Insomnia caused by intense internal agitation

Lucinda

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Hi

I have a very specific symptom where I experience an intense internal agitation/restlessness in my chest.

I started getting it when I first developed ME 18 years ago. It was severe and I barely slept for years. I used to have to exercise to get rid of it so I would exercise then crash, exercise then crash.

In the end being put on nightly clonazepam (3mg) finally eased it enough to sleep again. Then NAG helped too.

I have stayed on both ever since. I did reduce my clonazepam to 1mg though. But I did it very slowly and was fine.

However in recent months this problem has started to return. I have not slept for 5 nights in the last 8 because I am so agitated.

I can best describe it as an agitated/wired/restless feeling that is very intense and makes lying down feel like torture.

I feel an intense urge to exercise but I am too ill to properly exercise these days so I target where I most feel the agitation which is my chest. My chest feels like it’s burning up. I feel the need to stretch my chest constantly by keeping my arms over my head or other similar things.

Does anyone have any idea what this problem is and what I should do about it?
 

Countrygirl

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Hi

I have a very specific symptom where I experience an intense internal agitation/restlessness in my chest.

I started getting it when I first developed ME 18 years ago. It was severe and I barely slept for years. I used to have to exercise to get rid of it so I would exercise then crash, exercise then crash.

In the end being put on nightly clonazepam (3mg) finally eased it enough to sleep again. Then NAG helped too.

I have stayed on both ever since. I did reduce my clonazepam to 1mg though. But I did it very slowly and was fine.

However in recent months this problem has started to return. I have not slept for 5 nights in the last 8 because I am so agitated.

I can best describe it as an agitated/wired/restless feeling that is very intense and makes lying down feel like torture.

I feel an intense urge to exercise but I am too ill to properly exercise these days so I target where I most feel the agitation which is my chest. My chest feels like it’s burning up. I feel the need to stretch my chest constantly by keeping my arms over my head or other similar things.

Does anyone have any idea what this problem is and what I should do about it?
I know from personal experience how tortuous this is.

As soon as I exceed my energy envelope, it is triggered.

One thing that helped overcome this and enable me to get some sleep is baclofen, but it is addictive and the withdrawal is horrible, so only take it occasionally.

I also rely on increasing the amount of surmontil for a night alongside zopicline.

I hope you find something to relieve this distressing symptom.
 

geraldt52

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I'd be very surprised if it isn't a consequence of long term Klonopin use. It sounds as if you have understood the risk, and what you probably need to do, so I won't give that lecture. It isn't unusual for benzos to eventually cause the very symptoms they are used to treat. Most doctors would probably advise you to increase the dose. I'd caution you not to go down that path...
 

Lucinda

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I'd be very surprised if it isn't a consequence of long term Klonopin use. It sounds as if you have understood the risk, and what you probably need to do, so I won't give that lecture. It isn't unusual for benzos to eventually cause the very symptoms they are used to treat. Most doctors would probably advise you to increase the dose. I'd caution you not to go down that path...
So what would you suggest?
 

Lucinda

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I'd be very surprised if it isn't a consequence of long term Klonopin use. It sounds as if you have understood the risk, and what you probably need to do, so I won't give that lecture. It isn't unusual for benzos to eventually cause the very symptoms they are used to treat. Most doctors would probably advise you to increase the dose. I'd caution you not to go down that path...
And no I didn’t know this was a risk. I was prescribed it years ago by Dr Myhill who had been happy for me to keep taking it and frequently encouraged me to take more. However I didn’t take more after 3mg even though she told me to as she said good sleep is essential.

Since she stopped being able to prescribe NHS GPs have been giving it me. My NHS GP and consultant have not said my current insomnia could be down to clonazepam. They think I’m anxious and have prescribed Citralopram. However I have come on here to see if others have other views.
 

lenora

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Hello @Lucinda,

We're probably years apart in age, but if you go to the bottom of this page there are articles about ME, suicide, etc. We don't often read the other side of our "journey."

I know that people in the UK are particularly sensitive about psychiatric problems (with good reason, I may add), however....some of us need these meds. I tried natural means (& I mean everything, vitamins, minerals, herbs, supplements, etc.) to bring me out of what began as light attacks of anxiety (I'm assuming Dr. Myhill picked this up on you....if not, I don't think this particular drug would have been prescribed).

There are many, many things that can become addictive. I was able to get out of my first round of anxiety myself, but I was ever so much younger then. You can read elsewhere about my journey.

