Post Benzo Protracted Withdrawal Support Group

[[pa...]]

Thanks VG for postings this.  It truly helps to have a "direct" connection to others who are off the benzo, going thru protracted, or acute protracted wds; whatever it need to be called.  My hubby Ron has been one year off this week, the 15th, Ativan/Lorazepam.  He was on it for 10.5 months, from inception until dry taper.  As all of you know, as well as myself (I was on Valium in 80's, 6 months, I didn't know all was from the drug, did c/t, ended up going thru hell), so much for me, he has walked the path of hell with the s/x wds.  His hair fell out bigtime, anxiety (am worse), electrical sensations, nerve/muscle pain, bigtime GI problems.  About 7 months, his hair started growing back great (he always had a great head of hair), the nerve pain in the thoracic area subsided to be able to deal with, then in Sept he was hit with excessive urination, the hair began falling out again, nerve pain/muscle pain went to lower back horrible, and again the electrical sensations up and down spine into head, now down to legs became worse, the memory loss back off and on, sometimes he sounds drug, then he is fine, his brain feels "twisted" at times he says, his body feels twisted..  All I can say it has been hell for him.  THOUGH, as we go through every day, I go over our journal of symptoms that I have logged, show him what has "waxed/wane".  He will heal, I hope soon.  He. like everyone needs a total break from this; as well as me, I'm worn out.  Many thanks.  Love to all the bbs. Pattylu 

[[ke...]]

Thanks Vancouvergirl.

You kind of alarmed me but its for the better either way. My psyche seems to think that if I feel anxious or some sx's that I can take a .5mg and if that works and I dont need another one for 3 days or however long than I should be able to come off them like that, but what you say about yo-yoing my brain also makes sense. I am just so used to toughing out things that in my mind thats gonna work.

 

Do you believe that if I feel I need to take any at all then I am wd'ing and should reinstate to the lowest dosage that my body feels comfortable in?

 

Example: this is purely hypothetical: If I was having anxiety, insomnia right now and took a .5mg but then felt fine for a few days sx free and then felt I needed to take another .5mg on friday that I should reinstate even though I can get by most of the time sx free?

[[va...]]

Thanks Vancouvergirl.

You kind of alarmed me but its for the better either way. My psyche seems to think that if I feel anxious or some sx's that I can take a .5mg and if that works and I dont need another one for 3 days or however long than I should be able to come off them like that, but what you say about yo-yoing my brain also makes sense. I am just so used to toughing out things that in my mind thats gonna work.

 

You're welcome Kenocamb. I understand the "toughing it out" stance. Things is, there's surprises in this in that, it can get worse before it gets better. So one doesn't know, how the w/d will play out early out. It makes decision making a bit confusing because of all the amibiguity. That's why I say, maybe sit off for a few more days to get a handle. BUT, not too long so it's not hard to stablize. The longer off, the harder that CAN be but not always.

 

Do you believe that if I feel I need to take any at all then I am wd'ing and should reinstate to the lowest dosage that my body feels comfortable in?

 

If I'm reading you right,  are you saying if you decided to reinstate should you go low and work up? You can do that if you're more comfortable and don't want to over shoot and you're really not sure what your dose of tolerance is. Remember, it's best to get stable as fast as you can if you do go back on though. So you would just moniter yourself. Don't SIT in withdrawal for a long time, if it's bad thinking it will go away. It's hard for the brain to catch up.

 

Example: this is purely hypothetical: If I was having anxiety, insomnia right now and took a .5mg but then felt fine for a few days sx free and then felt I needed to take another .5mg on friday that I should reinstate even though I can get by most of the time sx free?

 

Yes, reinstating in this scenario is your only option.

 

You've established you're dependent then.

 

"Most of the time symptom free"  which would be the time in between your dosing, is when you are stressing your brain. This shock constantly, "Brain's in withdrawal, brain's not, brain's in, brain's not" is not good for your head. And paves the way for stronger symptoms because the constant stress, is taking away it's stabalizing tools to strengthen your taper base when you decide to come down.

 

So it's back to, are you going to yo-yo doses, and add stress to the brain by making it WAIT to dose and keep it in the beginning stages of withdrawal? That is CONSTANTLY RIDING WITHDRAWAL, only to give it a benzo to relax and unstress it for a tad, and then do the cycle stressing it all over again?

 

Only if you're not dependent, can you realistically sporadic dose.

 

We weren't supposed to ever take benzos in the way the brain changes to become dependent. That's why they put in the guideline which is still bad at 2- 4 weeks daily. Enough time for the brain to change in 4 weeks taken daily right?

 

Therefore SPORADIC dosing was too AVOID dependency.

 

If you are already dependent, what are you avoiding? Nothing. It's too late for sporadic dosing. Your brain has changed. Now you have to incorporate rules to keep it stress free, and get off the drug in a way, to prevent injury. Yo-yoing doses, doesn't do that. It's back and forth, and your brain is going "what?"

 

This is why I say, the rules have changed then. Make sense?

 

Sorry for alarming you Ken. I hope this helps you understand you know? xo

[[va...]]

