The Long Hold Support Group

[[ly...]]

 

 

I haven't been awake for New Year's in about 20yrs!

[[fr...]]

  Me either Lynn, I'm such an old fart now. 

[[He...]]

what's all this talk about FARTS?

[glow=red,2,300]HAPPY AND HEALTHY NEW YEAR TO ALL THE OLD FARTS, YOUNG FARTS, WALKING FARTS AND TALKING FARTS,AND ANY OTHER KIND OF FARTS. WHATS THE DIFFERENCE, A FART IS A FART HOWEVER YOU LOOK AT IT, [/glow]

IM SO GLAD TO BE AN OLD FART TOO, AND BE AMONG YOU FARTS AND HAVE YOU HERE AS MY FRIENDS, CONFIDANTS AND GO TO BUDDIES.

 

  [glow=red,2,300]yay!   

 

  Heath[/glow]

[[...]]

Going to have to study that link Begood! Still can't figure out how to make pretty posts!

I guess I'm an old fart too....

:-*

[[Va...]]

Good job Heath (for an old fart)!  --V

[[be...]]

Going to have to study that link Begood! Still can't figure out how to make pretty posts!

I guess I'm an old fart too....

:-*

Study and keep looking at that link, it will come, and like I said, look at pics I have posted, by clicking on the "quote" and look how it is set up, most of my pics are from Google Image, go there and say you want to see pics of New Year gif, put that in box and many pics with come up. It will give you something to distract with.

 

http://i.quoteaddicts.com/media/quotes/2/68343-you-can-do-it-quote-pictures.jpg

 

[[so...]]

Ack, my whacked out benzo eyes can't handle all these different colors and fonts! 

[[Da...]]

This is a strange one I know, but is anyone else having 'vibrating insides' when on your monthly?. Every month now my severe inner vibrating shifts from being 'generalized' to entirely in my lower abdomen/pelvic area. It literally feels as if my insides are electrified.

 

Yes. I never had a word for it other than anxiety, which is why doctors kept trying psych meds on me. But its a sensitive nervous system reacting to fluctuating hormones. Either estrogen or progesterone.

 

Horrible isn't it. I feel like someone booted me in the stomach and shoved two cattle prods into my sides at this time of the month. Ugh.

 

The vibrating has gotten better over time, but its still there. Once, I tried magnesium glycinate during withdrawal and it calmed it down in a matter of minutes. I tried it post-jump and it made me twitchy. Tried again other night, and I ended up with muscle twitches. So that's a no-go.

 

I am picking my way through hormone options, and it scares me but I may need to try something.

 

Last month was horrible for me. I couldn't walk because my legs hurt so much, I was in agony for about five days with all of it too. I had a bad reaction to hormones once, so I'm not gonna chance it on top of WD too. I hope you find something that works for you though.

[[Be...]]

I feel for you. I am dealing with pelvic floor dysfunction, not just with endometriosis pain at time of month. The PFD is really disabling and I am doing very specific stretches to try and help. Sometimes it does, sometimes not. Today is a good day.

[[...]]

http://cdn.londonandpartners.com/asset/london-new-years-eve-fireworks_london-new-years-eve-fireworks-2015-visitlondoncomstewart-marsden_781c991ed82f542a50498c00aecac4e8.jpg

 

woohoo..... From a Brit turned Californian 

[[He...]]

Miyu, you did it! Congratulations!  Yay! Bravo!  Great photo too!

 

 

Heath

[[He...]]

Hello, buddies,

 

I always try to be cheerful and do the best I can. But I can Not do this right now any longer.

I am tired of being brave and telling myself that my new development will go away. I am tired of posting like everything is just fine fir the past three days. I am scared but didn't want to say anything. I feel like i am letting myself down.  I want so much to be successful with this taper.

But for the past 3 days I have been experiencing really bad pins and needles inboth of my arms and hands and fingers, the entire two  limbs. Its not just pins and needles, it's real Pain! It comes and goes but is there about 75% of the time. It's worse on the left arm and hand.

Has anyone had this? Can this be wd sxs. Or is this most likely from my cervical spine? I have been having pain in my neck for about four months. I wonder if it's all related?

Time to go back to the neurosurgeon? I'm scared! It is so bad that I only slept for 1 1/2 hours last night!

 

I guess my run of good months is over.

I feel in awful pain.

