was surprised when asking for a search to be done on our site how few posts there were with Panic in the title. I’m panicking quite a lot recently due to obvious progression of the disease. I’m panicking because nothing I tried over the years has stopped it (I thought I knew best). Recent chronic lack of sleep has virtually stopped my attempts to return to vigorous exercise and I’m headed down a black hole seemingly. I’ve got DBS lined up but I have real panics during the night, mostly when I wake up and - for the millionth time - fine myself virtually immobile. I know that deep breathing is meant to be the thing but it rarely seems to give me the peace that I hope for. So I just wondered why this topic hasn’t been discussed much before and how you all deal with times of fear about the future and dire situation. Thanks 🙏
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jeeves19
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Hi Jeeves. I'm sorry you're having such a rough time. I understand it's tough to keep a smile on your face when you feel like crap, but you have to keep fighting it. Self talk helps. Look in the mirror and tell yourself you need to take control of your mind and body and then take some of those deep breaths. You say they are not helping, but are you deep breathing with an open mind?
What meds & supplements are you currently taking ? Are you exercising? You always seem to be up on all the latest. Sometimes it's better to go with the saying "less is more"?
Hope this helps at least a little. I think DBS will help you. About 15 yrs ago, I wouldn't have said that, but they've learned a lot about it and everyone I know that has had it lately has been thrilled about what it has done for them.
have you tried clonazapam? Hubby takes a tiny amount, 1x 0.5mg cut into 1/4s spread over the day. That and the Hardys Den with added vitamers have completely eliminated the anxiety.
try it at a very low dose then slowly increase only if you need to. He was given enough for 6 per day and he only takes one.
It works on the GABA pathway instead of other things that affect dopamine and seratonin. My hubby has seratonin and dopamine pathways that don’t work well so those types of drugs make him highly anxious and this seems to be the only type of thing that doesn’t seem to give him horrible side effects. Doctors don’t like it as it is addictive (what isn’t?) and also people often sell their prescriptions on the black market to make money.
It does take a few days to reach an equilibrium and the effect is gradual so not drastically up and down like other things.
Plus if you haven’t already tried Hardys den (can you get it in the UK?) with added vitamers try it at the clinical dose of 12 per day for at least 3 months . It really does help hubby.
As per my experience, exercise lessens the symptoms and greatly reduces stress. However the intensity of exercise should be as per our physical capabilities. High intensity exercise does not mean that we stretch our muscles beyond our capacities or go beyond our endurance. Remember we should always listen to our bodies. A slow walk is better than no movement
Hi Jeeves i went into melt down for the first year after being diagnosed with PD however this site and the encouragement and suggestions for supplements to try has given me hope. Stage 3 trials of PD drugs cant finish quick enough for me. I do lots of exercise first thing including plate vibration which helps with stiff muscle's and a tread mill which forces me to keep moving ....exercise is a good stress buster.....something that's just occurred to me i wonder if anyone has tried a qualified hypnotist to help with stress and dark thoughts ? Wishing you all the best Geoff
I think that’s half my problem though Geoff. I can’t do much cardio after 7 years. I used to do 40 minutes on the exercise bike several times a week and now can manage 5? Some of this is due to chronic lack of sleep which I think is the root of much of the trouble. Thanks for messaging though.
It's hard to do better at anything without sleep, so that seems like a good place to start. Studies show that lack of sleep is detrimental to your health. You already know that trying to improve your quality of life when you have PD is all about trial and error. If you haven't already tried it, melatonin does help some people sleep, but not everyone. I have noticed that some say it does not help them with sleep, but the ones who say it helps with sleep, really like it and say it helps a lot. It has an excellent safety profile and at least 3 human studies say it helps people with PD and it is not addictive, so it seems like a reasonable thing to try.
Art. A bit long winded on my part but I had another lousy night and have tried to deeply analyse where all of this is rooted. I’d appreciate your views:
Bedtime isn’t very pleasant for me and hasn’t been for several years. Parkinson’s causes me to struggle with actions that wouldn’t pose a problem for a healthy person eg.turning over in bed, moving and so a limb doesn’t get numb from pressure, sitting up to adjust your pillow height etc. These have always been a challenge but as the years go by, they are becoming more difficult and frequent. About 3 months ago, the drug that had been my mainstay for sleep (Mirtazapine), lost its efficacy. I was put on Melatonin (4mg) and I added a request that the Dr add a sleeping pill that I was to use intermittently in case of ‘emergencies’. But neither the melatonin or sleeping pill give me any sleep. My theory is that the aforementioned nocturnal micro-episodes ie a stress response due to feeling trapped or immobile have added up and have resulted in the ‘fight or flight’ mechanism being switched on semi-permanently. So the suggestions of not looking at one’s phone before bed, the hot milky drink, the commercial sites that offer guided meditations etc are all well meant but don’t really tackle the basic problem: whenever I need to move in bed, it’s always a stressor that builds on the thousands of previously stressful incidents. I don’t know how to get out of this jungle!
