The Long Hold Support Group

[[ga...]]

I'm no Dr but I did read somewhere (here) about someone having this and it turned out to be low magnesium?? Just a thought - but we all should make sure that our electrolytes are within range

 

Probably doesn't help but I thought I would throw it out there just in case.......

 

Thanks, Life. Maybe I will try the magnesium foot soaking today. I have some epsom salts. I can't up my oral magnesium (complicated to explain).

This is so scary because it is exactly what happened to me when I had a toxic reaction to one Prozac pill about 25 years ago. Started with mild AM twitching and it got worse and worse even after I stopped the Prozac and drove me to being suicidal because it got so bad I couldn't even sleep. It was 6 months before I saw improvement after I was off the drug, which I only took for a few days. So every little twitch reminds me of that nightmare. I'm twitching as I type  this. :'(

[[fi...]]

I'm no Dr but I did read somewhere (here) about someone having this and it turned out to be low magnesium?? Just a thought - but we all should make sure that our electrolytes are within range

 

Probably doesn't help but I thought I would throw it out there just in case.......

 

Thanks, Life. Maybe I will try the magnesium foot soaking today. I have some epsom salts. I can't up my oral magnesium (complicated to explain).

This is so scary because it is exactly what happened to me when I had a toxic reaction to one Prozac pill about 25 years ago. Started with mild AM twitching and it got worse and worse even after I stopped the Prozac and drove me to being suicidal because it got so bad I couldn't even sleep. It was 6 months before I saw improvement after I was off the drug, which I only took for a few days. So every little twitch reminds me of that nightmare. I'm twitching as I type  this. :'(

 

I sincerely hope you feel better - I will keep you in my thoughts today.......(((HUGS)))

[[Va...]]

Anybody on here have body twitches? I had them rarely and very few during this whole taper, but this morning I woke up twitching all over and it won't stop. I have partially tapered my Q. Now I have dissolved my L. That's all. And suddenly this horrible new symptom. I don't know what to think. I was going to start my taper on Sunday, but now what? The twitching is awful and everywhere. How do I decide if this is drug toxicity and I need to get lower or if this is from my Q taper or if this is from dissolving my L? This is very scary. I'm afraid to tell my doctor because I think she will just jerk me off the meds.

 

BTW. I found an old thread of people talking about this as post-taper symptom, but I am not post taper. I am holding.

 

Gard

I have them all over my body gard. I did before I even started to taper. I just ignore them but they are annoying (especially in the legs).  --V

[[so...]]

Hi guys, I'm coming to hang out with you. I've been tapering since last February, and it's been a really tough road. I'm becoming more exhausted and discouraged, and noticing more symptoms as I reduce. Most prevalent are spacy floaty head, headaches, cognitive/thinking issues, insomnia, "toxic" gross mornings, overall feeling of illness/malaise, tinnitus, muscle burning/tension in neck, shoulders and back, nausea, surges of anxiety (mostly manageable), and mild tooth zaps. Also some apathy and depression, but that could be due to my medical situation too.

 

In June 2015 I was diagnosed with advanced ovarian cancer. I underwent two surgeries and six months of chemo. They put me on Ativan at that time (great anger about this, yes). I have been in remission for a year, but the overall prognosis for long term survival is not great. The reason for my cancer is a genetic condition called Lynch Syndrome, and so my chances of recurrence is quite significant. I have spent this precious year of remission tapering and trying to get off this horrible drug. I have been miserable all the way, and have begun to question whether I should continue to do this to myself. The cancer could return at any time. I wonder if I should either do a long hold, or even stop tapering altogether. I think there are not very many buddies in my situation. If I had 30 years left to live, I would of course continue to taper. But with maybe just 1-3 years left, I need to think of other options so that I can start to enjoy life again.

 

So I met with my addiction doctor yesterday, and he is willing to permit me to remain on the valium, if I choose. He is letting me guide this, because of the cancer situation. We agree that my quality of life is the most important thing, not getting off the poison. I may not have years to taper and heal, so perhaps it would be best to stop tapering and try to stabilize and just stay on the V, if it doesn't turn on me. Of course there is no guarantee that it won't.

