The jumping buddies group

[[Be...]]

Hi Carem!

 

Yay, you are 60%! I had two 95% days in a row. Getting the jitters now, but such an improvement over morning surges and internal vibes. Is your cog fog lifting?

 

Bennie

[[ca...]]

Thanks Bennie. Good to meet here!!!!

I am so happy you are having 95% days. This is amazing. I dont think I had a 95 full day since I started tapper but I have 95% hours. like this morning :) Yes!!!! Brain fog is lifting now many times for several hours. Then it comes back but its a relief!!  Gives me lots of hope that one day it will lift.

Many more 95% days are waiting for you. Enjoy it. You deserve this so much.

 

Sending all my love to everyone on this thread. We did it!!! We jumped! Yes- its a long journey to healing and not always easy but just the name of this thread- jumping buddies makes me very proud to be on it!!

 

Hugs

 

Carem

 

[[mr...]]

Hi fellow jumpers.

Just found this group.

My mom had to stop valium at .007mg when she was in the hospital because the pharmacist couldn't wrap is brain around titration.

I have to say the first week was ok, but the hospital left my mom severely anemic and malnurished.

She is 3 weeks out and it seems the severe nausea is every other day.

I hope this goes away because it is causing malnutrition.

She has to eat at least 45gms of protein per day due to her low kidney function from Microscopic Polyangiitis (a form of vasculitis).

I would have rather tapered slowly to avoid these severe symptoms, but now that she is off, maybe she can go into remission from her disease.

Hope everyone is doing well and getting their life back.

 

[[Be...]]

Hello mrtmeo,

 

I hope your mother is able to eat more I am wishing healing for all us!

 

I am two months off Klonopin, so Jumping Buddies is where I belong. Perhaps you all understand the frustration that comes with feeling so bad after successfully tapering.

 

The past few days I ramped up to having an anxiety attack. I realize I'm in perimenopause. My period came 8 days early and I've been in hell. The joints mostly in my hands ache, some in my feet. Feels like I'm running on adrenalin. My morning cortisol was checked and I'm "fine". Perhaps it would be different if saliva was tested throughout the day. But so what if it was—what can anyone do to help us anyway? Supplements and hormones are a crap shoot and I'm not feeling lucky. I am deconditioned too. I think of my grandmother's body when I look at my flabby arms and legs. Exercise is out of the question now. I do all the other things known to help. Meditation, good nutrition, lower stress, avoid toxins, distraction... TIME—Is that it? I'm in a down place.

 

Who has made it through withdrawal AND perimenopause?

 

Bennie

[[mr...]]

Hello mrtmeo,

 

I hope your mother is able to eat more I am wishing healing for all us!

Thanks Bennie.

Looks like you tapered all the way down.

I pray the next couple of months brings you relief.

 

[[sl...]]

New here.  Trying to find a group where I fit.  I followed this group online when it was started by a few members with hypnic jerks.  Are there any here with that symptom?  It is debilitating and ruining my life.  Please write me if you have this symptom... thanks!

 

Love,

 

SleeplessMT

[[Be...]]

I have them but there's nothing I do about them. Screws up sleep, for sure. So sorry.  :'(

[[sl...]]

Benniejets,

 

Did they get better at a certain point? How much sleep can you get?  My problem is that they will keep me up all night for days. 

 

 

[[Cl...]]

Elle  I'm so happy to hear from you as well! Anything I've done to help in the way of support is absolutely my pleasure and freely given when I can post myself. I'm sorry you're struggling I thought as much :'( this is a daunting journey at times. Listen, I was astonished to read you also have the posting fear happening! I did not realize it happened to you as well! Truthfully it's been one of the more perplexing sxs for me. Multiple times I've tried to explain this to abcd and I simply cannot find the words to describe this!!!!!  There is literally a heightened physical reaction to posting.  you're not alone for sure this happens to me for months at a time. Honestly I don't care how crazy it sounds there must be some sort of correlation. I have literally been forcing myself to try posting through it the last few days.... Arghhh....much love to you Elle

 

 

Hi,

I also have this same issue, for me to post is like overwhelming, thus I can only post in my blog and PMs, somehow this week this posting-phobia has decreased. Could it be PTSD?, fear due to the sad stories that make us remember ours?, fear of the future?

Clona

 

[[Sa...]]

