clonazepam withdrawal / drug induced movement disorders?

[[cl...]]

Wednesday

for the first time ever I went to psychologist today [to talk about emotions and feelings and life events that contributed to my anxiety and depression and how it might relate to the movement disorder symptoms i have been experiencing since before and after quitting clonazepam] and i did not shake / tremor or have that much trouble walking during the session only head pressure and a little derealization zoning out but then later when I got home it hit again just like that out of nowhere

weird 

- hard to function or be able to drive not knowing when this is going to hit

- this is what is referred to as a window??

- good thing i never asked for parkinsons drugs like my GP doctor suggested "they" might be able to give me [they= neurologist / psychiatrists??]

- wonder how antidepressants, mood stabilzers, gabapentin and levodopa effects someone going through clonazepam withdrawal??? [don't think my doctor knows either]

 

Sunday:

today i got up after not sleeping again all night just laying there with eyes closed but wide awake

not shaking / tremoring but have numbness in head and pressure in right ear /

can walk a little better but still wobbly

what is going on??

-I have read / researched about TD dyskenesia symptoms and that it is irreversible

 

 

in my opinion i think that if TD symptoms started after withdrawal then i think it will resolve at some point. mine seems to be getting much better.

 

Thank you for further clarifying!

My heart is sinking with feeling or terror.

 

My entire left side is so numb, with strong muscle contraction head to toe causing dystonia sx head turning to right, and upper body turning to right. Left eye sight is severely blurred. Pain everywhere, sharp needling, deep muscle and joints and others.

 

Living like this day in and day out for so long exhausted me physically and mentally to the very limit

 

 

i had very similar symptoms. my entire left side was numb and especially my left arm as i couldn't use it for a very long time. i also had that strong muscle contraction head to toe and i had my head pulling to the left very violently for a very long time. it still does but it's much better. i also had the dystonia and TD symptoms especially with that head pulling. i made videos of the head pulling as it was so severe. i was so terrified that i would not be able to live with this and that it would never go away. i still have it where i wake up and my head is cocked to one side and feels like it is in a vice grip.

[[cl...]]

Have you ever had a comprehensive "Hormonal Panel" run? I had many of the same symptoms you discussed for years before beginning "TRT Therapy"? My "T Levels", were around 190 before begining TRT...they are now close to 1000 In closing I have also now been off Klonopin for six months after being on the drug for seventeen years which is undoubtedly helping!

[[cl...]]

- no I have had blood tests done that have all been normal not sure if that includes hormonal panel or not

- is there a link between low testosterone and clonazepam usage?? if so that would explain alot about how i have been feeling the last 10 years

Have you ever had a comprehensive "Hormonal Panel" run? I had many of the same symptoms you discussed for years before beginning "TRT Therapy"? My "T Levels", were around 190 before begining TRT...they are now close to 1000 In closing I have also now been off Klonopin for six months after being on the drug for seventeen years which is undoubtedly helping!

[[cl...]]

non-stop head shaking / tremor / trouble walking

- feeling dizzy sick in the head

- inner ear pressure / chest pain / blurry vision / stinging eyes

- extreme fear / feeling of dying

- this is not getting better

- no sleep day or night

- how can it go on like this!??

this is no way to live

Wednesday

for the first time ever I went to psychologist today [to talk about emotions and feelings and life events that contributed to my anxiety and depression and how it might relate to the movement disorder symptoms i have been experiencing since before and after quitting clonazepam] and i did not shake / tremor or have that much trouble walking during the session only head pressure and a little derealization zoning out but then later when I got home it hit again just like that out of nowhere

weird 

- hard to function or be able to drive not knowing when this is going to hit

- this is what is referred to as a window??

- good thing i never asked for parkinsons drugs like my GP doctor suggested "they" might be able to give me [they= neurologist / psychiatrists??]

- wonder how antidepressants, mood stabilzers, gabapentin and levodopa effects someone going through clonazepam withdrawal??? [don't think my doctor knows either]

 

Sunday:

today i got up after not sleeping again all night just laying there with eyes closed but wide awake

not shaking / tremoring but have numbness in head and pressure in right ear /

can walk a little better but still wobbly

what is going on??