 

If I get concerned about the Valium I could decide to keep tapering. Do a long hold and then really slowly creep downward with lots of holds, in hopes of keeping symptoms tolerable. I'm very grateful that my doctor isn't trying to rush me off the drug, but is letting me control this. He says that he usually controls his patient's tapers, but I'm a special case. 

 

So for now, I will sit tight at 2.8 mg V and see how I feel. I hope to stabilize and start to feel better. I want so badly to feel well enough to enjoy things again, like going shopping with my daughter or out to a movie with friends. I almost always decline invitations because I feel so crummy. I also work full time, and I hope to regain some function on the job. My intellect and cognitive function are not good for my demanding position running a research lab.

 

My question for you guys: those of you who have done long holds - were you pleased? Felt better and more functional, were able to enjoy activities? Did you ever run into a situation where a long hold was good for a while, then went wonky on you? That is what I fear the most - that the drug will turn on me during a long/permanent hold and I get into tolerance. It's a gamble, I know.

 

I will hang out and report on my long (or perhaps permanent) hold, for the good of other buddies who like to track how folks are doing with their various choices.

 

Thanks for reading my "hello" to you all, and welcoming me to the Long Hold group. 

 

~SS

[[ga...]]

Anybody on here have body twitches? I had them rarely and very few during this whole taper, but this morning I woke up twitching all over and it won't stop. I have partially tapered my Q. Now I have dissolved my L. That's all. And suddenly this horrible new symptom. I don't know what to think. I was going to start my taper on Sunday, but now what? The twitching is awful and everywhere. How do I decide if this is drug toxicity and I need to get lower or if this is from my Q taper or if this is from dissolving my L? This is very scary. I'm afraid to tell my doctor because I think she will just jerk me off the meds.

 

BTW. I found an old thread of people talking about this as post-taper symptom, but I am not post taper. I am holding.

 

Gard

I have them all over my body gard. I did before I even started to taper. I just ignore them but they are annoying (especially in the legs).  --V

 

V, Mine are in my face, legs, hands, everywhere. Face seems the worst. The more still I am, the worse they become. and they are very frequent. Are yours like that? The face is especially disturbing.

 

Also wondering if this means I should not start my taper? I'm upset about not re-starting my taper on Sunday.

 

When this twitching happened before, it was the drug itself that caused it, not tapering. I am worried this is the same kind of toxic reaction to the med itself.

 

Also, the neuropathy keeps coming and going. I can't decide whether to hold or taper. It seems I was getting better during my hold. The twitches were there but only occasional. The neuropathy was lessening. The anxiety was lessening. Then I did my itty bitty partial Q taper. Then I dissolved 3 L capsules. I can't believe I'm actually worse than I was before the hold from such a small thing. That's why I'm wondering if this is toxicity rather than tapering.

 

And how do you sleep with all that twitching???

 

Gard

[[ga...]]

Solitude, I'm so sorry about what you are going through. I did improve during my hold but it was waves and windows all the way. Gradually I noticed more windows. I think it was about 4 months into the hold that I noticed I was getting more windows. I still have waves and windows, but overall my quality of life is better.

 

During my hold, I worked on improving other areas of my life, and that helped. I think quality of life is very important. It seems worth it to try a hold and see if it improves your quality of life. From what I've read, in most cases it does.

 

I am sitting on the fence right now as to whether to start up my taper again or not. If I do, it will be a daily micro-taper again. And probably slower and with holds. Librium is a long half-life drug (just like Valium), so I think slow and short holds will help me make sure I don't get ahead of myself again.

 

Hugs,

Gard

[[Va...]]

Hi guys, I'm coming to hang out with you. I've been tapering since last February, and it's been a really tough road. I'm becoming more exhausted and discouraged, and noticing more symptoms as I reduce. Most prevalent are spacy floaty head, headaches, cognitive/thinking issues, insomnia, "toxic" gross mornings, overall feeling of illness/malaise, tinnitus, muscle burning/tension in neck, shoulders and back, nausea, surges of anxiety (mostly manageable), and mild tooth zaps. Also some apathy and depression, but that could be due to my medical situation too.

