Post Benzo Protracted Withdrawal Support Group

well, this post gave me one thing to be grateful for today...i seem to be ok with the high doses of vit d i'm currently taking daily.  at least as far as i know...i am trying to get my levels up, as i have been diagnosed with osteoporosis at the age of 36. no doubt accelerated by the non stop diarrhea/inability to chew solid food/lack of appetite/nausea that i suffered during tapering and for a good 8 months afterwards.  reading vertigo's post, i feel like he is one of the lucky ones for feeling mostly healed at 18 months off. for me, i started using ativan because i'm an addict and i loved the way it made me comfortably numb, i was instantly hooked. there was no 'reason' for me to take it...i am almost 22 months off and still suffering a LOT.  I spoke with Una when i first started on my valium taper, and i remember her very straightforward and 'knowing' way of speaking about benzos.  I believe what she says is the truth, i have no doubt that i'm in for another two years of 'healing'.  I also found out i have insufficient levels of cortisol, meaning my adrenals are shot and I am, admittedly, addicted to caffeine.  These things are hampering my recovery, and I know it.  I continue to have pain, severe at times, jerking of my limbs and whole body as i'm trying to fall asleep and in the middle of the night, insomnia, tinnitus, jaw pain, teeth pain, muscle fasciculations (lately it has been my chin that will quiver nonstop for hours, today it was my right upper back), severe weakness, depression, anxiety, etc etc.  This is not all the time, some nights i sleep well, others i sleep hardly at all. some days i cannot hardly walk up the stairs, others i have the energy to do my 1 and 3# dumbbell exercises.  i asked my doctor to test me for lyme, which came back negative, but i'm thinking of going through igenix and doing the western blot test that they have available.  money is pretty much nonexistent though, and i can't afford to go to any more doctors or have any more testing done.  i feel pretty hopeless at the moment that i'm ever going to feel 'normal' again.  i know the benzo permanently altered me, i have no doubts about that any longer.

 

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jjkale:  your symptoms are all familiar to me.  while i don't consider myself having been an ativan addict (see my history) i was certainly on the drug for a very long time taking relatively high doses.

my point in this post is to tell you that most of these symptoms went away by the 20th month after ct, although some persist and new ones present.  i wonder if you are bringing stuff into your body that sets you back.  i find that even the supposedly benign medications like ibuprofen set me back.

I have a thread "Protracted withdrawal" in the Introductions section.  Please remember that I must have ct'd over and over again at least 6 times, because I did not know my sx were drug related and believed my idiot GP.  This was a long time ago when i had no access to any info at all.  Una says Cold Turkeys are the most important factor in recovery time, after that, she thinks it is metabolism (different for everybody).  I don't have the energy to go into it more at the moment, but I will have a think about what I have  learned and then maybe start a buddy blog.

 

 

I am not alone, Mick Behan of the APPGITA is taking as long as me to recover and I know of several other people.  Luckily we are in a minority, because it is very very hard.

 

 

Polenta

 

will write more another time.

 

PS thanks for all the support, I keep forgetting to say that! My excuse today is a bad night so "my head hurts like a warehouse" as I heard someone coming down from ecstasy saying - I know exactly what  he means!

Thank you so much for the D information everyone. I will not be taking the 50,000 IU's tomorrow or every again. So sick of being sick.

 

KID

 

Hi Jan.  I think B12 is another one that can be deficient if using PPI (proton pump inhibitors) like prilosec or nexium,  that may not absorb well by supplement pill but can benefit via injection.

 

Vertigo

Polenta. Read all your previous posts his morning.

 

You don't need to write any more to explain. It's all there.

 

I'm overwhelmed by admiration of your courage and by a deep deep sympathy for what you've had to go through. But I suspect you don't want to hear that crap and neither would I. It's true none the less.

 

All of us in protracted withdrawal however, fear the monster that's taken you over and we have to admit it straight up. It colours all our thinking even as we try to fight it. We become lost in ourselves. There's nothing I can say to make things better as you've heard t all before from more sympathetic people than me. Nonetheless I admire you and love your courage.

