Post Benzo Protracted Withdrawal Support Group

[[tr...]]

Hi everyone, wanted to ask Tropical Soul or Kid or anyone else with burning, nerve sx...was wondering if you guys experienced nerve sx such as knives, biting, pulling, pinching in the same areas you now have the burning...I have burning, stinging in the same areas that I have the more intense nerve stuff, wondering and hoping for your sake that things have improved. Im sorry if this doesnt make sense. Hoping you all are not doing too badly tonight. Im seeing a doc tomorrow...very scared...but hoping for a bit of relief. Love, Colleen

 

Hi Colleen,

 

I only have the burning in my feet, mostly my toes. Sometimes when they are not burning they feel dry, especially at night, and that tends to create a bit of a pulling feeling. The other symptoms you mentioned I don't have. The burning I have has improved a great deal over the years.

 

I didn't have a dr. that could tell me what the burning was from, they wouldn't acknowledge that it was from benozs even though sites on the Internet list burning as a side effect of benzos and other meds.

 

I hope you got some answers at the drs. office. Even an acknowledgement of some sorts helps.

 

TS

[[sh...]]

Hey everyone,

 

    Sorry I'm rambling a lot here.

 

  I'm almost 19 months out from a fast taper of 4Mg's K. I am currently in the worst have i have had probably 8-9 months i was doing fairly well for months, but now i feel like i have gone completely back to square one. I normally would not be concerned about this, because i have been up and down throughout this whole ordeal, but this flare is just so extreme compared to any other i have experienced. I do not believe i have done anything differently.. This started around the first of December, and is still going strong.. My question is have any of you experienced this kind of wave this far out, or heard of anyone getting slammed with a symptoms again after feeling pretty well for such a long time? I would appreciate any feedback.

 

Some of the symptoms i am having at the moment.

Extreme anxiety - this has been gone sense around 8 months off, but is back with vengeance.

Tension headaches

low grade vibrating all over body - also gone sense around month 8, i think it goes along with the anxiety issue

GI issues

tinnitus - very loud ringing in my ears

 

There are more such as cognitive issues, and pains but the symptoms above are the most troubling for me at this point.

 

 

I know there is not much i can do other then just keep moving forwards, but i guess i just need to vent..

 

Thanks everyone,

Dane

 

Dane, what you are experiencing does happen.  I have read that at 18 months out its common to have set backs and severe ones that feel like starting over.  You are right there is nothing more to do than wait it out.  Often they say things get dramatically better after a setback.  It is just another sign of aggressive healing.  Let's hope for the best with a new year.

 

Sharil

[[St...]]

Thanks Still Alive for the info on Flexeril.  Ya know, something inside of me told me not to take it, but my head spasms were so bad and the Flexeril seemed to keep them away.  However, what I didn't know is that I was setting myself up for a more horrid withdrawal than I could have imagined.  Flexeril triggered all my GI symptoms and all new mental symptoms that I never had the first 2 years in withdrawal.  I also know know that the two, mental/GI symptoms were related.  It was only then that I researched Flexeril and found that it act like a tryciclic anti-depressant and then many of the pieces of my puzzle fell into place.  When I stopped the Flerxil, all the head spasms came back and I had to just ride them out, which I should have done in the first place.

 

Okay, I'm glad you became aware of all this.  I'm so sorry though.  You know, many of us did not know the consequences of taking other drugs during psyche drug WD and many of us did not know that many other drugs produce WD effects as well.  Even doctors themselves aren't aware.

 

I have been drinking a lot of smart water that has electrolytes in it in hopes to settle my inner vibrations, and it seemed to work, but like I overdo everything, I think I drank too much, because I noticed an increase of pain in both my lower legs along with spasms.  I thought it was just muscle constriction from withdrawal, but after a hair analysis showing my calcium, magnesium and potassium are off the chart, I stopped drinking it and the leg pain disappeared.  Last night I ate a lot of spinach and woke up last night with the same leg pain.  I saw that spinach is full of magnesium and possibly this is another clue. 

 

Very interesting and a lot of it makes sense.  Good to know that you have figured some of these things out via observation and research.

 

I so wish someone could wave a magic wand over my body and tell me what things I am deficient in and what things I need to supplement or just plain jolt my body back into balance.

 

Don't we all wish the same.  IF I had the powers and the magic wand I'd wave it in a heartbeat to cure each of us.

 

With all that said, lislis...............at least now you are aware of what happened and why it happened as well as observed when it happened. Please be assured that ALL will heal and complete recovery will occur.  Time, and refaining from any other drugs and/or psyhoactive sustances (including certain herbs) is the method to heal sooner rather than later.