Thanks VG for postings this.  It truly helps to have a "direct" connection to others who are off the benzo, going thru protracted, or acute protracted wds; whatever it need to be called.  My hubby Ron has been one year off this week, the 15th, Ativan/Lorazepam.  He was on it for 10.5 months, from inception until dry taper.  As all of you know, as well as myself (I was on Valium in 80's, 6 months, I didn't know all was from the drug, did c/t, ended up going thru hell), so much for me, he has walked the path of hell with the s/x wds.  His hair fell out bigtime, anxiety (am worse), electrical sensations, nerve/muscle pain, bigtime GI problems.  About 7 months, his hair started growing back great (he always had a great head of hair), the nerve pain in the thoracic area subsided to be able to deal with, then in Sept he was hit with excessive urination, the hair began falling out again, nerve pain/muscle pain went to lower back horrible, and again the electrical sensations up and down spine into head, now down to legs became worse, the memory loss back off and on, sometimes he sounds drug, then he is fine, his brain feels "twisted" at times he says, his body feels twisted..  All I can say it has been hell for him.  THOUGH, as we go through every day, I go over our journal of symptoms that I have logged, show him what has "waxed/wane".  He will heal, I hope soon.  He. like everyone needs a total break from this; as well as me, I'm worn out.  Many thanks.  Love to all the bbs. Pattylu

Pattylu you are something else. Logging in waxing and waning symptoms for him to show him his cycles and progress. He's been off a year huh? Did he quick taper?

 

I remember reading about you before in that you quit valium and went through the usual start of "what's going on?" I'm sorry to hear it was really hard for you too. And now he's in it huh? Gosh. I'm reading all of his symptoms. Yip, I didn't get the body twists but a friend off board has that. She's 6 months off I think. And the shocks didn't go all the way to my legs, just head brain, but I got the rest he did. I'm sure you got many too since you c/t'd and said it was hell. Boy, he's totally back and forth with some of this stuff. Brain feels twisted, then body does, sounds drugged then he's okay. Neuro brain stuff. 

 

I know, the stories help right? There's a lot of variation in those so we can all pick "that's my offender" and get some validation and see healing even if it takes longer. I'll post it again here so new people coming by won't miss some further out healing stories.

www.recovery-road.org/success -stories

 

Yeah, we all need a break for sure, YOU got that right. I'll bet you're worn out Pattylu. What a great spouse you are.    It's hard caring for someone in withdrawal. I know my mom, is tired...............    -I really hope your husband heals soon too. xoxo

 

 

[[Co...]]

Just wanted to let my buddies know I saw the neuro today...it was alright I guess except for the fact that she would hardly let me talk...kept asking about the burning...but I told her it was like razor blades and knives, didnt seem to listen to me oh and she thought I should also see a psych because I have been thru a lot lol, also told me to enjoy life lol. She wants me to stay on cymbalta and stated I should notice some relief in 6 wks. She ordered labs and emg and mri, which I expected. Thats about it...oh btw not seeing psych lol. Hope everyone is hanging in there tonight and doing ok. Love, Colleen

[[Co...]]

bump for newer buddies who may relate. xo to all the buddies

[[li...]]

I'm so very tired, I hope it ends soon.  I think one thing that prolongs healing is that when I finished tapering, I was almost healed 6 months later.  However I didn't know that we remain extremely fragile and I made several mistakes which added so much time on to my withdrawal.  I started to enjoy life, I had absolutely no saddness or symptoms or diminished outlook, and as much as I didn't know about withdrawawl, I had no idea that even the simplest drug or flu shot or supplement that was the wrong one for me could set things a blaring again.  So guys, please remember, when you get to the point of feeling withdrawal may be behind you, we are not to jump back into our life before benzos.  We may seem healed, but remain in a state of remission at best.  I have heard peopl that are years out of feeling healed and take for some reason feel something not right and make the mistake of taking and A/D or a supplement patch, and wham, back into sympotms that have long gone.  I have also heard people that have these adverse reactions to things after feeling healed are thrown back into withdrawal for an extremely long time.

 

We may not remain symptomatic and we can even consider ourselves healed, but I truly believe that our bodies will be changed for many many years after healing.  Part of it may be a fear of temping withdrawal to resurface, but from being almost healed and experiencing a horrendous setback that added years to my withdrawal has shown me we must continue to be careful on what we put into our bodies.

 

Going from feeling healed at 6 months out and experiencing two bad setback from the flu shot and an A/D I stupidly took to combat the severe reaction to the flu shot, I am now still struggling at 34 months out.  I'm still not even back to the point I felt at 6 months out, but I hope one day I will be.

[[we...]]

Dear lislis,

your story is so similar to Walmers. I certainly read it and will remember it. If your body almost healed once after six months, it's a pretty good indication that it was fixing itself. One would think that your body is still healing from that experience. I know we're at different stage, but I'm pretty sure I'm going to be here for a while, so we will probably be seeing each other for a while.

 

[[we...]]

so much anxiety, sigh, did not have before.

[Guest [ru...]]

Anybody a bit further on than me that has got rid of OR is going through the blunted emotions starting to turn super messy???

 

I am finding my emotions go from constantly blunted (feeling awful as hell) to super angry/xtremely stressed/messy/major mood swings nowdays.  Is this THE START of connecting back up to the emotions???

 

I always used to find (even before this benzo damage) that in order to cry, I had to vent/connect with my anger first, then slowly after venting anger- would finally be able to cry(which was always what I wanted to do anyway-just the way I work, dunno why).

