A long journey

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After taking 15mgs of Temazepam for sleep for over 25 yrs. I was suddenly refused further prescriptions.  Did my research and found Ashton's withdrawal charts and started with 8 mgs Valium almost 2 yrs. ago with ill-informed doctors as my guides.  (Just a note:  The charts do not take into consideration the duration you've been on benzos. I should have been put on a higher dose of Valium to start.) With approx. 20 of the many side effects, including mini-seizures, unable to talk or walk, HBP as high as 220, ER visits, 2 psychiatrists, cardiologist, and a neurologist who said he wouldn't treat me I was pretty much on my own.  At the same time I began the taper I contracted Lyme Disease.  Both took a toll on my central nervous system. I now have a Dr. who understands the treatment and is helping me.  I'm down to 3.6 mg of Valium with the aid of pills and liquid Valium so I can taper very slowly.  I'm still looking at months of tapering at the rate I'm going, but for me speeding up the process is not an option or advisable. (Been there, done that.  Not good.)  I turned 71 this week and miss my previous life of high energy and sleep.  I've come to understand healing from this dreadful withdrawal is not linear but rather like a wave that ebbs and flows.  If I may suggest, stay away from refined sugars and alcohol.  Both will cause more side effects.  It's been a long journey, but I know I've come a long way towards recovery with the help of my new Dr. and my husband (a real support system).  I'm so looking forward to having my full and active life back again where I walked 4 mi. 3x/wk in the forest and could entertain friends and family. This has been the most difficult medical challenge I've ever faced.  In my opinion, doctors should be better educated regarding benzos before prescribing and not relying on just a pharmaceutical rep.  Stay Strong!  You can have a full life ahead of you.  You not only deserve, but are entitled to one.

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  • Posted

    I was on elavil then Zopiclone for 40 years.  I M now 75.  Decided Jan 1st 2015 to get of Zopiclone..  Took a full year, barely smudges at the end.  Doctors were surprised saying elderly (moi?) mostly refuse to come off.  Last year Jan 2016 I started  using variety of herbals I was also taking toward end of 2015.  Kept on using herbs but often little sleep.  My doc said it can take 2 years more for brain to adjust and get gaba levels up.  My brain is clearer, and I am happier even tho widowed this past year.  But.  I still dont have the sleep or energy I wish for.  Partly my age, I suspect.  Also, interestingly, no one can find out why my bp spikes.  On meds for years, bp 135-150 range.  Now, like yesterday 195/95!  What?  Later went down to 140s.  I have a lot of stress right now, but live alone and travelling soon.  Echocardiogram shows nothing special.  Any opinions from your docs about your bp spikes?  Very scary.  Hang in there, we still have out wits.  I was told Zopiclone does not cause cancer, but messes with the immune system leaving people more vulnerable to cancer AND dementia.  That was it for Me. My husband had Alzheimer's.

    One thing.  I found you have to not panic about sleep.  If I wake and feel alert, I get up, make a small cup of Cammomile tea and read for half an hour. Then sleep 4 Hours or so quite often,  I tend to be rather sceptical about a lot of things, so surprised it worked for me.

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    • Posted

      Hi Cass

      Thank you for responding.  I too go Moi? when referred to as elderly. cry  I'm most impressed you were able to kick Zopiclone effectively and effectiently and are finding methods to overcome some of your sleep issues.  I will definitely buy some Cammomile tea and follow your suggestion.  Not falling asleep until 4 am or waking at 3 am with brain zaps and profuse sweating, has at times plagued me.  I did find not being able to fall asleep in a timely manner, was due at times to refined sugar.  I had a decadent dessert to celebrate my birthday and paid the price.  I'm also impressed by your ability to handle your late husband's condition while tapering.  My condolences on your loss.  My husband is partially disabled and much has been placed on my shoulders that he once was able to achieve.  So I find it so important to continue this journey so I can once again function not  only for myself but in some cases for both of us.  I'm sure you found the same to be true with your circumstances. There are those of us of our gender who come from "strong stock" and refuse to bend easily to pressures and stress. 

      As for the intermittent HBP, I had all the tests a cardiologist had in his tool box.  All was considered good for someone my age. (Age thing again!). The spikes are from the GABA still trying to find its normal level leaving a residue of anxiety. I found only one exercise that seemed to help.  Inhale through your nose (count of 5) and blow out slowly using a count of 10.  Do that a few times and take your BP again.  See if that helps.  I was told there would be no damage to my heart with this type of intermittent high BP, no more than a good run because of the source (GABA). 

