Post Benzo Protracted Withdrawal Support Group

[[Ja...]]

Well oh well...I've been having more nausea and more symptoms of parasides so just to be safe (and since I'm in south america) I'm going to take some anti-paraside stuff over the next couple of days.  28 months ladies and gents and still going...overall alive and better but wouldn't it be nice not to be here whinning any longer?

 

Interesting you write this....  What are your parasite symptoms?

 

The reason I originally was given Klonopin is because I had parasites, but my doctor didn't diagnose them.  She assumed I was just a troublesome patient and my symptoms were anxiety.

 

I took prescription medication for my parasites, but I feel they are still present.  My doctor doesn't think re-testing for parasites is necessary.

Some of the symptoms are similar to benzo w/d and these are anxiety, constipation, gas/bloating, nausea, dizziness (this might be both benzo w/d and parasides).  All it takes is 3 days of pills on an empty stomach and I've never had any bad effects from them, so wish me luck.

 

Ed

[[st...]]

Good luck, Jarocho.

 

Patty  xo

[[An...]]

Just wanted to weigh in here too.  Im off 9 months and still have major symptoms daily.  I have most of these symptoms 24/7.  There are few that fluctuate in intensity but most of them are constant.  The major ones being DP/DR, high anxiety, panic, depression, flu like symptoms, confusion, disorientation, doziness, headaches, chest pain, shortness of breath, muscles stiffness, fatigue, poor concentration, etc.  The list goes on and on really.  I feel like I'm completely gone mentally.  Can't zone into the present.  Mediation, breathing, yoga, eating well, running, etc.  Very disciplined most of my life with this stuff and particularly over the last 9 months but nothing really helps.  I guess time is the only thing that helps but its such a slow process.

 

One thing I find really interesting is that the physical symptoms closely resemble an autoimmune disorder.  I also have what feels like severe inflammation in my chest, back, neck, sinisus, head, legs, etc.  Its all over.  Stiffness, aches, pains.  On top of that I have a constant flu like feeling.  My guess is that the withdrawal (for some), really does set off an autoimmune response in the body. Some people have said the symptoms only "resemble" an autoimmune disorder, CFS, or FM, but I happen to disagree.  I think it really is an autoimmune dysfunction in the body. These "flare ups" might be autoimmune flare ups on top of protracted withdrawal symptoms.  Severe inflammation, etc.  There are many different types of autoimmune disorders and this obviously wouldn't fit any of the real classic ones, but in my opinion it does have many characteristics that are similar to some.  Just a thought.  Whatever is going on here I hope everyone continues to hang strong and get well soon.

 

[[le...]]

Hi Buddies,

 

I had a spot of free time tonight, and came to forum...and found this thread!  Started reading from the beginning (because I fit in with all of you "protracted" folks, being at close to 26 months off).  I see some old  friends here   I jumped all the way to the end of the thread, after getting about 10 pages in, because I wanted to add my name here.  Hopefully I will have the time to go all the way through to read each post soon.  I don't have time or energy to post much right now, and have not been able to be here much in the last 2 months. 

 

I think this thread is a GREAT idea.  I am like many of you...afraid to post much due to scaring people who may just be beginning their journey.  Thank you, Albie, for starting this.  I will try to post more in the next day or so.

 

~Leena

[[be...]]

i just counted 22 people who have responded to this thread that are over 2 years off.  I know of at least 5 more who havent posted here. 

 

There are ALOT of us, which makes me sad, but also gives me hope and relief that im not alone and this.  Having bad sx's this far out is more common than people realize. 

 

Just knowing that it's still wd, gives me hope that i stand a chance of healing from this someday.

[[pa...]]

In regard to flu symptoms:  I went back over my two-year diary and found that during the first year I had 2 - 4 days a month when I wrote "coming down with something - achy, tired" and then the next day "I guess I'm not getting the flu".  It took me a long time to realize it was withdrawal.

 

Paresthesia

[[Co...]]

Hi everyone, I just wanted to let my friends here know that I went to the doc last Fri....it was a big deal for me...I have been terrified since detox to go to see anyone except the NMD that I saw about a year ago...I have lots of physical sx left at over 21months off...The doc was wonderful to me, treated me very well and spent about an hour and a half explaining to me what he felt was going on regarding my severe neuropathic pain and parasthesias...he does feel that the benzos contributed but thinks the severe nature of the nerve pain is due to being on the large dose of morphine so long...explains that pain is protective and my bodt had to keep making more and more pain receptors...when I was ct all these adaptations were exposed causing a lot of pain. He started me on cymbalta...did not think elavil would be strong enough...I know many have had a bad experience with this drug but I had to do something...felt like it was my full time job and only goal to endure the constant pain and I just could not do it anymore. He is sending me to neuro also as concerned about the constant fasciculations in my toes and feet. A very special friend went with me to the doc, and Im so grateful I wanted to thank her here. Thank you again P  Wish you could go to the neuro with me lol. Anyway,,,oh the cymbalta is making me a litlle nauseous but thats nothing...no other problems yet with it. That is my update for now. Thanks for listening and wishing everyone here was having an easier time. I appreciate everyone who has posted here. There is strength in numbers, and I find comfort and courage from all of you. Love, Colleen

[[Co...]]

