Post Benzo Freedom Withdrawal Support Group

[[...]]

Wow! There are 145 pages of posts on this topic. It almost seems as it should be a separate forum category. - ??

 

Anyhow, a little history. When I first was helped (by my former physician, now a friend) to understand I'd been caught up in the web of benzos, I was pretty freaked out. My husband and I were on a much needed vacation in the Caribbean, but I was suffering so much from interdose withdrawals (not knowing what they were), I could not enjoy the vacation, and convinced my husband to return home early. He was not happy about that!

 

I immediately saw my current doctor and got a taper plan. When I attempted to carry out his taper plan, all hell broke loose -- like so many people here. I cannot believe an MD can prescribe a drug without knowing how to get people off that drug (sorry for the brief rant).

 

When I first researched the issue on the internet, I came upon a different benzo forum that scared the holy cr-p out of me.

 

Now that I've tapered and quit benzos, I'm realizing that those scary stories are true, and it remains to be see whether they are true of me (meaning, a protracted withdrawal experience).

 

Anyhow, the whole experience has turned my life upside down, and as a result I've taken a strongly spiritual direction in life. Every morning I pray. I turn my life and my will and my addiction and my withdrawal over to the care of a higher power, and at the end of the day I give thanks for all the gifts of the day. I ask for help doing the next right thing. I keep my mind on today only. As a result, every day gets a little lighter.

 

I'm very grateful for the support and understanding of all of you, for sharing your stories/struggles/successes, and to Vertigo for starting this thread.

[[fi...]]

Hello everyone. I am 90 days out from taking my last dose of Klonopin and Cymbalta. Self tapered 4 mg's of Klonopin and 60 mg's of Cymbalta in 8 weeks. From day 20 through 45 I felt amazing but from around day 45 to now I have been experiencing the below symptoms. While tapering the symptoms to me were normal and I could physically look at the drugs and blame it on that but now after feeling great and now feeling terrible again with nothing physical to look at its hard to keep my anxiety from running away with me so I thought I would ask if anyone else has these symptoms or to place your own symptoms post withdrawal symptoms out there.

 

Numbness in hands and feet.

Joint Pain - Stabbing Pain and stiffness

Tongue Hurts likes its been burned and mouth tastes like metal

Extreme Fatigue

Jelly Legs

Muscle Aches and Pains - Mostly in Legs but some through my chest.

Really bad recall memory especially of peoples names

 

Thank you all for your input on this site it has been a life saver.

[[...]]

Hi firefly,

 

Like most of the members on this site, I have experienced, at one time or another, all of the symptoms that you have listed.

 

Much to my delight, The burning mouth and metallic taste were the first symptoms to go away.

 

Good luck to you.

 

pj

[[fi...]]

Well I experienced all of the above symptoms heavily during tapering but again I was great with 0 symptoms for almost 3 weeks and then for the past several weeks the symptoms came on gradually but I almost feel as if I am tapering again. Lousy...lol... I am sure this is just a phase and I probably did not prepare myself for a long drawn out 6 month healing process. I just assumed that once I was feeling better that was it. But this is a great thread and a great topic and just what I needed to help calm down. Thanks for you supports and comments

 

[[Pe...]]

I always view returning symptoms as signs that my brain is now working at repairing that related portion(s) of the brain.  Healing hence symptom.  That always helps me.

[[Ma...]]

Interesting to see people here talk about weight loss and losing their appetite.  I'm just the opposite.  Eating has been a way to pass the time and helps me focus and as a result of that and very little exercise until this week, I've gained 14 pounds.  Arrgghh.  For a former fitness fanatic and personal trainer it's awful...Plus with the DP it is weird to look in the mirror and see this heavier gal!  Oh well...definitely harder if you can't eat at all so I'm grateful for that! 

 

Love y'all

Mary

[[te...]]