I do not have any advice for how to move better in bed, but, Qigong meditation seems to make up for my lack of sleep. I generally wake up several hours before dawn. I then spend most of the time until dawn abiding in Divine Bliss/Chi meditation. Qigong is not for everybody but it works for me. Details here: healthunlocked.com/cure-par...
I presume you already tried high-dose thiamine. If you have not tried cinnamon it is worth a try. My report here: healthunlocked.com/cure-par...
I, too, have poor sleep. Not as bad as you or for as long - yet.
I have so far avoided meditation, but am getting desperate enough to try it now. I believe it will be beneficial. That and to tire myself out thru exercise is about all I can offer. Exercising on no sleep is the last thing you want to hear, I know.
Sleep aids & drugs lose their effectiveness over time, altho I have upped my dose of Melatonin to 40 mg to 60 mg per day.
Drugs don't provide quality sleep for me, so I don't take them.
I've been to sleep specialists at the VA and they said that worrying about sleep just makes the situation worse. That, exercise more and meditation was their recommendation.
Thanks for at least stopping by Marc. God to hear from you. I must admit that I'm quite taken aback at the amount of melatonin you take! I had no idea that people could take such an amount. I'm on 4-6mg and so maybe I need to up things a bit? But I hear what youre saying: there's only so many anti-depressents, sleeping pills etc that we caan take realistically. There comes apoint when you have to say 'stop'. Good luck with the meditation. I love the idea of it but always seem bored and quizical about just what I'm doing counting breathes from here to eternity?
I periodically use a sound machine (rain or 'white' noise, etc.) and I've recently been trying 1/2 a trazadone (25 mg) which has helped - until it doesn't.
I have a question for you , if you lay awake all or most of the night, can you fall asleep during the day if you are relaxing?
I can see you are in a very difficult way when sleeping pills are of no value. The strongest sleep aid I have used is medical marijuana of the indica variety with high THC content (30%+). The problem of course where you are is availability which looks rare, but possible based on this :
Even high dose melatonin would be a problem for you as no doctor in your part of the world is likely to prescribe such dosing. There are natural ways to increase your melatonin levels which would be overall healthy for you . I wrote about 5 ways to do that here :
One of the important ways that I mentioned to get melatonin in the above link is to get exposure to early morning and afternoon sun and this practice also helps to try and reset your sleep circadian rhythm. The early morning bright sun exposure especially. People with PD have reduced melatonin production on top of the normal age related decline of melatonin.
As far as movement in bed, some forum members have reported that slippery sheets such as silk offer less resistance to moving about in bed.
Some people find that a quarter to a half teaspoon of bicarbonate of soda (baking soda) in a glass of water helps them to relax a bit and helpful for sleep. This is likely to be additive to the magnesium below. This will also be useful if you have Gerd or indigestion in the evening.
Another consideration is applying mag oil to your neck muscles, chest and front and back of the shoulders allows those muscle groups to relax . Those particular muscle groups when tense can be a major contributing factor to sleeplessness. Taking an oral absorbable form of magnesium such as this may be additive to the mag oil. This supplement has 3 absorbable forms of magnesium and it also targets the brain :
Another consideration is taking 25 mg of zinc picolinate plus your 4 mg melatonin an hour before bed which should also be additive to the magnesium based on this research :
Some people find that GABA helps them get to sleep by slowing brain activity, but you will have to check with your doctor to make sure it is compatible with your current meds :
GABA may be useful as an afternoon supplement as it helps get the normal increase in melatonin going. It has an opposite effect if taken at night.
Wearing the soft fabric blackout glasses to sleep may potentially help increase your sleep time and help to get your circadian rhythm in a better place.
Ear plugs can also be helpful because they can help you disconnect from the wakefulness.