-I have read / researched about TD dyskenesia symptoms and that it is irreversible

 

 

in my opinion i think that if TD symptoms started after withdrawal then i think it will resolve at some point. mine seems to be getting much better.

 

Thank you for further clarifying!

My heart is sinking with feeling or terror.

 

My entire left side is so numb, with strong muscle contraction head to toe causing dystonia sx head turning to right, and upper body turning to right. Left eye sight is severely blurred. Pain everywhere, sharp needling, deep muscle and joints and others.

 

Living like this day in and day out for so long exhausted me physically and mentally to the very limit

 

 

i had very similar symptoms. my entire left side was numb and especially my left arm as i couldn't use it for a very long time. i also had that strong muscle contraction head to toe and i had my head pulling to the left very violently for a very long time. it still does but it's much better. i also had the dystonia and TD symptoms especially with that head pulling. i made videos of the head pulling as it was so severe. i was so terrified that i would not be able to live with this and that it would never go away. i still have it where i wake up and my head is cocked to one side and feels like it is in a vice grip.

[[cl...]]

easy to get lost in the crowd on here.....

 

non-stop head shaking / tremor / trouble walking

- feeling dizzy sick in the head

- inner ear pressure / chest pain / blurry vision / stinging eyes

- extreme fear / feeling of dying

- this is not getting better

- no sleep day or night

- how can it go on like this!??

this is no way to live

Wednesday

for the first time ever I went to psychologist today [to talk about emotions and feelings and life events that contributed to my anxiety and depression and how it might relate to the movement disorder symptoms i have been experiencing since before and after quitting clonazepam] and i did not shake / tremor or have that much trouble walking during the session only head pressure and a little derealization zoning out but then later when I got home it hit again just like that out of nowhere

weird 

- hard to function or be able to drive not knowing when this is going to hit

- this is what is referred to as a window??

- good thing i never asked for parkinsons drugs like my GP doctor suggested "they" might be able to give me [they= neurologist / psychiatrists??]

- wonder how antidepressants, mood stabilzers, gabapentin and levodopa effects someone going through clonazepam withdrawal??? [don't think my doctor knows either]

 

Sunday:

today i got up after not sleeping again all night just laying there with eyes closed but wide awake

not shaking / tremoring but have numbness in head and pressure in right ear /

can walk a little better but still wobbly

what is going on??

-I have read / researched about TD dyskenesia symptoms and that it is irreversible

 

 

in my opinion i think that if TD symptoms started after withdrawal then i think it will resolve at some point. mine seems to be getting much better.

 

Thank you for further clarifying!

My heart is sinking with feeling or terror.

 

My entire left side is so numb, with strong muscle contraction head to toe causing dystonia sx head turning to right, and upper body turning to right. Left eye sight is severely blurred. Pain everywhere, sharp needling, deep muscle and joints and others.

 

Living like this day in and day out for so long exhausted me physically and mentally to the very limit

 

 

i had very similar symptoms. my entire left side was numb and especially my left arm as i couldn't use it for a very long time. i also had that strong muscle contraction head to toe and i had my head pulling to the left very violently for a very long time. it still does but it's much better. i also had the dystonia and TD symptoms especially with that head pulling. i made videos of the head pulling as it was so severe. i was so terrified that i would not be able to live with this and that it would never go away. i still have it where i wake up and my head is cocked to one side and feels like it is in a vice grip.

[[...]]

ClonaX, I posted the following video earlier which I happened to stumble upon.  Of course, it's your decision, but it may be a good idea to get in touch with this guy in Toronto, by the name of Joaquin Farias, and at the very least just have a chat with him.  He's been specializing in dystonia for 20 years with much success, it seems.  Again, it's up to you.  There are those of the "Time is the Only Healer" mentality who believe just waiting it out is the only way to recovery, and then there are those who prefer to actively seek out different approaches to healing.  Just my opinion of course, but for what you're dealing with, I just think the earlier one starts some intensive therapy, the better, particularly as you say you did have that instance at the psychologist whereby you had a cessation (or major reduction) of symptoms.  Sounds very hopeful.  Perhaps he may even have a referral to offer you for a practitioner in your part of the world.

 

Anyhow, just throwing it down for consideration, for you, or anyone else in the same boat.