 

Hi jumpers    I see there are some new jumpers here congrats to Carem Mrtmeo and Sleepless! Mrtmeo I hope your mom recovers quickly from her illness. Nausea is terrible. Sigh. I know it well and I've tried a lot of things to no avail. It comes and it goes for me. Sleepless as one of the original jumpers the jerks you're speaking of very much disrupted my ability to sleep. They do lessen but it takes time. Carem you sound as though you're doing well that's fantastic!

 

Bennie I hope you're feeling better than a few days ago  I know acute is incredibly hard. Just be as kind to yourself as you can, you're doing all the right things, taking care of yourself as best you can. I can't speak about perimenopause I dont quite remember that particular hell 

 

Clona OMG another person having trouble posting! Honestly if I'd known this was so prevalent maybe I'd have mentioned this a lot earlier but it sounds a little too woo woo even to me some days and here I am almost 20 months out just talking about this now 

 

I'm not sure what it is exactly...after all for the first oh say year or so I truly didn't have a lot of posting issues - after all I was rather chatty maintaining a busy blog until May when I largely abandoned it when posting became more and more difficult and I was deliberately trying to engage more and more with the outside world getting myself back into life.  From time to time it would happen I'd notice and I didn't pay too much attention when it happened. Then I had a really nice stretch of months where I was seeing some rapid improvement and generally was spending a lot less time here and therefore posting a lot less often. (I'm thinking here bear with me  )

 

 

Truthfully its seems to have reared its ugly head as time went on, becoming more and more of an issue or maybe I just noticed the correlation between posting I'm not terribly sure. All I know is there are some days and times I will go to post and simply have to bail. I just can't do it. It's been very frustrating. There is a definite uptick in sxs- a feeling of being electrified that takes a long time to wear off racing heart etc. I've used all kinds of exposure therapy from the beginning to propel myself through a lot of difficult situations or fears. This is one that seems irrational frankly because I feel as though most of my mental sxs have nearly resolved themselves. That's where I've seen the greatest improvements  and my cognitive skills are rapidly improving. 

 

I can't be any more specific Clona, but I'm sorry you're having the same thing happen. All I can say is it must not be as unusual as we feel after all you're now the 4th person on this thread to mention this difficulty. Arghhhhhh! I hope you're doing well I can't see your signature and I've forgotten how far out you are!

 

Love to everyone else who's lurking 

 

 

[[sl...]]

Saga,

 

Thanks for the encouragement- lord knows, we all need it!!  The recovery from these jerks is too painfully slow (almost unrecognizable).  To make matters worse, my insomnia is horrible too.  I wake up every hour or two and get 5, maybe 6, hours total sleep.  And that's medicated!  Without Mirtazipine, I would have had to reinstate Clonazepam.  I really don't think I can sleep without a med.  I tried during acute but went 4 days in a row w/o sleep.  Agony.  Pre-benzo: never a day of depression in my life.  Post-benzo: Crazy depression with many days of suicidal thoughts (due to lack of sleep).  Scary.  Anyway, I'm glad you are still active on here and giving some hope to us.  Do you recall a member named Buddy42?  When I lurked on here during acute, I always wanted to reach out to this person as she seems to have gone through my exact same issues.  I wonder if she's cured of it?  I've tried PM'ing her, but she must have moved on with life.  Hopefully.  Take care.

 

SleeplessMT

[[mr...]]

 

Hi jumpers  Mrtmeo I hope your mom recovers quickly from her illness. Nausea is terrible. Sigh. I know it well and I've tried a lot of things to no avail. It comes and it goes for me.

 

thanks Saga.

She is still very ill and I think the pneumonia is back.

I was hoping the nausea would be gone by now, but it is not and her appetite is terrible.

I have a friend that went thru k wd and he thought all his sx's left were do to the benzo's, but I told him to get checked for sleep apnea and he found out that is what he has.

He has done liver flushes, takes a B-100 and Vitamin D and now, he is sleeping better and sx's are going away.

[[Be...]]

Benniejets,

 

Did they get better at a certain point? How much sleep can you get?  My problem is that they will keep me up all night for days.

 

Hi Sleepless,

 

The hypnic jerks come and go. Worse when trying to nap, not as much an issue at real bedtime. But waking every 2 hours—c'mon! With surging cortisol. I really hate this. It's making me very cranky. Yesterday and the day before though, the daytime was very good. But any amount of stress (sun, agitating conversation, or reading here on BB) will rev me. Unfortunately, I don't know what to suggest for the hypnic jerks other than try a little but of magnesium glycinate before bed. I say a little because it is a vasodilator and could give a rush. I feel for ya.

