protracted withdrawal

[Guest [Po...]]

Thank you Hope

 

Yes, Challis, but it was that or death by asphyxiation!  They are two heavy velvet lined floor to ceiling HUGE curtains.

 

Of course I hold out hope Skyy, and I have just spoken to a well known benzo expert who tells me they have been in contact with 2 people who recovered after 18 years off benzos!  (They also said that it can take at least a YEAR for benzo sx to appear after a cold turkey).  I just wish people would learn from my mistakes............

 

Polenta

[[Ja...]]

Hi Polenta,

 

What do you mean by "They also said that it can take at least a YEAR for benzo sx to appear after a cold turkey"?

[Guest [Po...]]

Well I mean that nothing happens for a long time in the way of symptoms and then it starts, and people don't realise that it is benzo wd.  Terrible!  I have heard of people not experiencing any wd sx for a few months after a CT, but I did not realise that it could still happen after a year. It must be very unusual.

 

Polenta

[[Ti...]]

What sx do you have this far out Polenta? What has left?  I think I asked you another time and you said you are continuing to improve, which is great.  How has your quality of life been?  Do you have kids--this is so tough with children...

[[Cr...]]

Polenta, I know that new symptoms can appear as far as a year out, but I don't think these benzo experts implied that some people were symptom free for a year and then all the sudden got hit with their first symptoms.

 

I know in the case of nerve pain, there are some members on this board who didn't get hit with it until close to the year mark, but that doesn't mean they were symptom free up until then.  Until we are fully recovered new symptoms may come and go during the whole recovery process.

 

As for actual delayed onset of c/t withdrawal symptoms, the latest that I have observed was with our fellow member called believe, who didn't really experience any major symptoms until 6 weeks post detox.  I do not believe that someone could go 1 year after a cold turkey before the symptoms start.

 

[Guest [Po...]]

No neither did I, but that is what I was told.  Anyone can email this person.  Just google Bristol and tranquillisers and look at the website contact details.  I am sorry to post this info, but is it not better to know?  Please edit it out if you prefer.

 

Polenta

[[Ho...]]

Sorry Polenta. I didn't realize this was your original introduction post. I've had to move it back to the introduction board. All our members need to have an introduction thread on the intro board.

 

You could post on the C/T board.

 

Sorry for the confusion. 

 

 

[[Cr...]]

Polenta, I think there is some truth to what those experts are saying.  Benzo withdrawal shares many similarities to alcohol withdrawal (as well as other substances).  Many times, withdrawal from these substances leaves the CNS in quite a sensitive state.  People with Post-acute-withdrawal-syndrome (PAWS) can sometimes function normally and appear to be fine, but when they are confronted with stress their symptoms may come out of no where and strike like a blow.  It is often stated that 6 - 24 months is the time needed to reverse such sensitization.

 

My guess is that some people may have cold turkey'd and had it relatively easy.  This is not uncommon, as there are many of us on this forum who have had prior cold turkeys to benzos and came out seemingly unscathed.  However, for some people, they may have ended up with a sensitized nervous system and not have realized it.  For a whole year, they may have been relatively stress free but then ran into a situation that induced a lot of stress and that could have been the "trigger" that upset their fragile nervous system.  Ashton does speak of stress triggers for withdrawal. It is my guess that these are the types of people those aforementioned experts may have been referencing.

 

I don't believe this is a case of a 1 year delay for the onset of withdrawal after a cold turkey, but 1 year until these people hit certain triggers (stress/diet) that 'exposed' their weakened cns.

[Guest [Po...]]

Hope, that's ok, thanks for explaining.

 

Crono, you may be right, I think it is wise to be aware of it before doing a voluntary CT (if there is such a thing)

 

Polenta

[Guest [Po...]]

What sx do you have this far out Polenta? What has left?  I think I asked you another time and you said you are continuing to improve, which is great.  How has your quality of life been?  Do you have kids--this is so tough with children...