      Hope to hear from you again.  So nice to find support and assurance from another "young" septuagenarian. 

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  • Posted

    Thanks for sharing your story. I wish you the best on the journey ahead, and hope you are soon walking 4 miles in the woods again. 

    As my new doctor recently told me 'you didn't do this to yourself, we did this to you and we will fix it'. The medical industry went from giving everyone every to then denying people drugs or tapering them too quickly. Doctors are there to heal, not to cause torture, I think there is some oath about that... ; )

    Take good care and be strong. I am sure many others will find confort in your story. No one is alone. 

     

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    • Posted

      Hello Judi (with and "i"wink.  Thank you for your kind words of support and encouragement.  We, who have been forced to struggle through this nighmare, need all we can get. 

      Walking in the forest once again is my goal.  I miss being among my favorite trees and animals.  I'm determined to see them again  months from now.  Until then, like so many others, I make a valiant effort each day while looking forward to "windows" of clarity and functionality.  They are coming more frequently and give me hope and promise of better days to come. 

      Would you care to share "your story" Judi?  While we often find commonality, each persons journey is unique.  I'd be most interested.

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    • Posted

      For me it isn't Benzos. I signed up for this discussion when my partner, who had been on zopiclone for about 2 years, suddenly had his (our) doctor retire. I was worried about his withdrawal and joined this group/discussion for info. For him, it was 5 nights of no sleep whatsoever, edginess, and even crying (I had never seen him cry in the 12 years we have been together). He was finally able to get off them and eventually sleep again. But, I think the lack of sleep makes one much crazier than the lack of drugs... (same goes for the efrects of drugs that keep you from sleeping in the first place [stimulants]).

      But for me, it i morphine. I have chronic head pain after a shattered skull, and emergency craniotomy for epi-dural and sub-dural hemtomas just over about 13 years ago (the latter of which could not be removed). My skull never fused and I have trouble even washing or brushing my own hair. There is also a piece of skull missing behind my ear that makes sunglasses or hats very difficult. 

      I am in Canada and a new "guidance" document puts me at 7x the maximum dose they should perscribe (but try convincing a new young doctor that 'guidance' is different from a 'rule'wink. Anyway, when my doctor retired he sent me to a pain clinic that I had to drive 3 hours each way to visit every second week to get my meds. They never even took my blood pressure; I just circled the pain (on human pictures), peeed in a cup, and got my script. Good-bye and see you in 2 weeks. As someone looking for a job, imagine asking for every second Monday (the only day they are open) off work...

      After months of searching I found a family doctor who said he is not adverse to prescribing opioids. So, I cancelled the hours away clinic. When I saw the new doc again (for my script) he reduced me by 25%, off the bat!!!! From what I understand, 10% is the max reduction to not experience withdrawl. He gave me Clonidine, a blood pressure med that is supposed to help with the shakes, nausea, edginess etc. However, my blood pressure is already low (85/62 the last time), so I really don't want to reduce it further. He also said I should make an appointment to see him within the next two weeks to 'yell' or 'beat him up', but when I called, he is on vacation the entire week!!!

      With no choice but to reduce by 25% all at once, my main problems are with the PAIN, not the withdrawl. Not sure what I am suposed to do about that, but it means I need to cut my workdays short (I am currently self-employed) and lose lots of money as a result—which causes stress and doesn't help with the pain.

      So, that is where I am at, different drug, but similar problem.

      It seems your overlying condition (lack of sleep) has also not been resolved, in which case, how can you just stop taking the drugs that helped? 

      It's like 'we gave you something for decades that worked, but realized we screwed up, and your life/function/well-being are the causualty'.

      That's my story, in short. Opioids are different from zops, but both also keep you from getting relief without them. Our bodies become 'dependent' NOT addicted. So, you can't sleep, and I am in pain... Craziness,

      I try to walk in the forest everyday myself, but when I am in pain, I too have trouble with that.  I hope we both soon enjoy the lives we imagine, with or without the external things that can help (there are many, but likely as you, I have tried them all).