 

Heath

[[He...]]

MIYU

Would you explain what your burning sensations were like please? Were they in your arms or ? Was it burning, or like really bad pins and needles that radiated down your arms and hands and fingers?

 

I was doing so well and now I have what I think is nerve pain. It's terrible. It doesn't  let up.

Now I understand what you were going through. Oh yes, it is really awful. I hope yours is letting up.

 

Heath

[[no...]]

MIYU

Would you explain what your burning sensations were like please? Were they in your arms or ? Was it burning, or like really bad pins and needles that radiated down your arms and hands and fingers?

 

I was doing so well and now I have what I think is nerve pain. It's terrible. It doesn't  let up.

Now I understand what you were going through. Oh yes, it is really awful. I hope yours is letting up.

 

Heath

Heath  I had the pins and needles in my arms and hands  before for quite sometime, it used to wake me up but it eased off . Burning is my one of my  worse symptoms, I've had it for ages and it feels like I've been set on fire all over , so has my brain and all my nerve endings are being dragged through an ultra sharp cheese grater. I also had it in unbeknown tolerance  withdrwal, but its been a lot worse over the last two years sine I began tapering of the last few mg of my Diazepam , and is one of the main reasons I've had to do an updose and now holding as my symptoms knocked me to the floor literally.

 

Sometimes its a little  bit easier but still really severe, and its also a really, really common symptom in withdrawal too, so its not unusual, and like everything else it will pass. The best advice I can give you and wish some one  had told me rather than ''its normal''  is if your now tapering hold again until it passes no one explained this to me. And that's why mine got out of hand, had it been uncomfortable  it wolud have been different most people get some sort of discomfort but to get disabled by it like I did is not a good basis to be told ''its normal'' and keep tapering, and ending up further into hell .

 

 

Love Nova xxx :smitten:

[[He...]]

MIYU

Would you explain what your burning sensations were like please? Were they in your arms or ? Was it burning, or like really bad pins and needles that radiated down your arms and hands and fingers?

 

I was doing so well and now I have what I think is nerve pain. It's terrible. It doesn't  let up.

Now I understand what you were going through. Oh yes, it is really awful. I hope yours is letting up.

 

Heath

Heath  I had the pins and needles in my arms and hands  before for quite sometime, it used to wake me up but it eased off . Burning is my one of my  worse symptoms, I've had it for ages and it feels like I've been set on fire all over , so has my brain and all my nerve endings are being dragged through an ultra sharp cheese grater. I also had it in unbeknown tolerance  withdrwal, but its been a lot worse over the last two years sine I began tapering of the last few mg of my Diazepam , and is one of the main reasons I've had to do an updose and now holding as my symptoms knocked me to the floor literally.

 

Sometimes its a little  bit easier but still really severe, and its also a really, really common symptom in withdrawal too, so its not unusual, and like everything else it will pass. The best advice I can give you and wish some one  had told me rather than ''its normal''  is if your now tapering hold again until it passes no one explained this to me. And that's why mine got out of hand, had it been uncomfortable  it wolud have been different most people get some sort of discomfort but to get disabled by it like I did is not a good basis to be told ''its normal'' and keep tapering, and ending up further into hell .

 

 

Love Nova xxx :smitten:

 

Oh NOVA, Thank you! You made me feel sonmuch better. It is still very painful and irritating and miserable, but knowing that it is a normal occurance in withdrawal, takes the fear away and makes it that much easier to bear.

I had just cut .02 about a week ago, after a six week hold before that , and a 4 month hold before that. The 4 month hold got me to a really good place, no sxs  at all. But I can see that even a tiny cut can bring back those sxs at any time. So I'm going to hold fir at least a month now. Hopefully the part of my brain that is healing now will be ready for a cut in a month. But I will certainly re-evaluate before cutting again. ( imagine the part of my brain that is healing has something to do with the control of the nerves in my limbs? Who really knows. From what I understand there are GABA  receptors  all over our bodies.

Thank you again my friend! Alll the best to you for healing and peace. 

 

Heath :smitten:

[[be...]]

http://cdn.londonandpartners.com/asset/london-new-years-eve-fireworks_london-new-years-eve-fireworks-2015-visitlondoncomstewart-marsden_781c991ed82f542a50498c00aecac4e8.jpg

 

woohoo..... From a Brit turned Californian 

[glow=red,2,300]"WOO HOO"[/glow] good job, fast learner you are.   if you want it to be centered on page, do this next time. 

