Post Benzo Protracted Withdrawal Support Group

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No windows for me either.  16 months off, I have an update on my blog.    http://www.benzobuddies.org/forum/index.php?topic=27635.msg759075#msg759075

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Gregory, no true windows for me, also.  A better day for me is when I can do a few chores around the home without weakness.

 

Patty  xo

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Having a really frustrating day.  Nearing the 23 months off mark and have been at this plateau for many months.  Starting to wonder if any healing is even going on anymore???  On top of infertility (which I really hope is only temporary from withdrawal), weight gain, and these horrid head symptoms I am really hoping and praying that this is not my life from here on out.  It's just so hard to tell sometimes.  Right now I am really struggling with this symptom of nerve pains in my nasal area and between eyes??  I don't even know how to explain it and haven't seen many on here with it so I am starting to wonder if it's even the Xanax or the horrid Effexor I ct'd 4 and a half years ago??  It is like someone has put menthol up in my nose.  And the nerves in that whole area just burn and are so tight that I have to keep constantly squinching my nose???  This has been going on for quite a while now.  Heard someone on some board way back say that it is dopamine receptors that are misfiring???  I don't know....and it comes with bad histamine at night that completely clears by mid-day??  Crazy this stuff.  Has anyone heard of this??? 

[[ve...]]

Having a really frustrating day.  Nearing the 23 months off mark and have been at this plateau for many months.  Starting to wonder if any healing is even going on anymore???  On top of infertility (which I really hope is only temporary from withdrawal), weight gain, and these horrid head symptoms I am really hoping and praying that this is not my life from here on out.  It's just so hard to tell sometimes.  Right now I am really struggling with this symptom of nerve pains in my nasal area and between eyes??  I don't even know how to explain it and haven't seen many on here with it so I am starting to wonder if it's even the Xanax or the horrid Effexor I ct'd 4 and a half years ago??  It is like someone has put menthol up in my nose.  And the nerves in that whole area just burn and are so tight that I have to keep constantly squinching my nose???  This has been going on for quite a while now.  Heard someone on some board way back say that it is dopamine receptors that are misfiring???  I don't know....and it comes with bad histamine at night that completely clears by mid-day??  Crazy this stuff.  Has anyone heard of this???

 

Hi Stronger.  I'm 2 years out and just had a bad sinus infection for which I had to take antibiotics.  Spring allergies have been pretty bad here too.  Is there a chance that what you have are allerigies or sinus infection?  I usually find that saline flushes or Simply Saline bought at the store helps, but this last one, I had to use an antibiotic which I post about on another thread here, started by SunnyGirl.

 

Feel better,

 

Vertigo

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Thanks Vertigo,

 

No.  It is so strange because it always clears up within the day.  I thought it might be too but it's been off and on for quite some time.  Been to the ENT.  Not sinus.  Guess I will just have to wait this one out.....

[[Wh...]]

Having a really frustrating day.  Nearing the 23 months off mark and have been at this plateau for many months.  Starting to wonder if any healing is even going on anymore???  On top of infertility (which I really hope is only temporary from withdrawal), weight gain, and these horrid head symptoms I am really hoping and praying that this is not my life from here on out.  It's just so hard to tell sometimes.  Right now I am really struggling with this symptom of nerve pains in my nasal area and between eyes??  I don't even know how to explain it and haven't seen many on here with it so I am starting to wonder if it's even the Xanax or the horrid Effexor I ct'd 4 and a half years ago??  It is like someone has put menthol up in my nose.  And the nerves in that whole area just burn and are so tight that I have to keep constantly squinching my nose???  This has been going on for quite a while now.  Heard someone on some board way back say that it is dopamine receptors that are misfiring???  I don't know....and it comes with bad histamine at night that completely clears by mid-day??  Crazy this stuff.  Has anyone heard of this???

 

I haven't heard of this specifically but have heard so many stories of the weirdest pain sensations all over the body that this does not surprise me at all.  My nerve pain also eases up later in the day.  Our nerves seem to have been badly injured and we can only hang on and hope for healing.  I'm sorry that you have to endure this Stronger. 

[[he...]]

I have severe nerve pain , I have triggering/stimulation thats over the top all over my body, its unreal what these drugs can do to us, right now I feel an invisable force of pressure on my neck its so hard to describe, its pressing forward and downward the same time, it feels like my vertabrae is streching , its dng this on the back of my neck , the front of my neck, and on my shoulders its been constant the past few mths , at times it feels like my neck is gng to crack off cause my head feels too heavy for my shoulders, and it truly feels like an invisable force. Anyone else describe it like this ? My entire body os so extremly stiff , all the muscles are so tight , theres not one part of my entire body where the muscles are relaxed even a little, I feel thats why I am steadily burning deep deep burning like muscle burning all over steady 24-7 cause of the muscles being so stiff, even my face is so tight , its like pressure is forcing my face outward , my hands and feet feel the same way. I cant belelieve this far out I got this bad , it will be 2 years on Sunday , and since I hit Januray of this year which was 20mth off I got this bad. :'( :'( :idiot: :tickedoff: > :( :o ???