 

Here's his website where you can read up on him:  http://www.fariastechnique.com/

 

He also has an online program you may wish to consider:

 

Complete Recovery Program For Dystonia Patients

 

Dr. Farias’ Dystonia Recovery Program (DRP) is an online training and education app which provides a complete recovery program for patients affected by Cervical Dystonia, Hand Dystonia, Leg Dystonia, Blepharospasm, Parkinsons’ Dystonia and Spasmodic Dysphonia.

 

https://dystoniarecoveryprogram.com/

 

 

An article I read about him:

 

http://themindbodyshift.com/index.php/2018/08/06/dr-farias-reveals-how-to-recover-control-of-our-brains-and-bodies-to-redefine-thriving-with-dystonia/

 

 

Here, again, is the TEDx talk by one of his patients:

 

Dystonia. Rewiring the brain through movement and dance | Federico Bitti | TEDxNapoli

 

"Using my body I was able to teach my brain, it takes exercise, discipline, a lot of work and time, but there’s something else… There is something that we might underestimate, that can be revolutionary, which is different for each person, patient, human being… This was my something!"

 

---

 

Here's another video by a different guy:

 

"Case Study: Cervical Dystonia Resolution with Somatosensory Therapy" - Kevin Lasko, DC

 

CSF: Chiari & Syringomyelia Foundation

Published on Aug 14, 2018

 

Dr. Kevin Lasko describes his recent work with a young woman experiencing life-altering dystonia and dystonic events. While Dr. Lasko cautions that this information is just from a single case study, the experience suggests that intense somatosensory therapy may be a possibility to manage neurological disorders such as dystonia.

 

[[ch...]]

ClonazX -- thinking of you + really hope you begin to get a few more tiny 'windows' soon.... 

 

following your thread since start + posted i already have some of these SXS....

 

SO.... now it's worse...!  had 1st EVER violent jerking of neck / head + ankles / feet  :'(

 

had barely managed to MT a measly 4% C over 2 wks  [holding V @ 8mg]

 

then tried a full 5% last week.... but full body tension + joint pain got too much 4th day + night was so horrible, no sleep.

 

so @ 4am, added crumb of 4% C back as 'dose correction'.... so still a 1% cut.

 

then PAIN SO MUCH WORSE.... + then the violent jerking... terrified + laying there waiting for the next violent SXS... but just total insomnia + fear, palps, etc.

 

+ stuck on both C + V... either of which seems to be causing these horrific SXS.

 

scares the hell out of me + still got MILES to go.

 

my spouse just could not believe such a tiny 'homeopathic' / 'placebo' rescue dose could cause this....

 

don't know if you've read my HX... but you can see just from my SIG -- been messed up so bad too -- by 5 GPs, Psych, Rheum + ER Doc...

 

+ more recently -- forced Lyrica trial + 2nd failed Ashton.....  + it all started w/ forced Baclofen CT.

 

so... it's official now, for me too... this movement disorder...

 

yep -- getting crowded in here, so guess we're not alone.....

 

 

[[cl...]]

not sure i understand all your abbreviation terminology but yes i am getting windows here and there and today started out okay and by afternoon the movement disorder stuff came back again which makes it hard to plan for the future...

windows and then four days of symptoms...all over the place

 

- so you have a movement disorder most likely caused by psychiatric drugs clonazepam? and Valium??

- are your doctors also claiming it has nothing to do with drugs and is complications of anxiety and or depression??

 

ClonazX -- thinking of you + really hope you begin to get a few more tiny 'windows' soon.... 

 

following your thread since start + posted i already have some of these SXS....

 

SO.... now it's worse...!  had 1st EVER violent jerking of neck / head + ankles / feet  :'(

 

had barely managed to MT a measly 4% C over 2 wks  [holding V @ 8mg]

 

then tried a full 5% last week.... but full body tension + joint pain got too much 4th day + night was so horrible, no sleep.

 

so @ 4am, added crumb of 4% C back as 'dose correction'.... so still a 1% cut.

 

then PAIN SO MUCH WORSE.... + then the violent jerking... terrified + laying there waiting for the next violent SXS... but just total insomnia + fear, palps, etc.

 

+ stuck on both C + V... either of which seems to be causing these horrific SXS.