      Take care "y"

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    • Posted

      To you and Judy also.  I am in Canada too. Had severe nausea etc with pregnancies, ended up in hospital for 3 months,  this is 50 years ago.  Each night rounds were made and every one knocked out with a sleeping_pill.  Went home addicted.  Baby too.  He had to,have meds to sleep at night.  You were taken off your drugs, or your partner was, too fast.  My doc was great.  Told me to start on 5 mg zop, but keep some7,5.  After a month ir longer on 5 mg, I then took the left over 7.5 and cut them in half.  3.75 for maybe 6 weeks.  Hard.  Then back to 5!mg.  cut in half 2.5.  Quite a time on this size.  Then in half again, practically crumbs!  But you get your confidence back that you are succeeding!
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    • Posted

      Hello again Jud"i".

      I noticed Cass has joined us both in conversation.  Welcome back Cass.

      Judi, your story left me both saddened and angry.  Sad for the way you and your partner were treated by the medical community and angry at that community for their reckless prescribling and subsequent abandonment.  I harbored that anger for almost 2 yrs until I found a compassionate and knowledgable GP.  She has helped me  more than any specialist I'd visited previously.  One psychiatrist who was suppose to have knowledge and followed the Ashton protocol messed me up and set me back further than when I started with him.  Yet another psychiatrist who specialized in addiction took me off cold turkey.  Neither allowed me continued faith in their profession. 

      Over the past couple of years I've been following discussions on this site.  The stories are heartbreaking.  So many had done to them what doctors have done to us.  They all had no problem prescribing, but then stopped prescribing when government agencies deemed these drugs unsafe with no backup plan in place.  There is no excuse for any of them to act without impunity.  At the very least there should have been guidelines to follow, given to all doctors when weaning their patients from these dreadful drugs.  Alas, we are left to fend for ourselves with only the internet as a source of information and support.  Shame on all of them.

      As I mentioned, I've read so many discussions on this and other sites where others have been prescribed multiple benzos and Z drugs, even opiates all at the same time.  I can't imagine the horror they and their families have had to endure. 

      I'm reminded of an old saying. "I cried because I had no shoes until I saw the man with no feet".  I may be months away from walking in the forest once again, but I, unlike some others, have a feeling of hope.  May the powers of the universe give us all the necessary strength to continue our personal journeys.

      Cass:

      Bought some camomile tea today.  I've not been able to concentrate on reading a book for some time now, but I'll give it another try.  Thinking of taking melatonin after I finish tapering.  What's your take on that?

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    • Posted

      Absolutely take it.  My doctor said today that Melstonin has some  anti- inflamatory properties.  Also try Valerian and Passionflower.  I find it best when you need something to use a variety.  Valerian us the root of benzos so don't take every night as per my doc. Let us know how Camomole and reading for a half hour or so works.  Don't make a full cup...better small cup made strong and you don't want to wake coz you have to 'go'!  It just seems to reset my sleep time and often sleep better.  

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    • Posted

      Hi Cass:

      Please check your messages on this site.  I sent you my email address.  Would enjoy having a private conversation with you.  Thanks for all your help.

      Judy

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    • Posted

      Hi Judi...

      Finally back attacha.  Lack of sleep is just the tip of the iceberg.  There's the constant "jelly" legs and what I call wonky head.  Kind of like putting a fishbowl 3/4 full on your head and walking around.  Then each cut or taper brings new or returning side effects.  But overall, I know I'm getting better when the side effects are not as dramatic as they once were.  Like you mentioned, a 10% cut is advisable.  That's where it gets tricky.  As you go down in dosage, the smaller the cut, prolonging what seems like an endless process of trying to heal.  The alternatives are to stay at the present dosage or continue to taper.  There's really only one choice....continue.  If I don't tolerance will rear its ugly head and I'll once again have to "feed the beast".  With recent restrictions, finding a doctor who will increase the dosage will be difficult.  Besides I really don't want to feel the last almost 2 yrs. have been for naught. 

      I've thought about your having to travel so many hours to obtain the prescription for relief from your pain.  It's mind boggling to me.  I live in the US and in a suburb of a main city.  I consider myself fortunate to have every medical specialty within a reasonable driving distance.  I trust you've returned to the original doctor and you're finding some relief again.  If you'd like to continue a private conversation, just message me with your email.  I'm here to listen and share.