 

Sincerely wishing you substantial relief in the very near future along with complete recovery.

 

Still Alive

[[li...]]

Thank you SA, you always have a way of putting things that are very calming.  How have you been feeling?  I hope you are finding relief too.  I recenlty just stopped every supplement and probiotic and vitamines, and withing 2 days, I felt so much better.  I do believe everything I thought was helping was actuall cuasing more distress.  Now this may not be the fact at all, and this is just a good moment, so I will be curious to see if I remain stable or if things will turn about again, lol.  The only thing I am still doing is watching what I eat and staying strick for the time being.

 

I pray everyone finds relief in the new year!

 

 

[[Wh...]]

Happy New Year to all the protracted members here on BB.  May we all recover completely in 2012!!! 

[[li...]]

I'll second that Whoopsie!  I hope you are finding relief, miss you in chat.

[[St...]]

Thank you SA, you always have a way of putting things that are very calming. 

 

My pleasure Lislis and thank you for the compliment.

 

How have you been feeling?  I hope you are finding relief too. 

 

Thank you for asking Lislis.  These last few days I've been feeling the best that I have felt in years.  The only symptoms I'm dealing with is this crawling sensation on my right ankle and a few minor itchy temporary flareups on my back (which only act up for short spurts during the day and always gets worse at night but with that said, the intensity is much much less than in earlier times and/or during my last wave.  Those are the only physical symptoms worth talking about ATM.

 

Yep, there sure are good signs of recovery going on FINALLY.  I'm starting to feel more connected to life (well half-connected which is better than no connection).  The severe WD induced depression that has plagued me, at torturous levels seems to have greatly improved and fairly quickly I might add.  Although, IF I encounter something that feels hurtful to me I can immediately plummet into a temporary bad state (so the emotional liability factor is still present) however, with that said, I can more easily move myself out of it rather than feeling trapped or locked into it.  This is a very good improvement and I really hope the worse of the WD induced depression has lifted for good.  TJust to be clear: the depressive feelings are still present but they are much lower in intensity these last few days.

 

It was hard to determine how much of the depression was WD induced versus life circumstance induced.  No doubt there are many depressing losses that I have incurred (actually it would break the healthiest of people) but the severe depression has lifted despite the unchanging life circumstances.  So, it's safe to conclude that the majority of the depression was endogenously produced rather than exogenous in nature.

 

BTW, I'm not sharing all this to place any pressure on you Lislis to respond.  Rather, I'm sharing it for others to read.  It may allow them to RIDE OUT the WD induced depressive phases with an assurance that EVENTUALLY things WILL IMPROVE.  I just wish to give hope to others since, hope can provide us with greater resilience to ride out the storms.

 

With all that said, despite feeling quite good ATM, I'm trying to remain balanced in way of not deluding myself into thinking that  this "better state" will remain consistent.  As we know, WD follows a non-linear pattern and thus, I likely will have a few more waves but my hope is that they will be less intense.  The last wave at 30 months was not pretty but I do feel a whole lot better AFTER this last wave than I did before it occurred.  And BTW, the wave lasted a good solid month in my case.  The depression I spoke about in the above paragraphs lasted for 5 months despite not being in a "wave" per se. It was one of my constant symptoms and it was severe and unrelenting but I kept telling myself to hold on........to ride it out.  It was incredibly painful, lonely and quite frightening if I was to be honest.

 

But, I made it through and I'm here to tell everyone that it will eventually pass.

 

I recenlty just stopped every supplement and probiotic and vitamines, and withing 2 days, I felt so much better. 

 

Fantastic Lislis!  I'm so happy for you!

 

I do believe everything I thought was helping was actuall cuasing more distress. 

 

This very much could be true.  So many people incur more problems when ingesting supplements.  I think a good rule of thumb is to slowly introduce such things and only ONE at a time.  Start on a tiny dose and see how one's system reacts.  When we introduce full dosages or mega dosing we can actually challenge our immune, CNS and endocrine systems thus, creating more imbalances.

 

Also, introducing multiple substances simultaneously is not prudent since, it can make it impossible to distinguish which substance is the offender.  You know what I mean?

 

Now this may not be the fact at all, and this is just a good moment,

 

Indeed, that is possible as well.  It's good though to see that you are thinking critically.  You also seem to be very interested in spending tme observing which will also serve you well.  With all that said, I truly hope that things are on the upswing for you from here on out.