 

scares the hell out of me + still got MILES to go.

 

my spouse just could not believe such a tiny 'homeopathic' / 'placebo' rescue dose could cause this....

 

don't know if you've read my HX... but you can see just from my SIG -- been messed up so bad too -- by 5 GPs, Psych, Rheum + ER Doc...

 

+ more recently -- forced Lyrica trial + 2nd failed Ashton.....  + it all started w/ forced Baclofen CT.

 

so... it's official now, for me too... this movement disorder...

 

yep -- getting crowded in here, so guess we're not alone.....

[[ch...]]

so very glad you're having some more windows - PLease please keep the faith !!

 

what were your 1st symptoms [sXS]  of tolerance ? 

 

did you have muscle tension ?

 

i see your Sig says 'fast taper' ~ 6 months...? 

 

how did you taper ?

 

------

 

sorry Re abbreviation terminology -- Please let me know which?  + will clarify.

 

....had to devise my own 'shorthand' due to limited time on laptop.

 

can only sit 1 hr max at laptop -- must get up + try to 'walk' -- 10-20 min of severe pain -- to try to keep mobility / moving

 

can only walk between 3 rooms of bungalow -- housebound 9 months now.... 

 

cannot wear shoes. ankles / feet severely swollen. knees too.

 

+ terrified after DVT, so reduce / prevent another DVT.

 

+ also lay down 2x p. day w/heat packs for pain + elevate swollen ankles, foot, leg.

 

 

****SHORT ANSWER TO YOUR 2 Qs = YES.

 

 

***BUT -- don't know if you've had chance to read my history [HX] in SIG[nature] links??

 

**if so, sorry to repeat... but will try to type fast summary -- just in case you have not read:

 

pre-2016 -- i NEVER had these "issues" pre-benzo... or pre-Baclofen Cold Turkey, to be precise.... then ER literally forced Ativan into my mouth + shot of tramadol, both against my will. 

 

+ GP made me try paradoxical Zopiclone for several weeks + 2 failed anti-depressants trials -- they caused glaucoma...

 

was also put on Macrobid for 1 week for UTI + tried all sorts of natural remedies for 2 wks, but unbearable insomnia + pain.

 

then Clon .75mcg.

 

during this time was diagnosed w/ Fibromyalgia... of course i had pain all over from Baclofen CT!?  it was horrific! 

 

i know it did some serious brain damage + caused rotated hip / leg -- hip bone actually pulled up and outward.

 

Clon. caused joint pain + muscle tension 1st dose!  GP never believed + refused to let me stay on Ativan, which didn't cause body pain.

 

Clon. seemed to 'lock up' my rotated hip + never been able to walk properly while Clon was 'working' for 22 months. lost ton of muscle mass even tho walking more + aquafit, etc.

 

could walk a bit -- but unevenly + hip pain + knee pain [a prior problem] worsened due to joint pain + swelling in knees.

 

then nerve pain in foot + limping when hit tolerance.  then Achilles pain 1 yr ago...

 

new GP insisted on updose + got severe tension in legs.... then another updose to 'relieve' tension'....  GP did not believe it was the CLon -- said it was the Fibro..

 

downward spiral after many failed updoses + failed direct c/o to Valium.

 

then tried Ashton myself... but after 1 month + multiple hip / leg spasms + weakness, full body atrophy, etc -- was pulled off.... + 10% cut overall.

 

lasted 3 wks, then Psych said to updose to 4mg!  said i'd be " worse off the Clon than on it".

 

Psych also refused to believe the hip/leg tension was due to Clon updoses -- said was Fibro/CFS.

 

discharged me on the spot b/c refused to updose to 4mg. or take Lyrica.

 

got desperate + thought Psych correct -- so did 2 small updoses due to 10% cut off Ashton, but made pain + tension much worse.

 

then swapped out those Clon updoses w/Valium to relieve tension + pain.

 

but now, after 7 months, tolerance to both Clon + Valium + interdose w/d, etc.

 

GP kept pushing me to take Lyrica for 3 months, to help get off 2 benzos, Valium 1st.

 

in Jan - took only 4 days / doses of 25mg Lyrica - gave me severe swelling of ankles, left leg + foot -- then full blown DVT.