 

I keep finding myself taking "huh huh huh" breaths every now & again throughout a day (like when I was a kid after crying you would do that kind of breathing as your emotions were settling down from a huge upset/cry).  Anybody else have that???  Its like a subconscious thing that happens several times a day....(which is no biggie in my mind, just stating facts).

 

My emotions still feel extremely tightly clenched (beyond super uptight) most of the time & then swing to really loose, angry and super messy.  BIG ugh!!!!

 

I just cant understand all the anger(!) as I really dont even know what I'm angry about!  I just cant cope with hardly ANYTHING right now.  Everything seems to be p'ing me off/frustrating or making me totally over-react BIG TIME.  I am STILL avoiding ANY stress & am still pretty much confined to a quiet home...I can drive short distances now, but find it gets me even more SOOOO uptight/stressed that I just dont even bother.  I dont even go out to public placs at the mo as that would be a recipe for disaster for my brain/emotions/cns to cope with...

 

If something upsets me, it's so hard now to calm myself....I am presuming that that is STILL just the damage to the brain/emotions though (phew thats a relief I still know what it is!).  It is just SUPER hard to calm myself at all.....and I STILL cannot cry argh, grrr, argh!!!  So frustrating...When I DO get emotionally upset now the CNS goes majorly shaky again ALL OVER; head shakes again, hands shake, legs EVERYTHING gets super shaky/wobbly again.  AND...thoughts go SUPER SCATTERED at the same time argh.....

 

It's only once the CNS has calmed down a little that the thoughts get a little bit more calm too/a LITTLE easier to think.  Still having major concentration/comprehension problems though.  The worst part is I STILL cant access my MEMORY/previous life wisdom (this obviously includes COPING SKILLS argh!) so that just renders me completely powerless/helpless which just makes me so angry/frustrated/disempowered!  I know theres not a damn thing I can do about it until my brain has healed but....argh!

 

Wish I could just blub my heart out, as it feels like there is bucketloads/oceans full of tears in there that are/have been unable to be processed/expressed......also when the emotions rev up/start bubbling up it's like they're EXPLODING inside, but somehow can't come out/be expressed/vented....SO frustrating...I honestly feel like if I dont get it out somehow I'll implode instead, but it just wont come...(I know I cant force it either) but boy I wish I could just cry or have a cleansing emotional catharthsis!!! 

 

It is soooooo hard to live/be inside myself whilst feeling like a cross between some mad scientist & some evil suddam hussein!!!  I used to be such a strong, firm, but sweet/well meaning, tenderhearted,  extremely compassionate & understanding person....now it's like I'm stuck with this horrible person now!  Anybody else feel like this?????

 

I've also been getting major temperature changes/hot flashes lately too that come on super suddenly....I thought it MAY just be part of the w/d.  (It is summer here at the  mo, but STILL not that hot in the house).  However, I always used to have hormonal trouble before all this anyway, but could this be the start of peri-menopause too???  Afterall I am 40, have ALWAYS had major problematic cycles, all sorts of tube pain, major PMT/anger 2 weeks before my "Aunty Flow" used to arrive, then crying/relief once it came....I am considering getting a natural Wild Yam Progesterone Cream as just recently I decided to go back on my hormonal pill & already my skin has got a bit more moisture back (I used to be oily/dry before) & I noticed a HUGE difference in memory/concentration from go back on it too (even tho it's still a major problem).  I'd much rather try a natural progesterone cream than the pill to even these god-awful spikes out.....

 

Oh yes and I still get the Morning Anxiety/Panic/Feeling EXTREMELY low times too...ugh I HATE mornings! (Always did, but now its even worse).  I used to live for Evenings as they USED to be better, but now it feels like the cycle of emotions/meltdowns are changing AGAIN....oh what a JOY this protracted w/d is...NOT!

 

Answers to ANY of the above questions would be SUPER appreciated as it really helps me to UNDERSTAND.......(what is happening to me) or that what I am going through is STILL normal for protracted w/d....I feel like I'm under an AVANLANCHE of trying to sort out what is what here, so ANY help/insight/sharing your thoughts, opinions or insights here would be super APPRECIATED.... :'(

 

Just FYI I am now @20.5 Months off with main symptoms being: Major Concentration/Comprehension probslems-scattered/foggy, Emotions-Blunted then Messy, S/T MEMORY bad, Repetitive Loop Thoughts. Scalp-BURNS. SPEECH probs.  REVS UP/DWN NOW: DP 2 Messy, Shaky CNS, Pressure/Deep Brain Pains, minor tinnitus/ear pressure, ear drums reverberating.

 

Strength, insight, guidance, wisdom, hope, reassurance, love, hugs and prayers to ALL of you still enduring this god-awful unbelievable nightmare.  We're major warriors just for coming as far as we have!!!!!!!!

[[st...]]