I'm now on xanax, and yes....I know it's addictive. During a recent hospitalization I was taken off it and my husband discovered that the "new" drug was every bit as addictive. My neurologist was furious at what had been done to me....it was just suddenly stopped. But the new drug was also addictive, I thought it was rather odd that the other doctors never picked up on that until the material was presented to them.

I do believe that we can develop emotional addiction to almost anything....it's up to us. I also know that drugs have to tapered down slowly, and even then there are no guarantees.

I've been on baclofen and it's a very strange drug. Robaxin may relieve your chest discomfort....perhaps it's just something you're going through and will need a bit of help with off and on. Only you know; only you can make the decision.

I take vitamins and supplements even now. I do believe they help us, but seldom do they cure....very seldom. As a victim of anxiety that led to panic disorder and almost ended my life, I think you should have your drugs reviewed, seriously think about what your condition is, get into some type of therapy....I even bought the AA blue book to help me through my first round.

I have very long periods of not sleeping....just like you're describing. I keep myself busy with many different things. The nights pass, and while it wont' kill us, it certainly isn't helpful at all. I've used natural physcians as well as M.D.'s and at my age, I'm suffering from a whole host of problems. It's difficult, I know. If you can get in and out of the bath....try Epsom salts (mg.) and you may find enough relaxation through them. Keep your electrolytes in balance....we do have to be our own doctors b/c of so many symptoms.

We're all individuals, some so much worse than others....no question about it. Yours, Lenora.
 
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Wayne

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They think I’m anxious and have prescribed Citralopram.
Hi @Lucinda -- Are you currently taking Citralopram? If so, that could be your problem. I once tried this drug, and knowing I had a very sensitive system, started out with 1/6 of a tablet. It made me feel like I'd drunk several cups of coffee. End of experiment.

Good luck tracking down what's going on with your intense agitation. These days I use a combination of self-acupuncture, castor oil packs, various kinds of tapping and energy balancing techniques to achieve a pretty dependable calming down.
 

Judee

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Does it feel like inner vibrations or tremors?

I get it like @Countrygirl mentioned when I've pushed past my limits. I find that ginkgo helps but I only take a pinch because too much can cause tachycardia. The ginkgo is nice though and helps with my tinnitus as well.

If you decide you want to try it, make sure you can use it with the medications you are on first https://www.drugs.com/drug_interactions.html

Edit: Oh, and another very good site for seeing if others are having a similar reaction to a medication is https://www.askapatient.com/
 
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GreenEdge

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Hi @Lucinda,

I also experience an agitation/restlessness that makes it impossible for me to settle and fall asleep. I couldn't sense where it was coming from, however I found a way to relieve it that (in my case) implies that it's caused by a pinched sciatic nerve. To relieve it, I stand on left leg, bum back slightly and lean forward, lift right leg sideways and place on a bench top or something of similar height. Usually that's enough and I get a crack sound from left hip. Not instant relief but I think it helps. Stretching hamstrings first also helps a lot by removing tension on lower back helping those muscles to relax. With that preparation done, if I then try to fall asleep laying on my stomach, relief comes within a few minutes. Somehow, laying on stomach relieves pressure on sciatic nerve - I can then relax and fall asleep.

In your case, it might be a "nerve entrapment" in your chest.
https://www.ecosia.org/search?q=nerve entrapment chest&addon=opensearch

I have a friend who used to get that and get relief from a single visit to a musculoskeletal doctor who gave cortisone injection around the area of nerve entrapment.

On medications: I used Baclofen, Lyrica and Mirtazapine together for many years, but instead I now use Cannabis Oil and find it's better in every way. At first I didn't get much from Cannabis other than enabling me to get off Lyrica and Mirtazapine. I also found it a much better muscle relaxant than Baclofen so I stopped taking Baclofen as well. I found Baclofen muscle relaxation to be incomplete - the muscles that didn't need it become too relaxed and the muscles that did need it remained partly in spasm resulting in ropy muscle fibers.

With Cannabis I get complete muscle relaxation resulting in smooth muscle. I also find it enables my brain to do new stuff, like muscle movement in new ways, eg. Imagine you're a fish and move your spine side-to-side in waves up and down. Or even a complete whole body massage by randomly twitching each muscle. And go into and out of a very deep state of relaxation (your in complete control) by focusing on slow deep breathing and learning to relax deeper.
 
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Does anyone have any idea what this problem is and what I should do about it?
Sounds like something in the direction of Restless Legs Syndrome (RLS). I have RLS but the "restless" extends to other parts of my body, almost like a (non-painful) low voltage periodically pulsing through my muscles, enough to prevent me from drifting off to sleep.