Hey Believe, Hope you are feeling better. Wanted to congratulate you on 2 years off...you have been thru so much and have come a long way. Thankyou for the support you have always given to me, even when you yourself are suffering. I appreciate you so much. I have faith that we are all healing everyday...even when it does not feel like it. Love you. Colleen

[[Wh...]]

Thank you so much for the update Colleen.  I have been wondering often over the last couple days, how it went.  Thrilled to bits that a special friend could go with you to that doc appointment that you feared so much.  I'm really happy and pleased that the doc spent so much time with you and was so caring and even somewhat knowledgeable about what is going on for you.  I sure hope that the Cymbalta does the trick or at least takes the edge off.  I hear you that "enough was enough".  Keep us informed okay?

 

Love you ... 

[[be...]]

Hey Colleen

 

I had a GREAT window today!  Almost makes the bad wave worth it.  lol

 

So proud of you of facing your fear of doctors!  That was huge for you!  Way to go girl!!!   

 

Luv ya! 

[[Co...]]

Hi Whoopsie, Thankyou so much for your caring and concern...I am so humbled by all the kindness and support for the doc appt...this doc has done a lot to renew my faith in the medical profession. He promised to stick with me and not give up on trying to ease the pain. I was really lucky to have that special friend with me...to have her close made all the difference. My neuro appt is next Tues...and I guess Ill just have to take it from there... probably will want to run tests but thats ok...this is too much for me to try and figure out...time to believe again..ya know. Anyway...how r u doing...read about the mystery party, always wanted to do that...congrats on figuring it out!Hope you arent too bad. I think of you everyday and wish this nightmare would end for you. Love you so much :smitten:Colleen

[[Co...]]

Hi Believe, Im so happy you had a window! Thats awesome. There is something freeing about facing your fears, Im so glad I finally did. I appreciate you saying your proud of me. Im proud of you as well, esp how you manage to take care of your little one so well. I could not have done it so kudos to you. Colleen

[[he...]]

Hi Believe , Congrads sweetie on your 2 year mark, and sooooo happy abt your window , and Thank you for being supportive to me too, and being my true friend ... Love you to bunches xoxoxoxo

 

Colleen hiiiiiii, I am so proud of you hun facing your fears and so pround to have you as a sister,and a friend , and Thank you sooo much for always being there for me , and thank you to your special friend for gng to the DR with you , cant Thank you enough... Love you lots and lots .

 

God Bless all of you

Love Laura

 

Praying that we all get our Rainbows soon !!!!!!!!!!! :smitten:

[[Co...]]

Hiiiiiiii Laura, lol, lots of love tonight huh. Feels good. Love you lots and lots. :smitten: Colleen

[[Ja...]]

Good luck, Jarocho.

 

Patty  xo

Thank you Patty :-)

[Guest [ru...]]

 

 

I think this thread is a GREAT idea.  I am like many of you...afraid to post much due to scaring people who may just be beginning their journey.  Thank you, Albie, for starting this.  I will try to post more in the next day or so.

 

~Leena

 

I think this thread is a GREAT idea.  I am like many of you...afraid to post much due to scaring people who may just be beginning their journey.  Thank you, Albie, for starting this.  I will try to post more in the next day or so.

 

~Leena

 

I too think this Protracted Group is a great idea.  However I think it important to point out (when it comes to scaring the newbies) is that it seems to me the DIFFERENCE for most of the more protracted ppl are the ppl who either cold turkeyed, partially cold-turkeyed, were detoxed or tapered too fast or given the wrong equivalency dose when crossing over from 1 benzo to another, say, Diazepam (as Ashton suggests - which is also what happened to me, even though I thought I was tapering slowly & had trusted I had the right equivalency dose during crossover) or too, perhaps ones that are just more super-sensitive to meds/drugs.

 

It also seems to me that ppl who go SLOW or who are in full control of their taper, or who get the right equivalency dose when changing over don't seem to be as protracted.  So I think thats a super important point that needs to be made/clarified.  We DO need to be able to tell it like it is, I feel, without fear of scaring others, otherwise that’s just too much to carry, on top of what you’re going through.