Hi ruthiealison and all,

 

Rage/anger and lack of emotions were horrible for me.  I am 41 months off Xanax and those symptoms are a bit better but I still cannot cry.  When I try to cry it comes out as squeeks, if that makes sense.  Congratulations for making it this far, by the way.  It shows that you are a very strong lady.  IMO, it takes a long time for the cns to right itself and stress needs to be kept at a low level, if possible.  Deep breathing exercises helped me alot.  Temperature changes was the norm for me at the 2 year mark and to this day I still get the chills and sometimes hot flash feelings.  You are in protracted withdrawals but the good news is that we will get better although it can be a long process for some of us.  Have you been checked for Lyme's and/or thyroid disease?  I know many of us have low B12, magnesium and Vit D levels but many members have had problems taking supplements so it is a catch all problem.  I have been to a few doctors just to rule out other possible problems and have been treated for Lyme's disease during this process and my tests have all proved negative for the last couple of years.  I believe that Levaquin brought out the dormant bacteria and I was treated in the early stages.

 

I think you will see some good healing in the next year so hang on tight.

 

Patty  xo

[Guest [ru...]]

Hi ruthiealison and all,

 

Rage/anger and lack of emotions were horrible for me.  I am 41 months off Xanax and those symptoms are a bit better but I still cannot cry.  When I try to cry it comes out as squeeks, if that makes sense.  Congratulations for making it this far, by the way.  It shows that you are a very strong lady.  IMO, it takes a long time for the cns to right itself and stress needs to be kept at a low level, if possible.  Deep breathing exercises helped me alot.  Temperature changes was the norm for me at the 2 year mark and to this day I still get the chills and sometimes hot flash feelings.  You are in protracted withdrawals but the good news is that we will get better although it can be a long process for some of us.  Have you been checked for Lyme's and/or thyroid disease?  I know many of us have low B12, magnesium and Vit D levels but many members have had problems taking supplements so it is a catch all problem.  I have been to a few doctors just to rule out other possible problems and have been treated for Lyme's disease during this process and my tests have all proved negative for the last couple of years.  I believe that Levaquin brought out the dormant bacteria and I was treated in the early stages.

 

I think you will see some good healing in the next year so hang on tight.

 

Patty  xo

 

Hi Patty,

 

Thanks SO MUCH for replying and being so honest/open about the rage/anger & lack of emotions.  Well I WAS on Total Aminos & there was a hold up in my order so the past 2 days have gone without any, & boy I can sure semi-cry now!  Although it doesnt feel to ANY depth, just like I'm an emotional hypo wreck, with fits & starts of crying, & major mood swings, but nothing cleansing.  Just loads of anger/rage, then swinging to crying ETC.  By the sounds of it you can sure relate!  You're amazing to have gone thru that & still hold on!!!  I am doing EVERYTHING I can to save my life right now (research for guidance), but honestly dont have a will to live. I am honestly tempted for an OUT...

 

Yep I agree at trying to avoid stress where/if at all possible, thats why I still stay in my house rather than go out in public.  I live by myself nowdays anyway & the isolation is just awful (I'm sure that makes me even more loopy!)  But I cant trust myself, calm myself or think clear enuf to relate to anyone as life is FAR from normal anyway!  I aint good at pretending everything is ok anyway.  I honestly feel like I'm locked inside a mental/emotional basketcase with so many mood swings/scattered thoughts its not funny, so I dont trust myself being around ppl right now either to just lash out at anyone/anything (makes ragey PMS look like a walk in the park!!!).

 

I'm also very glad that you mentioned the temperature changes were the norm for you as yeah thats what I've been getting - HOT FLASHES, (occassional chills) they all come on so suddenly, so I naturally thought it must be hormonal (even tho I know it's ALSO still damage to the CNS/brain/emotions too).  That makes me feel (at least in my head) so much more comforted to know you experienced that too (even tho I wouldnt wish it on you!!!) so thanks heaps.

 

No I havent been checked for Lymes or Thyroid Disease.  I knew at least that Benzo w/d MIMICS alot of various conditions so I didnt want to be MISDIAGNOSED & be led up the garden path/more confused than I already am. Age back my doc did blood tests (god knows what for) but they all came back normal, incl the CT & MRI scans.  I havent gone to see my Natural GP in awhile now, cos he really doesnt understand this w/d AT ALL (even tho I gave him the Ashton Manual sometime back now, I havent heard from him & I do believe he really is at a loss as to what to do anyway, as am I!).  I quit the Acupuncture too as even THAT was far too stimulating for the cns...

 

Last night I ordered a Saliva Test (internet) to test my hormone levels (as I've always had MAJOR trouble with my cycle/moods etc anyway & am wondering whether the hormones are the ROOT CAUSE of depression/anxiety for me anyway).  I will have to wait for that test to be posted out, then the results sent to a lab, then a 1 hour PHONE consult with a Registered Nurse to go over the results.  (Prob best I dont mention w/d!?!?!?)  If they are found to be low, then they will prescribe a natural progesterone cream to even out at least the hormones.  I really dunno whether that is the right thing to do, as we all know by now we are all super-sensitive to ANYTHING (stimulating/revving supplements, foods or otherwise) with a damaged/hypersensitive cns, but I will have to take the risk & at least try (as I did feel "MILDLY" better going back on my pill after so long).    Apparently hormones are also responsible for (affect) the Thyroid function anyway, so its all interlinked.  Far too techie for my non-scientific brain!!!

 

Anyway thank you SO MUCH for replying Patty.  I have relayed all this (as much as I could) to my Ma & discussed it all over (that you found all this normal for you too).  She agrees/feels it wise to go thru with the Saliva Test at least, just to rule that out.  Dunno where I can/will go from there...