Hello everyone! I am still tapering. I was so relieved to read that while tapering, some of you felt these awful symptoms.(I do not mean this irreverently!)I recently cut Klonopin from .375 2x's per day--three weeks on this dosage--to 2.5 2's per day. Day 4 and scary, awful symptoms--HBP, tremors, jelly legs, tight back muscles, nausea, diarrea, anxiety Thanks for the posts here, even though I'm not through tapering--this has been very helpful. Take care! T2

[[Ma...]]

Tish...I read back in your posts.  YOu said that you went on Zoloft at 10 months out when you were still dealing with major cog fog, dr and dizziness.  Did it help with that?  I am finding few people these days who got through this hell without an a/d.  I can't take any because they all make me suicidal.  So is there hope for someone who can't take an a/d?

 

[[Ma...]]

I'm doing it without an AD and yes, not only is there hope, I would say it's the way to go. Whatever you're going through will pass. The AD will only give you more questions as to what's going on (is it the AD or is it wd or is it tolerance to the AD or.... who needs it) and then you'll have another drug to get off of that will likely re-trigger all the old wd reactions prolonging the hell even further. Consider yourself blessed!!! I know I do.

m

[[Ma...]]

Thanks Marina.  I have no desire to take anything again ever, but it's so disheartening to hear nothing but stories of people on other meds.  I appreciate you sharing!

[[pe...]]

Maranatha,

 

Yes, the a/d helped me a lot.

I was dealing with anxiety that had taken a life of it's own in me....I felt sick every day.

Because of the major anxiety, I had major cog fog.

I started Zoloft and have been on it since then - 50 mg. - a very low dose.

I also started Lamictal and that has helped also with the cog fog.

I still have some fog, but I think that maybe it's just age, menopause...etc. etc.

 

I wanted to do this with no extra medication...but after some time I realized that

it was a battle I could no longer fight on my own...I was miserable, absolutely miserable.

I told my doctor that I needed to do something...I was reaching the point of desperation.

 

Hope you can find some relief.  Don't be afraid to ask for help.

The battle is sometimes much too difficult to fight alone!

 

Tish

[[gi...]]

Hi Firefly,

 

I had a rough withdrawal but my "taper" was only 6 weeks long so it wasn't unexpected. What was unexpected was getting slammed, and slammed hard, exactly 30 days from my last dose.  Then all hell broke loose, and I had 24 symptoms simultaneously for 3 months. I had all the symptoms you described (and, needless to say, many more!). Things started improving in teeny tiny steps over the next 9 months.

 

I'm happy to say that most of my symptoms are gone, but some do come back in times of stress. I still have the burning mouth. It's not as bad as it was 2 years ago, thank God! Now the only time it really bothers me is when I'm really stressed, and then it's really bad and food falls out of my mouth because my teeth hurt so bad. But I don't taste copper anymore and my tongue doesn't feel like a flamerthrower is at the tip of it, so it's all good!

 

Things will improve, I promise!

 

ginger

[[ve...]]

It's good to see so many new "Post benzo" warriors in the recovery phase .  I salute all of you who continue to be of support to each other here on this thread and throughout the forum.  I've been out and about this summer but wanted to check back on my buddies.  In a few weeks, it'll be 21 months off valium.  A year ago at about 9 months off, I had a little relapse after a summer trip which included reintroduction of alcohol and caffeine, too much sugar....  What a difference a year makes.  Keep on battling friends. It does get better.  Also, if you can wait a year before imbibing, I think it is probably best not to drink alcohol too early in recovery.

 

Ginger, so good to see that so many of your symptoms are also gone or milder than before

 

Percussion, no shame in deciding that an a/d was right for you at this time.  

 

Maranatha and Marina. I decided not to take other prescription medication after taper, like both of you have,  but I do respect that others may find some benefit from them. I suppose it's an individual decision.  I have recently added an herb which I might post about later.  By the way Maranatha, I gained quite a bit of weight in the first nine months off.  I started a thread in General Health a while back about it called "What is fueling your fatigue".  Feel free to check it out.  I think it's still active and actually kind of humorous in parts.