 

also triple pain + tension, horrific GI issues, etc.. still....

 

 

SORRY.... MUST get up now .... please can you let me know more about your experience?

 

- when 'disorder' sxs started ?

 

+ your tolerance + taper w/d sxs ?

 

many thanks + peace + healing to you, dear buddie, hold on x

 

 

 

 

 

 

 

[[pr...]]

sorry Re abbreviation terminology -- Please let me know which?  + will clarify.

 

....had to devise my own 'shorthand' due to limited time on laptop.

 

can only sit 1 hr max at laptop -- must get up + try to 'walk' -- 10-20 min of severe pain -- to try to keep mobility / moving

 

can only walk between 3 rooms of bungalow -- housebound 9 months now.... 

 

cannot wear shoes. ankles / feet severely swollen. knees too.

 

+ terrified after DVT, so reduce / prevent another DVT.

 

+ also lay down 2x p. day w/heat packs for pain + elevate swollen ankles, foot, leg.

 

 

****SHORT ANSWER TO YOUR 2 Qs = YES.

 

 

***BUT -- don't know if you've had chance to read my history [HX] in SIG[nature] links??

 

**if so, sorry to repeat... but will try to type fast summary -- just in case you have not read:

 

pre-2016 -- i NEVER had these "issues" pre-benzo... or pre-Baclofen Cold Turkey, to be precise.... then ER literally forced Ativan into my mouth + shot of tramadol, both against my will. 

 

+ GP made me try paradoxical Zopiclone for several weeks + 2 failed anti-depressants trials -- they caused glaucoma...

 

was also put on Macrobid for 1 week for UTI + tried all sorts of natural remedies for 2 wks, but unbearable insomnia + pain.

 

then Clon .75mcg.

 

during this time was diagnosed w/ Fibromyalgia... of course i had pain all over from Baclofen CT!?  it was horrific! 

 

i know it did some serious brain damage + caused rotated hip / leg -- hip bone actually pulled up and outward.

 

Clon. caused joint pain + muscle tension 1st dose!  GP never believed + refused to let me stay on Ativan, which didn't cause body pain.

 

Clon. seemed to 'lock up' my rotated hip + never been able to walk properly while Clon was 'working' for 22 months. lost ton of muscle mass even tho walking more + aquafit, etc.

 

could walk a bit -- but unevenly + hip pain + knee pain [a prior problem] worsened due to joint pain + swelling in knees.

 

then nerve pain in foot + limping when hit tolerance.  then Achilles pain 1 yr ago...

 

new GP insisted on updose + got severe tension in legs.... then another updose to 'relieve' tension'....  GP did not believe it was the CLon -- said it was the Fibro..

 

downward spiral after many failed updoses + failed direct c/o to Valium.

 

then tried Ashton myself... but after 1 month + multiple hip / leg spasms + weakness, full body atrophy, etc -- was pulled off.... + 10% cut overall.

 

lasted 3 wks, then Psych said to updose to 4mg!  said i'd be " worse off the Clon than on it".

 

Psych also refused to believe the hip/leg tension was due to Clon updoses -- said was Fibro/CFS.

 

discharged me on the spot b/c refused to updose to 4mg. or take Lyrica.

 

got desperate + thought Psych correct -- so did 2 small updoses due to 10% cut off Ashton, but made pain + tension much worse.

 

then swapped out those Clon updoses w/Valium to relieve tension + pain.

 

but now, after 7 months, tolerance to both Clon + Valium + interdose w/d, etc.

 

GP kept pushing me to take Lyrica for 3 months, to help get off 2 benzos, Valium 1st.

 

in Jan - took only 4 days / doses of 25mg Lyrica - gave me severe swelling of ankles, left leg + foot -- then full blown DVT.

 

also triple pain + tension, horrific GI issues, etc.. still....

 

 

SORRY.... MUST get up now .... please can you let me know more about your experience?

 

- when 'disorder' sxs started ?

 

+ your tolerance + taper w/d sxs ?

 

many thanks + peace + healing to you, dear buddie, hold on x

 

 

i went through a lot of the same exact things. took me over ten years to finally get off the klonopin of which i could not taper for the life of me and had to cold turkey which i will forever regret. i also found that Ashton's taper was still too fast but even so i just could not taper.

