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Shaky and scared, could it be ALS or MS?


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Hi all

 

Just 10mo off klonopin .25 daliy use for 5yrs

I took .25 resuce dose at 5mo and things went downhill

 

I feel at 10 mo things are getting more intense, as time is progressing the muscles in my body are tight and weak......my head and neck, jaw, abdomen,,,,,my arms and legs feel weak and heavy, like I have a hard time controlling them,,,,my anxiety has been off the charts, I feel shaky and trembly,,,dizzy, boaty

 

I want to believe this is part of withdrawal but I am scared of MS or ALS, I know these are rare, roughly 1 in 5000

but it seems that things are getting worse, not better, it seems members here fear the same thing,,,and they never have ALS or MS

 

My walks at night are harder because my legs start acting strange,,,I ususally have 2 bowel movemtns a day my whole life, now down to one

 

Is it really normal to get worse at this time?

 

I am a strong healthy 45yr old, no drugs now, I did give up alcohol and weed,,, been healthy my whole life

I had MRI of neck and brain 1.5 yrs ago, nothing,,,,BP and pulse perfect, O2 perfect

 

How many members have had symptoms like this, and is it my health anxiety getting to me, and its not ALS but withdrawal

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I feel the exact same way.

 

It is literally ruining my life. When I went off I had crazy pins and needles feeling. Stiff muscles feelings. Sometimes my face feels numb or tingly?

 

I keep thinking its withdrawal until I'm just sooooo uncomfortable. I went to the doctors enough times that I was refered to a neurologist.

 

I just hope I dont have a brain tumor.

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I'm on the same boat with exact sx you described only it's allover me not only legs but entire truck and head too. I'm 1 yr off now, the muscle caused whole body dystonia keeps getting more frightening every day since month 7. I got infected with covid at month 7 and immediately after that the quick deteriorating muscle sx hit so incredibly hard. I was getting better round 6 truly believe this virus caused extreme damage to my compromised system.

 

Anyone might have suspected covid virus and maybe that contributed to the worsening situation?

 

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I have had ALL of the same symptoms. Ataxia is a withdrawl symptoms, and having jelly legs and heavy limbs as well.
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10 months off was one of my worst months ever, pure hell. Symptoms were at an all time high. You don’t have MS or ALS, you have BWS (benzo withdrawal syndrome). I worried I have everything from cancer to MS to everything else under the sun. I think health anxiety and self diagnosis is actually a benzo withdrawal symptom in itself. Your symptoms are all from benzos, you have no idea how many people have said what you’ve wrote, it’s normal to have these fears. They aren’t real though. Go in for a thorough check up if you want, but they won’t find anything (there is no test for BWS). This will all go away with time.
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  • 1 year later...

I realize this chat hasn’t been used in awhile but I’m going thru hell and keeps being worse. My shoulders arms hands are visibly shaky and I feel weakness in both arms plus some numbness in left hand.

I have heart palpitations, stomach issues, and health anxiety about how this is simply not getting better it’s going the other way. I have an appointment to see nuero soon about the tremors. Any help would be appreciated

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Hi Sophie, I’m experiencing the same sort of muscle symptoms you are. I stopped 0.25 mg of klonopin C/T last October. I’ve been pretty miserable ever since. I’ve had 3 MRI’s to look for MS lesions and all were fine. Some of us just seem to have more physical symptoms than others. Now looking back I realize I was also having Inter dose withdrawal. I expect to have muscle issues for quite awhile yet. Hang in there, things will improve with time. I’ve found the best thing for me is to try to keep my anxiety level down. In fact, I’ve noticed if I listen to a meditation on YouTube my symptoms completely disappear. I think that’s a good indication that these physical symptoms are really a manifestation of inner turmoil. Our minds are overactive and so our bodies can’t quite calm down. Things will get better.
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Hi all,

 

It’s most likely benzo withdrawal.