[[ve...]]

I have severe nerve pain , I have triggering/stimulation thats over the top all over my body, its unreal what these drugs can do to us, right now I feel an invisable force of pressure on my neck its so hard to describe, its pressing forward and downward the same time, it feels like my vertabrae is streching , its dng this on the back of my neck , the front of my neck, and on my shoulders its been constant the past few mths , at times it feels like my neck is gng to crack off cause my head feels too heavy for my shoulders, and it truly feels like an invisable force. Anyone else describe it like this ? My entire body os so extremly stiff , all the muscles are so tight , theres not one part of my entire body where the muscles are relaxed even a little, I feel thats why I am steadily burning deep deep burning like muscle burning all over steady 24-7 cause of the muscles being so stiff, even my face is so tight , its like pressure is forcing my face outward , my hands and feet feel the same way. I cant belelieve this far out I got this bad , it will be 2 years on Sunday , and since I hit Januray of this year which was 20mth off I got this bad. :'( :'( :idiot: :tickedoff: > :( :o ???

 

Have you thought about asking your doctor about some non benzo medication to help with the pain?  My father has had good pain relief from Neurontin.

 

Vertigo

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Hi Vertigo, I cant even take magnesium it reved me up severally, I took Gabapetin when I was on Benzo for 19 days , when I stopped it tahts when I started to have severe burning on my legs , and felt like a convulsion, my body started to shake erractically, so I will not even try that again , I also read w/d from that is the same as Benzo W/D .Thank you for the suggestions.xxx

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Helpme I just wanted to chime in and say I have had exactly what you are describing too with the neck pain/stiffness.  Mine used to be a constant burning and inflamed neck that had to be massaged every night.  Now it has turned into the exact thing you describe.  And I always wake up with that horrid tension and stiffness.  Unreal really.  Like you said.  As if there is so much pressure there at times like someone is pushing.  I do take fish oil and magnesium though.  Not sure if they help but maybe??  So for me, this symptom used to be nonstop and very painful, but is now just that stiffness like you describe.  Hang in there!

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I take Magnesium glycinate.  Not sure if that's different than the one you took??  Maybe you could try a different kind or get the magnesium bath stuff/epsom salts??

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Hi Vertigo, I cant even take magnesium it reved me up severally, I took Gabapetin when I was on Benzo for 19 days , when I stopped it tahts when I started to have severe burning on my legs , and felt like a convulsion, my body started to shake erractically, so I will not even try that again , I also read w/d from that is the same as Benzo W/D .Thank you for the suggestions.xxx

 

Hi Helpme.  So if the burning started when you stopped the neurontin, maybe it was helping you?  I'm not saying you "should" go on any medication. That being said, sometimes a reaction one had to a medication during one particular circumstance may be quite different at a different time.  You are right though, that whatever pain medication you  might consider, if you and your doctor decide to do so, you might eventually want to stop it and it would likely need to be tapered off when you felt well enough to do so.  The question is whether you want to continue to gut out the pain now or maybe get a little relief from some medication for a while and taper off later and see how you might feel.  I think a buddy named Colleen0723 had much nerve pain like you, reached a point a couple months ago where she and her doctors felt it was time to try some pain medication (I think Cymbalta and now elavil).  Last i heard, she was doing a little better.  It's a very individual decision.

 

Hope you feel better,

 

Vertigo

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Hi helpme 123,

 

As you know I've had neuropathy for several years now and I understand your need for some relief. There are pain medications that will help to some degree without getting into the Cymbalta, Lyrica, elavil, neurontin, etc.  One dr wanted me to take Lryica, I read the side effects and it said it could cause burning....I was on Cymbalta before the ct and my hair fell out by the handfuls. It's my opinion, and you can google and read up on these meds yourself, that if it can help it can also cause it. Ask your dr. about Tylox, Tramdol and Flexeril. These are strong pain meds and I'm not prescribing them, but you might find some benefit if you talk to your dr. about them. As with anything, these too can be addicting so you have to pay attention to what you are doing. You might only take one at night if pain keeps you from sleeping. I do believe the intensity of your burning will lessen with time.

 

Taking something like Lyrica may take some pain away now but everything I've read about coming off Lyrica is a nightmare and, of course, the burning could start again and you'd be back at square one. Those drugs affect the very nerves you are trying to heal.