 

There are hundred of symptoms in this nightmare but to me the overriding loss is the loss of fun. Wild animals give up having fun when they grow up to do what nature makes them do. The human species goes on seeking out fun for ever. It makes life worthwhile. I can only wish that you like all the others in this nightmare have fun again one day soon.

 

I'm wondering if in the definition of "protracted" if number of symptoms is considered.  For example, if one had say 10 strong "withdrawal" symptoms in the first 18 months and 8 of them are mostly healed but one or two persist into the 2nd year, is that considered protracted?  I've always considered number of symptoms and intensity to be an indicator of protracted.  For example, having perhaps five or more symptoms persist at an intense level would seem to fit a clear picture of protracted. Yet I have some buddies who have healed in most ways (mostly used klonopin) but still have persistent annoying intermittent nerve twitching or some occasional insomnia.  If one has one or two stubborn but not intense symptoms left, but goes on in the third year, are they considered protracted with all else being "normal"?  Also, I've heard some describe a general CNS weakness or vulnerability in the 2nd or 3rd year, perhaps when stress is higher than normal.  Is it helpful to consider number of symptoms and intensity of symptoms in defining protracted?

 

Vertigo

 

 

Polenta. I see you are benzo free since 1993 and you still consider yourself in protracted withdrawal. Could you say a little more about your present situation and what symptoms you have. Maybe I've missed other posts from you that explain this. That's nineteen years of withdrawal. Am I the only one shaken up by that statistic?

 

YES!  That is VERY disturbing indeed!  I'm not so worried about the majority of people here because I feel they will heal.  Over the last 2.5 years here I have seen alot do so.  But what angers me  is the poor souls that are still sick after that long.  My heart goes out to you Polenta.  Dont be afraid to post here.  We need to face the truth about how long this can take.  Plus you need the support!  Please let us know what you have learned in that many years about wd.  If you are too afraid to post here then PM me.

 

We have a date of after 18 months is protracted wd, at what time should it be considered permanent?  10, 20 50 years?  A lifetime? 

 

I will confess that I was better on than off.  Ive been sick with little quality of life compared to the way I was living before my ct.  I often ask myself, how long will I allow myself to suffer before I decide to do something like another med.  After 10 years I think i will.  What good is it to wait for 20 years just to see if im healed by then.  That is wayyyyy to long to suffer.  :-(

 

IMO. we'll know if we've completely healed on our deathbed. If we're in a window when that time comes, then we were healed. If we're in a wave, then, well, it wasn't a wave at all, but "permanent."  Seriously: I know that sounds sarcastic but that's how I feel!

 

You're not the only one who feels they were better on than off.

 

Sucks, don't it?

 

ginger

Thank you so much for the D information everyone. I will not be taking the 50,000 IU's tomorrow or every again. So sick of being sick.

 

KID

 

Hi Jan.  I think B12 is another one that can be deficient if using PPI (proton pump inhibitors) like prilosec or nexium,  that may not absorb well by supplement pill but can benefit via injection.

 

Vertigo

 

Hello ole friend- I came off the PPI's within months of coming off the benzos 2009 Summer/Fall.

 

As you may recall I was diagnosed with Burning Mouth Syndrome and which began one week after I swallowed my last pill/valium. My then doctor said it was definately Neuropathy from benzo cessation. But Verti my doctors had told me during my taper that I definately had heart disease complete with ST segment depression and bla bla bla when low and behold afer I came off the pills I was HEALED  and didn't have heart disease at all.

 

Soooooooo, Yesterday morning after having lived with Burning Mouth since July 2009, repeated bouts of very intense bone pain and dry eyes as well as  host of other things, the specialst I saw urgently last Friday, called to let me know I've got Sjogren's Syndrome. I'm blown away Verti and so shell shocked right now I can't express it all. I'm scared silly of the medication he's called in (Hydroxychloroquine) for me to take and haven't even gone to pick it up yet, I just can't do it.

 

I have no idea which end is up right now or what caused what to happen or for that matter if I it's still neuropathy jeez I just don't know.

 

As for the B vitamins and all others the only two things that I have wrong seem to be repeated bouts of very low D and currently a low reading on Zinc as per the doc's call yesrterday morning in addition to this syndrome he's diagnosed me with.