 

Think of it this way: did u ever have these symptoms prior to benzo withdrawal? If the answer is no, then do not panic. Anxiety is to the roof on all of us, it’s part of the deal basically…

 

Hang in there, 10 months off can still bring on waves…

 

Karla

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Thank you for the replies… I guess I just wish some of these symptoms would be more like the waves described by so many.. since the mild shake started it’s always been present and now way more pronounced so that I get self conscious when I use my hands in front of people.. I’m 33 and my hands shake like my grandma. No matter what time of day it is.. possibly more visible with stress but certainly never gone. Shortly after stopping Klonopin I got the crazy heart palpitations so many talk about.. unlike so many other tho mine really showed up on heart monitors so many PVCS drs are asking me to set up an ablation procedure. Now obviously I think this is related to the klonopin but I feel like the most unlucky member in that this manifested into diagnosed stuff - first high volume PVCS and now neuro considering essiential tremor diagnoses. Just makes me feel like what next? The hand numbness scares me the most as this point. Really expected to be somewhat better or have those windows I hear so much about…
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It’s benzo withdrawal trust me I’m going thru same issues rib cage muscles so tight bladder spasms abdominal pain back pain and spasms sometimes it hurts so bad it’s crippling I just continue to get up and do things to distract it helps me get thru the day it will pass I’m 10 months out and this is 2nd time withdrawal from benzodiazepines last time took 4 years but it went away
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About 2 months after w/d I noticed that I had unstable balance and since then I sway very frequently. I had a battery of ear, eye and other tests to check for a physical cause and they came back clean.

 

I also get "inner tremors" all the time that feel kind of like convulsions I guess, despite my last two EEGs coming back clean after an abnormal one 3 months before quitting.

 

That said I've tested myself by riding a bicycle and I even went skating today. Other than being rusty, I didn't notice any significant difference so it's probably some nervous system shit that we're all going through. I do admit that I've googled "early Parkinson's symptoms" several times.

 

I guess it was just too ambitious to think no other symptoms would surface after healing the worst ones (reactive high BP and tachycardia). We all just gotta hang in there it seems. We got this!  :boxer:

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Trying to stay positive the tremor and hand weakness are there and steady and well as my left eye twitching now it’s just wild at this point how many physical things are manifesting. Makes me consider getting back on klonopin mostly to see if all this would stop. That way I could have the peace of mind to say ok it’s not als it’s the benzo and start a slow taper. I came off with no taper and it’s been straight 9 months of hell.

Literally falling apart

 

 

 

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I have all of the symptoms mentioned with a little nausea thrown in in the morning (morning sickness and I am 79 years old) :)  IaStoiArto, when you mention blood pressure, how high is it?  I have unusually high blood pressure but never suspected it was related to Benzo Withdrawal.
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Trying to stay positive the tremor and hand weakness are there and steady and well as my left eye twitching now it’s just wild at this point how many physical things are manifesting. Makes me consider getting back on klonopin mostly to see if all this would stop. That way I could have the peace of mind to say ok it’s not als it’s the benzo and start a slow taper. I came off with no taper and it’s been straight 9 months of hell.

Literally falling apart

 

What has helped me through periods like those was getting tested. I had a brain MRI early this year and I've had 3 EEGs. It doesn't alleviate the symptoms but just knowing that everything okay helped me endure the periods of hell-on-earth. That said, I can't feel what you feel. Maybe going back on clonazepam would and tapering would be best for you. Benzo w/d is far from one-size-fits-all.

 

 

I have all of the symptoms mentioned with a little nausea thrown in in the morning (morning sickness and I am 79 years old) :)  IaStoiArto, when you mention blood pressure, how high is it?  I have unusually high blood pressure but never suspected it was related to Benzo Withdrawal.

 

When it was high my worst episode was about 210/110. I was in the ICU for 2 days. I still had spikes while I was on a beta blocker (Atenolol), maybe 160/95 on average with the diastolic sometimes creeping above 100, along with tachycardia. This was all just before tapering and throughout tapering. The frequency and intensity of episodes decreased gradually once I quit clonazepam over a period of 6-8 weeks. Since then my BP is almost always better than 120/80. My mom is having an almost identical problem with clonazepam right now. Benzos suck!

 

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I feel like I’ve had so much stuff it’s insane. I’ve had an MRI around the time 7 months ago the fine tremor started with bouts of blurry vision.. it came back fine.

I’ve had endoscopy done for nausea and tons of tummy issues and other tests that are pretty excessive for someone who is 33.

The muscle issues have been consistent and scare me the most. Right when I came off klonopin with no taper I would wake up with massive internal tremors that stopped but the essiential tremor stayed and is truly worse - now with the hand numbness and eye twitch and muscle twitches I’m  pretty scared and logic is out the window it just not improving it’s evolving.

I get dizzy spells- and still have air hunger at times.

Scared to reinstate but this has been so bad I feel like starting again realizing I’m ok and it is benzo withdrawal might help me try again

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I can relate. Bc of the high BP I've had to get heart exams too, a gastroscopy, an allergy panel and dozens of labs. There were significant findings in some of them, others came back clean. I even had reactive hypoglycemia for a month or so because of statins. Another thing that helped was to develop deep self compassion. Benzos fuck with our body's natural anxiety management system. Of course, we're going to freak the f*** out occasionally.