 

Perseverence.  That is a helpful comment that when a symptom returns, to view it like it may be the brain sorting itself out.  I know another buddy who had that same philosophy.  When I get some nerve tingling occasionally from the Shingles outbreak I had last year, I also try to put it in a similar perspective.

 

Firefly.  Recovery does seem to ebb and flow.  I also found that I might make great strides for a week or two and then get slammed backwards.  That seems to be the nature of the post benzo life, at least was for me the first year off too.  By the way, I did have fatigue throughout the first year off and jelly legs at both 3 and 9 months off.  However, the time at 9 months off was mostly a reaction to eating poorly on vacation, adding caffeine and alcohol, too many sweets, weight gain accompanied by rising blood pressure.  I think one can reverse some of the jelly legs with a healthy diet and exercise, at least it worked for me last summer.

 

Struggle- glad to read that most if not all physical symptoms are gone.  Yes, the irrational fears and emotional impact must also be dealt with.  So happy to hear you are getting your independence back and able to be alone for periods of time.  As you know, my mother was agoraphobic in her fifties, also a victim of benzo addiction over a decade.  To my knowledge, she never stopped the benzo but I do believe she was in tolerance withdrawal and this sent her anxiety sky rocketing.  You must be coming up on a year off, eh?  Continued healing to you and all.

 

Yram.  Congrats on your benzo freedom as well.  How is the celexa going for you?  Did you make it through all 150 pages of this thread?  I'm impressed

 

Well, hope you all continue to heal in the coming months.

 

Best wishes,

 

Vertigo

[[sw...]]

Wow! There are 145 pages of posts on this topic. It almost seems as it should be a separate forum category. - ??

 

Anyhow, a little history. When I first was helped (by my former physician, now a friend) to understand I'd been caught up in the web of benzos, I was pretty freaked out. My husband and I were on a much needed vacation in the Caribbean, but I was suffering so much from interdose withdrawals (not knowing what they were), I could not enjoy the vacation, and convinced my husband to return home early. He was not happy about that!

 

I immediately saw my current doctor and got a taper plan. When I attempted to carry out his taper plan, all hell broke loose -- like so many people here. I cannot believe an MD can prescribe a drug without knowing how to get people off that drug (sorry for the brief rant).

 

When I first researched the issue on the internet, I came upon a different benzo forum that scared the holy cr-p out of me.

 

Now that I've tapered and quit benzos, I'm realizing that those scary stories are true, and it remains to be see whether they are true of me (meaning, a protracted withdrawal experience).

 

Anyhow, the whole experience has turned my life upside down, and as a result I've taken a strongly spiritual direction in life. Every morning I pray. I turn my life and my will and my addiction and my withdrawal over to the care of a higher power, and at the end of the day I give thanks for all the gifts of the day. I ask for help doing the next right thing. I keep my mind on today only. As a result, every day gets a little lighter.

 

I'm very grateful for the support and understanding of all of you, for sharing your stories/struggles/successes, and to Vertigo for starting this thread.

 

I seriously think so.

[[ve...]]

I understand the sentiment Sweet G and Yram.  I requested to have this thread put in a separate category of withdrawal last year but the moderators and admins thought it might lead to fewer folks who were finished with their tapers, perhaps not continuing to  read and post to help out those who were still tapering,  as opposed to "post benzo recovery".  I am a believer in paying it forward and trying to help those who are still struggling and tapering so I do understand the decision that was made. At the same time, I am glad if there is a benefit to having a thread like this for folks who are finished with their tapers and still symptomatic beyond that first proverbial few weeks which some people seem to view as "normal".  Some have posted here and elsewhere on forum that it may be more realistic to expect some symptoms can persist for 6 months and be quite "normal" too.  That is not to say that all symptoms would stick around for a long period.  Also, it is worth noting that many "experts" seem to weigh in that benzo recovery is not considered "protracted"  until one reaches 18 months.  I hope buddies will not feel discouraged to learn of the possibility that some symptoms might persist for half a year or even beyond one year.  