 

 

 

 

 

[[ch...]]

oh dear.... thanks v much for sharing a summary of your story Prettydaisys... 

 

v sorry for your suffering... want to post/ask/engage more but v poor internet atm ...but will be back asap, promise x

 

[[cl...]]

'movement disorder' getting worse everytime i stand up and try to walk

- even when laying down sitting it happens

head pressure / dizzyness, head bobbling violently left to right / front to back torso lower back spasms and sharp pain in temples and back , knees buckle and collapse fall to the floor

- have been going to psychologist for therapy but talking about complications of anxiety feelings is NOT helping this condition

- on top of this we had bad rain snow storm over last weekend and bottom level of my house was flooded with all my CDs DVDs musical instruments and electronics laminate floor got water damaged / ruined

didnt need this to happen right now

not sure i understand all your abbreviation terminology but yes i am getting windows here and there and today started out okay and by afternoon the movement disorder stuff came back again which makes it hard to plan for the future...

windows and then four days of symptoms...all over the place

 

- so you have a movement disorder most likely caused by psychiatric drugs clonazepam? and Valium??

- are your doctors also claiming it has nothing to do with drugs and is complications of anxiety and or depression??

 

ClonazX -- thinking of you + really hope you begin to get a few more tiny 'windows' soon.... 

 

following your thread since start + posted i already have some of these SXS....

 

SO.... now it's worse...!  had 1st EVER violent jerking of neck / head + ankles / feet  :'(

 

had barely managed to MT a measly 4% C over 2 wks  [holding V @ 8mg]

 

then tried a full 5% last week.... but full body tension + joint pain got too much 4th day + night was so horrible, no sleep.

 

so @ 4am, added crumb of 4% C back as 'dose correction'.... so still a 1% cut.

 

then PAIN SO MUCH WORSE.... + then the violent jerking... terrified + laying there waiting for the next violent SXS... but just total insomnia + fear, palps, etc.

 

+ stuck on both C + V... either of which seems to be causing these horrific SXS.

 

scares the hell out of me + still got MILES to go.

 

my spouse just could not believe such a tiny 'homeopathic' / 'placebo' rescue dose could cause this....

 

don't know if you've read my HX... but you can see just from my SIG -- been messed up so bad too -- by 5 GPs, Psych, Rheum + ER Doc...

 

+ more recently -- forced Lyrica trial + 2nd failed Ashton.....  + it all started w/ forced Baclofen CT.

 

so... it's official now, for me too... this movement disorder...

 

yep -- getting crowded in here, so guess we're not alone.....

[[ch...]]

oh no - are you OK after falling?  do you fall often?

 

almost fell badly last week -- so afraid of falling, close calls a few times now.

 

legs, knees, ankles, feet -- so stiff + weak.

 

really hope it's just a short wave you're in... + no new symptoms.

 

your little windows will be back soon + bigger, wider.

 

....i'm still taking these poisons... so i don't know much RE post-WD.... hopefully others will chime in soon...

 

have you been tested for Lyme?  do you have swollen knees + ankles?

 

really sorry to hear about the flooding too... my heart goes out to you buddie x

 

 

 

[[ch...]]

Prettydaisys

 

back online now + trying to catch up, slow going.

 

found your blog + trying to read your story.... so sorry you had a bad fall, hope you're on the mend.

 

i want to CT or detox... i just cannot fathom trying to taper these 2 benzos at this stage.

 

10 yrs... OMG.... i know you regret CT....+ wish you could've tapered too.... did the Soma, etc, not help?

 

3rd try Ashton in FEB... but already tolerant to both C+V.... so CO did not go as it had in SEP....  so tried rapid CO + whopping 37 mg Val did nothing at all, after 1 wk C WD...!  shocked me... totally different than 1st + 2nd tries.... brain so confused now.

 

i feel like i already CT'd... similar sxs as you + Clonaz already.... not sure i will survive these tapers ....?

 

i should have tapered 2 yrs ago at original low, stable dose... Docs messed me up so bad.

 

your Clon taper -- you weren't able to b/c -- pain, trouble walking, disability.... ie, same as ClonazXXX ? 

 

.... also, same probs with your Val taper ?

 

did you have joint swelling in legs too?  have you been tested for Lyme?

