12-18 month support

[[Ko...]]

Korbe, if I am reading your signature right you are in the same month of w/d as I am...month 16.5? ...I jumped Dec 3 2013. If that is correct , many researchers including Ashton ( revised ) do not consider protracted until month 24 has passed. ..I also have had mostly waves and long periods of what feels like to me continued acute. I have had some windows and sunbreaks but mostly wave and slowly improving baseline. The longest window I had was a 5 day stretch at the beginning of month 16...followed by the wave I am trying to roll out of now.

  . ..I agree with Drew, if there was something that made this easier the news of it would spread like wild fire and we would all be standing in line to sign up. You will find a ton of information on the alternative medication board and the ' other medications'  board. ...Man, I am right there with you...I would give anything for relief from this wild ride..I have tried several otc meds, supplements, homeopathics, vitamins etc. For me, none of them really helped...some of them made things worse. I would weigh it out carefully...you have come a very long way to risk it..  I hope things ease up at least a little.. you are in good company here.  we have all been keeping on keeping on for at least 12 months..many of us well into the second year... we are getting there even though it doesn't feel like it. ....coop

 

Thanks Coop for your usual words of wisdom. I stopped on Dec 2 2013, so we're really on the same path. You sound like you have more widows than me. And on good days I'm about 50%. Haven't had a good day for 6 weeks. I'm hoping this is the last big hurdle to get through and then I'll start to get some windows & healing. Like  a marathon the last mile is the toughest.

 

The Epson salt lotion can be found on Amazon. I wasn't sure if we were supposed to buy it with magnesium or not. I got just Epson salt. Did Parker say with Magnesium?

 

As far as the Flumazil, I think this is a new treatment. I know Ashton mentioned it and said the symptom come back. I'm going to call just to see what they say.

 

 

[[Ko...]]

Korbe-flumazil only works for short periods of time. Several people went to the institute you mention. I believe he used it to get them off benzos and then all hell broke lose when they got home. Similar to a cold turkey.  Post on the general board or alternative therapies and I'm sure someone will know more.  Sorry, if there was an easier way someone woukd know it here and it'd spread like wildfire.

 

 

Well...something revved me and it was either the jogging for 1 1/2 miles(which I haven't had my hr that high for a month) or its rebound stuff from my two days of taking a beta blocker I stopped Friday.  All I know is I just finished a 2hour fear/cortisol rush type thingy.  Yuck!  Not really thinking into it too much.  I tried my damnedest to just be a passenger to the whole experience.  Let it flow through me and acknowledge how I felt but I kept saying "it's part of the healing...no way out but through". 

Be the canoe!

Thanks for the info Drew and I do agree. I won't take any chances. Just curious. Hope your

Migraines ease up, I can't imagine that must be awful. Glad you can still jog. No way I could do that now, I can barely walk. As we always say, thus too shall pass.

[[Co...]]

Korbe....thanks for the heads up on the magnesium lotion. I wish there was a vitamin D that could be applied topically. . since that's how we get it from the sun...through our skin.

.....I also am just sick of this . I am hanging on to every success story that talks about that last awful wave and then decent healing between months 18-24. ...I got hit with d/r that I have never experienced to this level in just this month.  Is there no end to the variations on the theme?

.....good luck with the information.  ..come back and tell us what they had to say.  Wishing you some sunbreaks and a better baseline.....coop

[[dr...]]

Coop the half life is about 8 hours.  That would about do it. Plus until I took the 20mg I never took more than 10 before. I remember having a slight rebound in HR when I used it very seldomly for anxiety in the past.  Ok...I'm done trying to figure this and hope my jitters leave soon.

[[dr...]]

This is unrelenting jitters, fear, and anxiety. Just meditating and hanging on until this passes.

[[Co...]]

Man Drew....so so sorry...it will pass...have you tried a hot bath soak?...Outside for a walk ( not a run)  A hot pack on the back of your neck? ....Bundle yourself up snug in an electric blanket?....Those are a few things I did for jitters , shakes and physical anxiety. None of them made it go away but they helped me get through it.....Drew, this is just a thought and it might not be possible, but could you go off the beta block and the Preventa, wait a week and start the Preventa again at half the required dose.. it's so hard to tease out possibilities. Have you had the jitters and shakes like this before in w/d?