 

In June 2015 I was diagnosed with advanced ovarian cancer. I underwent two surgeries and six months of chemo. They put me on Ativan at that time (great anger about this, yes). I have been in remission for a year, but the overall prognosis for long term survival is not great. The reason for my cancer is a genetic condition called Lynch Syndrome, and so my chances of recurrence is quite significant. I have spent this precious year of remission tapering and trying to get off this horrible drug. I have been miserable all the way, and have begun to question whether I should continue to do this to myself. The cancer could return at any time. I wonder if I should either do a long hold, or even stop tapering altogether. I think there are not very many buddies in my situation. If I had 30 years left to live, I would of course continue to taper. But with maybe just 1-3 years left, I need to think of other options so that I can start to enjoy life again.

 

So I met with my addiction doctor yesterday, and he is willing to permit me to remain on the valium, if I choose. He is letting me guide this, because of the cancer situation. We agree that my quality of life is the most important thing, not getting off the poison. I may not have years to taper and heal, so perhaps it would be best to stop tapering and try to stabilize and just stay on the V, if it doesn't turn on me. Of course there is no guarantee that it won't.

 

If I get concerned about the Valium I could decide to keep tapering. Do a long hold and then really slowly creep downward with lots of holds, in hopes of keeping symptoms tolerable. I'm very grateful that my doctor isn't trying to rush me off the drug, but is letting me control this. He says that he usually controls his patient's tapers, but I'm a special case. 

 

So for now, I will sit tight at 2.8 mg V and see how I feel. I hope to stabilize and start to feel better. I want so badly to feel well enough to enjoy things again, like going shopping with my daughter or out to a movie with friends. I almost always decline invitations because I feel so crummy. I also work full time, and I hope to regain some function on the job. My intellect and cognitive function are not good for my demanding position running a research lab.

 

My question for you guys: those of you who have done long holds - were you pleased? Felt better and more functional, were able to enjoy activities? Did you ever run into a situation where a long hold was good for a while, then went wonky on you? That is what I fear the most - that the drug will turn on me during a long/permanent hold and I get into tolerance. It's a gamble, I know.

 

I will hang out and report on my long (or perhaps permanent) hold, for the good of other buddies who like to track how folks are doing with their various choices.

 

Thanks for reading my "hello" to you all, and welcoming me to the Long Hold group. 

 

~SS

Welcome SS! I'm so sorry you're in this position. I can speak to how a long hold benefited me. I began my taper cutting very rapidly but did stabilize after each cut. The third cut was a little rough so I waited for 3 weeks, felt good and did a smaller cut. It was that small cut that sent me over the edge. I expected sxs to start improving but they continued to intensify until I had a window at 6 weeks. It was horrible. From that point, sxs stayed pretty bad and cycled through for around 4 months and there were times I felt that I was getting worse (because of different sxs taking the place of previous sxs). I had mental and physical sxs this entire time. At 4 months I noticed I was very gradually and I emphasise the word "gradually" (as the stabilisation process is so slow it's almost imperceptible) starting to feel better. At 4 1/2 months I was hit with crushing depression and wondered if I would ever stabilize. I had made a pact with myself at the three month mark to keep holding for six so I continued to hold until the six month mark. At six months I felt much better and was able to continue tapering very slowly and haven't had any major issues so far. Although sxs are still present, I live my life and they are just in the background. I have noticed that as I taper, my mind is becoming clearer, I have more energy and depression is lifting.

 

Now, concerning your position about getting off vs staying on.  I think it's something you have to decide. I don't think getting off is really a cake walk for most so there will be symptoms but if you do it right they should be manageable.

 

There are those who stay on for life and seem to do OK so it very well may be an option for you. Here's an interesting fact. When  I told my doctor I was going to taper off V and asked for his help, he stated he didn't know anything about helping people off as I was the first patient he's had who ever wanted to get off of them. This was shocking to me as he prescribes a lot of benzos to older patients with chronic pain issues. So I believe that there are a lot of people out there who choose to stay on for life and never decide to come off and may do just fine.

 

It's a hard call, but if you truly want to get off, I believe you can do it and keep sxs manageable so you can live your life. My only concern about staying on is the same as you have. There was a reason we decided to get off these nasty drugs. Unfortunately for so many of us, we didn't recognize the symptoms of tolerance and spent thousands on tests to find out what the heck was wrong with us before realising what had happened. 