 

Take care Verti and Co.

 

Jan

I am very sorry to read about Sjogren's Syndrome, Jan.  As you said, sometimes these diagnoses are not definitive and it may be worth getting another opinion.  I read that it's some kind of auto immune disease. Did you know that Venus Williams, who just won the women's doubles olympic gold medal with her sister Sarina was recently diagnosed with Sjogrens?  I looked up one article that said prognosis is excellent and that new treatments are being researched.  Again, sorry to read of this, Jan.  Maybe you can get another opinion and research that particular medication further.

 

http://www.medicinenet.com/sjogrens_syndrome/article.htm

 

http://www.dailymail.co.uk/news/article-2079539/Sjogrens-Syndrome-Venus-Williams-opens-incurable-disease.html

 

Vertigo

Hey Jan,

 

I'm so sorry to hear what you are going through right now.  I just wanted to say that I too have that burning mouth on the inside and around my lips.  Mine is definitely the benzo wd so don't rule that out just yet.  I have also had bone pains that lasted quite some time but have since gone.  And I am 24 months off.  I think Vertigo gave some really good advice. Do your research, maybe get a second opinion.  Find out exactly what the tests they did on you measure.  And in the meantime hold off on that medicine.  They can always hold it for you if that's what you eventually need if you truly do have Sjorgens. 

I have burning mouth too. My dentist confirmed its a direct result of benzo w/d - klonopin is even prescribed to treat it. He told me to expect it to last 3 years. it's been 3 1/2. It's common amoung post menopausal women, too, so I guess I'm pretty screwed. Whatever; I'm used to it. The only bad part of it for me is I often can't feel my teeth so food drops out, so I look like a real slob when I eat!

Hey Jan,

 

I'm so sorry to hear what you are going through right now.  I just wanted to say that I too have that burning mouth on the inside and around my lips.  Mine is definitely the benzo wd so don't rule that out just yet.  I have also had bone pains that lasted quite some time but have since gone.  And I am 24 months off.  I think Vertigo gave some really good advice. Do your research, maybe get a second opinion.  Find out exactly what the tests they did on you measure.  And in the meantime hold off on that medicine.  They can always hold it for you if that's what you eventually need if you truly do have Sjorgens.

 

Thank you Stronger- The pharmacy did in fact put a hold on it for me this afternoon and I did also ask for a biopsy. They did labs Lots of them to confirm but that's just not enough for me right now.

 

Thanks again,

 

KID/jan

Just checking in on you Jan/KID.  Glad to hear it.  Just hang in there and give this some more time, thought,etc.  Maybe get that second opinion.

Polenta do you know how long I can expect to feel crappy from stopping the Vitamin D? I was on 2000 iu daily for a month and then on a 1000iu daily for two months. The last month started getting side effects.  I stopped 9 days ago today. I also took a product with DHEA in in for just 3 days which made matters worse. I am better but having adrenaline rushes early in the mornings and don't start to feel better til later in the day. Any help or if anyone has info on this would be greatly appreciated. I am so mad at myself! Set me back and I was doing pretty good.

 

mal

Hi Mal,

 

For what it is worth I am 27 months out ,currently in an awful wave actually I think the hardest so far,about 3 weeks ago I began taking Vit D 3000iu per day, plus a natural anti inflamatory supplement plus tumeric-well after 1 week it sent me into this nightmare wave.

I have since stopped everything,and of course my Doc said I needed it.

Not sure how long being rev'd up will last but back at 10 months off had to take a antibiotic few a few weeks-well what a wave that was lasted about month or just alittle less before I came down to normal crappy baseline.

 

Rondo

Thanks for the response. I took DHEA three times too. Dr. 5hought it would make me feel better. Reved me up instantly. Another dr. said it popped my adrenals. Having terrible symptoms. Come and go but really feel bad. Adrenalin surges, nausea, no energy and no appetite. Forcing myself to eat. Been sick for a little aver a week now wondering how much longer.