 

Do you mind re reading post 21 to Flip, I can't stand writing it again. 

 

No,  I don't have any kids.

 

Polenta

 

Edit: Personal information removed at member's request

[[Ti...]]

I am so sorry about that Polenta--I feel badly that I brought up a topic that is difficult for you to discuss.  It sounds like most of your physical sx have dissipated but the cognitive problems are still bothersome...So glad your pain has lifted and that at least physically you are feeling better!

[Guest [Po...]]

Thanks Tina

 

I should have mentioned that I also still have IBS, jerks,  extreme sensitivity to sound, light, smell, touch, and I expect I have left a few more things out

 

Polenta

[Guest [...]]

Polenta,

 

This might sound like a stupid question, but I am wondering what would happen if you started up taking some benzo of your choice now. Would it alleviate your symptoms.

 

I'm just in shock to discover someone could still be suffering this long after stopping the drugs.

 

Xana

[Guest [Po...]]

Benzodiazepine Side Effects

 

 

So-called "Paradoxical" Effects

 

According to Professor Malcolm Lader, 5% of those using benzodiazepines may be affected by so-called "paradoxical" reactions in response to the drugs rather than the desired tranquillising effects. Such reactions include increased aggressiveness (in some individuals even violent behaviour), depression (with or without suicidal thoughts or intentions), and sometimes personality changes. In some instances, reactions such as hallucinations, depersonalisation, derealisation and other psychiatric symptoms occur.

 

Ativan (lorazepam) and Halcion (triazolam) in particular may produce dissociation and other psychiatric symptoms.

 

"Paradoxical" side effects occur in all age groups but are more likely to be found in children and in the elderly where they may be fairly frequent yet erroneously diagnosed as various psychiatric disorders. The risk of such reactions is generally greater with short-acting compounds but may occur with all benzodiazepine drugs. It is important to remember that the "paradoxical" reactions can also be encountered in short-term use and, in rare cases, even following the first ingestion of the drug.

 

Long-term Side Effects

 

All the psychological changes mentioned above may occur as long-term side effects when the use (or abuse) has become chronic i.e. has been going on for many months or even years. The frequency of such side effects is significantly higher than the frequency of "paradoxical" side effects. The long-term effects include depression, querulousness or aggression, and subtle personality changes. Further, fatigue, passivity and symptoms of memory and cognitive impairment may ensue.

 

Tolerance with inter-dose withdrawal exists when the originally prescribed dosage no longer produces the original effect, and the patient experiences drug withdrawal although he/she is still taking the preparation. This may lead to an increase of dosage, or more often, result in long-term use. Over time, the above-mentioned long-term side effects may develop. The risk of this course of events is greater with compounds with short half-lives such as Ativan (lorazepam), Halcion (triazolam), Xanax (alprazolam), Rohypnol (flunitrazepam) and even Serax/Serenid (oxazepam). In addition to the symptomatology described under "Paradoxical Effects", phobias, OCD, and various neurological symptoms such as tinnitus may occur as long-term side effects.

 

Psychomotor Side Effects

 

Benzodiazepines may cause psychomotor impairment, and several studies have shown an increased risk of road accidents in drivers under the influence of benzodiazepine drugs. The risk of other accidents, for example in industrial workshops, may be increased as well. The elderly are particularly vulnerable to these psychomotor effects and may also develop dysarthria and ataxia. The risk of falls and fractures is pronounced in this population when tranquillisers are used on a regular basis.

 

Cognitive Side Effects

 

Memory functioning is markedly and measurably impaired, especially the ability to store acquired knowledge into long-term memory. This memory impairment is highly relevant to students. The risk of acute amnesia is more pronounced with short-acting drugs. Ativan (lorazepam), Halcion (triazolam), Xanax (alprazolam) and Rohypnol (flunitrazepam) are especially likely to induce such memory impairment.

 

[[Fl...]]

