Update re "maddening vibrating sensation" I posted about previously

[TryingtoGetWell]

When responding in a thread about thyroid to Alsacienne's reply to my having referred to "maddening vibrating sensation" - a severe symptom of mine that I posted about quite a while ago, before many current members had joined this group, I realized that it might be relevant to many people here who wouldn't be reading a thread about thyroid issue. So I'm posting my reply - along with link to my older thread - as a new thread that's an update I've been meaning to do anyway.

Why this has been one of most severe symptoms or lasted so long, even though it doesn't seem to be as common or as prolonged in others, I have no idea. May have to do with my particular nervous system disorders (was diagnosed decades ago with seizure disorder, and that condition and especially many meds for it was what led to my being put on paxil) or even my long-term use of benzos as adjunct (now only) anticonvulsants.

But there were some responses to my original thread that indicated that this symptom or something similar was something others were experiencing, though evidently to a much lesser (and certainly less frequent) degree. So I'm posting what I started to write in the thyroid thread as an update here:

I started a thread about it quite a while ago; you might want to read it in case you find the responses helpful:
http://www.paxilprogress.org/forums/...ting+sensation

I don't think everyone who responded described exactly the same sensation I get, but I'm glad it was discussed because we covered a range of symptoms that aren't usually mentioned, and since in my particular case it has been one of my most severe and most strangely disturbing symptoms, I felt like I was the only person who experienced anything like this until others responded.

Earlier in recovery it was relentless with virtually no letup; any letup was momentary. Now I get days at a time where it's almost always below my threshold of attention, and the rest of the time it's generally much less severe than it was.

Also, now I definitely find it occurs most often (and certainly most intensely) when I've been sleeping (whether at night or when dozing off during the day, so that rules out the circadian rhythm theory I'd had, although circadian rhythms definitely affected occurrence/severity of many of my other symptoms earlier in recovery) - and also sometimes when I eat. Often occurs with heart racing fast and/or pounding hard, and DP/DR type feelings and unwarranted feelings of horror on waking. I almost always have the latter symptoms when I wake up, but fortunately now they usually subside within about ten minutes or less (a HUGE improvement over 24/7 all day every day!!!!!!), though occasionally it will take an hour or two for them to gradually subside.

I definitely have always felt it most intensely in my extremities, as one response to my previous thread about this experienced also. I do sometimes feel it in my heart area also.

It feels like my whole body is vibrating. I've also had "earthquake-like feelings" (some people describe it as inner shaking or the like) that I feel inside my body but also feels like the bed or chair or is shaking also. But the vibrating sensation I was referring to (don't know if the term vibrating describes it adequately, but don't know how else to describe it) is definitely in my arms and legs when I think about it, though sometimes also in the area of my heart and (rare now) in my face. It's an extremely fast vibration in the sense of a car whose motor is racing or (to some extent) like holding warm soda in your mouth.

It is in recent weeks (maybe a month or so) that I've had particular improvement in this, though I get irrationally discouraged (really is irrational given that overall this problem is getting much better) when I get "bad days" of it again. I deal with that by reminding myself that overall it's greatly improved, and also that setbacks seem to go along with increase in other symptoms, so apparently I'm still healing - but definitely much better than I was!

Again, most people do not seem to have this. I've had it since w/d started - worst was at those darn approximately 6 month and 9-11 months off (or thereabouts) periods after a too-fast taper that LC once referred to as being the same as CT (I was stunned when I heard that; I hadn't known about the slow tapers recommended here and thought my taper was very slow!!!). So if you don't have this, don't worry about it. If you have it, you know it, and no one has ever mentioned having this particular symptom as bad as I have. (No one has every symptom, so newbies, please don't think everything mentioned here will happen to you!)

[iwowi]

I definitely experienced the inner tremors (or vibrations) that you are talking about. They would keep me awake at night. I would be about to fall asleep and then suddenly it would happen. My whole body would vibrate.

For a week I took ginseng because I felt so tired. (I was not aware of ginseng contributing to insomnia at the time.) I stopped sleeping while on ginseng and the vibrations got really bad. I learned that anything that would stimulate the central nervous system (CNS) would make the vibrations worse.

I researched at the time the vibrations issue and found out that the felling is connected to CNS. In withdrawal the CNS is healing and hence the experience.

For me the vibrations were not as constant as for you (mostly at night before falling asleep) and with time they subsided. I rarely experience them now but anything and everything is still possible. I am just ending my 9th month so much can still happen for me.

I am so sorry that you had to suffer this stuff for so long and to such a great extent. I am glad that you did improve. I am sure that with time the vibrations will subside completely.

[Alsacienne]

I'm still getting the 'earthquake effect' even though I'm no longer taking Deroxat (Paxil) - my last dose was 28 July. I take great comfort in knowing that I'm not alone in this, and that it won't do me any harm. Thanks TTGW for making this a thread in its own right. Another thing to learn to live with, and let go!

Bon courage to us all!!

