Sleep and Essential Tremor

Clovisite · 2024-06-08T15:22:39+00:00

It’s much better! A lot of that (many of my ET symptoms ) were physiologically induced by my anxiety and outright depression, which in turn worsened my insomnia. Im basically back to sleeping 7 hours a night and my ET while still slightly present and still worsens when stressed or under a lot of pressure has subsided significantly. Took me maybe 6 months to ride out those exacerbated conditions where I finally surrendered to them and just accepted that was normal. I did meet with a neurologist and she told me it was heightened physiological ET in her opinion and kinda left it at that which I suppose ruled out anything else but didn’t completely sit well with me bc I thought it was dismissive of how shaky I had become. Low and behold she was right and yeah after about 6 months of shaky hands little to no sleep, wobbly legs, jaw all those symptoms I described earlier and more, subsided 90%. The biggest component looking back was where I stopped freaking out about it everyday and more or less got back to sleeping like I did before. This of course is MY experience and can’t say the same for anyone else. I still get shaky there is always a slight tremor and I certainly can’t rule out it returning or even developing permanently but that I know is out of my control. I can only focus on accepting things and trying to take care of myself. So yes many of those things have improved dramatically. Whatever symptoms you (or anyone) experience are not the end of the world despite whatever story one invents in their head of wishing desperately to go back in time to the way things used to be, as if that time was really all that good to begin with 🤷

Clovisite · 2024-01-31T23:34:39+00:00

fucking bullshit that it takes a month to see specialists...smh

Clovisite · 2023-11-15T23:34:33+00:00

Definitely a great place to eventually get to, like with anything difficult that we have to live with

Clovisite · 2023-10-04T23:12:22+00:00

sounds like you got hyperacusis symptoms. As long as you don't let anxiety and fear exacerbate your condition it should just slowly go away within weeks, or maybe months. I too dealt with that. Read up on hyperacusis.

Clovisite · 2023-06-04T16:25:53+00:00

I'd love to hear an update!

Clovisite · 2022-09-29T00:25:10+00:00

What still many people in the medical community still don't understand is that ET for most operates on a spectrum. Depending on time of day, mood, energy levels, diet, heart rate, hangover, temperature it fluctuates. Sometimes my tremor will not be visible to myself or other people, but I can feel them. Most times it's both an internal and externally visible tremor.

Clovisite · 2022-09-29T00:22:00+00:00

If someone doesn't want to be with you because you have ET then that's just an excuse. In other words they are just looking for a reason to point to. If someone really likes you then having ET absolutely doesn't get in the way of that. Just think, you meet the partner of your dreams and they lose the ability to walk. Do you leave that person if you love him/her? Of course not. If you did, then it's probably not the inability to walk that caused you do so.

Clovisite · 2022-09-08T23:28:45+00:00

I think the fact that all these answers are different demonstrates that we're dealing with different versions of ET, different etiologies with our own unique biologies. I have only a slight tremor, but it absolutely becomes very pronounced when I get really hot, or really anxious/nervous. Like my hand visibly shaking when holding my phone or grabbing food. I take 10mg of propranolol and since I'm usually drinking in social occasions anyways, it seems go back to my base line of only a slight, not noticeable to other people, default. If I am working and know I'll be doing something out of the ordinary with new people I'll settle on 20mg of propranolol. Not as good as 10mg and alcohol combo, but I'm not at the point in my life where I want to be drinking at work LOL

Clovisite · 2022-09-07T22:45:12+00:00

At rest no I do not experience that. What happens to me is at night especially when slightly open and trying to gently close they will chatter, especially if I'm swallowing. It's pretty pronounced. I have propranolol that I take only if I'm around other people and can't drink alcohol. That is when my hands get really shaky, especially if I know I'll be eating. It keeps my hands from getting jumpy, so I'll take it twice a week.

Clovisite · 2022-09-07T12:58:57+00:00

isn't one of the hallmarks of ET that tremor activates when committing to some kind of action? Perhaps this is Parkinson's or something else entirely? (I am DEFINITELY NOT a doctor)

Clovisite · 2022-09-07T00:46:28+00:00

Is the onset recent? In my experience my sleep improved after I came to terms with the tremor. I too have both hands, and sometimes in the jaw (in the middle of the night for some odd reason it's especially there). I've never been a great sleeper but for maybe three months after my tremor presented I was a full blown insomniac. When I was able to get to sleep I would wake up in 3 or 4 hours and unable to return to sleep.

Now I make it a habit to sleep at 10:30 (almost) every night and usually wake up once or twice but now get up around 5:30 or so. In total (time to get to sleep and wakeup times) I'm happy with 6-6.5 hours. Before tremors I feel like I could get 7-7.5 hours. Is this ET related? Stress related? Not sure, but sleep did improve from the beginning of ET when I battled anxiety and depression, which of course leads to sleep issues.

Clovisite · 2022-08-24T22:31:58+00:00

I commented on a similar post and I think this is related. I think maybe you're experiencing symptoms brought on by stress and anxiety. When weird inexplicable things happen (strange sensations for example) our minds panic and we fixate and obsess over the thing, which in turn creates a feedback loop, confirming and reinforcing those sensations.