 

had MRI 2 yrs ago for MS but partially negative [funny feet thing happened] ...nothing like this before benzos / Baclofen....

 

 

PS:  ClonazXXX -- so sorry to ramble here... maybe i should post Qs to Pretty on her blog 

 

tho, your thread is a place for the few of us on BB to gather + support each other thru this horrid struggle.

 

i hate this ... Docs disbelieve + keep denying benzos injury.... for me, it's always the Fibromyalgia/ME....

 

Tho.... i do also wonder about Lyme....that's why i ask you both.... or Cipro/floxed?

 

sharing hope + healing w/you both.

 

[[cl...]]

i usually fall after with my knees buckling and end up on the floor

legs feel numb starting to get pain in back and body feels numb / weak all over

 

- yes checked for all blood tests found nothing

- it is brain and nervous system damage from benzo usage and discontinuation that effects signals from brain to nerve cells and muscles [dopamine, gaba, serotonine, receptors not working] NOT complications of anxiety / depression as my doctors and psychologist have suggested

 

- i am sick of playing the psychologists game telling me i have to believe and buy into their diagnoses, psychologist is doing nothing to correct or fix mental or physical symptoms asking me how i feel

- now with the added stress of losing everything in a flood i am not in a good place and ready to give up

 

oh no - are you OK after falling?  do you fall often?

 

almost fell badly last week -- so afraid of falling, close calls a few times now.

 

legs, knees, ankles, feet -- so stiff + weak.

 

really hope it's just a short wave you're in... + no new symptoms.

 

your little windows will be back soon + bigger, wider.

 

....i'm still taking these poisons... so i don't know much RE post-WD.... hopefully others will chime in soon...

 

have you been tested for Lyme?  do you have swollen knees + ankles?

 

really sorry to hear about the flooding too... my heart goes out to you buddie x

[[La...]]

clonaz, why do you continue to attend those sessions if you feel they're so problematic? It doesn't make sense. Why not cancel or find someone/something else that could be more helpful and supportive?

 

Also, why not get a cane or walker for help with walking? Some of us need these things in order to prevent falls, which could be quite serious. I've already had a fracture due to my dizziness, so I highly recommend you take preventative action with a walking aid while you're dealing with these symptoms.

[[cl...]]

um why not? because it is a requirement by the government social services for disability assistance payments to get doctors notes for medical disabilitys

- i am discontinuing the psychology therapy

- and the doctors are the ones denying it was the 'medication' drugs that caused all this

- i have doctors and social workers asking me why i am no longer taking drugs

and suggesting stupid things like parkinsons drugs and getting deep brain surgery [NO thanks]

nobody gets it!

- and tried a cane and walker unfortunately the shaking / tremors spasms are so severe walking aids do NOT help and slip out on the floor

- i dont foresee these symptoms going away anytime soon

- thanks for your opinion and question 

 

clonaz, why do you continue to attend those sessions if you feel they're so problematic? It doesn't make sense. Why not cancel or find someone/something else that could be more helpful and supportive?

 

Also, why not get a cane or walker for help with walking? Some of us need these things in order to prevent falls, which could be quite serious. I've already had a fracture due to my dizziness, so I highly recommend you take preventative action with a walking aid while you're dealing with these symptoms.

[[ch...]]

Clonaz -- please don't give up... 

 

i'm so sorry about the falling + pain.

 

+ the flooding + loss of items.... geez...  i was hoping s/things could be salvaged... but this happened to me too...basement... it's hard, i know.

 

do you have any help ? can you get any support ?

 

i also wish you could be more stable, wish there was some other way for us. 

 

it is dangerous + scary... as w/ poor Lapis + her fracture.

 

but totally understand ....  i don't have upper body / arm strength to use cane, whole body too stiff + wobbly -- i'd need 2 canes... but that wouldn't work too well either. 

 

and feel too weak + wobbly to control a walker, i think, haven't tried yet...

 

all my Docs also deny it's the meds... won't even discuss them...

 

they keep using Fibromyalgia as excuse.... + immobility, obvs.

 

i do hope you can still get disability payments, somehow.

 

i've just applied, will be ages before i get a decision. 