 

Also too it seems to me what TYPE of benzo they were on too.  The "Benzo Wise" lady said Clonazepam is 1 of the worst to come off of (which was the 1 I was originally on).  I had a friend who was only on a "sleeping benzo" rather than “anxiety” benzo (cant remember the name of it now) and she came TOTALLY right after 15 months of hell.  She did not have the same PHYSICAL problems as I had (like extreme head tremors/spasms, voice/speech problems, muscle problems, balance/walking problems ETC etc etc), however she did have similar mental/emotional crap.  So I am wondering whether the PROPERTIES of each benzo, whether it was acting as an anti-anxiety, anti-convulsant, anti-etc I think ALSO has something to do with what symptoms AND duration that will effect whether ppl are protracted or not too.  Just a thought in a moment or semi-clarity.  Perhaps too whether they were on any other meds BEFORE tapering benzos.  IMO the more we were on beforehand, then tapering off benzos, its like the straw that broke the camel’s body, brain, CNS etc.

 

What my friend was lamenting about well over a year ago, that she couldn’t trust her thoughts, feelings or perceptions, is what I am still going through now @ 20 months off. My friend has long since healed and is never looking back & TOTALLY able to get on with her life again.  I think she was “luckier” being on a sleeping benzo instead of clonazepam!!!!!!

 

Any thoughts on the above???

 

I will also add a note here I got from somehere! that said “my own theory is that the brain needs to go into functional disarray in order to make a healing change (which constitutes a wave) after of which you get a window where you MAY notice  significant or subtle positive change.  My windows and waves pattern was roughly 7-10 days of normality”. I  Cant remember where I got that from now but I sure hope they are right in that the flareups precede more healing & I hope that semi-comforts someone!!!

 

It seems I am having many more “functional disarray” flareups or meltdowns in a day now where the brain & emotions just go even more haywire, so perhaps that also backs up that “healing speeds up a lot more from 18-24 months”  Or that more aggressive healing happens from 18+ months???  It all starts with a pattern of 1) Increased Cog Fog & thoughts get more scattered/disordered 2) More Irritable/Antsy & Angry for no apparent reason, 3) Vision gets more blurry, eyelids super heavy, super-sensitive to light & noise, 4) finally crying meltdown - just WEIRD!!! Sorry, still so cog-fogged, so I hope all of the above makes semi-sense or semi-comforts someone!!!

 

Love, Hugs, and Prayers to you all for clear minds, ENDURANCE to keep hanging in there, more FULL healing and the return of yourselves, personality and strength again!!!!!

[[st...]]

Well, I guess I will add my name to the protracted withdrawal list.  I am 41 months off Xanax and still battling symptoms.

 

There are at least 7 more members who are over the 3 year mark.

 

Patty  xo

 

 

[[Ho...]]

I am beginning to think that protracted withdrawal is more than norm.  The more people I talk to or hear from, the longer they have been off and still suffering.  I just friended Jack Hobson Dupont - the man who wrote The Benzo Book and he is six and a half years off and feels that he is just now fully functional.  I am hoping that means that he had only one or two sx that lasted this long.  In his book, I believe he says he was healed at the end of two years.  I am going to write to him again and ask him to clarify that.....but it looks like it's a long long road for many of us.  Makes me so so angry!

Love and courage to all of you as we keep on keepin on.

Hoping2BFree

[[Fl...]]

I am 15 months out today from a c/t. Still have lots of w/s. I do get windows here and there but not 100%. Sometimes I look at all of my symptoms and think I am not healing but then I look back and see things that are gone. So I know I am healing but it is just moving so very slowly. I am in a wave right now but I hope this year shows much more improvement. Thanks for this thread. It helps me to get through the bad times.

 

Rain

[[Ja...]]

I am beginning to think that protracted withdrawal is more than norm. 

 

Without scaring any newbies (who shouldn't be reading this always) I also think long term recovery happens more often. All I have to do is look at myself and know that I didn't do anything "too bad" to still have symptoms at 28 months off.  You would think that I'm a "slow" healer, but for just about everything else I heal pretty quick. I just "tweaked" my back last week and a week later my back is now fine. Bruises, cuts, you name it all heal like they should, but benzo w/d is a whole different ball game! 

 

Ed

[[Ma...]]

Without scaring any newbies (who shouldn't be reading this always) I also think long term recovery happens more often. All I have to do is look at myself and know that I didn't do anything "too bad" to still have symptoms at 28 months off.  You would think that I'm a "slow" healer, but for just about everything else I heal pretty quick. I just "tweaked" my back last week and a week later my back is now fine. Bruises, cuts, you name it all heal like they should, but benzo w/d is a whole different ball game! 