[leo79]

Yeah I have this internal vibration feeling. I only notice it when I try to sleep. I don't know what it is exactly but no doubt it is from a fried CNS.

[Betsy]

I think this is the same thing as I called internal shaking. I get in on my thighs and forearms, chest and most recently my face. It has gotten MUCH better. At the beginning of June, when I awoke in the morning, it was really shaky and after awhile, it would calm down. Don't know why, but didn't let it get to me. It's been going on for 2 and a half years now. I used to feel it all day, every day. But, since I realized it wouldn't kill me, I've not worried, just noticed it and tried to let it go.

In August, for the first time in 2 and /2 years, I had hours where I did NOT feel it at all! That was so encouraging for me! I have just been assuming that I would live with it the rest of my life! It made me happy to have it stop. Maybe there is hope that eventually it will stop completely.

When I eat sugar it seems to increase as well. Strange, isn't it.
Betsy

[iwowi]

Originally Posted by Betsy

...........In August, for the first time in 2 and 1/2 years, I had hours where I did NOT feel it at all! That was so encouraging for me!.................

I read on line that it is caused by CNS and I think it is related to the healing of your nerves. 2 and 1/2 year is a long time though. My heart goes out to you. I think the August break through could be window to the future. I hope that given time you will be vibration free. I truly hope so!

[Betsy]

Thank you,
I am holding onto that thought myself. It all started when I tried the liquid paxil and got into a HUGE mess. I was trying herbs and all kinds of things. but to me, it seemed to be caused by the liquid paxil. Weird. Most people have no problem with the liquid. I guess I get to be the lucky one!

A year ago, when I was at about 8.5 mgs, I tried to switch to the 10 mg tabs and my body did the same thing. The shakiness got going like crazy again. I was afraid I'd really messed things up. But I changed back to the 20 mg tabs and did my relaxation. It has gradually improved to the level it was at a year. ago. Except now it is over more of my body than before. I don't know if it is the coloring, I don't seem to react to orange food coloring in any other form. It is just strange. And actually, NOW it seems to feel more like a buzzing more often than a shaking. And it feels strange on my upper lip and chin. I'm ust going to think of it as healing...why not and if it's not true, I will have developed a good attitude about it anyway.

I tapered a bit again starting this last Monday. Here we go! I'm at 7 mgs now, Woo Hoo!
Betsy

[iwowi]

I think it is a sign of your CNS going through major changes. Just stay the course. I see decline in the level of my vibrations that happen before sleeping. The last outburst I experience was after I drunk alcohol and as we all know well that alcohol affects CNS.

I think that as long as you tapering Paxil the vibrations will stay put but after you finish (or stop) the taper and heal for some time they will go away. I am glad that you having a good attitude about this maddening sensation. Hang in there and persevere.

[Betsy]

I have found that they increased again, just as I tapered this week. But like I said they are NOTHING compared to when they first began. It is more like a slight buzzing now, not the shaking that about drove me nuts. So, I just keep going. I was talking to my daughter about it today, she is tapering off of prozac, and I remembered that sometimes, when I take my med later in the day, I'm not feeling the sensation at all, like it is paxil related, as in paxil just put into my system. ....*sigh*....so hard to figure out and most of it is just conjecture to some degree.

At least it is NOTHING like it was. The thought of those days just makes me shudder.

I used to think I was all alone in feeling this, but I guess I have company! Sorry, someday we'll be good company, not company in a bad thing....
Take care!
Betsy

[altostrata]

Originally Posted by TryingtoGetWell

Also, now I definitely find it occurs most often (and certainly most intensely) when I've been sleeping...Often occurs with heart racing fast and/or pounding hard, and DP/DR type feelings and unwarranted feelings of horror on waking. I almost always have the latter symptoms when I wake up, but fortunately now they usually subside within about ten minutes or less...

From what I understand from conversations with my doctor, a sleep medicine specialist who treats psychiatric drug withdrawal syndromes, the heartbeat symptoms indicate "autonomic dumping," a dip in autonomic stability.

The feelings of horror or panic upon waking are a jolt of excessive cortisol.

The reason these symptoms are associated with sleep is that the alerting system in the autonomic nervous system has been set artificially high by the drugs and drug withdrawal. My doctor calls this "meta-homeostasis." The alerting system, which signals the adrenals to produce adrenaline and cortisol, wants to keep you on alert at all times. When you sleep too deeply, it gets alarmed and will wake you up to fight or flight, releasing a jolt of cortisol and causing autonomic dumping.

This is what I'm dealing with, too, in a severe sleep disorder for the last year.

I also had vibration in my wrists and hands for a year or so, then it went away for a year or so. Now, oddly, occasionally I have a slight vibration in my left elbow.

Recently I met a woman who had been cold-turkeyed by her doctor from benzos who said she had a very disturbing sense of strong inner vibration.

(There are some papers about sleep deprivation and physical hypersensitivity in http://paxilprogress.org/forums/show...532#post517532 )