 

What you're suggesting actually makes sense. You may want to check with a physician and/or psychiatrist first, though. I'm so sorry you're going through so much pain.

 

I feel like I’ve had so much stuff it’s insane. I’ve had an MRI around the time 7 months ago the fine tremor started with bouts of blurry vision.. it came back fine.

I’ve had endoscopy done for nausea and tons of tummy issues and other tests that are pretty excessive for someone who is 33.

The muscle issues have been consistent and scare me the most. Right when I came off klonopin with no taper I would wake up with massive internal tremors that stopped but the essiential tremor stayed and is truly worse - now with the hand numbness and eye twitch and muscle twitches I’m  pretty scared and logic is out the window it just not improving it’s evolving.

I get dizzy spells- and still have air hunger at times.

Scared to reinstate but this has been so bad I feel like starting again realizing I’m ok and it is benzo withdrawal might help me try again

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Honestly agree fully.

But a numb hand and two shaky hands that never have a normal moment make it really hard to say this is just something to keep ignoring

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Unfortunately my physical symptoms haven’t let up and mentally are wearing me down. I have considered reinstating to see if any of the physical issues go away- my health anxiety is unbearable at this point.  I have had feelings of weakness in my left hand for over a week a twitching left eye and general shakiness increase.. at 10 months out this is not what I saw coming. I’ve had my share of health anxiety and now I’m certain of something like ALS Bc of the hand weakness , cramps, twitches etc.

I’m honestly tired of being convinced I’m dying. ( to be clear I’m not totally insane for the health concerns Bc stopping K led to very really issues- my heart palpitations are not in my head they showed up on 20 heart monitors as high amounts of PVCS to the point cardio suggested an ablation. The tremors are real enough 5 months ago for possible essential tremor diagnosis and are much worse today

I stopped klonopin suddenly after two years and it’s been 10 months of just misery- with the way I suddenly quit . I am considering starting a low dose of Valium as low as possible and a very slow taper this time to see if I can stabilize. This is a busy time of my life and I simply can’t be this sick all the time. I tried for 10 months.

Would appreciate your thoughts

 

 

 

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I would wait, if it was me. I think if you can find other ways to manage your anxiety you’ll be a lot better off. No one ever takes my advice on this, but there are body scan meditations on YouTube that are very helpful. The more you practice them the better you will get at relaxing yourself without drugs. I have found that all of my symptoms stop when I do a meditation. In particular, I love the Lauren Ostrowski body scan one. It’s very simple. If you practice it everyday I think you will find that your symptoms will subside when you are very relaxed. It’s worth a try anyway, right?
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Nice thread, I was the OP 1.5 years ago

The muscle stuff is still awful

neck, jaw, abdomen, squeezing, stiff, off balance, sides of head muscles twitching

my abdomen is hard and bloated, feels like its bursting

 

had MRI of abdomen, looks great

saw neuroligist, put me through tests, said its nothing neuro degenrative,,,,GENERALIZED ANXIETY  LOL

 

YEA, induced by the pills, he understood my point

 

Im almost willing to try things, go back to beer, weed,,,,even the pills

 

I have a family to take care of and its not fair to them that i cant parent like i need to,,,,

 

 

there will come a point will I may drug my balls off to find relief,,being conservative for years on end just to brag about being clean to piss water,,I have be an bad ass athlete my whole life and took on all forms of pain,,,but this something else,,,,,,but we will see

XO

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Nice thread, I was the OP 1.5 years ago

The muscle stuff is still awful

neck, jaw, abdomen, squeezing, stiff, off balance, sides of head muscles twitching

my abdomen is hard and bloated, feels like its bursting

 

had MRI of abdomen, looks great

saw neuroligist, put me through tests, said its nothing neuro degenrative,,,,GENERALIZED ANXIETY  LOL

 

YEA, induced by the pills, he understood my point

 

Im almost willing to try things, go back to beer, weed,,,,even the pills

 

I have a family to take care of and its not fair to them that i cant parent like i need to,,,,

 

 

there will come a point will I may drug my balls off to find relief,,being conservative for years on end just to brag about being clean to piss water,,I have be an bad ass athlete my whole life and took on all forms of pain,,,but this something else,,,,,,but we will see

XO

 

If you are so bad ass and can take so much pain why did you touch this poison in the first place? Surely the anxiety you had before couldn’t have crippled you as much as these awful pills.

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