 

 

thinking of you - please hold tight to hope x

 

 

 

 

 

 

 

[[La...]]

A two-wheeled walker (i.e. two wheels in front, two gliders at the back) is easy to use because it glides along the floor, and it's very stable -- way more stable than a cane. A cane is really only for someone with a slight balance issue, but one is not meant to put weight on it. The walker has saved my life a million times now and reduced my dizziness-related anxiety. It's there to keep me walking in a straight line and reduce the chance of falls.

 

Maybe you guys can rent one before buying in order to try it. That's what I did.

[[La...]]

Just following up on the walker: A four-wheeled walker or rollator would NOT be a good choice, under the circumstances. This is the kind that makes sense to use for what you're describing, but it would be best to consult with a physiotherapist who can guide you. It doesn't make sense to me just to suffer when there's an obvious option for improving your movement and potentially protecting you from falls. Why not see a physiotherapist to get some help?

 

[[cl...]]

thank you

- today was really bad

i think the stress from the the flood / water damage to my stuff set off / triggered bad violent head shaking / tremors the pain was unbearable shooting through my brain eyes and back

tylenol does NOT help much

- i cant go on like this.............

every day and night

Clonaz -- please don't give up... 

 

i'm so sorry about the falling + pain.

 

+ the flooding + loss of items.... geez...  i was hoping s/things could be salvaged... but this happened to me too...basement... it's hard, i know.

 

do you have any help ? can you get any support ?

 

i also wish you could be more stable, wish there was some other way for us. 

 

it is dangerous + scary... as w/ poor Lapis + her fracture.

 

but totally understand ....  i don't have upper body / arm strength to use cane, whole body too stiff + wobbly -- i'd need 2 canes... but that wouldn't work too well either. 

 

and feel too weak + wobbly to control a walker, i think, haven't tried yet...

 

all my Docs also deny it's the meds... won't even discuss them...

 

they keep using Fibromyalgia as excuse.... + immobility, obvs.

 

i do hope you can still get disability payments, somehow.

 

i've just applied, will be ages before i get a decision. 

 

 

thinking of you - please hold tight to hope x

[[pr...]]

Just following up on the walker: A four-wheeled walker or rollator would NOT be a good choice, under the circumstances. This is the kind that makes sense to use for what you're describing, but it would be best to consult with a physiotherapist who can guide you. It doesn't make sense to me just to suffer when there's an obvious option for improving your movement and potentially protecting you from falls. Why not see a physiotherapist to get some help?

 

 

 

 

i think i now have to get one of these walkers. i have had a severe setback that started just this last tuesday out of the blue although i am tapering from the progesterone i am going extremely slowly and cannot fathom that this kind of setback has anything to do with that? i cannot walk at all now. it's beyond scary. my mother has had to take me to the bathroom from me sitting on my chair which is just 3-4 feet away. i am hobbling around when i must go into the kitchen. where can i find this particular walker? - is there a name for it?

[[pr...]]

thank you

- today was really bad

i think the stress from the the flood / water damage to my stuff set off / triggered bad violent head shaking / tremors the pain was unbearable shooting through my brain eyes and back

tylenol does NOT help much

- i cant go on like this.............

every day and night

 

 

i am starting to think that the unbelievable stress i have been under the past 3 weeks may have caused this very severe setback. i cannot figure out for the life of me what else it could be? could stress really do this?

[[cl...]]

yes stress can def push us over the edge

- i thought i was making progress and then all my stuff and housbasement apartment got ruined and i am a mess worse than before now................

thank you

- today was really bad

i think the stress from the the flood / water damage to my stuff set off / triggered bad violent head shaking / tremors the pain was unbearable shooting through my brain eyes and back

tylenol does NOT help much

- i cant go on like this.............

every day and night

 

 

i am starting to think that the unbelievable stress i have been under the past 3 weeks may have caused this very severe setback. i cannot figure out for the life of me what else it could be? could stress really do this?

[[cr...]]

Just gonna throw this out there but i developed some crazy movement disorder stuff a few months ago. Doctor recommended b complex after i tested low. Within 2 doses it seems to be gone. Taking daily ATM. Idk if this could help anyone else. Might be risky but it seems to work for me. I did some reading and some sources show that movement disorders can be caused by low b sometimes.