Thanks Polenta - I'd actually been looking for this piece and couldn't find it. The next time you get a good space and feel like it, would you mind giving me the source. I want to take this to my Pdoc. She is actually interested. I don't see her until the 24th.

 

Polenta, I'm very sorry if this discussion has caused a spike in your symptoms. I hope you're having a tolerable day.

Flip

 

[Guest [Po...]]

Hello Flip,  got it off benzo.org.  You are lucky to find a doc interested in it!!!

 

Sorry Xana, its not a stupid question, I am just feeling so dreadful today. 

 

When I had been off benzos for a year and a half and was only getting at the most an hour's sleep a night and still having periods of 14 days with absolutely no sleep, I was persuaded to try Temazepam for a week, it made no difference at all to my sleep and probably added another year or two to my recovery.  Since then I have become sensitive to any and all chemicals, any meds apart from a tiny percentage of antibiotics make me so sick now.  I could not tolerate any of the pain meds, including diamorphine,  that I was given when I had a hysterectomy a few years ago, and had to get through the pain by simply holding myself and rocking, even that was a walk in the park compared to withdrawals!

 

Polenta

[Guest [...]]

Hey Polenta, your extra post above must have slipped in while I was writing this one.

 

Didn't read it until after I'd posted. Sorry you are feeling so dreadful. I am very sad to read that extra sadness in your life. I had to have a hysterectomy for cancer 4 1/2 years ago, which was emotionally dreadful as well as the physical bit. However I already had 4 children and 2 grandchildren, which definitely made it easier but not as easy as some people seemed to think it should have been. I also took over a year and visiting 3 gynaecologists to get the diagnosis, after 2 hysteroscopies! So glad my GP encouraged me to get a third opinion. Might not have been here to tell the tale.

 

So sorry that you have gone through this. Wish I could comfort you in person.

Polenta, Flip,

 

I wasn't asking for any other reason than clarification in my own mind. I wasn't seeking academic proof. I certainly wasn't wanting to upset anyone. It's just the 28 (?) year protracted withdrawal time scared the crap out of me.

 

Coincidentally I was doing some googling of Xanax myself yesterday re long term use. I found I had to sift through the strictly researched articles and the quasi medical ones. It is interesting to see the vast range of medical opinions.

 

I am wondering why an XR version of Xanax is available (but not in Australia) if it is only good for short term use.

 

Many of us are not cognitively impaired by long term use. I asked my GP (who has seen me through the journey) if he thought I would have been able to complete the extra year of study to upgrade to degree status as a teacher ( bar was raised after I completed training) had I been cognitively impaired. He said definitely not. I could not have done it with the hard core anxiety that's for sure. I have difficulty writing a post on here when in that state.

 

I am at a turning point and am just gathering information. To be honest, I think reading stuff on forums for the last 7 months has been a really bad decision for me.

 

Polenta, I just wanted to know how you felt about it and whether taking some medication would help you now. I wasn't meaning for you to have to justify your decisions.

 

Sorry if that is what it felt like.

 

Xana

[Guest [Po...]]

Thanks for your good wishes Xana, I have to say, I was not "justifying" my decision, simply trying to point out in a polite way, the errors of your thinking, it does not seem to have registered!  Ah well, I did my best.

 

best wishes

 

Polenta

[Guest [Po...]]

If anyone knows of anyone who has suffered from protracted withdrawal for 20 years and gone on to recover I would be so happy to hear of them.  It is very difficult to stay hopeful sometimes.  I have a friend who was on Lorazepam (Ativan) for 10 years and recovered after 15 years of protracted withdrawal and Una Corbett has told me of at least 2 people who suddenly recovered after 19 years of being in withdrawal, and I have heard of one other person who suddenly recovered after 25 years of protracted withdrawal, but we are such rare cases it seems, that nobody can give us much encouragement, and I need it as much as anyone else in this horrendous process. Heather Ashton told me never to give up hope, but that is sometimes difficult. I am so tired of it.

Polenta

[[Fl...]]