 

Hi Saga, Clona and everybody—

I kinda relate. I'm in a bit of an antisocial mode, barely interested in posting. Maybe because the relative newcomers remind me after all this time, I'm still not well. And when I'm feeling OK, Im so out of here. Taking a break from BB is like gaining a window. Anyway, I'm now the one that needs the "you can do it, hang in there!" Of course I'll plug along, I'm not a quitter.  But the game has changed. It's comfortable hanging with the jumpers. There's a mental hurdle we've all gone over, that the end of taper is the beginning of an unmapped road back.

 

By bedtime, I'm labile. Tears come just because. And nausea comes and goes. I have success eating, though it's a drag. Let's see what tomorrow brings.

 

Wishing everyone well,

Bennie

[[Sa...]]

Sleepless  No I haven't been in touch with Buddy she simply seemed to vanish! I hope she's doing well and recovered. I'm sorry she didn't respond to your pm. I'd love to know how she's doing myself! She did drop in I forget how long ago for a one time post but she'd didn't mention the jerks. I'd take that as a good sign! Sleep is a very difficult issue I understand. I didn't have any issue with sleep until post jump then it began with a vengeance. Yay! I'd been medicated quite heavily for nearly 3 decades. The kind of sleep I'm experiencing now I couldn't begin to fathom it's that good! So I'm going to challenge your belief you can't eventually sleep unmedicated  it just takes time sometimes a lot of time but in the meantime I know it's so very difficult. All of your sxs are very normal and you will see improvement.

 

Mrtmeo I'm so sorry to hear your mom may in fact still have pneumonia  :'( I'm sure that's not helping since she's still in the acute timeframe. I'm pretty sure I don't have sleep apnea....the last month I've been logging nearly 8 hours of sleep...with the usual 4 am wakeups...but I can usually get back to sleep. This is a luxury I haven't experienced in nearly 30 years!

 

Bennie beside your name it says survivor....and so you are    What you need to do now is simply survive. I understand your frustration. This is not fun. I used to sarcastically say are we having fun yet the days seem to melt together and little progress seems to be made. It's difficult and disheartening most of the time because changes are so slow to happen. But I can promise you you will see changes for the better. You can do this! And by the way mood is always understandable when you feel like crap posting is always an iffy proposition but it made the time pass faster for me and kept my mind engaged. That's what it's all about.

 

[[Be...]]

Saga,

 

The difficult sleep has really only been since jumping. How long did it take to just wake once at 4 AM?

 

Bennie

[[Cl...]]

Saga, Thank you for your reply, I am back to my posting-phobia but I wanted you to know I am glad you sound good to me and I am wishing you the best, the very best, I hope one day I can be as kind as you...well, my English does not help me much 

 

Bennie, I also started to wake up extremely early, 2-3AM sometimes, after finishing my taper, at first not always got back to sleep, but then you know I started to go to the gym at 6, little by little started to improve, my aim was, and still is, to arrive to bed extremely tired, then I started to sleep very early, at 9 or even before, that is how I managed to increase my sleeping hours. Then I stopped worrying about it, because I knew the following night I was going to sleep better and even I felt sleepy after 5, no way, to the gym for me to get tired that day. By now I still wake up very early, even on weekends I wake up at 5:15-5:30, whatever the hour I go to sleep. As you, I am using YouTube videos for sleeping and play them the whole night  , so If I wake up in the middle of the Night, I can go back to sleep again. Lavanda pillow mist is also helpful. A hot bath before bed is also part of my routine. I know you are not ready for exercise, but you will get there very soon, by know perhaps you can only get busy or watch TV or log in here, at 6 or 7AM in order for you to sleep earlier.

A Big hug my Friend.

 

Mrtmeo, I hope your Mom gets better very soon, you are a great Son.

 

Sleepless, I sent you a PM.

 

To All the Jumpers here, yes, we are brave, I wish you the very best.

 

Clona 

 

 

[[Cl...]]