 

so I will be curious to see if I remain stable or if things will turn about again, lol.  The only thing I am still doing is watching what I eat and staying strick for the time being.

 

Yes, it will be interesting to see how things play out.  As I mentioned, I really hope the worst is behind you.  BTW, I think you are wise to stick to a good diet.

 

I pray everyone finds relief in the new year!

 

I wish everyone the same as well!

 

Life does get better!

 

 

Still Alive

[[St...]]

Happy New Year to all the protracted members here on BB.  May we all recover completely in 2012!!! 

 

Happy New Year to you Whoopsie and to everyone!

 

 

Let's count on experiencing full recovery in the coming new year!

 

 

Still Alive

[[St...]]

Hey everyone, I'm just over 2 years out.  For the last 3 months or so I've been taking fish oil, a multivitamin and glutamine.  Any advice on this?  I don't know if I've noticed a worsening, but it hasn't sped up recovery that's for sure.  It's so hard to tell if the supplements have led to waves or not.

 

Throughout my ordeal, at least for the past year, I've read that most supplements do not aid in recovery.  Even Dr. Ashton in "The Ashton Manual" indicates that supplements are unnecessary and probably worthless for most people eating a proper diet.

 

For me, at one year out, I noticed that fish oil and multivitamins revved up my issues.  So I've stopped both, which I had been taking for almost 4 years as advice from my doctor.

 

Why are you using glutamine? Rich sources of it are in most meats, so getting it naturally is advisable.  I've also learned, whether accurate or not, that taking oral amino acids can disrupt the balance of amino acid processes in the body.  I've read that amino acid supplements aren't meant for long-term use and carry some warnings which are varied and seem inconsistent depending on who is writing the review.

 

Now, if you don't seem bothered by at least the fish oil, then I'd continue to take that.  There are many well-founded studies that demonstrate that fish oil has health benefits.

 

But, you'll want to fully discuss this with your doctor or qualified health care provider.

 

Matthew.............

 

I pretty much agree with your post.  Just to let you know that I too had been taking vitamins (without any ill effects) but at the 14th month mark (post rapid taper) they turned on me and reved up my CNS creating panic and anxiety attacks so I had to immediately cease ingesting such.

 

The increase in panic would occur exactly 1 hour after ingesting my multi-vitamin and I could no longer tolerate B-complex vitamins as well.

 

 

Still Alive

[[li...]]

I c/t from 11 pills .5 mg of klonopin per day after a 2 years use in Sept. 2007.  After 2 weeks, I ended up in the ER and had to go back on and tapered for the next 18 months.  After that, I felt almost healed 6 months later.  Most of the physica sympots were gone and my bp ws returning back to normal.  I didn't even know what mental symptoms were, as I never experienced any.

 

I walked right into gettin my yearly flu show Sept. 2009 and within 2 week developed the most horrid symptom I ever had, including myoclonus jerks, heavy limbs, trouble moving my arms and legs, walking sideways, dizziness, severe head spasms, ongoing flu like sympotms, hot flashes.

 

To make matters worse I was more ill than before then before, that I took that flexeril I mentioned before for only 2 months ending March 2010, because of the bad head spasms, and that triggered all new mental sympotms that I had no expereince with ever, including death fears, gloom and doom, agoraphobia, psychotic episodes.  I became sugar intolerant, food sensitive, and got flooded with chronic fatigue when I'd eat.  It was impossible to drive, shop, work, but I had too, I was in such distress that I could never imagine recovering.

 

My question is what is my time line to consider for healing?  It has been 4 years since I first c/t, 34 months since I finnished tapering, and 22 months since the flexeril.  The mental sympotms have gone for the most part, I suffer mostly from GI issues, yet I still have inner vibrations that started 4 years ago.  My bp returned to normal 2 years ago, yet my chest still gets heavy, which also started 4 years ago.

 

I ask this because when I hear of people saying they expereince big wave around 30 moths, did I pass that from my first withdrawal, or could I expect one since I'm only at 22 month since I added the flexeril to the mix?  I do believe I'm mostly dealing with the effects from the flexeril, not so much the original klonopin, although I still have some of those original symtpoms.

 

I think too much, lol.

[[he...]]

I cant believe how many are protracted , I am 19 mths off from being on K for ONLY 4 1/2 MONTHS .... I am protracted !!!!!! :'( :'( Is there anyone on here that was short term like myself that is still protracted? I have alot of Nerve pain, burning/stinging firing from the nerves my ENTIRE body from head to toe, muscle tension neck, back, shoulders, anxiety, touch sensativity really intense, weakness, inner vibs, heavy legs/arms , sand feeling in my arms/legs, burning mouth, I never had any of these symptoms ever before benzos, I was put on them for V burning . I am so losing hope after reading abt 4 years off , still suffering , I am so sorry for all of you here. I feel like I have FM from all of this.