 

Some folks here who were on  benzos like klonopin and xanax (and other benzos) have reported on this thread and elsewhere about nerve issues in the face, forehead, eye, jaw and nose where the trigeminal nerve extends.   Others have had mouth burning sensations, swallowing issues or other things which may involve other nerves.   Regardless of whether the cause is a virus (like I had with Shingles) or specifically part of benzo recovery or both (adjustment to not having the benzo in one's system), it seems that it can take a longer period of time for trigeminal nerve issues to wane and resolve than perhaps some other symptoms such as cog fog, for example.  At least was the case for me.  There is no single predictor in recovery.   One concern I had about this thread was that it could end up being a downer if too many folks came back with ongoing complaints about not getting better or if they only focused on the negative.  It has turned out to be much more than that, a broad look at many of the trials and tribulations as well as successes that might come up in the first year or so  off a benzodiazapene.  For example, how one deals with family stress, work or going back to work, travel and jet lag, diet, exercise, other new challenges,  some have pondered whether to try or have decided on adding an a/d or other herb, sleep issues, even the stress of a seemingly small issue like getting a new pet can impact recovery, trust me, I know .   I haven't been on forum as much these past couple months.  I hope to blog with some of you from time to time and I will try to post a 24 month update here in a few months.  It was nice to see some newly benzo free folks posting here recently .

 

Best,

 

Vertigo

[[pi...]]

One of the great things is to be able to hear that other people have the same withdrawal effects as you do.  It makes you feel less alone and hopefully stop worrying that it something else that you will have yet another test for with the results to show that nothing is wrong. That is, except for withdrawal.

 

I am 7 weeks today free from benzos.  My worst symptoms are the burning muscles and pain, primarily in my neck and shoulders where I previously had surgery.  I know a lot of people can't do really active things during withdrawal but reading has been a blessing for me. I have read so many books because it distracts me from my symptoms. I don't read terribly serious literature right now, just recreational summer reading.

 

I continue to exercise even though I hurt.  It is important to me since I was always a very active person.  I hope it will help me to heal, but at least I'm keeping somewhat in shape.

 

My biggest motivation arrives in late December with the arrival of my first grandchild so I'm putting my efforts into being able to help out when the baby comes.

 

I consider myself a highly educated person, but actually I was pretty dumb at the start of my issues.  I didn't know what a benzo was and just took what the doctors gave me.  At least now I'm much more proactive about my health.

[[va...]]

Some folks here who were on  benzos like klonopin and xanax (and other benzos) have reported on this thread and elsewhere about nerve issues in the face, forehead, eye, jaw and nose where the trigeminal nerve extends.   Others have had mouth burning sensations, swallowing issues or other things which may involve other nerves.  

 

.............it does seem that it can take a longer period of time for trigeminal nerve issues to wane and resolve than perhaps some other symptoms such as cog fog or sleep trouble, for example.  At least was the case for me.  

Well, I still have all of the above and chronic. Unfortunately it is still plenty strong enough for me to not function at a daily normal level capacity. I am 21 months and 13 days out. I have other physical head symptoms and more neurological issues as well that are chronic. Have things lessened over time? Yes. But not enough yet for me to be daily comfortable. I won the I don't have the genetics for benzos lottery.

 

That said, I'm glad you have this thread as well Vertigo. Hi      by the way! lol!

 

I do not post a lot anymore with my symptoms. But, often those of us further out feel we CAN'T for fear we will frighten others. Every now and then I'll drive by and post like this, and oddly, when the pm's where open, others afraid to post as they were far out, were relieved they weren't alone.

 

So, I think your thread has played a great service Veritigo. Thanks! And good to see you buddy! xoxo

[[Pe...]]

I agree VG, I don't always post my sx's due to the fear factor.  Everyone need to view this rationally and realize that no 2 cases are the same, so if someone past 6, 8, or 12 months is still struggling and needs support other members have to realize we are all individual in our healing.

 

Don't make veterans into idols, idols have clay feet!!

[[va...]]

I agree VG, I don't always post my sx's due to the fear factor.  Everyone need to view this rationally and realize that no 2 cases are the same, so if someone past 6, 8, or 12 months is still struggling and needs support other members have to realize we are all individual in our healing.