 

That describes me, too!  I heal quickly from bruises, cuts, bangs, etc.  But this has been excruciatingly slow and painful...  Bleh. 

 

Glad it's not just me, I suppose...

[[he...]]

This message is for Stoney, sorry your still suffering this far out can you tell us what symptoms are you having this far out ? what is related to Leviquin damage and whats Benzos ? I am sure it worries alot of us that are protracted if recovery can still take that long on short term use of 4 Mths , as myself I was only on short term too , it scares the h*** at of me to even think I can still be suffering at 4 years of 4 Mths on Benzos , but I do know from what I read that Leviquin can really cause alot of complications from recovery to some people , not all. Thank you

 

 

Love Laura

[[Ja...]]

Without scaring any newbies (who shouldn't be reading this always) I also think long term recovery happens more often. All I have to do is look at myself and know that I didn't do anything "too bad" to still have symptoms at 28 months off.  You would think that I'm a "slow" healer, but for just about everything else I heal pretty quick. I just "tweaked" my back last week and a week later my back is now fine. Bruises, cuts, you name it all heal like they should, but benzo w/d is a whole different ball game! 

 

That describes me, too!  I heal quickly from bruises, cuts, bangs, etc.  But this has been excruciatingly slow and painful...  Bleh. 

 

Glad it's not just me, I suppose...

Yeah hard to be happy you're on the many suffering, but at some level I'm glad I'm not alone or I would have gone nuts already. I have learned to live with the lingering symptoms and I still have the random day where bad anxiety comes back just in case I've forgotten about it 

 

Ed

[[st...]]

Laura, I am not sure what med (Levaquin or Xanax) continues to cause havoc with me.  Both meds work on the GABA receptors.

 

My remaining symptoms vary from day to day but the worst ones continue to plague me on a daily basis which are hyperventilation/difficulty breathing/seized diaphragm, sinus mucus production/cough/wheezing, body weakness that comes and goes but seems to not be letting up the past couple of weeks, fatigue which is getting better but does hit hard on occasion, muscle/joint pain (especailly of the hips) and agitation/anxiety.  Mornings are full of adrenalin rushes and the evenings seem to give me some reprieve.  The other symtoms are daily but I can live with them which are: DR, blurred vision/eye shadows and floaters/red eyes, face numbness, lower leg fasciculations, red/burning left foot, muscle cramping especially under the right rib/feet/legs, extremely decreased cognition especially short-term memory, head pressure, belly bloating which comes and goes, loose stools which occur during a wave, apathy, chills, sweating at night at times, poor sleep,occasional rashes, etc.  Anxiety stopped somewhere around the 14th mark off date but came back with a vengeance around the 18 month mark.  My thyroid continues to be tested and I am on the hyper side at the moment but even when I was hypo the symptoms have stayed the same.  I am doing more than I did a year ago so my energy level is up but it takes alot of effort to get motivated as long as the weakness is not affecting me.  I am waiting for the day when joy comes back into my life and I can take a nice, long walk with my dogs and husband.  Until then I keep pushing forward.

 

I have seen too many buddies who heal much sooner than me and you are probably one of them, Laura.

 

Love,

 

Patty  xo

[Guest [ru...]]

Just gotta say I tried EAR Acupuncture today and WOWWWWWWWWWWW.  There was 1 point where he pressed where I IMMEDIATELY felt emotionally better instead of clenched so UNBELIEVABLY tight.  It was like INSTANT relief emotionally  .  I think its called the "Shen Men" Point for anyone interested.  I just HAD to share that, cos if you find something good/helpful you want to share it in the hopes it might help others!!!

 

(Still got the little sticky things on my ears now so I can keep pressing them.  I told him I want to press them all day!!!  He said no, your arms will get tired, I said I dont care this is amazing!  ).  Here's hoping it CONTINUES to RELEASE the clenched up emotions BEYOND iron-clad tight, back to more relaxed, peaceful and centred/calm!!!!!!! I expect it may take awhile being this clenched....

 

Just had to share that for anyone interested in something natural that might help & SO instantly (& that you can KEEP pressing after you go home too ).

 

This is my 2nd time round with Acupuncture.  This time I found a different Acupuncturist who paid more attention & care, was a better listener/communicator AND primarily- used to be a Neurologist for many many years as well.

 

It did NOT hurt at all (not needles in the ear - just like sticky metal buttons that you press).  Strangely my left ear feels better to push than the right one....anyway I sincerely hope that helps someone.  I still believe there is alot more time left yet to heal things yet, but thats ANOTHER positive....xoxoxo