      You take care too "i"

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    • Posted

      Hi Judy,

      Your words are both saddening and uplifting, and I think people on this site will take much comfort from your words—no one is or should be alone in this mess. 

      As for melatonin, it won't hurt to try. I was given it (or told to buy some) for a while from my pain doc who thought it may help with my pain (but it didn't). That being said, I am lucky enough that I have never had problems sleeping, give me a park bench or a busy alley, and I can go to sleep no problem. I was also given 5-HTP and a few other more 'natural' rememdies but did not find they worked for the pain. That isn't to say that they won't help you get a good nights sleep and feel rested in the morning with the grodginess etc., that Zops and others give you. 

      I would like to hear about your experience with melatonin should you try it. Maybe you could start before full tapering to make it easier?  

      As for me, I see my new doctor this Thursday and I am so afriad he is going to want to cut me down another 25% all at once, largely because one of my prescriptions has a refill left but the other (time release) doesn't.... I have had increased pain (or less pain control), nausea, chills, sweats and as you mention, yes, trying to work is hell. Doctors are supposed to improve our quality of lives, no torture us, I am going to ask for a slower taper, for one I still have the condition that requires the drugs.... 

      I wish everyone here the best in your struggles. 

      With love and peace

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    • Posted

      Hi Judi:

      ?Thank you for your kind words.  The availability of this forum and access to so many who are experiencing what benzos have done to them, has been a blessing.  There were several times when I thought I could go no further when this site and those who bared their souls, brought me back from a deep hole.  Unfortunately, as we've all remarked, few doctors are aware of or how to treat what we're experiencing.  If the internet gave me nothing else, it gave me all of you to help me continue my journey.  Absolutely life saving. 

      ?As for melatonin.. I'm so afraid to add anything else at this time. Just a heads up people:  Got a dreadful headcold a few days ago.  Like years past I grabbed for the pseudoephedrine.  WARNING!   It's a stimulant.  Dreadful night and following day. 

      Cass:  If you're there, had a difficult time sleeping last night even though I was dog tired.  Woke up after 3 hrs. of sleep.  Made some camomile tea like you suggested and.... IT WORKED.  First time I had that positive experience after a disturbed sleep. Thanks Cass. 

      ??Judi, use all your charm and forcefullness to get the doctor to acquiesce to your requests.  There's a lot at steak.  Let me know how you make out.  If you feel the words "Do no harm" are on the tip of your tongue, don't be afraid to use them. 

      ?Stay strong...

      ?Judy

       

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    • Posted

      Thanks Judy. I will let you know how it goes tomorrow. From what I understand (and I am acutally a scientist who delves into human aspects of toxicology and realted impacts quite often) the melatonin should not give you any terrible side effects or interact with what you are taking (from what I know). It is a 'natural' elements of the brain that allows you to sleep, and if you are having trouble sleeping, I suggest trying it. I have no idea where they source it form, which often worries me about bioactive compounds, but I don't think it would hurt. I think the worst thing that would happen is it costs $50/bottle and does't work—annoying and a waste of money, but not harming. 

      Also yes pseudoephedrine replaced regular ephedrine (which comes from the genus Ephedra, a plant that grows in the Himalaya and being a stimulant helps with lack of oxygen at high altitudes (I had tea with it when I was there and was the only one without altitude sickness). It is similar to coca growing in the Andes, nature maybe put them there for a reason...

      However, people started making crystal meth (meth amphetaines) from ephedrine, which was in decongestants, etc. So, they developed the "pseudo" type which is a reversed spin molecule made in a lab that has the same decongestant effects and the same stimulant effects, but without the increase in heart rate (so safer?). However, they now make meth amphetamines from the 'psuedo' type as well. It is certainly a stimulant, but very useful when climbing mountains at high elevations, and certainly helpful as a decongestant, but not if you already have trouble sleeping.

      Good luck and talk soon : )  Glad the camomile helped, I have always hated the taste myself. 

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    • Posted

      Judy.  I sent my email to yours in the forum.  Presently on vacation in St Martin by myself!  Will email you next week.  I am not one who believes everything I hear, but glad the camomile worked for you too.  So simple, it's hard to believe.

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  • Posted

    Thanks Judy I am also going through some difficulties with my doctor. He is retiring so I am left alone to deal with my prescription dependence. I've been on mine for 20 years. And now I'm told no doctor will give or continue with my prescriptions.