 

Don't make veterans into idols, idols have clay feet!!

Yeah, a lot of people don't post for that reason. But yes, we are all individual in our healing.

 

..............idols have clay feet. lol 

[[pa...]]

A big hearty welcome back to the founder of this board, V!!

As always, V, you have posted a thoughtful and thorough reflection on what it means to be a member of our community! I thank you for the time you take to share with us your thoughts and feelings and I am so glad that you are getting on with life and keeping yourself well. I like the comparison you give about symptoms and catching a cold. One could say that all human beings are vulnerable in some way and that is never reason to feel ashamed. I recently went through a stressful time trying to negotiate downtown Seattle on what was supposed to be a fun trip with family to the aquarium. I did have some old benzo symptoms reappear as a stress response. I simply accepted them for what they were and as soon as we were back on I-5 heading south, I felt better.

One book I have read (and re-read) that has helped me tremendously (in fact, I would like to create a post about this soon) is called, "The Highly Sensitive Person" by Elaine N Aron, PHD. One of the main things that the author of this book points out is that we all have individual degrees of sensitivity to stress and stimulation and there are approximatly 20% of people who are highly sensitive to stimulation. Unfortunatly, we live in a culture that does NOT value sensitivity. We are expected to be warriors and insensitive, in fact, success and strength seem to be built upon this premise. Highly sensitive people are treated as though they are weak, neurotic and  defective.

The biggest thing that one who is highly sensitive should do is to realize just who you are and just how much your special trait brings to society and what your limits are. If something feels like it's "too much", perhaps for you, it is! Never allow a less-sensitive culture to define who you are!! You have many strenghts and values and this book teaches you just what they are and how they can best serve you and the rest of the world. There are many circumstances where a "highly sensitive" person can contribute much to life, and this book shows you how. I am guessing that most, if not all, of us members hear on BB have some degree of extra sensitivity to stimulation. I know that I do! In fact, it may have been the very thing that lead our doctors to prescribe our benzos in the first place!

I will leave the rest of my analysis on that subject for the posting. For now, let me just say that the best thing we all can do is to let our intuition be our guides and to be our own best friend!

Again, V, I applaud your willingness to share your thoughts and feelings on recovery and just what it means. I couldn't have said it better. Ups and downs, sideways, backwards, forwards, straight and narrow, this is all part of recovery and indeed a part of life even if one has never taken a benzo.

As we approach a new week, I wish all of you here lots of peace and wellness! I will try to post back to some of the blogs here but like Vertigo, I have been less around the forum than I used to be.

 

[[mt...]]

HI Mr V and fellow Post taper buddies,

Happy Summer Sunday!

Hope you are all enjoying summer and up-regulating those GABA receptors!  I am feeling better and better and looking forward to each day and the healing time brings.  At 6 months off (in a few days) I am feeling back to 85-90% of my former self.  I do believe that my low symptom level is due to some degree to my slow (20 month) taper.  I am happy my patience and perseverance paid off in the end.  It was so hard to go slow and have my life revolve around dosing and symptom levels.  I was obsessed with getting off and wondering how I would feel.  In the end I have lost 2 years of my life but there have been gifts along the way.  I am proud (and the realization) of my inner strength and dedication to my health.  I have deep appreciation for a good nights sleep and waking up feeling rested and well.  The simple things that were lost to me for so long.

 

I am so happy it is all over I want to set off fireworks every day!

 

I am taking my revcovery slow and trying not to push myself with activities and too much exercise  as I am still tender from the whole ordeal.  But I can do more each day and I can tell my body is able to heal and regain its strength.  Symptoms are gone except moments of tinnitus at random times of the day.  I hardly notice them any more.

 

I pray you all find relief and healing soon.  I am thankful for the community and support from so many here on BB!

Much love

Mimi

[[Pe...]]

"...At 6 months off (in a few days) I am feeling back to 85-90% of my former self.  I do believe that my low symptom level is due to some degree to my slow (20 month) taper.  I am happy my patience and perseverance paid off in the end.  It was so hard to go slow and have my life revolve around dosing and symptom levels..."