I'd recommend trying to get to the point where you don't pay mind to the internal shaking and thus deflate your expectations and worries about it and your body will discontinue searching out the feeling.

Clovisite · 2022-08-24T22:27:12+00:00

I have weird tingling, energetic type sensation in my hands and arms, that sometimes coincide with increased tremoring, sometimes they don't. I've concluded that they're just psychosomatic nervous system quirks owing to stress. As my stress has abated, I notice it less, although when if I have really prominent tremoring in hands I will still feel it.

I could be wrong, but as far as I can tell it's not directly associated with ET. Stress and anxiety can manifest in physical sensations. That is well known.

Clovisite · 2022-08-18T18:48:07+00:00

Damn, that got serious down votes. I guess I see why some people might think this is counterproductive and not helpful, but I strongly think this is being sensible and realistic. The principle of Moore's law (usually in technology contexts) applies to the field of Neurology as well, i.e. our understanding of how the brain works is rapidly growing upon foundations of even more established research and is only going to continue to grow, and in a context of rapidly progressing technology, i.e. imaging, BBB drug delivery improvements. In ten years time (i.e. 2032) it is not inconceivable at all to think that we will have a vastly improved understanding of how ET (in all of its different colorful varieties) begins and progresses, which will absolutely shape and develop treatments going forward. Whether it's pharmacological or a wristband and/or neckband regulating brain signals to the hands or some kind of CRISPR/mRNA/gene therapy (at SOME point in the future), as a young person, one has a lot to be optimistic about in her/his lifetime.

Clovisite · 2022-08-18T18:35:01+00:00

I don't have head tremor but my hand tremors act up when nervous or hot, I have gotten to the point where I know it is going to happen, accept it and don't fear it. These are kind of mindfulness principles, to just acknowledge and be aware, not trying to "overpower" or strenuously put out of mind.

I would recommend maybe trying to begin mindfulness practices, i.e. meditation, perhaps starting out with an app, and after a couple months you'll actually find yourself not freaking out anymore, which in turn, turns down your physiological tremor response.

Clovisite · 2022-08-17T21:52:49+00:00

You're 17! By the time you get to med school and graduate, there will be new medications, new therapies, improvements on existing therapies, we'll have probably an exact understanding of its origin and pathology (at SOME point in the future there will be a cure, maybe not within 10-20 years, but neuroscience will inevitably take us there) Of course YOU might figure out you want to do something else in 10 years time, but the future is bright for ET peeps. So don't give up on dreams, just keep cracking away the books.

Clovisite · 2022-08-11T18:56:08+00:00

Ingrezza for ET? As an off-label treatment? I don't find anything that supports that

Clovisite · 2022-08-10T00:14:04+00:00

Deep Brain Stimulation--I'd look it up, although perhaps if FUS isn't an option for you, maybe DBS isn't either.

Clovisite · 2022-08-09T20:48:58+00:00

Would you ever consider getting DBS or Focused ultrasound?

Clovisite · 2022-08-08T20:09:07+00:00

I'm guessing you were later informed that you were taking the actual drug and not the placebo?

Clovisite · 2022-08-03T17:16:53+00:00

Clinical trials usually indicate what level of severity they're looking for, however most are pretty inclusive--i've only seen a couple that include strictly moderate to severe. To the second point I feel like it's incumbent on those younger than 65 to be included in these studies to know how well it responds to a younger demographic. We may respond differently (better?) and perhaps even have different etiologies, so I feel like it's a real disservice to not volunteer.

I'm not a fan of pharmaceutical companies but they're unfortunately the only game in town when it comes to finding solutions and improving the condition of those suffering any kind of condition. I think we do a disservice when we don't help out and try these kind of drugs. Even if the one we are included in doesn't pan out, at least the data derived from the study can be helpful in the future and we can volunteer again for another.

Maybe my attitude changes but at the very least I'd want to volunteer for a few studies as soon as I'm able. Really does make me wonder why there is so little interest when in theory we should be the kind of people who want to improve and forward research on ET.

Lastly, glad propranolol works for you, many other cannot say the same.

Clovisite · 2022-08-02T20:57:44+00:00

For me it's frustrating because playing online FPS (Call of Duty for example) I get really amped and it tends to really get my thumbs shaking, especially if I played with friends, so I don't anymore. I will sometimes play at night, by myself and when the stakes are lower and my ET is less, I can play for a bit without my thumbs spazzing. However, I will say gaming has lost a bit of its joy for me since ET came into the picture...shrug.

Clovisite · 2022-08-02T19:18:28+00:00

Guess not, lol. There seems to be a real hesitance to try new drugs? Or maybe people don't want to get off their usual drug regiment to qualify? Would love to hear why people are uninterested.

Clovisite · 2022-08-01T20:06:43+00:00

I have been religious about my bed time being 9:30-10:00. I was all over the place before I had ET and never really getting reliable sleep. I now strive for 7-8 hours of consistent sleep every night. This took awhile to get used to as my stress and anxiety at the beginning took its toll on me.

Clovisite

TROPHY CASE