    I'm so scared I've been weening off as much as possible because I know I gotta get off my meds.

    It helps to read these stories. I will try my best to get through this. I to miss my old life.

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    • Posted

      Hi Emma,

      Do you have enough of your script left to wean yourself slowly? I don't recommend cold turkey and I assume no doctor would either (but who knows these days). I am sure if you find a new doctor, even if they won't keep prescribing they will help you wean—I would think they have to. 

      Try not to make the fear of withdrawl get to you before it happens (as I know it can). May I ask what you are taking? My partner has found adavan helped him get off zops a bit...  I know it doesn't make sense to exchange one dependency for another, but if they are temporary it could help(?) 

      I wish you  the best of luck. 

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    • Posted

      Hi Emma...

      Judi (i) gave you some sage advice.  Both Judi and  Cass are in Canada I'm in the US so I can only speak to Drs. here.  Like Judi, I'd like to know what Benzo you're taking.  They have subtle differences but mainly concerned about dosage and as you mentioned length of time (20 years).  If you're in the US there must be a dr. who will work with you tapering.  I say "must" because all drs. are required by law to treat you when you seek help.  How and with what they treat you is another story. I found a GP who is working with me after several specialists messed me up more than helped.  I did my research and homework took months of notes on what I took and how I did or did not progress.  I "roughly" follow the Ashton method.  (You can find it online, if you haven't already).  Print it up and bring it with you to the dr.  Most are unaware of it.  If your dr. approves he/she will give you the diazapam to begin tapering. Showing your willingness to get off this drug will help your cause.  Here's where it will get tricky.  The charts don't factor in the long duration of  time you've taken the Benzo.  Check back with me when/if you get to this point.  I'm here to help. 

      Take care and don't panic....

      Judy

       

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    • Posted

      Emma...

      One other thing.... Perhaps your retiring dr. could not only recommend another doc but pass along your medical history encouraging the new doc to help you through a tapering or to continue to prescribe.  They all take an oath to "Do no harm".  Perhaps a gentle reminder would serve you well.

      Judy

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    • Posted

      Good points for Emma.  It is so worth it, although hard to do, being drug free,   I got fibromyalgia after a car accident.  With that, you gave  to get in your head that you are not having,pain that means cancer ir heart attack or anything else dire,  it is pain, but indicating no harm, if you will.  With drug withdrawal if taken for sleep, doing it slowly is so important but again, you have to get in your head that if you are awake for two hours in the night you will survive,  and when you start to close off what I call my "monkey brain" at night it will improve.  You gave no idea how much clearer your brain is. OMG I was driving with drugs in my system for years.

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    • Posted

      Hi Cass:

      Thanks for the input and compliment.  I'm just trying to help anyone who is going through this hell. I feel I've had enough experience with this I could write a book.

       Suffering myself these last few days.  Self-inflected. Went from 4 mg. on 2/7 and cut several times down to 3.4 on 2/26.  Paying the price.  I've come to realize cutting more slowly at the rate of  1 mg./2 mo. is probably as fast as I can go.  Lots of side effects this time as the diazapam began to wear thin.  Just want off this stuff ASAP but it has its own time frame and I must learn patience.  Like so many of us I want my life back. 

      Strange... all the reasons they took me off (i.e. loss of mental clarity, physical weakness, and other symptoms) are what plague me now and have been, at times severely, for almost 2 yrs.  This amount of time lost at this time in my life, having to suffer and not being able to live as I once did, seems counter productive.  But when people like you say they feel so much better once off, I continue to have positive thoughts as I look toward taking the last 10th of a mg.  That looks like it will take at least another 6 mo. "With drug withdrawal if taken for sleep, doing it slowly is so important".  Amen, Girlfriend!

      Not facing sleeping issues lately, but enough of the other continuing side effects to keep me feeling dreadful much of the time.  I can't imagine anyone having to work while going through this. Seems to me like it would be an impossiblility.

      Thanks for the conversation....

      Judy

       

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    • Posted

      good reply.  I was on sleeping pills for 40 years.  Every. Single. Night.  Now off, but my doctor who was great says 2 years or possibly more to consider your brain clear.  It had to make GABA again etc.  Also, I am getting older, and sleep is often harder for seniors.  But all worth it!
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