 

Give yourself a huge pat on the back for that one.  I detoxed and at 6 months I am trying not to be jealous lol!  I am being hit by a tsunami wave that just keeps on going.  Keep this in mind if you ever have any doubts about whether tapering was the way to go.  Really, I am very happy for you, or anyone who recovers from this nightmare.  You have put in a lot of time and suffering, congratulations on sticking it out!

[[ve...]]

Great to see so many old buddies here too, after a couple months of being away.   It's a catch 22 sometimes since when a buddy is not on forum as much, it often means they may be moving on with life and healing outside.  

 

Hi Mimi. So happy to read that you've kicked most of the issues to the curb.  That's awesome to be closing in on 90% now at 6 months off .

 

Pangelingua, your post about sensitivity resonated with me.   I agree that some of us probably either were a little over sensitive to stress prior to taking the benzo or had overly sensitive reactions during or after the taper ended.  I probably had a little of both.   I look forward to hearing more on this subject.  I agree that our culture is sometimes not inclusive of those who would admit to vulnerability or perceived "weakness".  I believe we must also extend caring and support to those on forum who are still symptomatic beyond what one might consider "the norm".   I have read more and more this past six months about a hypothetical two year period off benzos where the nervous system may still be healing or "resetting", even for those who  might feel 80 or 90% there much sooner, as I did at six months off.  

I also believe that there can be set backs and possible delays in healing based on the timing of reintroducing such things as alcohol or other so called "natural" substances.  I would personally try to research any medication one might take that could impact the GABA area or create confusion about cross symptoms in the first six months off.  It can be frustrating to not know if it may be benzo recovery or side effects of a new medication.  Just my opinion.  

 

VanGal.  Glad to read that many of your symptoms are less intense than they were at one time, but I am sorry that you still have some strong neurological or physical symptoms ongoing.  I agree that having a place on forum which includes buddies who may be symptomatic after a year or into the second year off a benzo, is important.  These are some very potent drugs that impact each person differently, some do a number on us for longer than others.  I hope you will continue to post and update here.  It is not discouraging for me to find buddies who are still battling and staying off the benzo.  To me that is heroic.  We all must support each other, no matter how long one has been off the benzo.  I've read of a few folks who had spontaneous recoveries after a long period of time.  I think Matrix may be one who comes to mind who woke up one day and felt a big window of healing.  Miracles can happen!  

 

Congrats Pianogirl on reaching 7 weeks of freedom off the benzo poison.  I hope you will continue to heal and be able to help out with your grandchild as you hope for December.

 

Hang in there Perseverance.  Six months is a milestone.  I am confident that you will gradually continue to heal in the next six months and reach your goals.

 

I have found that my whole attitude about stress and life has had to be overhauled in order to achieve more lasting healing and peace.  Ironically, it's not just been about effort and hard work but in some ways, as much about acceptance, forgiveness, compassion and surrender.  Saying yes to what is, is not the same as "giving up".  There were far too many "no's" in my life when I started this journey. I still get periods of afternoon fatigue, something which I had before benzos too.  I know there are some of you who were on a benzo for much longer than I was and still have ongoing issues while others who were on for a long time have moved on.  I don't know if its been proven that years of benzo exposure or if a particular benzo may take longer to recover from, but I do know that we all need support on forums like this one.  

 

Best wishes everyone ,

 

Vertigo

[[va...]]

Gosh Vertigo, you just have such kind, supportive words for everybody. 

 

I am hoping for you in the next six months you will see the rest drop to see you fully recovered, and I hope they are not too unpleasant or intrusive for you. It's sounds like your cns is still healing as well huh?  And you get fatigued. Honestly, it still floors me how long this takes.

 

You're the best!!  

[[st...]]

Hi Verti/John,

 

I am so glad to 'see' you after such a long time. I have missed you. I'm happy that you are doing so well!!!

 

:yippee:

 

  Ilana.