The jumping buddies group

[[...]]

Elle-

Hi. I sent you a pm, did you receive it?

Mm

[[ve...]]

Hello all,

 

I wish we could meet under better circumstances but I was a really short term user (3 weeks of benzos) and I'm experiencing really bad hypnic jerks that keep me up awake all night. 3 sleepless nights this week. Had them really violent in acute (which I could actually ignore and fall asleep) but now they're successive and annoying and really just keeps me up awake.

 

Anybody else who has this? I'm already into my 4th month and I thought I'd have some relief by now. How does the rest handle the jerks? I just can't seem to ignore them, I often get frustrated and jump out of bed.

[[Bu...]]

Hello all, I got back into this after a huge break. I started this group about 2 years ago and things are so much better. Exercise and loosing weight have helped me. I took on guide dog puppies and I now walk about 5 miles a day.

 

All I can say Veggie is that it does get better. In the early days people said that to me and I didn't believe them but it did. I actually measured my blood pressure as well and oddly I found that when it was high he jerks were worse. Now they are better.

 

Good luck everyone and I hope you all find healing. It's lovely to see this group still going strong.

 

Love Buddy

[[sl...]]

Hi buddy42!  I've been wanting to chat with you for some time!  I'm going to send you a pm... Please look for it.  I would love to connect with you about the dreaded Hypnic jerks... Thanks!

[[ma...]]

Hey Buddy42

 

I am 7 months out and having horrible hypnic jerks and i am getting literally 0 sleep.

Any advice on how i can relieve these symptoms a bit.

 

Marct456

[[Be...]]

You can try magnesium glycinate before bedtime for hypnic jerks. Exercise, even light walking can help discharge some of the energy. Both promote relaxation.

[[Bu...]]

Exercise certainly helped me. Things improved hugely when I started walking 5 miles a day.

 

Love Buddy

[[As...]]

Hello all,

 

I wish we could meet under better circumstances but I was a really short term user (3 weeks of benzos) and I'm experiencing really bad hypnic jerks that keep me up awake all night. 3 sleepless nights this week. Had them really violent in acute (which I could actually ignore and fall asleep) but now they're successive and annoying and really just keeps me up awake.

 

Anybody else who has this? I'm already into my 4th month and I thought I'd have some relief by now. How does the rest handle the jerks? I just can't seem to ignore them, I often get frustrated and jump out of bed.

Hey veggie,i exactly slept 0 hours last night due to hypnic jerks and i was about to post that.are your jerks severe like whole body shake or on limps? my jerks happens alternative on head,legs and arms and i get them the moment when i'm drifting off.are you the same ?

[[ve...]]

Hey ashkan,

 

Yesss they happen like every 15-30 minutes in all parts of my body. Some are strong, some mild, but all annoying as hell. I just jump out of bed after trying for a few hours.

[[sl...]]

Veggie... Do they happen to you even when you aren't dozing off?  How much sleep are you getting these days?  Mine have become even worse lately.  My whole body jerks and it feels like a seizure in my brain some of the time. 

[[ve...]]

Hey sleepless,

 

I only get them at night. I get some muscle twitches in the day, but they don't bother me too much. My recent pattern has been 0,7,0,7. I make it up with about 7 hours of broken sleep. Better to jump out of bed than lay there and have the jerks drive me demented I guess.

[[sl...]]

Veggie- are you still having sleepless nights every other night?  Do you lay in bed the whole time?  Last night was awful!  A jerk or spasm ever 30 seconds!  It was awful and my body is so fatigued from no sleep.  Is your anxiety through the roof with this crap?

[[Ke...]]

Hi there

Today s my 25th day since jump. My anxiety seems quite high. I thought I would feel much better by now.  Am I expecting to heal too quickly?  Is this normal?

Encouragement please.

 

K

[[Lo...]]

Hi everyone, been a long long time. At least a few years i think. Just wondering how we are all going now that we are all a long way out these days.

 

Im coming up 2.5 years , not quite healed but getting close. I had alot of muscle pain/strength and fatigue issues that seemed to go on forever but are finally starting to resolve. Back at work part time and connecting with friends.

 

Things are looking very positive for me

[[Lo...]]

Wow if no old crew are around anymore this is great news!

[[Jo...]]