[[pa...]]

Helpme123 - I wrote to you on another post about FM but don't know whether you saw it.  I was diagnosed with FM long before I took benzos and my symptoms were constant muscle pain and tenderness.  These went away when I started running, which I did for 25 years, and then came back mildly when I stopped.  I still walk, but don't get the same hard exercise.  I never had the burning, tingling nerve pain that we have now until I reached tolerance and withdrew from bzd's.  I do not attribute these constant (2 years now) nerve pain sensations to anything but withdrawal.  I only stop noticing them when I'm active.  Do you find that when you are taking a walk or working around the house that you notice the pain less?  If you do, maybe you could give yourself 3 - 4, or more, breaks a day by going for a short walk.  I have been able to sort of train my mind to expect that these breaks are going to make me feel better, and I look forward to them.  Just knowing that I will go for a walk before lunch gives me a feel good (better) goal.  I'm working toward being able to put this pain where it belongs - in the background - until it decides to go away.  I have reached the point where I no longer have to use a prescribed ointment on my chest and legs to dampen the pain and knowing that I can find a little relief lessens the anxiety which makes the nerve pain worse for me.  Please take care of yourself,

 

Paresthesia 

[[st...]]

Dane, I had a huge setback at the 18 month mark and my anxiety came back with a vengeance, too.  Hang on, Dane.  You are not alone.

 

Patty  xo

[[be...]]

Turned 2 years yesterday.  Im in the worst wave ever!  I swear to God it feels like the beginning.  I'm having strong DR, intrusive thoughts, belly is so painful that im comtemplating going to the ER. I think that its going to explode! 

 

I also am freezing!  I've got 2 coats on, my heater turned up to 80, and a heating pad.  Im cold to the bone and my teeth are chattering.  My hands and feet are ice cold, im nauseaed, extreme headache, heart racing and beating hard with breathing irregular.  Sick, Sick, sick.

 

I'm so worn down by this.  I want out!  Dont know where to go for help.  How can i be this sick without dying?

[[Wh...]]

Oh Believe ... it is so shocking sometimes isn't it that we are so far out and still hurting so very badly?  I still want to congratulate you on your two year anniversary.  I wonder what's going on with your belly.  I have been so fortunate not to have GI issues worth noting.  Have you experienced quite a bit of that or is this new?  I can relate to the DR/DP, intrusive thoughts ... my brain feels freaky fried sometimes but so much worse in the mornings and you have always been the opposite, getting hit at night.  Instead of cold, I get heat waves ... the cold would be much harder to bear.  Lots of head pain here and the ever present nerve pain in the neck and shoulders.  Today my chest was squeezing and burning ... I have gotten so good at ignoring symptoms.  We were driving and I was thinking that if the people I was with, were having the chest pain I was, they would hightail it to the hospital emergency.  I say nothing and just look out the window like nothing is happening.  What a weird way to live.

 

Unfortunately there is no way out of this.  I have spent many, many hours wondering how I am alive ... just like your "How can I be this sick without dying?"  Yet, we carry on, day after day ... unreal.  Let us know if you go to the ER and what happens if you do.  I'm cheering for you ... we are not alone.

 

[[be...]]

Im still up.  Sx's are finally subsiding, except the benzo belly and DR.    I havent had that freezing thing for over a year  It''s just left.  I finally have lowered the temp in the house and stripped off into my pj's. 

 

Feel like ive been ran thru the ringer.  My brain and ears are buzzing like a chain saw.  Oh well, Maybe i will get a couple of hours sleep before i have to take my son to school.

 

This whole thing is just brutal.  I never know if im legitimately sick or it's just another sx. 

[[Wh...]]

Okay Believe ... good ... the worst has passed once again.  You are right that we don't know whether we have some kind of awful illness at times or not.  Used to be able to actually read the body signals about whether danger was present and something was wrong and act accordingly.  Now the body throws off danger signals at random and I have become adept at disregarding the information.