 

Brain has gone dead now & that took me so long to write, so best away.  Much love, hugs, prayers and HEALING to you Patty...you are an amazing woman....and once again, thank you so much for your reply.

 

Sincerely, Ruth

[[Al...]]

Hey Guys,

 

Since I started this thread I figured it was about time I chimed in. 

 

When I started it I wanted to get an ongoing thread going like Vertigo's extremely well-received thread by almost the same name, "Post Benzo Withdrawal Support Group"  but by adding the word protracted I felt we who are in protracted benzo recovery would have a place to come to in order to express ourselves without feeling like we're sounding whiny, our trying to steal thunder from those in the tapering or acute initial withdrawal phases. In other words, I feel there was a need and I am sorry to see there are so many of us but, in turn, happy to know we're not just a select few "non-healers" in the bunch.

 

Anyway, it was my intention to check in frequently and reply to many posts. Oh the plans of mice and men. Nonetheless the forces of life have conspired against me to, ironically make the past few months some of the toughest of my recovery. It's a lot of stress regarding work and family problems that have taken it's toll, so at least I know what it is.

 

But earlier tonight I received a personal message from KRock and shot him a reply. So, if you'll indulge me, I think I'll just post that reply below as my update as to how I'm doing:

Here are my thoughts on your questions:  Of all the many dozens of nasty symptoms I have experienced in what is now 18 months clean, sleep disruptions and morning anxiety were far and away the worst. At one point, I too wondered if they would ever normalize. At its worst, the morning anxiety and racing thoughts and revving adrenaline and fear were the worst and most debilitating of all. Then again, severe sleep disruptions were no picnic either. Anyway, at some point the morning anxiety just kept fading and fading until it was completely gone. Now it's back (to a much lesser degree) over the past few months and so are the sleep disruptions, as I've had an incredibly stressful period of family problems that have worn and weighed upon me significantly.

 

But because I have seen myself go from day after day of relentless symptoms, to lesser symptoms and then to periods of no symptoms at all, I now know it is possible. But I do wholeheartedly agree that cold turkey cessations from these drugs takes a much more severe toll on our central nervous system and therefore requires a LOT longer to heal. Since I have seen the light on the other side, however, I have to tell you that I believe I can and that all of us can recover completely from this. I know it may even sound simplistic or boring to hear, but I try to keep track of the level of my symptoms and then try to determine each little thing that spawns improvements or exacerbates my symptoms, trying, of course, to work in more of the things that spawn improvements including (for me) limiting alcohol, not getting too uptight at work, scheduling my mornings, getting sunlight and exercise every day, taking vitamins, eating right etc. etc. And when I do all the right things, I find that I typically make some headway. It's in slow and small increments, but improvements nonetheless. And when, in turn, I do have a significant wave or downturn like I've had over the past few months, symptoms return, but the amplitude of those symptoms is not as high and their duration is not as long as they were the last time they reared their ugly heads.

 

So, I guess my bottom line and advice to you is this:  Yes, I believe we can all fully recover. The brutal part is that it's not going to be on our timetable. And it will come in small increments punctuated by lots of fits and starts. So I don't try so much to look at whether a symptom is totally gone, though it's nice when they are, but more to look at like, "Okay I'm going through a tough time again and I'm experiencing 5 or 6 of the old symptoms I thought were gone. But the last time I went through a tough and stressful wave, there were maybe 6 or 8 symptoms and the intensity was worse, or if not worse, then they lasted longer each day or for more days in a row."  In other words, I track it and try to look for any signs of improvement vs. the last wave and I can almost always find some if I work hard enough at finding that evidence of improvement.

 

I'm sorry I can't tell you a time or a date, at XX months out, it'll be all better. But I bet you already knew I couldn't. Then again, having come off 6 or 8 drugs cold turkey simultaneously and also having c/t'd at least 40 different drugs altogether including benzos, antidepressants, pain pills, muscle relaxants etc. over the past 4 years, in some ways I'm amazed that my body, brain and central nervous system has come this far. If I had to put a percentage on it, I'd say I'm about 70% recovered. And that means on a bad day, I feel only about 40% recovered and on a good day I'm pretty much symptom free. But those good days are the light at the end of the tunnel and yep, I'm really sure I will get to 100% recovered one day and I'm really sure you'll experience much more improvement and fully recover too.  I can't tell you exactly how I know this, but I do believe it to be true.

 

You hang in there. And one more thing, I've found that really helps with morning anxiety, is to develop a morning routine that you do every morning regardless of whether you're working or not. By that I mean make a list of the things you feel good about doing every morning, for example:  Make bed, shave, shower, make breakfast, go for a walk, etc. and then put your things in the order that works best for you. Then write it down and try doing them in the same exact order several days in a row. It may seem silly but the beauty of writing it all down and doing it over and over again until it becomes a routine is that with a routine, you don't have to think about it or overcome your anxiety to do it, you just do it. And that's the second part: then don't even question your routine, just do it, even if you do feel fearful and crappy. Just do it anyway. It doesn't have to be anything major -- just a few little things. And by doing so, I often found that by the time I was done with my morning routine, which takes about 2 hours, very very often by that time I am thinking about the rest of the day and the morning anxiety has just vanished. It's a simple little trick that has worked well for me (when I do it, that is). That said, it's easy to slip so one simply has to keep trying. But then again, that's the whole point of the routine, so you don't have to go through the hard work of figuring out what to do every morning since it's the same every day.