 

It's up to you what to do, but I'm sure whatever you decide will be the right choice. Keep us posted on your hold (expect a bumpy road as stabilising is anything but linear but well worth it in my case). We're so glad to have you here and will do our best to support you through this!  --V

 

 

[[ca...]]

Gardner, I get full body twitches had them even before I started tapering I had 2 EMG `S I was diagnosed with Benign fasciculation syndrome here is a article on it and yes it`s  annoying but won`t kill me so they say lol ! Hope everyone is doing decent this is a long rough road ~CD      BFS ~ http://www.healthhype.com/benign-fasciculation-syndrome-bfs-constant-muscle-twitching.html

[[Va...]]

Anybody on here have body twitches? I had them rarely and very few during this whole taper, but this morning I woke up twitching all over and it won't stop. I have partially tapered my Q. Now I have dissolved my L. That's all. And suddenly this horrible new symptom. I don't know what to think. I was going to start my taper on Sunday, but now what? The twitching is awful and everywhere. How do I decide if this is drug toxicity and I need to get lower or if this is from my Q taper or if this is from dissolving my L? This is very scary. I'm afraid to tell my doctor because I think she will just jerk me off the meds.

 

BTW. I found an old thread of people talking about this as post-taper symptom, but I am not post taper. I am holding.

 

Gard

I have them all over my body gard. I did before I even started to taper. I just ignore them but they are annoying (especially in the legs).  --V

 

V, Mine are in my face, legs, hands, everywhere. Face seems the worst. The more still I am, the worse they become. and they are very frequent. Are yours like that? The face is especially disturbing.

 

Also wondering if this means I should not start my taper? I'm upset about not re-starting my taper on Sunday.

 

When this twitching happened before, it was the drug itself that caused it, not tapering. I am worried this is the same kind of toxic reaction to the med itself.

 

Also, the neuropathy keeps coming and going. I can't decide whether to hold or taper. It seems I was getting better during my hold. The twitches were there but only occasional. The neuropathy was lessening. The anxiety was lessening. Then I did my itty bitty partial Q taper. Then I dissolved 3 L capsules. I can't believe I'm actually worse than I was before the hold from such a small thing. That's why I'm wondering if this is toxicity rather than tapering.

 

And how do you sleep with all that twitching???

 

Gard

That's interesting gard. The twitching is worse for me at night  when I'm laying down. I do have twitching in my jaw and mouth and pretty much every other area sporadically. My legs look like bugs are crawling under the skin. It's actually pretty cool. I make my wife and kids watch for entertainment. It's something that I just choose to ignore as focusing on it doesn't make it any better lol. I would tend to think it's more withdrawal related than toxicity. From what I understand toxicity is very rare. I think it's very common in withdrawal and other than being annoying, it is pretty harmless.  --V

[[ga...]]

Gardner, I get full body twitches had them even before I started tapering I had 2 EMG `S I was diagnosed with Benign fasciculation syndrome here is a article on it and yes it`s  annoying but won`t kill me so they say lol ! Hope everyone is doing decent this is a long rough road ~CD      BFS ~ http://www.healthhype.com/benign-fasciculation-syndrome-bfs-constant-muscle-twitching.html

 

Thanks, Can.

Sorry you're going through this, too.

[[ga...]]

Anybody on here have body twitches? I had them rarely and very few during this whole taper, but this morning I woke up twitching all over and it won't stop. I have partially tapered my Q. Now I have dissolved my L. That's all. And suddenly this horrible new symptom. I don't know what to think. I was going to start my taper on Sunday, but now what? The twitching is awful and everywhere. How do I decide if this is drug toxicity and I need to get lower or if this is from my Q taper or if this is from dissolving my L? This is very scary. I'm afraid to tell my doctor because I think she will just jerk me off the meds.

 

BTW. I found an old thread of people talking about this as post-taper symptom, but I am not post taper. I am holding.

 

Gard

I have them all over my body gard. I did before I even started to taper. I just ignore them but they are annoying (especially in the legs).  --V

 

V, Mine are in my face, legs, hands, everywhere. Face seems the worst. The more still I am, the worse they become. and they are very frequent. Are yours like that? The face is especially disturbing.

 

Also wondering if this means I should not start my taper? I'm upset about not re-starting my taper on Sunday.

 

When this twitching happened before, it was the drug itself that caused it, not tapering. I am worried this is the same kind of toxic reaction to the med itself.