Hi Polenta,

 

I'm sorry, I don't know of anyone protracted who has recovered. I wish I did. I know "sorry" doesn't hold much weight for you, but I am sorry you have to suffer like this. It just tears at my heart and or course it strikes fear in me, as well.

 

I've been reading about a couple of brain therapies. You are probably already in the know, but I'll mention them anyway.

 

TMS - transcranial magnetic stimulation. Much like the magnetic pulses of an MRI. Done in a clinic. For people who suffer major depressive disorder and who have not been helped by drugs.

 

Fisher Wallace device that uses electrical stimulation to stimulate neurons. This is an at home device and in the States, requires a doctors prescription. 75 - 80 % success rate with migraines, anxiety, depression, chronic pain, insomnia. Harvard, Mass General and others continue to report positive results. 

 

Both these modalities look promising and it seems the worst that can happen is nothing at all. I am checking into both.

 

Somewhere, somehow, there just must be help for people like you who suffer so much and so long. I feel so sad for you, Polenta. Maybe these things could help?  I will pass along anything I learn whether good or bad.

Flip

 

http://www.elata.org/tms-faq.shtml#_How_does_TMS

[Guest [Po...]]

Thanks for replying Flip, I have tried so many things and spent so much money on various therapies over the years, all to no avail, many have actually made things worse, so I think I have given up on that.  I hope you find something that really helps, and if you do, let me know please.

 

Don't let my history strike fear into you, you are in a completely different position.  I had never even heard of withdrawal symptoms and believed the GP's when they told me I was "mad" every time I cold turkeyed.  I just didn't want to be on drugs and although I felt like ---- , I never linked it with the drugs, which is why I kept going back on them.  Apart from the fact that I ended up in mental hospitals at least 3 times (after yet another cold turkey off 11 mg Ativan plus a selection of other AD,s Anti pshychotics etc) and was never allowed to leave unless I promised to take even higher doses of Ativan etc.  My final ct happened when I read about the side effects of benzos (still no mention of wd sx), and that seemed like a miracle to me, that the fact that I was living as a recluse, was ill the whole time could all be cased by the medication, I could not stop soon enough.  I definitely had seizures but I just had to carry on, until at 18 months off I just had to go back to a GP because I was bedridden and had not had more than half an hour's sleep a night ever since my ct.  You can imagine how hard it was to go on the AD that I was then prescribed, but I was told that I would not be treated unless I complied with their advice and I literally thought I was likely to die.  I am just telling you this so you can see how different we are. Plus I was very young when I started on benzos, only 22 ish, so my brain didn't have much of a chance. 

 

Anyway, enough of this, you are doing everything properly this time, yours is a different story.

 

Love

 

Polenta xxx

[Guest [Po...]]

Thanks for your good wishes Xana, I have to say, I was not "justifying" my decision, simply trying to point out in a polite way, the errors of your thinking, it does not seem to have registered!  Ah well, I did my best.

 

best wishes

 

Polenta

 

Sorry Xana, I can't believe this post of mine, so superior and patronising.  I am going to say the same thing on your thread, put it down to how bad I was feeling then please.

 

very best

 

Polenta

[[Fl...]]

Hey Polenta,

 

Thanks for the video. Yes, I do enjoy things like that when people are able to open the drapes of public persona and just celebrate.

 

Here is a video that Skyy had in her signature for a while. This one moved me to tears the first time I saw it. The beauty of connection, no matter how temporary.

 

 

 

I am micro tapering! The end of the ride has not been pleasant. Some people have a better time of it. I honestly can't tell if it's a lower benzo dose or something else going on. I have my first ever rheumotologist appointment today. The tendons in my fingers are going haywire, causing my fingers to bend and hurt. This is one I hope dearly is "just" benzo withdrawal. Also the lymph node. I pray it's benzo withdrawal.

 

I dearly wish Lulu would join, too. Email is great but I do miss her in a group dynamic. She always knows just the funniest things to say at just the right second.