.....keep posting as you can.....coop

[[dr...]]

Coop...funny you should mention that. I've stopped the beta but I was checking on the preventa and it has feverfew which can cause nervousness, rapid heart, and anxiety!  I luckily have the B2 and the magnesium as separate pills just in case I had a reaction. It's something. This just feels weird.  It's so hard to know which way is up but I do bl know I'm sensitive to any med in benzo land. Mag and but D haven't made me feel weird yet

 

Strange though I didn't feel it yesterday.  I so hate all this!!!  Is it just my anxiety, my beta I took two days ago, or this ingredient?  Grrr :'(

[[Co...]]

Drew, when I was in month 6 I took a homeopathic ...totally safe, but it had 2 herbs in it ( standardized Chamillionaire and lemon balm). .both of these impact the receptors for benzo. I was a total mess ...although the insert listed all of the ingredients I had to follow the ingredient links to find out how the chemistry worked on the receptors...I am glad that you have individual supplements so you can maybe try one at a time...in the mean time I hope your migraines back down...drink a ton of water....so so sorry you are going through this Drew.  It's miserable I know. ...thinking of you....coop

[[dr...]]

Gf has had it w me tonight. . Going to have a sip or two of wine to see if it helps.

[[Co...]]

...our families go through hell with us...that's for sure. Thank goodness it's only my dog who has to put up with me...Its my guess that you are going to be out of the jitters by morning...

......grrr is right......

[[dr...]]

I hope so coop.  This is so bad. I don't know what my anxiety is adding to this or is it all my anxiety.

[[Co...]]

Drew, ...right now it is just what it is regardless of cause. Once you get through it you will be better able to try to sort through it. My sense of it is that it is not your usual w/d anxiety...just a shot in the dark.  I am sure that right now you are in that awful loop of having anxiety about your anxiety. I don't mean that as a joke. I have had many tough days in which I was totally anxious about the intensity , frequency and quality of my w/d anxiety.....It's going to be okay Drew.  coop

[[dr...]]

Coop you are incredible. I mean that. I have tears in my eyes as I type this. How we help each other and are there for each other. The only thing I took just now was the magnesium since it has calming properties. 

[[Co...]]

Drew, you have helped me through so many hard days, and you and I have the awful health fear sx in common...I absolutely could not do this without everyone on this thread...this is going to wind down.  I bet you will notice a lot is gone by tomorrow even if you still have some of the ' usual' w/d sx... hold tight....coop

[[dr...]]

Coop-the sad thing is it just may be a really bad day for me and I'm looking for s reason. The preventa stuff may be helping but I'll never know.  That's the whole problem w this process. Not in crisis mode now. Trying to accept today for what it is. Just one day. I'll regroup tomorrow.

[[Co...]]

Happy to hear that things have peaked and are easing. ...You will be able to tell more as you go trial and error sorting through. ...hope you can rest now that the eye of the storm is done....thank you Drew, for all the times you helped me....coop

[[dr...]]

[[Gr...]]

GREENICE,

I thought so too, but was reading some research that they have been trying Flumazil on protracted people and it's working.  I just couldn't tell if lasted.  I think it worked well, but then patients needed follow up infusions because Sx came back, but for some it cured them. Not sure if the Coleman ins used the same method. I think they di 5 to 7 days of infusions.

 

It sound expensive & one must go to Seattle or Virginia. I'll keep investigating.

 

I'm still struggling with body pain around benzo belly and extreme boaty ness. Haven't had a break or window in 6 weeks, except a little less pain.

 

Hope everyone has a good day.

 

Korbe, that's what I remember reading, that it didn't last, and follow-ups were needed. 

 

You're two weeks behind me.  My wave has been around for almost a month.  HH said she had a six week wave around now,  So I'm hoping this will break in another week or two.  So let's hope for a window, and hopefully we won't have to do anything.

[[Gr...]]