Well that's about it for now, jeeves. If I think of others that might be beneficial for sleep I will reply to you in this thread.
Art. You are one helluva kind guy. Your parents did a good job on you! Thanks a bunch. Last night was a big event: I took 10 mg melatonin and a sleeping pill and was out for 8 hours. Such a nice feeling to wake up and realise you’ve slept even though most rightly take it got granted. The big, big doses of melatonin are outlawed by the patronising ‘we know best ‘ British government. In fact you can’t buy it here at all recently which really’ pisses me off. Luckily my GP is happy to prescribe me SOME.
The nights sleep has just enabled me to go 20 mins on the bike. That’s what I need to break: the no sleep means no vigorous link.
Yes. You were quite right, I can’t sleep in the day. Never have although I wish I could 😂.
Here’s a quickie for you : as regards getting melatonin: can you get it generated by sun though a window or must it be directly onto your skin
Thanks again Art. To be on the receiving end of another’s compassion is a powerful tonic and without hope, we’re nothing. Blessings.
I'm very happy to hear that you finally got a good nights sleep, jeeves!
My mom and dad would be very happy to hear your kind words!
Unfortunately, the red range of light from the sun that causes your body to produce more melatonin does not go through glass windows very well at all and if your windows are the Low-E variety, then infrared will not pass through them.
I hope you saw my other reply to you last night regarding cinnamon/melatonin and sleep!
Regarding increasing your exercise time and endurance, I am currently conducting a self experiment which has allowed me to increase my endurance and consequently reduce my morning walking time over the same distance to a place where I have never been able to get to in the past 5 years, though I have tried hard to get there previously. I am almost done with the experiment and will post my results on the forum soon.
As I mentioned in my previous reply to you, I would add any new information on insomnia to this thread as I find it in reply to you. In that line of thinking, a brand new study (Dated August 2022) came out today suggesting that cinnamon extract may potentially be beneficial for sleep, at least in the animal model that they used :
' The cinnamon extract increased serotonin and melatonin levels and decreased norepinephrine levels in the insomnia-induced group. Cinnamon extract has potential as an anti-insomnia medication through hypothalamus-pituitaryadrenal axis improvement and brain neurotransmitter regulation in an animal model of insomnia. '
Combine this information with the information that park_bear has reported regarding cinnamon being of benefit for people with PD and add in the safety profile of cinnamon and you can see why I am passing this information along to you. In that line of thinking, a discussion with park_bear regarding cinnamon seems very appropriate about now!
The animal dosing can be converted to approximate human dosing. Converting the most effective animal dose used in the animals was 50 mg/kg/bw and this converts to approximately 8.1 mg/kg/bw in humans. I weigh about 80 kg, so if I was going to test this on myself, 8.1 x 80 = 648 mg.
much appreciated PB. I try to meditate during the night but find that my agitation has somehow become so pervasive that I’m counting breathes etc but I just feel the same. I think that I need to develop my night time drug regime to be more effective? Do you take any medication for the night?
Based on personal (husband's) experience, here is what works for him:
Dr. Dean's liquid mag, Pharma GABA sup, SeroTrex (combo of L-theanine and 5HP) and Magnolia Extract. Occasionally, he adds 3mg Melatonin.
He had a very rough 3 months (Jul-Sep 2022) after his fall in mid-July. He was laying flat on his back at the hospital with aspiration pneumonia and acute urine retention. In addition, he had a PEG procedure as he could not swallow anything. Rehabilitation followed for 2 months, being discharged on October 3. It was an extremely rough road to recovery, but he did recover, and he is now walking again almost two blocks (always using his trekking poles).
Just like you, he couldn't sleep due to nocturia, and he was feeling miserable every day. He now has a leg catheter and although it's not what he or I wanted, he feels good every day as he is able to sleep (7-8 hours) with the help of the above supplements.
Kia matey. I never went for it . I sat down with my wife and watched the promo stuff but to tell you the truth we weren’t convinced it was strong in evidence claims. Do you think otherwise?
I highly recommend it.It’s an amazing gadget . Helping balance, stifness and slowness. You will notice it’s efficacy when you go for a walk with the CUE1. It helps muscles to fire again.
Hello,I wanted to add a few pieces of information:
- I recommend make a sleep study (polysomnography). One shouldn't manage such severe sleep disorders lightly when it is taking such a toll on your parkinson's and your life.