 

What you are going through is a nightmare, I completely understand, but you have to weigh your options for the long run.

 

TS

[[an...]]

hi,my situation is very complicated,i had a horrible beyond words kind od detox and wd from long term use of klonopin,i was on it for 16 years and starting in 1991 after i had a breakdown,march 2008 i got a phonecall telling me my docter wanted me off klonopin by march 20th!  So i was very scared,i docter wanted me off in one month,i beggged her to give me 2,i only made it to 7 weeks until i began flippin out and got seriously uill,thats when it all started,i thought i was gonna die for sure,becuz i waz at deaths door,i began chaeting here and there with benzos up until oct 08,plus i used lunesta for a year and a half up until 2010,i been feelin quite ill again,i used to have windows,not anymore. Whats happened to me?  I am still unable to taper the tegretol and remeron,plus i am now going through thr change,i am also 43.  This has been nothing but a hell ride and i wish i could reinstate and do it over again,the right way!  But i would hate to go through that again,i would rather die!  Please encourage me!

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Thank you Vertigo, Stronger, TS xoxoxx , I really appreciate your opinions , I got a perscribtion for Tremedol yesterday , But as of now I still never got the perscribtion filled, My husband trys to encourage me to wait it out, although he understands the severity of my pain I am in still would support me no matter what I do, But I am so scared taking anything !!!! I cant deal with this nerve pain reving up any worst then it is now!!!!  :'( :'( :'(

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Angel I am sorry sweetie, can you Google Valerie Bell Benzo Story , she did that exact same thing as you , and she got better hun, even Reg Pert Benzo story , he was really severe , he recovered too hun, it just takes longer for some of us, I will be 2 years tomorrow and Never thought in a Million years I would be this bad , I got generally worst severally worst at 20mths after taking Childrens Benadryal , and again after taking magnesium abt 3 weeks ago , hang in there , sending prayers your way and for all of us. xxx

 

God Bless

Love Laura

[[Ma...]]

Having a really frustrating day.  Nearing the 23 months off mark and have been at this plateau for many months.  Starting to wonder if any healing is even going on anymore???  On top of infertility (which I really hope is only temporary from withdrawal), weight gain, and these horrid head symptoms I am really hoping and praying that this is not my life from here on out.  It's just so hard to tell sometimes.  Right now I am really struggling with this symptom of nerve pains in my nasal area and between eyes??  I don't even know how to explain it and haven't seen many on here with it so I am starting to wonder if it's even the Xanax or the horrid Effexor I ct'd 4 and a half years ago??  It is like someone has put menthol up in my nose.  And the nerves in that whole area just burn and are so tight that I have to keep constantly squinching my nose???  This has been going on for quite a while now.  Heard someone on some board way back say that it is dopamine receptors that are misfiring???  I don't know....and it comes with bad histamine at night that completely clears by mid-day??  Crazy this stuff.  Has anyone heard of this???

 

Hello

I think I have similar symptoms as you do. I am 9 months off and don't belong in this group but read your post the other day and was interested. I had the face/sinus pain and pressure from the end of my taper. It is like you describe. I thought it was sinuses but I don't have any congestion, I am breathing normally. The pain/pressure is in my nose, cheeks and upper gums/teeth. Sometimes all my face is very tight. Sometimes I think my face will explode. My nose seams very cold. Lot of tingling and sometimes top of nose feels numb.

Take care

 

Marry

[[Ma...]]

Hey Guys, afraid I'm going from bad to worse. I have Chemical Sensitivities, well, I used to, they were gone, this last bad wave brought them back. I think I might be coming out of it after 4.5 months of pure hell, but something's happened, and sensitivities thing, and my house is making me powerful sick. I woke up yesterday this morning and could not breathe, wheezing, congested, terrified. I took a .5 mg Ativan, never thought I'd do that. It opened my rbreathing somewhat but I still feel very ill and most of my sxs are still there. Have hardly slept a wink in over a week and now, after .5, not even dozy. I was ready to reinstate, just couldn't take it anymore, but it doesn't seem to be doing much of anything at all. I'm so ready to walk away from all this if I can, but now I'm scared it isn't going to work. My doc wants me at a low dosage, 1mg /day in two feedings but it's looking like that's just not going to cut it and he won't budge I'm sure.