Green, ...boy are we in the same place...living with sx...I was back in a wave this morning...I kind of knew it was coming...freaky thick scary 'can't think ' d/r...that stuff just terrifies,me when it is that deep. A moderate level of it I can ignore pretty much. Anyway it lasted for the first part of the day and then gradually lifted to tolerable. Like you I just refuse to give up some things like coffee with my daughter and seeing a movie with her. I couldn't begin to really tell you what was in the movie ( Mama Mia is coming to our city later this summer and she loves it and will go when it's here, so she brought the movie over to watch in the theater facility here).  A total blur in my mind and I literally can not remember taking the dog out this morning, though on a cognitive level I know I did.  This feels like total dementia to me.. then it lifts.  As Sky says, " Gawww"....

....Green, I hope you enjoyed the Rockettes ...nose bleed seats and all.  ....coop

 

Coop, I'm home, and the Rockettes rocked, they were amazing.  It was such a happy show.  I haven't been there since I took my kids more than 20 years ago.

 

Coop, I'm with you, symptoms are tough.  They let up here and there throughout the day, but for the most part they just keep on coming back.  I'm wondering if a "wave" includes some change in mental status that makes us all freak out and go crazy?  I have more of a handle on it now, just meaning that I'm scrambling to cope better and calm the heck down.  This is very, very challenging, though.  I've been reading success stories, trying to stay positive.

 

I was feeling a little embarrassed, like I overreacted, or freaked out in this wave, like maybe I should be tougher, or there's something wrong with me, or maybe I'm protracted --  then I realized that's all wave thinking.  That's what happens to me in waves, I doubt myself, I think I'm making too big a deal, what's wrong with me, everybody else is getting better, maybe I'm protracted.  Yes, this is all wave thinking, and I know better.  It's just some really tough symptoms that are hanging around for too long.  I really do hope this is the last big one for us, Coop.  So glad you're not letting the w/d steal your coffee and time with  your daughter. 

 

haven't seen Mama Mia.  I get discount tickets, and that play is rarely available (which means it's still very popular and they don't have to sell their seats at a discount.)

 

Okay, Coop, let's hope we both start feeling better soon

 

P.S.  Have you been tracking this wave?  How long has it been for you?  HH said hers was six weeks, months 15-16.

[[Gr...]]

Green, ...boy are we in the same place...living with sx...I was back in a wave this morning...I kind of knew it was coming...freaky thick scary 'can't think ' d/r...that stuff just terrifies,me when it is that deep. A moderate level of it I can ignore pretty much. Anyway it lasted for the first part of the day and then gradually lifted to tolerable. Like you I just refuse to give up some things like coffee with my daughter and seeing a movie with her. I couldn't begin to really tell you what was in the movie ( Mama Mia is coming to our city later this summer and she loves it and will go when it's here, so she brought the movie over to watch in the theater facility here).  A total blur in my mind and I literally can not remember taking the dog out this morning, though on a cognitive level I know I did.  This feels like total dementia to me.. then it lifts.  As Sky says, " Gawww"....

....Green, I hope you enjoyed the Rockettes ...nose bleed seats and all.  ....coop

 

Sorry, I'm answering this twice. My head is fogged.  Didn't even read the first part.

 

I don't have the DR so bad right now, although it comes in like the night fog, very abrupt.  I've got chest stuff, chest pressure, palps, skipped beats.  And I can't breathe.  How in the world could we possibly try to explain this to people?  How can I blame people for not understanding this?

 

Feel better, Coop

[[Gr...]]

This is unrelenting jitters, fear, and anxiety. Just meditating and hanging on until this passes.

 

Drew,

 

I hesitate to say this, because it's not true for everyone, but strenuous exercise has the opposite effect for me.  I used to run, and it always was a way to de-stress, run it off.  In withdrawal, I found exercise revved me up.  So I avoided it, stuck to walking and biking.

 

Try to see if there's a pattern when you're revved up and exercise?  hopefully not. 

[[Gr...]]

Korbe,

 

this is from Eastcoast62.  She's not here anymore, but she was very positive, and had a great success story after a terrible ordeal.  These are things she was told on this forum, BB, that she found to be true.