 

Something further to the weirdness of not being able to believe your thoughts and not being able to listen to what your body is telling you is that I have become pretty darn good at following my heart.  On New Years Eve our little family and some close friends did one of those Murder Mystery party's.  I was kind of in a panic that I couldn't follow all the clues cuz my brain just isn't working and that the brain damage would become obvious to everyone.  LOL  When that fear came up, I took my son aside and said "Is it obvious how retarded I am?"  He said "No, don't worry about it.  If I don't guess who the murderer is, someone else will, no big deal."  After that I relaxed.  The interesting thing is that although I couldn't use my brain to figure out who the bad guy was, my gut told me and I was the only one who was able to guess correctly and I won the game.  I noticed that I sure put alot of pressure on myself to perform and be "right".  Type "A" personality rears its head.

 

I wonder if I'm getting the message across here that my mind and body have so betrayed me with their constant misfirings that I am operating as if I don't have either a mind or a body.  Very fortunately there is something else within me that "knows" things and if I am quiet and relaxed I can pick that up.  I know, very hard to be calm and relaxed with a raging mind and body but it really is possible by allowing all this chaos to happen rather than reacting to it.  This is certainly not a normal human experience we are having here.

[[Ma...]]

Turned 2 years yesterday.  Im in the worst wave ever!  I swear to God it feels like the beginning.  I'm having strong DR, intrusive thoughts, belly is so painful that im comtemplating going to the ER. I think that its going to explode! 

 

I also am freezing!  I've got 2 coats on, my heater turned up to 80, and a heating pad.  Im cold to the bone and my teeth are chattering.  My hands and feet are ice cold, im nauseaed, extreme headache, heart racing and beating hard with breathing irregular.  Sick, Sick, sick.

 

I'm so worn down by this.  I want out!  Dont know where to go for help.  How can i be this sick without dying?

 

My 13 month anniversary from stopping Klonopin was yesterday.  I feel just like you describe.  I'm always cold, nauseated, headaches, heart racing / beating hard at times.

 

I hope we both see a pleasant end to this craziness soon and we both feel great soon.

[[km...]]

Mathew just wanted to say that I noticed you are 2 months from the beta blocker.  I myself am 1 month off my anti depressant and I think Ashton is right that it takes a good 12 months after ALL head meds are discontinued that we feel healing.  So just hang in there we are getting there just takes alot of time.

Hugs

Kristin

[[Ma...]]

Mathew just wanted to say that I noticed you are 2 months from the beta blocker.  I myself am 1 month off my anti depressant and I think Ashton is right that it takes a good 12 months after ALL head meds are discontinued that we feel healing.  So just hang in there we are getting there just takes alot of time.

Hugs

Kristin

 

I hope I get relief sooner than another 12 months...  The past few days have been OK in the evenings, but most mornings (including today) I have to fight some severe anxiety and weird sensations in my chest, tummy, abdomen....  Bleh! 

[[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?

[[km...]]

The mornings are the worst for me as well

Hugs

[[Ma...]]

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.

[[be...]]

Whoopsie,  Thanks for the support.

 

It was rough night last night.  I even woke up my little one, dressed him and took him to school.  I found out when we got there that there was no school today.  Ugh.  I know that school didnt start until Wed, but i was really out of it last night.  lol

 

I finally got some sleep this morning with the help of melitonin.  I just woke up and feel fairly good again.  My mind seems to be here, but stomach still hurts.  I can deal with this.

 

I have the weirdest cycle of windows during the day, and bad waves at night.  Such an extreme difference within a 24 hour period.  The contrast is sometimes very hard to deal with.

 

Hope you are having a good day.  It was a late night for you also. 

Thanks again!

[[bu...]]

Am new to webpage but decided to read your bits & add mine as I stopped clonazapm for chronic pain codeine for Ibs & citalapam to help withdrawl. I did fast withdrawl in 2wks after trying slow withdrawl for 2yrs. I have awful pins needles in face hands legs feet, balance issues like I am walking on board ship, lead legs feels like I am dragging them some days, sleep is much better 3 - 6 hrs, friday I get a treat of 7 - 8 hrs whopp whoop!! My philosphy is to get out & walk although some days the body seizes up & its pretty scary so a good ol boo hoo & music on full pelt I hit the beach & walk, rain or shin, there is nothing like adele or mumford to get you going !!  The pains in thigh muscles are getting easier but the fidgets in the evening are a real bind !! to say the least, but boy o boy am I glad to be free from those damn drugs, cos I'm off to nepal in september trekking for charity & am not going to canx again , as I have been trying to do a sponsored challenge for 4yrs, that's how long it's taken me to get this far!! so hopefully after reading your bits I will heal a bit more, to read others symptons makes one feel not alone. Happy Healthy New Year. Bubbles22