 

mal :smitten:

Hi mal,

 

So sorry to see you on this site.  :'(

 

Love ya,

 

Patty  xoxoxxo

So sorry to be here but this family has gotten me through many bad times and I know they will get me through this too. Drs. try to help you feel better but our bodies are different once we have gone through this benzo hell. I am scared with these adrenalin surges that I seem to be getting but I pray they will let up and that there is someone here that can make all this make sense to me or tell me they have had similar reactions to the same stuff I was taking. Love ya Patty! You are my rock and have been there for me always!

 

mal

 

Hey everyone,

    I'm almost 16 months out and still having a ton of symptoms. I had a window of about a month where I was maybe 80%, but everything is back now. I have come a long way since the beginning. I work full time, go to the gym three days a week, and can spend time with my family.

 

    On the downside, I still have all of the same head symptoms: pressure, severe pain at the base of my head/neck, eye pain, blurred vision, dizziness, etc.. I have nerve pain and burning skin, and adrenaline rushes. I still can't have too much sugar, any caffeine, and I seem to have bad flare ups with anything that has too much msg in it.

 

    I've had a rough couple of months in my life as well and the stress hasn't helped for sure, but I'm trying to stay positive. Just wish this head stuff would go away!

 

Jeff M.

Hi Jeff ... someone here sent me a link to your blog post today about your wave and how you feel about it.  I wanted so badly to say to you that this ends but in all honesty, I cannot.  I think they sent it to me because the same thing happened to me as what happened to you.  I was 90% better and pain-free for 2 whole weeks and then crashed again.  I seem to have the same symptoms as you are experiencing ... like I've been hit on the back of the neck/head with a (I don't know what ... but it hurts like hell).  The MSG really does a number on me and I have to be so careful what I eat.  Sugar and caffeine are easy to avoid but not so much with the msg as it is in so many things.

 

All we can do is hang-on and have faith that we'll recover from this as so many others have.  By the way did you guys read Believe's last post ... it's so good to hear about these good days.

 

Hey everyone,

    I'm almost 16 months out and still having a ton of symptoms. I had a window of about a month where I was maybe 80%, but everything is back now. I have come a long way since the beginning. I work full time, go to the gym three days a week, and can spend time with my family.

 

    On the downside, I still have all of the same head symptoms: pressure, severe pain at the base of my head/neck, eye pain, blurred vision, dizziness, etc.. I have nerve pain and burning skin, and adrenaline rushes. I still can't have too much sugar, any caffeine, and I seem to have bad flare ups with anything that has too much msg in it.

 

    I've had a rough couple of months in my life as well and the stress hasn't helped for sure, but I'm trying to stay positive. Just wish this head stuff would go away!

 

Jeff M.

Hi Jeff ... someone here sent me a link to your blog post today about your wave and how you feel about it.  I wanted so badly to say to you that this ends but in all honesty, I cannot.  I think they sent it to me because the same thing happened to me as what happened to you.  I was 90% better and pain-free for 2 whole weeks and then crashed again.  I seem to have the same symptoms as you are experiencing ... like I've been hit on the back of the neck/head with a (I don't know what ... but it hurts like hell).  The MSG really does a number on me and I have to be so careful what I eat.  Sugar and caffeine are easy to avoid but not so much with the msg as it is in so many things.

 

All we can do is hang-on and have faith that we'll recover from this as so many others have.  By the way did you guys read Believe's last post ... it's so good to hear about these good days.

 

 

Hey... I'm right here with you both.  I could have written either one of your posts.  I was doing fine, but at 20 months off, I've got weird symptoms again.  Jolts, zaps, head rushes, adrenaline, heart palpitations, cold, and now my skin looks thin and my veins seem more blue and stick out.

 

I've been to 2 doctors and they think it's all in my head.  Ugh.

Hey, guys, it is not unusual at all to get hit again between the 16 to the 24th months.  Such a travesty, for sure.  Yea, what is up with those big, blue bulging veins.

 

It's good to hear from you, Jeff......even under the circumstances.