So scared, so tired, so beside myself. I heard the part about prefering to die over doing another taper, I'm there. I don't want to get myself in so deep I can't get out, but I'm feeling like I'm already there (pesticides got into my house, or something that's making me ill). I know that sounds crazy, but google MCS and pesticides before you judge, it's quite the eye openner/

 

So, if .5 is doing nothing, does that mean it never will and I should just bail while there's still bailing to be done, or is it possible that if I got to 2 mgs this might actually work. The space I live in between the rock and hard place keeps narrowing.

m

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Hi Marina.  Meljo reinstated and her doctor has her on something like 1 or 2mg klon and I don't think she is feeling significantly better if at all.  Too bad the PM system is not back yet or you might be able to contact her.  Everyone's situation is different but I'd seriously think carefully about reinstatement.  Sometimes it can take up to three years for the CNS to fully heal after benzo dependency and addiction.  You've come a long way.  Are there possibly other non benzo medications one could try before resorting to reinstatement?

 

Vertigo

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Hi Marina, be in touch with me about your sensitivities. sounds like what I went through. we can talk about it. do you have my email?

[[Ma...]]

I don't have your email but I sure wish I did. If you can cast any positive or hopeful light on what i'm going through. Come talk to me at Buddie Space, And Then There Was None please and tell me all about it.

I'm not happy with this reinstatement so far. I was so looking forward to it, what a disappointment. I was just going to not take anymore but I think since I have the stuff, I'll just take .5 again tonight in the hopes that I get just a little sleep, I sure could use it. Then tomorrow so as not to hurt myself too much, I'll take .5 cut in two, then .25 in quarters and call it a day for the stuff. If I could just see a tiny bit of sleep....

marina

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I don't know my way around here. let me tell you what has helped me. stopping all MSG and all hidden sources os MSG. all additives and preservatives. all food high in free-glutamate. that means not really cooking foods anymore because that releases glutamate.  don't eat too much foods that effect the thyroid like spinach and peaches. No fermented foods.now that is just teh foods. all my my hand ceams and shampoos are organic. be careful anyway because even 'whole foods' sells stuff with sodium-benzoate in it and that is a strong trigger for me. cleanig stuff around my house is low odor and organic. no pesticides or herbisides in my yard.  this is very restrictive but it is the only way I was able to not re-instate. i am very sensitive since being off benzos. I truely believe this sensitivity willl pass once my brain has healed. I feel good when I do the above and I feel absolutely terrible when I do not. this past year I have been able to add chocolate and ice cream(organic) sometimes. also stay away from added amino acids. you get all you need from foods. lasat night was a difficult night for be because I tried a new suppliment that had amino acids in it. people swear you need to take this suppliment but you don't. they excite your neurons. there are 20 amino acids and 9 are non-essential. if you wish, you can move in this direction during your taper. you will taper again? definatly go gluten free, soy free, dairy free and sugar free.

a couple of websites to help is

http://dogtorj.com/

and

www/truthinlabeling.com

[[Ma...]]

Thanks Garuda, I know I'm getting his from all sides too. No need to taper again, I only took the stuff one day. I'll just take a few days to come off gently so as not to have too big a drop from anything. My biggest problem is my house. i'm being assured there's nothing wrong with it but I can't breathe in it, I just don't understand what's happening to me.

m

[[ve...]]

I don't have your email but I sure wish I did. If you can cast any positive or hopeful light on what i'm going through. Come talk to me at Buddie Space, And Then There Was None please and tell me all about it.  I'm not happy with this reinstatement so far. I was so looking forward to it, what a disappointment. I was just going to not take anymore but I think since I have the stuff, I'll just take .5 again tonight in the hopes that I get just a little sleep, I sure could use it. Then tomorrow so as not to hurt myself too much, I'll take .5 cut in two, then .25 in quarters and call it a day for the stuff. If I could just see a tiny bit of sleep....

marina

 

Hi Marina,

Gagger (George) reinstated a couple months ago after some bout of insomnia.  I think he might still be around forum but PM system is out.  You might be able to contact him once PMs are back.  Have you tried Silenor?  It's a low dose repackaging of doxepin (antihistaminergic a/d which I believe will not impact GABA) which in low dose of 3mg or 6mg supposedly has been approved as a sleep aid.  You could ask you doctor about that.  I took one 3mg sample on a recent trip and it did seem to help some with my jet lag.  I don't know if it's available in Canada.

 

Vertigo

[[ga...]]

It could be something in your house or it could be a sensitivity to an energy as well. I'm sensitive to energy and it I am near someone who is angry ? I can't breath.  I have a friend of many years and I never thought of him as angry.  Once I hit acute WD, I could not breath if he were near me. I also can't breath in the car.  It's my response to the stimulation. Its my most difficult SX.  In my case and after watching it closely and joyrnaling over it , my trouble breathing is an anxiety response.  It's the most uncomfortable thing I've ever had to endure.  I do anticipate it going away for good! I just keep practicing good relaxation techniques.  Lately for past several months it is daily.