 

Margaretisabel tried the Fisher Wallace device and was not pleased with it. I'll keep watching her posts and update you if it takes a good turn for her. 

 

Are you feeling the tiniest bit better, Polenta? I dearly hope so.

Love,

Flip

[[Fl...]]

QUOTE: Hey Polenta,

 

Thanks for the video. Yes, I do enjoy things like that when people are able to open the drapes of public persona and just celebrate.

 

Here is a video that Skyy had in her signature for a while. This one moved me to tears the first time I saw it

 

.YES, ME TOO

The beauty of connection, no matter how temporary.

 

 

 

I am micro tapering! The end of the ride has not been pleasant. Some people have a better time of it. I honestly can't tell if it's a lower benzo dose or something else going on.SOMEONE (I CAN'T REMEMBER WHO) ONCE TOLD ME THAT THE WD EFFECTS INCREASE EXPONENTIALLY AS THE DOSE GETS LOWER I have my first ever rheumotologist appointment today. The tendons in my fingers are going haywire, causing my fingers to bend and hurt. This is one I hope dearly is "just" benzo withdrawal. Also the lymph node. I pray it's benzo withdrawal. I COULDN'T TURN MY HEAD TO THE LEFT FOR 3 YEARS AFTER MY LAST CT, AND ALL MY LIMBS FELT AS IF THEY WERE BEING PULLED TO TWICE THEIR NORMAL LENGTH, IT WAS AGONY, IF I HAD REALISED HOW LONG IT WAS GOING TO GO ON (BECAUSE OF MY CT, IT WONT HAPPEN TO YOU) I WOULD HAVE REINSTATED, BUT I KNEW NOTHING THEN AND NEITHER DID ANYONE ELSE (APART FROM THE DRUG COMPANIES) SO I WOULD THINK YOU CAN  HOPEFULLY PUT IT DOWN TO WD.

 

I dearly wish Lulu would join, too. Email is great but I do miss her in a group dynamic. She always knows just the funniest things to say at just the right second.  I KNOW, WE MUST KEEP WORKING ON HER

 

Margaretisabel tried the Fisher Wallace device and was not pleased with it. I'll keep watching her posts and update you if it takes a good turn for her. 

 

Are you feeling the tiniest bit better, Polenta? I dearly hope so.

Love,

Flip

 

Please excuse the caps, just wanted to be clear.  I am feeling a whole lot better, really good for the last few days, it iw strange how my perception of eveyrthing, including how everything looks is so different.

 

I hope your medical issues will be sorted out for you soon, but it is so difficult with such widespread ignorance about benzo withdrawal symptoms, if there is uncontrovertible evidence that it is something else, only then would I take any meds, but that is me.

 

Sending you good vibes

 

Polenta xxx

 

Hey Polenta!

 

I am feeling a whole lot better, really good for the last few days, it is strange how my perception of everything, including how everything looks is so different.

 

This statement makes me so happy!  I've never heard you say this, ever in our many months of knowing one another. This is jump up and down amazing, my friend!

 

Is this still the case? I've had very brief episodes of a perceptual shift where things looked very doable and even easy and I had a sense of well being in my body.  That has to be a positive sign.

 

My swollen lymph node was not a lymph node at all, just tissue, which has confounded the doctors. It seems they are now wanted to call it a lipoma, even though when I suggested that might be what it was, they scoffed (two of them).

 

I'm having an RA factor run tomorrow. That and a sed rate. I'm so hoping both come back normal and I can just get on with the thought process that everything is benzos. My hands are just pitiful. Buttons are difficult. So is typing. That's one reason I'm so slow in getting back to you.

 

I really appreciate your feedback to me. You know. I always listen when you talk because you have been on one of the hardest roads I've ever seen. I just can't say how delighted I am that you had/are having slices of reprieve. It must be so sweet for you after such struggle.

 

I hope it keeps up for you and that you can take little snapshots of the good to hold in your mind during the bad times.

 

Love and hugs,

Flip