[/img]

  put img between the ing brackets Please look at this quote and it will show.

[[fr...]]

  Heath, So sorry you are also experiencing this.  I have had the feet and leg nerve pain for almost a year now.  It has progressed to uti area and now my hands and lower arms.  It is truly awful.  I tried gabapentin but only for 5 days and it seemed to make it worse.  I feel for you, mine used to let up some but now it is all day every day and feeling very hopeless like you.  I held 5 months, I updosed a mg. of V but none of it helped, in fact felt worse.  I am contemplating going back to Ativan now but don't know if it will help or if the Dr. will go for it.  I hope you can find some relief.  No one understands this type of pain unless you go through it.  I try to be brave and don't really post much about it.  I am now completely couch bound and have been for months.  Don't want to bring the group down, who wants to hear bout scary things anyway.  IDK what the answer is , I might make an appt.. with an Addiction Dr.  much as I hate to I want some expert info on meds I am on and if there is anything that can help.  Life like this is really no life at all.  So so tired and sad.  Praying we all get some relief soon. 

[[ly...]]

 

Is there anyone with this awful burning that is tapering something other than V?  It seems unique to that drug for some reason.

 

Heath - 3 days is not something to think of as permanent or a problem to be overly concerned about.  I once made the mistake of going to the "dizzy" thread after only a few days of the dizzies.  Huge mistake.  After that I decided to give whatever is happening at least 2 weeks before I read bad things.

 

updated:  I think I'm wrong about the V and burning.  I skimmed those support threads and see a variety of benzos.

 

 

[[Va...]]

Heath, free and MiYu nerve pain is probably my worst  symptom. It is a very difficult thing to deal with but there are times when it's not as bad. I understand how frustrating it is because it sometimes keeps me from being able to exercise and be as active as much as I would like. Nerve and muscle pain are so common and I think nova got it right when she stated the best thing to do is hold until the pain is gone. I hope you all get past this minor roadblock!  --V

[[Va...]]

  Heath, So sorry you are also experiencing this.  I have had the feet and leg nerve pain for almost a year now.  It has progressed to uti area and now my hands and lower arms.  It is truly awful.  I tried gabapentin but only for 5 days and it seemed to make it worse.  I feel for you, mine used to let up some but now it is all day every day and feeling very hopeless like you.  I held 5 months, I updosed a mg. of V but none of it helped, in fact felt worse.  I am contemplating going back to Ativan now but don't know if it will help or if the Dr. will go for it.  I hope you can find some relief.  No one understands this type of pain unless you go through it.  I try to be brave and don't really post much about it.  I am now completely couch bound and have been for months.  Don't want to bring the group down, who wants to hear bout scary things anyway.  IDK what the answer is , I might make an appt.. with an Addiction Dr.  much as I hate to I want some expert info on meds I am on and if there is anything that can help.  Life like this is really no life at all.  So so tired and sad.  Praying we all get some relief soon.

Free, you're always welcome to post whether you feel good or are having s rough time. This process is so individual and there will be some who struggle more than others. You deserve the same support so please post so you can get some support and encouragement. That's the whole reason for this support group.  --V

[[fr...]]

  Thank you Valley, you are so encouraging.  I am about at the lowest I have ever felt and pain just increasing.  Truly scared and not knowing which way to turn.  Most times I don't post because I am in so much pain I just can't.  So happy for all of you that this is working for.  Also hoping to get past it some.  If I could get a little relief from the nerve pain I think I could have more courage and go on but its very hard when it seems like no hope.  Bless you all here and keep up the good work. 

[[be...]]

To those that are struggling with burning and nerve pain, I wish I could offer more help, I just do not know about this, the only thing I do have at times if I stand in one place is pain in rt upper thigh on the front of my thigh, but once I start walking again it is fine, now I do know a bit about the dizzies and tinnitus, but just hope all will have relief sooner than later. Hang in there. 

[[ly...]]

 

 

I've read accounts from a number of people that gabapentin helped a great deal with burning and nerve pain.

[[He...]]

Thank you everyone for your posts. They certainly helped. I had no idea that this pIn and needle pain was so wide spread among all you buddies.