Hi everyone,

 

Just caught up on the last few pages of the thread !!! Boy, I feel right at home after reading all of your posts !!! First of all, I'm in then"klonopin splitting club" too... That was my vice also, and it started in 2006..... Allow me to help you feel better about "thinking you had another illness".... hopefully this will give you a good laugh!!!! It's truly comical now ( and sad ).

 

I was told MS as well, 9 brain MRI's since then , a spinal tap, about 7  different neurologists , many other doctors, was also told Lyme disease, CFS, weird toxicity's , sarcoid was mentioned, and most recently the crazy carcenoid tumor ( nuclear scan was 2 days long and just finished today ) !! No results yet, but assume all of my suffering, or at minimum HALF has been from those tiny little pills !!!! ( I to never knew what tolerance was... Was living in WD every single day, thinking I was about to seize many times, many ER visits , didn't leave the house for long periods, in bed for extended periods, and so on). I was seen at Duke Univ., Cleveland Clinic, Mayo, Mass General, UPENN, Johns Hopkins, visited a wonderful clinic in Switzerland twice, and many other docs.. Traditional ones, naturopaths etc....All the brilliant ones !!!!!!

 

Oh, I'm forgetting about 7 endoscopes , and 3 colonoscopies from the severe  stomach stuff, primarily bad gastritis.... Again, likely that little pill !!! I could keep going, but I think y'all know the drill, the history , and get the full picture real quick!!! How unbelievable is it that most of us faced these years thinking something horrible was wrong..... The tests, the doctors visits, the stress of not knowing....

 

Before anyone thinks I'm truly crazy..... my life pre benzo  : was completely healthy, a fully functioning, active and extremely happy and busy individual. Own and operated a commercial development company. Built hundreds of apartments, shopping centers , office buildings, etc... ( from age 25 to present ) except for the last 8 years of benzo . Had to hire someone else to run my company , because I was "too sick" to work ..... My brain could handle 20 things at once . Now I'm lucky if I can stay in a conversation or comprehend quickly enough to respond to someone. I don't go to my office at all. I try and stay in touch on the phone ( on good days ).

 

I Cannot imagine the true amount of people that have suffered or are still suffering like we did.. We are just a handful of people , all with a common thread and very identical stories.... The total number and amount of loss must be extreme ( medical bills, missed work, treatment, cost of the actual drugs )..... It's just beyond crazy!!!

 

Big, I've had your kind of day today. Total meltdown.... But might have been a really good thing .

 

The loneliness was not measurable ( until I get on here and start reading )....., I think I can finally say to myself, that all of this testing, and doctors which never seems to end, will one day be in my past ( when WD subsides ). I really never convinced myself of that until this very movement. Again, reading how everyone else is doing really makes you understand and BELIEVE this will end. We all couldn't have just woken up one day and decided we would feel "sick" with undefined diseases and just so happened we all also took the same type of drug, with the same consequences...

 

Just a glimpse of today ...( hopefully might make someone feel better to know we all get this low)..... I was sitting on the floor for almost 5 hours, organizing my medical records . My doc decided to now send me to another brilliant specialist. This is a new GI doc... An apparent Liver specialist. Because this months  new "illness" is something called "Porphyria"... Now this is in addition to the Carcenoid they were checking for today and yesterday ( no results yet)..can't make this stuff up .

 

Anyway, was sitting there so stressed out , trying to put about 1000 pages ( not exaggerating ) in date order so they could be emailed to my doc... I literally just started crying. Uncontrollably . I could not follow what I was doing. Couldn't get the pages in order. anxiety was so high, and my brain just not working. Could not stop crying, not catch my breath, and felt like I was going to pass out. I was so overwhelmed, so filled with anxiety, so sad, and yet angry , hopeless, I didn't know how I was going to finish !!!!!

 

After the day I've had, and then reading all of your posts ( the good and the sad), its really helped me understand I have to stop with all the doctors. Stop letting them look for some other illness. I have to find the patience to wait for my brain to heal . And while I'm waiting, try to help my body heal by eating and exercising when I can...

 

If I can figure out how to put one of those cute tapers on, mine would read " no more doctors, no more drugs... Only windows and a few waves ".. ( I am the worst with computers )..

 

Thanks for letting me unload. Positive from here forward . If anyone needs help on the worrying of other medical conditions , I'm here ! I've been told just about everything, and have the tests and labs to share !!!

 

These docs trying to treat us need to go back to medical school. But a little common sense ( I call it street sense versus book sense ) would be a good start!

 

Sorry for the long post !!!!

 

Did you end up being tested for porphyria?