I found CBD oil to be useful. 50-100mg/100ml does the trick. Non-addictive. It doesn't "knock you out" like belsomra might and there's no next-day-hangover (drowsiness) either. Unfortunately in some parts of the world CBD oil isn't so easy to get.
 

geraldt52

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So what would you suggest?
The best I can do is suggest that you spend some time on benzobuddies.org, and decide for yourself.

I can tell you that benzos can famously cause exactly what you are describing, especially if taken for long periods of time...and Klonopin is probably the worst of them all. Benzos are very seldom intended to be taken in that way, and it's a pretty sure bet that any doctor who has prescribed them in that way is unlikely to be of any help in helping you get off of them.

Since you've already tapered down once, it might be worth increasing or decreasing the dose, temporarily, and see if your issues get better. If they do, I'd think it is a pretty clear signal that you're heading down a path of habituation to benzos and it would be best to get off of them.
 

bertiedog

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Klonopin is probably the worst of them al
TBH I feel that is rather an exageration going by personal experience over 20 years. I have only ever taken a quarter of a 0,5 mg tablet, never felt the need to increase that dose as that is all I need if I get an extreme anxiety attack at night which in my case is caused when I am too low in cortisol due to adrenal insufficiency. These attacks send massive of adrenaline through my body and brain making sleep impossible, even when the bit of h/c I take kicks in.

It has only happened a couple of times in 20 years when after about an hour of taking the klonazapan plus h/c and using a meditation session on my IPOD that I don't fall into a great sleep for at least 5 hours and I wake up feeling fine around 6 am which is my normal wake time.

Thankfully in general I do fine on 25 mg Lyrica taken before bedtime unless I get one of the episodes mentioned above. To give you some idea my GP last gave me 30 tablets one year ago and I still have 2 left (which would be 8 doses remaining).

I can honestly say that in the past there have been occasions when the anxiety and adrenaline have been off the chart that I don't know what I would have done without this drug, especially when its 4 am and still no sleep despite being exhausted but with the after effects of the adrenaline still running through my brain and body.

I have tried taking melatonin but it makes me extremely dizzy which triggers excessive adrenaline and some of the drugs like Nytol also do this to me so are not an alternative if one of these attacks come out of the blue. I also know that my brain will trigger this sort of episode any time my body is reacting to any extra stressor such as a nasty virus, Covid vaccination, a treatment of Botox for migraine which turned out to be a disaster triggering this sort of a response for around 3 weeks so I ended up needing the 1/4 on many more nights over that period.

In my case I am homozygeous for several SNPs implicated in the slow clearing of several neurotransmitters which I am positive are part of the issue as it tends to run in my family.

It is good to raise awareness of the negative effects of benzodiazepines but my experience is if one treats them with great care and do everything you can to avoid having to take them regularly by trying alternatives including lifestyle adjustments like no caffeine after 3 pm in my case,, but f you are still left with a significant problem then its a good idea to get some relief and not feel guilty about it either.

On a final point I am lucky in that when in a relatively good spell I can be fairly active (with long rest periods in between) so I go to bed feeling very tired and can drop off quickly. I feel I should make that clear and do appreciate I am fortunate that I have some ability to do mild, short term activities on most days.

Pam
 
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Lucinda

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I have my doubts this is caused by clonazepam since I first got this symptom years before being put on the drug. I took the drug to ease the symptom.

Additionally, I have experienced benzo withdrawal before. One time when I was reducing my clonazepam I got mixed up and under dosed for 2 weeks. I got very ill but the symptoms were not what I am suffering now. What I am suffering now is worse.

I am not sure the feelings I am experiencing in my chest have been communicated well. I don’t know how to explain them. I will try a few more ways to explain the agitated feeling:

My chest feels like it is burning up from the inside.

It isn’t muscular but it gets worse if I do not stretch or exercise the area.

I do get heart palpitations and tachycardia with it, but I do experience palpitations and tachycardia most of the time. I do not find these issues exclusive to this problem.

I get this agitated feeling until it burns itself out by totally exhausting me. Then I get a reprieve temporarily where I am bedbound and crashed, then it comes back. At the moment this means I have one night agitated and unable to sleep, then by the next night I can sleep, then it comes back again the next night, etc etc.
 

Booble

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I was surprised to find out that perimenopause causes this too.
I had a bout in the past exactly as you describe and it was either mold or peri or a combo of the two.

I'm feeling similar again now too. :(
 
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I was surprised to find out that perimenopause causes this too.
I was able to use the progesterone creme....topical...I always used probably half of the recommended dose but I found it helpful for perimenopause...I had a book by Dr. Lee. This is the biomimic, they make it in a lab from wild yam.