 

Also, the neuropathy keeps coming and going. I can't decide whether to hold or taper. It seems I was getting better during my hold. The twitches were there but only occasional. The neuropathy was lessening. The anxiety was lessening. Then I did my itty bitty partial Q taper. Then I dissolved 3 L capsules. I can't believe I'm actually worse than I was before the hold from such a small thing. That's why I'm wondering if this is toxicity rather than tapering.

 

And how do you sleep with all that twitching???

 

Gard

That's interesting gard. The twitching is worse for me at night  when I'm laying down. I do have twitching in my jaw and mouth and pretty much every other area sporadically. My legs look like bugs are crawling under the skin. It's actually pretty cool. I make my wife and kids watch for entertainment. It's something that I just choose to ignore as focusing on it doesn't make it any better lol. I would tend to think it's more withdrawal related than toxicity. From what I understand toxicity is very rare. I think it's very common in withdrawal and other than being annoying, it is pretty harmless.  --V

 

Yeah, I want to believe it's withdrawal. My past experience with severe toxicity and the twitching becoming so bad it was disabling is making me scared.

 

Do you let the amount of twitching affect your decisions about tapering? I am thinking I am never going to have symptom remission to the point that I can have a regular life no matter how long I hold or how slowly I taper. Maybe I should just say I can tolerate this amount of symptoms (neuropathy, agoraphobia, twitching) and start up the taper.

 

Gard

 

[[ca...]]

Gardner, I get full body twitches had them even before I started tapering I had 2 EMG `S I was diagnosed with Benign fasciculation syndrome here is a article on it and yes it`s  annoying but won`t kill me so they say lol ! Hope everyone is doing decent this is a long rough road ~CD      BFS ~ http://www.healthhype.com/benign-fasciculation-syndrome-bfs-constant-muscle-twitching.html

 

Thanks, Can.

Sorry you're going through this, too.

Gardner, your very much welcome @ Valley yes it will get worse at night It`s a form of (Motor Neuron) dysfunction did the benzo`s cause it hell if I know ?

[[ga...]]

Making a separate post because this is a separate thought that came to me last night. Do you think that adding the alcohol I need to dissolve the L could cause the uptick in symptoms? I take 3ml 3 times/day. Other than that, I cannot remember the last time I had any kind of alcohol. Maybe it was half glass of wine at somebody's house nearly 10 years ago. Alcohol makes me really sleepy, so I don't generally have a drink even if everybody else is.

 

Gard

[[ga...]]

Can, I had this kind of fasciculation many, many years ago, before I took any meds. It was mild and a nuisance but was not disabling. I had other weird neuro symptoms, too. They would come and go. I was a bit scared, but focused on taking care of my kids and trying to save my marriage. Didn't have good health insurance (ex was self-employed) so couldn't get it checked out. So I just ignored it as best I could. Found out only a few years ago that I have Celiac disease, which probably caused some of the neuro stuff.

 

It wasn't until I had a toxic reaction to Prozac that the muscle jerking went wild. My whole foot, hand, thumb, back, everywhere would visibly jerk. When my back jerked, my whole body would jerk in the bed. I couldn't sleep even with sleeping pills until I was so exhausted the sleep won over the muscle jerks. I actually nearly died from serotonin syndrome from taking Prozac for just 4 days. I didn't know what was happening to me as my whole nervous system went crazy. Hot. Cold. Euphoric. Crashed. Catatonic. I lived, but the muscle jerking went on for nearly a year. Much later a neurologist told me he thought it was the prozac. And years later I found out I lack the enzyme to metabolize prozac. In fact, it is the enzyme that metabolize most toxins, so my body can't get rid of toxins the way other people can. For nearly 6 months, I could not sit still. I could not watch TV or read because my eyes were blinking so much. Each jolt surprised me and gave me jolt of anxiety. It was a living hell. As it slowed down, the anxiety jolts and the physical jolts began to separate out and I realized that the 2 were actually two different reactions to the drug. A year later, it was down to a nuisance that turned up now and then.

 

I have to believe this has something to do with one of meds I'm on. And/or w/d. I wish I knew which. If its the med itself then tapering faster is the answer. If it's w/d, then tapering slower is the answer.