So I suggest you ask your GP to be referred (urgently) to a sleep center with some PD experience. One PD expert in the UK who I believe (based on a conversation I had with him back in 2019), really considers sleep disorders as an important matter, requiring proper medical treatment, is Professor Ray Chaudhury at King's. It may be a long wait, but I guess that an appointment with one of the members of his team may be a good way to start.
Sleep medicine is unfortunately in pampers stage completely ignored by many neurologists. Nevertheless, I came to the conclusion that my sleep disorders were having more impact on my quality of life than my YOPD. Not that my PD is light, or easy. But lack of sleep has caused me significant neurological deterioration several times. This is why I came to consider it was a key prognostic factor for my PD.
Today, I am starting to think that treating sleep disorders in people with PD should be considered as a "treatment to slow disease progression", in other words, a Disease Modifying therapy. I'd be happy to hear from others. If you feel that way too.
- You can buy high dose melatonin easily on iHerb, at a reasonable price and I'm sure on Amazon.
- CBT or cognitive behaviour therapy is recognised globally as the #1 tool to tackle insomnia. Of course it sounds like feather weight player for our monstrous problems but coming from a fellow sufferer, it does help. Free apps are available online.
- you definitely need to try medical cannabis. I didn't try it yet but I know a few pwPD, who shared a great experience for their getting some sleep.
In conclusion, like you, multiple sleep disorders have contributed together with the PD to destroy my life, being an element of disease severity.
I didn't panick, but I have felt dispear. That nobody could save me, nothing could even help. These things here eventually did, combined with some lyrica and sleep tablets.
Go for it, and update us. Good luck.
PS: there's also a community on this platform for people with restless legs syndrome. In case it appears you have it.
Sorry, I forgot 2 recommendations:- many pwPD need ldopa to fall asleep and get a fair night of sleep. So if you dont take ldopa for your night time, this is something to discuss with your neurologist.
- when having severe insomnia, exercise every day. These days I have managed my sleep problems. From time to time, I have a white night. I observed in every case, that I hadn't exercised that day.
my story is that I was a vigorous exerciser until some daft operation I had on my foot about 3 months ago. I wasn’t able to do any cardio for about 8 weeks. I cannot underestimate the inroads Parkinson’s made during that time. Big mistake to have elected for this. I rue the day and still not convinced that I will be able to reverse things to how they were. 🤔
I am sure you will. First because exercising is such an amazing medicine for pwPD. You will restart progressively, with short and accessible exercises only, be it walks, be it standing from a sitting position once at a time. Exercise until you are tired, until your breath is faster, but don't be short of breath. May I ask how old you are?
Also, if you look online, you will see that rehab physio use virtual and augmented reality (VR and AR). There are several mechanisms believed to be behind their benefits. But you don't have to use VR or AR. Let us consider that bringing you back to exercise is a sort of rehab, instead of buying a VR device, you will use your brain. I will ask that twice a day you imagine yourself, exercising. Be it walking or something else, but the exercise I want you to see yourself doing should be the exercise you are able and plan to do. Think how much and how hard you feel you will be able to do and picture yourself doing it in that quantity. Please be very specific, including in sensing the fatigue, the heart rate and your breathing. Can you? Likewise, on the 4th day of exercising, I want you to visualise your improvement, that will occur on the 5th day, and how you enjoy it, and so on: the increased amount of exercise, the hardship then improvement.
Don't forget to be exact as you can in the details, and this will be you engaging your brain to get ready getting back to exercise.
Nevertheless, don't do more than you are able to do.
Now if for example you are just able to have a 5 minutes walk, then please do 5 minutes in the morning, 5 at 1 pm and 5 at 6pm.
In the same way you engaged your brain for exercising, visualise yourself improved in a way that will please you. Positive thinking.
The increase of your exercise performance will depend on your sleep. And this depends on the reason you don't sleep. It seems however that it has been precipitated by stopping exercising.
But there may be something else, such as anxiety or whatever. Try to meditate in spite of the challenge it is.
I suggest that every 5 days you do 50% more, say for 5 days you did 5 minutes 3 times a day (15 min) , next 5 days you will do 22 minutes and a half (3 * 7 and a half min). And if you can't please try 4* 5 min.
BTW, next time you need such kind of a surgery don't book it before the surgeon arranges for you exercising during the recovery time. I mean someone should have cared for that... it could be the GP, the neurologist but someone had to.
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Mom of triplets, spouse with Parkinson’s 
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