 

Anyway, no magic stuff here. But sometimes it's the little things that make all the difference. And then one day you wake up and it's not that bad. It's not perfect, but not that bad. And I'll take that any day after all we've been through.

 

So, sorry for the disjointed post, but alas all I really have to say is that I wish you all the very best and I hope we can continue to connect here, sharing our ups and downs and supporting each other through the various phases of the protracted withdrawal, from which I am confident we will one day each recover.

 

All my best and happy new year,

 

Albie

 

[[Ja...]]

Here is a HUGE sign of improvement for me. I used to be very sensitive to heat that I always needed to be around 70F temps to feel less "anxious" (if that makes sense).  Yesterday I went out at 5PM in the heat (85F) and played basketball for 2 hours! I know I still have symptoms and sometimes anxiety does come back strong, but it feels good to be enjoying and not hating on our poor old sun...

 

Ed

[[Co...]]

Hello everyone, I have a question. I often say Im anxious, but it is a physical feeling...like jitteriness, muscle tightness, slight hand tremors, shallow breathing, rubbery legs...that kind of thing...Im pretty much like that all the time...but I dont feel mentally anxious or nervous at all. My mind is pretty much quiet. Is this anxiety or what, am I in dp? I just dont know. I am in severe nerve pain all the time, so maybe Im in dp and dont know it. Any feedback would be appreciated. Do you guys experience this. Thankyou. Love, Colleen 

 

RuthieAlison, I did not have a whole lot of rage. I did get really angry about 2 months into wd. I was mad at my husband and started banging my front door over and over again really hard. Lol shook the whole house and my dogs were freaked out. Im still angry at my former NP whom I feel betrayed me in the worst way. Ive never been really comfortable with anger so I probably suppress it. I could not cry for over a year, and still hardly ever cry. I have never cried much in my life though. I guess I suppress a lot. I felt vey flat emotionally for about 14 months after wd...could not ever feel happy at all. But now Im pretty much back to my baseline on that kind of stuff. Youll get there too...the timetable is just a little different for each of us. Love, Colleen

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Hi Albie, thankyou for giving us an update. Im so happy you are experiencing days with no sx. Thats awesome. I believe in the little things too...great post. Colleen

 

Jarocho, so glad youve had such a great improvement. Im happy for you. Im sensitive to heat too. Wonderful you could play basketball for 2 hours. Sounds like you are for sure getting closer. Colleen

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Hello everyone, I have a question. I often say Im anxious, but it is a physical feeling...like jitteriness, muscle tightness, slight hand tremors, shallow breathing, rubbery legs...that kind of thing...Im pretty much like that all the time...but I dont feel mentally anxious or nervous at all. My mind is pretty much quiet. Is this anxiety or what, am I in dp? I just dont know. I am in severe nerve pain all the time, so maybe Im in dp and dont know it. Any feedback would be appreciated. Do you guys experience this. Thankyou. Love, Colleen 

 

RuthieAlison, I did not have a whole lot of rage. I did get really angry about 2 months into wd. I was mad at my husband and started banging my front door over and over again really hard. Lol shook the whole house and my dogs were freaked out. Im still angry at my former NP whom I feel betrayed me in the worst way. Ive never been really comfortable with anger so I probably suppress it. I could not cry for over a year, and still hardly ever cry. I have never cried much in my life though. I guess I suppress a lot. I felt vey flat emotionally for about 14 months after wd...could not ever feel happy at all. But now Im pretty much back to my baseline on that kind of stuff. Youll get there too...the timetable is just a little different for each of us. Love, Colleen

 

Hi Colleen,

 

The above sounds to me more like just the damaged CNS physical symptoms (oversensitive/damaged or hyper-reactive CNS). If I dont keep myself locked away in my quiet home, or I get way too stimulated mentally/emotionally (WAY easy to do too, like just a short drive, or even just stuff in the house!) BACK come those jitters & shakes all over, especially those attractive head tremors/shakes.  At least I know/understand what it is now, so that really takes all the worry away.

 

If you arent experiencing any MENTAL or EMOTIONAL symptoms along with those physical symptoms you're "lucky"!  I think even with DP (as I've experienced it) even if you cant properly feel the distress as such, its certainly there in my head, so good thing you cant feel it!  I always feel even with DP that I can still feel things/distress at a "deeper" level AND at least mentally, even tho it's still blunted emotionally. (geez how weird & complicated does that sound lol!).

 

Yeah the early acute stages of benzo rage you are talking about I certainly got too (OMG it was terrible, no control, as is still now, ugh).  Then it went away to be replaced with OTHER yucky cycles of new symptoms (clusters).  So this is a RETURN of anger/rage for me, after all this time of being blunted.