Saga, in my previous post I forgot to tell you I am 6 months out, almost 7, Thank you for asking  I cannot complain. Both windows and waves seem to be decreasing, baseline still going up. That peaceful feeling inside my chest, you helped me to figure out 6 months ago, has become (almost) constant, I think I had a pressing force inside my chest I did not notice until it started to leave me. For that, I am very grateful. I still do not remember having this peace before Rivotril. Now I only notice it when I am not having it.

Clona

[[Sa...]]

Bennie  are you sure you really want to know    I jinxed myself and I'm working on 3 hours of sleep go figure    well ok I won't lie I just can't I'm sorry ..it took until 2 months ago before I could make it with only one wake up. That's not to say sleep was always awful, mind you, it just took my body a long long time to get it consistently right. I'm fairly confident this is my new normal! I do not worry now about the occasional night of bad sleep after rampant insomnia for such a long time. I'm dreaming and waking feeling refreshed most days and that's a luxury I've havent known in many many years.

 

One thing I found helpful was to practice good sleep hygiene by going to bed at the same time every night. Crazy as it sounds I also did not nap during the day. If I couldn't sleep I tried not to stress about it but it did make for some seriously long days. Clona made some great suggestions. I also used sleep meditations there are some amazing ones on YouTube. Your body will get it right Bennie 

 

 

Clona  what a beautiful thought thank you so much. I'm also wishing you the very best! Your English is just fine by the way no worries  you know I can hardly believe you're nearly 7 months out that's so great! You are well on your way!  I'm so so happy you're feeling your baseline continue to grow. No complaints now that is amazing  I'm teasing you!

 

...you know I distinctly remember talking about what you call Paz. It's true it's an amazing feeling. I'm so happy it's mostly stayed with you!  When I felt that myself I nearly wrote a success story simply based on that feeling! It was something I couldn't remember experiencing or feeling in all the years I was medicated! I did unfortunately lose it the last 6 months or so but it's back now and it reminds me of why I was so elated and excited. There nothing like it nothing like it at all  sigh....this alone tells me we can all heal even from serious poly drugging  

 

 

 

[[Be...]]

Saga,

Thanks for the info. It is what it is.  I've got good sleep hygiene. I meditate myself to sleep within minutes. When I wake up from surges, sometimes I'll be awake for minutes, sometimes hours. I just ride it out. Sometimes I feel like crap the next day, sometimes not which is baffling. This morning I was awakened not by surges, BUT husband needing to be taken to ER. For once, not me! He's OK I think but needs a doc follow up. Today, no toxic nap after going back to bed for two hours. That was a first. What a wacky roller coaster ride.

Bennie

[[Le...]]

I just recently noticed something..Posting makes me feep good. Ibahd been a slient partner on BB for a little while but just venting or reassuring BBs feels pretty cool.

 

I wish I could say I was healed but well, I guess its not my time..yet..Windows and waves are my constant and in a good window I think to myself "this is it". Only to come crashing back down..

 

Victory is imminent...It must be..

[[Be...]]

Hi Leo! Post away. 

[[Sa...]]

Omg Bennie I'm so sorry about your hubby  hugs to you I'd have been a puddle on the floor trying to deal with the ER at your stage...I'm glad everything seems to be ok and I hope it all goes well today! Yup your sleep pattern sounds pretty normal to me unfortunately.  you're right this is a totally whacky ride, lol...

 

Leo I totally agree! Except when I'm having issues  Post away you know we all go through stages when posting habits change for whatever reason...it's the nature of this I've found...this is a tiresome business no doubt. You're doing great Leo 

 

 

 

 

[[Cl...]]

Saga, I am very happy to hear you got Paz back, I also felt like writing a success story when I first had it 

 

Leo, keep on posting my Friend.

 

Bennie, I am glad your husband is fine and you managed to sleep more.

 

To All the jumpers I wish a nice day 

[[Le...]]

Today I want to run....Not just jog, run until I cant any more. You know what friends? As hard as it seems and as difficult and intimiadtin it may seem, your  body will thank you for it.

 

Have a wonderful day guys, Gods blessings to you all.

 

Leo

[[sl...]]

I don't know how much longer I can take this! 1 hour sleep (with mirtazpine). Relentless jerks and head noise everytime I dozed off.  So scared that I'm doomed with this. I was very happy yesterday making plans to buy new furniture and redecorate. Today, I can't even get excited about life, let alone decorate. Worse yet, I have 2 girls that need me.  I can't hardly crawl out of bed for them.  Very scared today and sick with anxiety over this crap.  Sorry, I needed to vent.