 

Patty  xoxo

Hi Mal,

 

I'm very curious what your adrenaline rushes are like?  I recently had a huge reoccurrence of symptoms, very unlike any I had during my initial withdrawal.  One of my more bothersome symptoms are these adrenaline-like surges.  They're very odd, and occur when I get even remotely excited about anything.  I feel them mostly in my head, legs, and arms.  I'm not sure if they're even adrenaline, but it definitely feels as if something is being released into my bloodstream because I can feel it spreading through me.  I'm unsure if it causes my heart to race, but it feels a bit like the shivers you would get from watching a scary movie, but much more intense, and it happens many many times a day.  Anyone have any experience with this?  I am about 30 months off KP.

 

Bear

Hi Mal,

 

I'm very curious what your adrenaline rushes are like?  I recently had a huge reoccurrence of symptoms, very unlike any I had during my initial withdrawal.  One of my more bothersome symptoms are these adrenaline-like surges.  They're very odd, and occur when I get even remotely excited about anything.  I feel them mostly in my head, legs, and arms.  I'm not sure if they're even adrenaline, but it definitely feels as if something is being released into my bloodstream because I can feel it spreading through me.  I'm unsure if it causes my heart to race, but it feels a bit like the shivers you would get from watching a scary movie, but much more intense, and it happens many many times a day.  Anyone have any experience with this?  I am about 30 months off KP.

Bear

 

Hi Bear.  I am 32 months off valium.  At 27 months, I took on a challenging role and had a return of adrenalin surges which also caused a bit of sleep disturbance intermittently for a period of some days off and on for some number of weeks.  I have posted about feeling at times like I had a weakened or sensitive CNS in the 2nd year and sometimes this year when stress became higher than usual.  I think it is a fight/flight response that is a little off kilter when stress is high.  By the way, I did not and do not consider myself "protracted" even though this happened back in March/April.  By the way, most of my other "withdrawal" symptoms were gone between 6 and 18 months.  I believe one must have several symptoms consistently beyond about 18-24 months to define as "protracted".  Also, did you have panic before benzos?  Is it possible that this could be a manifestation of a condition that you may have had or been predisposed to before the benzo?  In my case, I would never have even been able to take on the challenge this past Spring before benzos, so I consider it going beyond my normal comfort levels and would have expected adrenalin rushes and high anxiety before the benzo had I taken on the challenge then. 

 

Best,

 

Vertigo

My opinion is that another cortisol adjustment is occurring. Mine progress from those rushes to physical anxiety which is why I think it's cortisol-related.  They've been happening for me since the beginning 3 1/2 years ago.

Hey, all my heroes...

my hub just ran out the door screaming "I can't go back there!!!!" and jumped in the car before we could stop him and drove down the road screaming like a mad man. We had an argument...or more like it was all my pent up frustrations let loose about how he's been doing better than I am...apparently not. He was fine and then turned in a split second.

 

He called later to say he was safe...but I can't #*@% believe this is happening again at 31 months off!!!!!  Does anyone still not believe there's a hell? Because whatever the root source of this evil needs to be eternally banished in my weary, fed -up opinion.

 

Anyway...is this unheard of for any of you this far out to have this happen after being okay for months? I already know the answer...I've been here for years now...just want some kind of encouragement and acknowledgement of suffering from the best people on earth. (You all are, ya know.)

 

He was only on EVIL ativan for 5 months mostly trying to get off. 

Are our lives permanently ruined? or does it just feel that way right now? Will I always feel like I'm in post traumatic stress? Does it EVER go away? Hasn't it stolen enough from us?

 

For all you people who think it's scare tactics to tell the truth about c/t ...well...don't read any of my stuff. This is among the worst thing that could happen to a family. Period.

 

Thank you, dear, dear Colin & mods for keeping this place going...there is no other help...and I feel a tiny bit better already just having those who know to rant to. Love you all!

 

Puffin(BW 's wife)

 

Oh Puffin... I've been trying to reach you by PM, your inbox is full.  Came on and searched to see if you have posted..  My heart broke reading this post.  Oh, Puffin.. you have been through so much, I'm at a loss with all of this also.. but dear God.. this happening again to you both.  Everything with Ron, over 19 months know, is still awful.. I feel like I'm dying half the time.  Only you understand. Oh Puffin.. I hope you read this, clear your inbox, you need the support from the ones who understand, even though we're behind you.. But as a spouse.. I understand.  My love to you... Pattylu