 

I think this would be less scary if not for that previous experience. The facial stuff is especially disturbing.

 

Gard

[[ca...]]

Gard, mine has not changed much but as we speak my shoulder is trying to jump thru its skin and Lord knows what these damn drugs do to our nervous system. I had very bad facial tingling that started in April it was very scary it went on thru most of the summer and I finally went to see a good Neuro Doc and told Him that I had come of Klonopin and was tapering Valium He checked Me over very well and said ~ Quote: Your coming off these drugs and Your body and brain are screaming ! Then He asked Me how My ears were I told Him I had bad Tinitus and He said it`s the Benzo  W/D ! He said there is nothing He could recommend exept go slow off the Valium . First Doctor that ever fully acknowledged the benzo withdrawl in detail to me! Thought I would share this with you and I  have my fingers crossed as the face bit has eased up a lot but of course there are always new s/x`s to take it place right? Be well ~CD

[[ga...]]

Wow, Can, a doctor who acknowledged benzo w/d. I am impressed!

 

Sorry, probably all my talk has your shoulder going. My old neurologist said stress makes these things worse.

 

[[ca...]]

Anybody on here have body twitches? I had them rarely and very few during this whole taper, but this morning I woke up twitching all over and it won't stop. I have partially tapered my Q. Now I have dissolved my L. That's all. And suddenly this horrible new symptom. I don't know what to think. I was going to start my taper on Sunday, but now what? The twitching is awful and everywhere. How do I decide if this is drug toxicity and I need to get lower or if this is from my Q taper or if this is from dissolving my L? This is very scary. I'm afraid to tell my doctor because I think she will just jerk me off the meds.

 

BTW. I found an old thread of people talking about this as post-taper symptom, but I am not post taper. I am holding.

 

Gard

I have them all over my body gard. I did before I even started to taper. I just ignore them but they are annoying (especially in the legs).  --V

 

V, Mine are in my face, legs, hands, everywhere. Face seems the worst. The more still I am, the worse they become. and they are very frequent. Are yours like that? The face is especially disturbing.

 

Also wondering if this means I should not start my taper? I'm upset about not re-starting my taper on Sunday.

 

When this twitching happened before, it was the drug itself that caused it, not tapering. I am worried this is the same kind of toxic reaction to the med itself.

 

Also, the neuropathy keeps coming and going. I can't decide whether to hold or taper. It seems I was getting better during my hold. The twitches were there but only occasional. The neuropathy was lessening. The anxiety was lessening. Then I did my itty bitty partial Q taper. Then I dissolved 3 L capsules. I can't believe I'm actually worse than I was before the hold from such a small thing. That's why I'm wondering if this is toxicity rather than tapering.

 

And how do you sleep with all that twitching???

 

Gard

That's interesting gard. The twitching is worse for me at night  when I'm laying down. I do have twitching in my jaw and mouth and pretty much every other area sporadically. My legs look like bugs are crawling under the skin. It's actually pretty cool. I make my wife and kids watch for entertainment. It's something that I just choose to ignore as focusing on it doesn't make it any better lol. I would tend to think it's more withdrawal related than toxicity. From what I understand toxicity is very rare. I think it's very common in withdrawal and other than being annoying, it is pretty harmless.  --V

 

Yeah, I want to believe it's withdrawal. My past experience with severe toxicity and the twitching becoming so bad it was disabling is making me scared.

 

Do you let the amount of twitching affect your decisions about tapering? I am thinking I am never going to have symptom remission to the point that I can have a regular life no matter how long I hold or how slowly I taper. Maybe I should just say I can tolerate this amount of symptoms (neuropathy, agoraphobia, twitching) and start up the taper.

 

Gard

Gard, not sure if the twitching bit will ever go away for Me so I just deal with it as I know things can always get worse. As for it interfering with my taper I never let it get in the way! So much confusion on what works best taper or hold I believe it`s all individual ! Hope & Healing ~CD

[[ly...]]

 

 

ss,

 

I am very sorry about your situation and the fact that you have to deal with this benzo ordeal on top of everything else truly makes me angry.