 

That "cluster" of new symptoms anger/rage came along with scalp starting to burn (oh yay, but I'm thankful thus far its limited to there!!!) & the return of my walking/balance (thank GOD!!!).  I dunno that any of us are really comfortable with anger/rage as such, but for me it's "better out than in"...its a pressure release/emotional catharsis.  So now that I am off the Aminos, when it bubbles up (several times a day now) I just have to find ways of venting it OUT.  I find if I suppress it I just explode even worse at something else down the line, so far better to process/get it out (if I can) as I can so I'm not carrying any extra "baggage" as such.  I've found since I've just recently been off the Aminos that emotions are getting less clenched & are far more explosive, volatile & able to be a LITTLE more vented out now.  Holding on thru those waves of Mad Scientist/Suddam Hussein periods are ruddy awful tho!!!  Either way its an insane nightmare, but far better to have some pressure release I say! (Especially after nearly 21 months of no "vent").

 

Jaracho - Yeah I notice I am super-sensitive/can't handle heat either!!! It almost makes me pass out.  Lucky you can handle it now!!!  Sounds like you're truly making some awesome strides/progress.  Good stuff!!!

 

Albie - before my brain just completely dies (I'm pushing it), yep thanks again heaps for keeping this "Protracted Support Group" going, especially now with the "search" function still down.

 

Love and Healing to you all. And thanks heaps for you all being out there  :'( Ruth xoxoxo

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Hi Ruthie, Thanks so much for the feedback...its all so complicated I think...I just dont know how my brain manages to stay so quiet. I thought if I could put a name on it it might help me. Dont know if that makes sense. Im just always posting about my sx being mostly physical, then I thought what if Im wrong and in denial and in dp. I am lucky that my mental stuff mostly went away at about 14 months off. I had very bad mental sx, esp the first few months. I was in psychosis and had some really scarey delusions so I do sympathize with the mental stuff. And it was just horrible never feeling anything. Yea the anger thing..I do keep a lot in..prob due to childhood. Never felt safe to let things out. Ive always tried to maintain control. Ill probably have to work on that when Im healed. It would be too much now. I agree venting is much healthier and Im glad you r able to do some venting. Im glad you are here, you have a lot of good insights and I appreciate how honestly you share. Love, Colleen 

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Hi Ruthie, Thanks so much for the feedback...its all so complicated I think...I just dont know how my brain manages to stay so quiet. I thought if I could put a name on it it might help me. Dont know if that makes sense. Im just always posting about my sx being mostly physical, then I thought what if Im wrong and in denial and in dp. I am lucky that my mental stuff mostly went away at about 14 months off. I had very bad mental sx, esp the first few months. I was in psychosis and had some really scarey delusions so I do sympathize with the mental stuff. And it was just horrible never feeling anything. Yea the anger thing..I do keep a lot in..prob due to childhood. Never felt safe to let things out. Ive always tried to maintain control. Ill probably have to work on that when Im healed. It would be too much now. I agree venting is much healthier and Im glad you r able to do some venting. Im glad you are here, you have a lot of good insights and I appreciate how honestly you share. Love, Colleen

 

Aw you're welcome Colleen.  Yeah it sure is all so complicated, "2 heads are better than 1" though thats for sure!!!  Yeah I dunno how your brain manages to stay so quiet either, but you're lucky.  I doubt you are in denial, as you mentioned you had that yuck stuff in the acute stages.

 

Yep I agree gaining understanding of what is happening to you DOES help (lowers anxiety, at least me thats for sure!!!) so it most certainly makes sense.  The mental stuff for me is just the fog, being unable to remember previous life wisdom (this is prob the WORST as it just leaves me totally disempowered/up pooh creek coping/stress wise, mind u i've never been down THIS road before) scattered thoughts when the CNS gets freaked easily, repetitive OCD like thoughts??? kind of hard to get fresh/new tracks of thinking/ideas?, still feel I lack my higher i.q. & of course the wondering of how, when etc.  The verse of "Lean not unto thine own Understanding" has ALWAYS been a challenge for me!  I'm a very visual person so I think of those words in terms of guidance & the road of how to get there.

 

Yep I think we're all prone to stuffing stuff down, but truly honestly it aint good for us emotionally.  Especially this kind of pooh!  I do understand about the being safe to let it out thing though.  You've got to be very careful who you open/share your heart/true self with normally anyway.  Trust is truly earnt & none of us are perfect.  I think we all struggle for control too really.  No1 likes feeling a mess/or unabled.  It's only when you bump into some more open ppl/ you find, nah what you think & feel is actually just quite human....alot of ppl have just had their trust shattered so they dont bother I reckon or they're plain & simply afraid of the response they might get, quite normal.  I agree about the being too much for now thing too.  WHEN you are able...just trust/follow your own intuition on what you need to do...in your own time, at your own pace. 1 huge mountain at a time.

 

I came back on here to do another more hopefully inspirational post, which I'll put in a separate thing.  Sheesh gotta start trying to wind this frazzled brain down for the night! xoxoxo

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http://www.youtube.com/watch?v=VojyZW6O3I8

 

Faith Hill “There Will Come A Day” Song

 

This song manages to touch me & helps me connect up with my heart/spirit even thru the blunted emotions!!!  The words are symbolic to me meaning there will come a day when we will all be free, healed, strong, confident & able once again (from this benzo stuff).  I hope this inspires/touches/heartens & strengthens someone.

 

Faith Hill is such a strong, deep, and soulful woman (like I used to be).  I always used to want to be a Singer or Dancer.  MAYBE when I get free of all this I will pursue that long-lost dream, even at age 40 hahaha?!…..