"-I was told that time alone would heal me.  True

-I was told to stay away from supplements, other psychiatric drugs, and certain antibiotics  True

-I was told to accept that it was "just" withdrawal, nothing else  True

-I was told about the "benzo lies" and how they can fool us    True

-I was told to start learning how to cope with my symptoms, learn techniques to help them  True

-I was told how benzos affect our bodies, and how the entire system has to adjust in order to heal    True

-I was told to keep posting and asking for reassurance    True

-I was told to get moving, not to just sit around felling awful    True. "

 

Hope this is helpful to you

[[Co...]]

Hi Green...yes. this has been only a  5 day wave so far. The last day of my wonderful 5 day window was March 18. ...Looking back on my window tracking there were some very good days before Feb 25...things were feeling so much better. So even though this wave is so far only days old... it feels like months...I thought things were turning around and then it all went away and I feel like I am in acute again . The d/r/p scares me senseless...literally senseless...

.....Green if someone chopped off your leg you would not be telling yourself to " dust it off " and keep moving. These drugs mowed our GABAs right off and damaged our brains. Growing them back is long painful work full of PTSD. ...Please.. please don't marginalize the pain and struggle that you are going through. This is the hardest thing we have ever done...it's just invisible and so so misunderstood and disbelieved. You said it yourself...we have to validate ourselves. It's so tricky though because sometimes we can't even in ourselves believe this is real because it's like living in an alternate universe.  ....I am so glad you went and enjoyed it. You are so brave...I am still very unable to go to a movie by myself. I have gone to the grocery and the book store alone and just those were a little edgy. In this wave I wouldn't be able to do even those things...things I used to do as easily as breathing.

....Green, I don't think any of us are going to be on the protracted board....We are all in about the same pace of cycling in and out and then getting some solid waves.  It's still 8 more months until month 24 for you and me and Nova is just a month ahead of us. I keep thinking of HH who is out there on a 10 day trip away from home, putting in 14 hour days of field tripping at 22 (?) months off.  .and feeling no sx. She is 5/6 months ahead of us . I think it was only 2 or so months ago that she was panicking in the night begging her husband and mother to take her to er. ..look how much she healed in 3 months.  Man, I am looking  for her footprints in the dark....I am trying so hard to ' let there be' good days and  ad days. Having said that, I couldn't do that this morning...completely engulfed in thick d/p and anxiety.  I have clarity now but am developing a knee jerk fear of it coming back after clarity....well blah blah blah.  I would be so reinstated and in tolerance without everyone here. 

  ....Green ...we gotta be kind to ourselves .....love to you....coop

[[Co...]]

Green....thank you !! for the quote from EastCoast...it's perfect. I remember her from when I first came on the forum. ....  Wishing you a very good tomorrow .....coop

[[dr...]]

This is unrelenting jitters, fear, and anxiety. Just meditating and hanging on until this passes.

 

Drew,

 

I hesitate to say this, because it's not true for everyone, but strenuous exercise has the opposite effect for me.  I used to run, and it always was a way to de-stress, run it off.  In withdrawal, I found exercise revved me up.  So I avoided it, stuck to walking and biking.

 

Try to see if there's a pattern when you're revved up and exercise?  hopefully not.

 

I'm thinking the same thing.  My hr was at a constant 165 and I usuallybstay in 130-140's. Not too long ago I ran and had no problems but maybe  Stopping the propronolol on Thursday also contributed to the floodgates being wide open to all this crap.  It didn't hit right after I exercised though.  An hour later it slowly ramped to terrible. ..it has passed.  I'm worn out and I was so ravenous i just two dinners! 

 

I'm a bit embarrassed (not here)how I still can't handle this and my gf has to put up w me. Once we survive the episode it all seems so easy We all know it's not while in it though. It HAS to be withdrawal.  Nothing else makes sense.

 

My gameplan is to not exercise so vigorous again and just take mag. If I'm okay in a week I'll reintroduce the Preventa migraine.  If I then experience this again I might have an idea if it's just withdrawal or a contributing med.  the funny thing is I can now drink two cups of coffee w no problem.