 

I have done very well on long holds with not even a hint of tolerance wd.  I have always improved steadily, albeit with comings and goings of symptoms/intensities which gradually diminished until almost non-present.  During all of my holds I have gotten to a point of feeling very well - with all but the most tenacious of symptoms vanishing.  I'm quite sure that the remaining (mainly annoying) things would have been gone had I simply continued to hold indefinitely.

 

I could very well stay at my present dose for years and don't believe that I would suffer any ill-effects.  I continue this taper because I don't want to HAVE to take a pill merely to avoid wd.  At this point I have no urgency in getting off.  If you look at my long holds it is clear that I've not really been one to feel any pressure in this regard and I've certainly learned that going too fast is not a good plan for me.

 

I wish you the best in whatever you decide to do and sincerely hope it works for you.

 

 

[[He...]]

Hi Solitudeseeker,

 

I am new to a long hold. I am at 3 months now. For me it has worked wonders. The first six weeks my wdfx  did not deminish very much but after the six week mark I began to steadily improve. Now at three months i really do believe I am stable. I have spine issues so my neck pain makes things a bit confusing fir me. Not sure if it is my cervical spine or wdfx. But i do believe in a hold to get stable.

It has worked for me. Most of my wdfx have actually disappeared,however they do pop up every so often but usually disappear the next day. Sometimes a new wdfx will still appear, but it is never extreme. I have begun to get back to my old life and go about normal everyday business and socializing. The hardest part for me is the temptation to start tapering again.

 

Only you can decide what's best for you.

I am sorry that you have to deal with so much at once, let alone have to deal with any of it at all.

I hope you stay strong.

 

This is a wonderful support group. The buddies here are very kind and supportive, and they are attentive to all the posts. I know you will get good support here.

All the best to you. 

 

Heathcliff

[[so...]]

Thanks so much for the reassurance, you guys. I feel more confident, and am looking forward to enjoying the holiday season while I hold!

[[ca...]]

Thanks so much for the reassurance, you guys. I feel more confident, and am looking forward to enjoying the holiday season while I hold!

SS, that`s so much to deal with so FWIW If holding is helping you feel better then I would hold ! Again your a Brave Soul for even thinking of tapering , sending you Healing Thoughts ~CD

[[Va...]]

Making a separate post because this is a separate thought that came to me last night. Do you think that adding the alcohol I need to dissolve the L could cause the uptick in symptoms? I take 3ml 3 times/day. Other than that, I cannot remember the last time I had any kind of alcohol. Maybe it was half glass of wine at somebody's house nearly 10 years ago. Alcohol makes me really sleepy, so I don't generally have a drink even if everybody else is.

 

Gard

Gard my thoughts are that the alcohol shouldn't cause an uptick in your sxs unless there's something you're not telling us. You can be honest. Are you making your solution with only vodka? Lol. 

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SS.... WelCome to a great group. I'm so sorry for what you are dealing with, I hope you find some quality of life in the midst of it all.

I am also new to long holds.... I am going into week six , it's not easy to keep holding, but I am gradually improving , it's slow but I am trusting it will be worth it.

 

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Day 1 of cutting back to my 81/4 mg V after my 4 day accidental updose.

So far feeling fine but that doesn't mean much with V ..... Will keep you posted.

 

Twitching-- I have chronic restless legs, at night, I take gabapentin for it which I have not put on my signature ,perhaps I should , but I didn't think of it as I've been on it for years and it's never bothered me. I had kind of assumed I'd take it for the rest of my life as for me this is a genetically inherited issue. My whole family has it , tho not chronically like I do.

Anyway the gabapentin stops it. There was a time when magnesium used to work , though i had to take a lot of it! 

[[ga...]]

Making a separate post because this is a separate thought that came to me last night. Do you think that adding the alcohol I need to dissolve the L could cause the uptick in symptoms? I take 3ml 3 times/day. Other than that, I cannot remember the last time I had any kind of alcohol. Maybe it was half glass of wine at somebody's house nearly 10 years ago. Alcohol makes me really sleepy, so I don't generally have a drink even if everybody else is.

 

Gard

Gard my thoughts are that the alcohol shouldn't cause an uptick in your sxs unless there's something you're not telling us. You can be honest. Are you making your solution with only vodka? Lol. 

 

Vodka, water, and LIBRIUM! Bleh.

 

Guess the reason I wondered is everybody says don't touch alcohol while tapering.