 

Anyway hope the words manage to touch/penetrate and uplift/give you all hope/strength……

 

Also this young girl is just amazing….SOOO talented

 

 

Thanks for all the unconditional love and support of EVERYONE here.  If we all stick together, we will all fare so much better.,,,remember “there is strength in unity”, “2 heads are better than 1” & “a problem shared is a problem halved”….we’re not meant to face all this pooh on our own xoxoxo

 

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Colleen,

I am seeing a physiotherapist to help me deal with the pain, and she says that many of the symptoms I have are typical of people in chronic pain, including tremors, goosebumps, feeling cold all the time and shivering.  The neurologist said that the best treatment for pain and most lasting is with with CBT. I will probably give it a shot with my psychologist, but I have no idea how she is going to deal with that.

 

I still have a lot of mental stuff, it was nice to read that the DR went away at fourteen months, I am so looking forward to that, but I am not holding my breath for fourteen months., I am at twelve month now.

It is almost as if I am afraid to move, and I can do things but nothing is comfortable.

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Regarding advocacy,

I think that suing the pharmaceutical company is too complicated, there are better ways. If we can turn public opinion in our favor, big Pharma will have to answer to public opinion. We have one advantage in Canada is about our health care, it is not run by the insurance companies as it is in the states. It is however influenced by big Pharma. Marketplace just ran a story about cold FX being a sham. Although it is not about benzodiazepines, they did do a good job of showing how incompetent the pharmacists were, and how poorly regulated the industry is.

 

I wrote a letter to Dr. Goldman, who runs a half-hour show on CBC called white coat black art. He did a half-hour show on opiates, and I told him that opiates was nothing compared to benzo. I also gave them my story, I have not heard back from them. That is probably a good sign.

 

One of things that we need is recognition. We need validation. If we could have one single doctor or neurologist who would acknowledge the seriousness of the protracted state, instead of saying that withdrawal ends after a few months. Ashton has credibility, but we really need somebody else to continue her work, preferably in our own country.

 

Right now as you know we are denied insurance, disability, lose our jobs, and even our immediate family have difficulty believing that this is a disease entity. I do not think it is so important for me in particular, but for all benzo sufferers. We are so vulnerable and unable to defend ourselves. It is reminiscent of fibromyalgia in that initially no one wanted to believe that it was true, like chronic fatigue syndrome.

 

For those who were able and willing, I am wondering whether we should put some effort into trying to convince the Maine benzodiazepines group to change their focus towards advocacy. As for myself, I am planning to write a letter to Dr. Berry, one of the key players. I do not think he is very knowledgeable yet, but if we set out to educate him, he may be able to help us. Setting up a benzo site, acknowledging the work of Dr. Heather Ashton, would go a long ways towards giving credibility in the US.

 

As from myself, I have a lot of paralyzing anxiety, I shake all the time, I am noxious, I had headaches, I still do not have sensation of hunger and thirst, and I am in pain. The biggest gain in the last two months have been with the sleep. I am now sleeping 3 to 4 nights a week for at least five or more hours. Nevertheless I still have intense fatigue. I have DR, and I feel pretty brain-damaged, loss of memory.

 

I also have the symptoms that I call brain tension, or mental tension. It is purely mental not physical. I just have to shut my brain become once or twice a day for half an hour to an hour. My psychologist wants me to meditate, but I prefer lying down or taking a hot bath, it is just as effective and requires less work on my part.

 

Of all my protracted buddies, am I the only one with no sensation of hunger or thirst or needing to Pee? I know it is neurological damage, just wondering whether anybody else had that.

 

[[Al...]]

 

Of all my protracted buddies, am I the only one with no sensation of hunger or thirst or needing to Pee? I know it is neurological damage, just wondering whether anybody else had that.

 

Hey Wellness,

 

I can't remember too much about not needing to pee. Maybe on that one. But I can give you a definite resounding yes to no sensation of hunger or thirst. Plus all food, even things I had once loved tasted bad, positively bad. I would go days without eating, just slamming a Boost vitamin drink before bed. Literally that was all I would have. And I wasn't thirsty either. Then after losing 50 pounds without trying, I decided I just had to eat. Now I don't know if it was just a function of time or from eating again, but slowly my taste buds came back. And thirst too. Now, I have to diet because everything tastes too good. So my answer is yes, I went from literally not caring one bit about food back to a normal appetite. For me that happened a few months after getting off benzos, but I'm sure everybody is different. I think the important thing is that this is all just part of the recovery and normal appetite and thirst do eventually return.

 

Take care and hang in there,

 

Albie

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Here is a HUGE sign of improvement for me. I used to be very sensitive to heat that I always needed to be around 70F temps to feel less "anxious" (if that makes sense).  Yesterday I went out at 5PM in the heat (85F) and played basketball for 2 hours! I know I still have symptoms and sometimes anxiety does come back strong, but it feels good to be enjoying and not hating on our poor old sun...

 

Ed

 

Ed, I know exactly what you mean.  Heat and sun exposure seem to set things off for me as well.

Cant wait to be able to enjoy visiting the beach or relaxing by a pool again!

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Relaxing by the pool would be nice, relaxing period would be nice