 

I am the same today as yeasterday and will be holding for a long time. I am wondering if holding for only five weeks before cutting this last time can be the cause of this nerve pain sxs that I never experienced before? 

It certainly is tru that there is always a new side effect that pops up when you least expect it. I can only comfort myself by telling myself that my brain has decided to heal in an area it has not yet healed in and when this area is healed, the nerve pain will subside. I hhope I am right and that it happens soonM

 

One good thing is that I was able to get 7 hours of sleep last night and for that I am grateful.the previous night I was only able to sleep 1 1/2  hours.

 

Freeme and MIYU and anyone else who is in the same boat,

 

I can certainly commiserate with you. You both posted about nerve pain before and I felt so badly for you, but, to be honest, having never experienced it myself, I did not truly understand the depth of dispair it could put you in. I now know first hand what it is like. I hope that all of our pain  will subside very soon because it is truly a mobster.

 

I find that when I lay on my back and don't move, it is somewhat better. I also have a neck support pillow that I sleep with and a soft neck collar that I wear periodically. I'm thinking that because the nerves in arms and hands and fingers send and receive signals through the cervical spine,, maybe some extra support in that area my help. I don't know if that makes sense, but I don't think it can hurt.

 

I have had some very severe sxs in the past. Some lasted only a few days and dusappeared. Others lasted weeks or even a couple of months. I hope this is a short lived one! It is one of the worst.

 

Healing and PEACE PLEASE! to all who are suffering!

 

Heath  

[[He...]]

  Heath, So sorry you are also experiencing this.  I have had the feet and leg nerve pain for almost a year now.  It has progressed to uti area and now my hands and lower arms.  It is truly awful.  I tried gabapentin but only for 5 days and it seemed to make it worse.  I feel for you, mine used to let up some but now it is all day every day and feeling very hopeless like you.  I held 5 months, I updosed a mg. of V but none of it helped, in fact felt worse.  I am contemplating going back to Ativan now but don't know if it will help or if the Dr. will go for it.  I hope you can find some relief.  No one understands this type of pain unless you go through it.  I try to be brave and don't really post much about it.  I am now completely couch bound and have been for months.  Don't want to bring the group down, who wants to hear bout scary things anyway.  IDK what the answer is , I might make an appt.. with an Addiction Dr.  much as I hate to I want some expert info on meds I am on and if there is anything that can help.  Life like this is really no life at all.  So so tired and sad.  Praying we all get some relief soon.

 

Hi Freeme

I hope you are better today. It seems like you have been in  this nerve pain fir almost forever!,I am not in the same place as you. I am only beginning to experience the pins and needles nerve pain.

I  understand your despair and your wanting to try anything that might help. I had been put on gabapentin for sleep at the very beginning of my taper . I swear it was the cause of muscle pain in my thighs that I had not had previous to taking the gabapentin. The doctor did not agree with me but I woukd not take the gabapentin any more. I only took it for five or six days in a very small dose, but never again. So I understand how it could have made you worse.

I have tries many different thing fir many different reasons during my tapering, L Theanine, 5HTP, a few different prescriptions for sleep, but I gave them all up they either didn't work or they had side effects that were intolerable for me. I am very sensitive to meds.

The only thing I take now is remeron only once every 7-10 days when I haven't slept well in a long time, and melatonin at bed time. Up until now the only thing that has been consistently troublesome throughout my entire taper, and even before I started to taper, has been insomnia. Thank goodness this has been improving very much. I only hooe the nerve pain does not stay with me fir a long time.

 

Are you holding right now? I could not tell from your signature. I am going to hold until this nerve pain stops.and even beyond that.  I just can't  imagine it getting any worse and I need to live my life.

I don't want to updose, and I think that doing that right now woukd be premature. I'm going to try to stick this out and see if it goes away with out me doing anything except holding.

 

I don't have an appt with my doctor until Feb 15. But he is of little help in the advice area. If it were up to him I would just keep on tapering through the hvery hard times and just get off the Valium already. A tleast he is LETTING ME DO IT MY WAY!

 

I hope you will keep posting so we can all help each other. I was trying to be brave and  not post about my nerve pain at first, but my bravery only lasted for 3 or 4 days! ( I'm a baby, a chicken, and I get very scared very easily)

I'm glad I posted here. The feedback I got helped so much to alleviate my fear, even if it couldnt take the pain away.

 

Fast healing and peace to you my friend.

 

    Heath