Six Years Update

Hello BBs,

 

I wanted to return to tell you all, that my life is great. I am so happy with my life, no more pain, no more anxiety and no more fear. I have a calm body and a calm mind. I am fully recovered. This past year between 5-6 years, I have finally reached a full recovery Please don't freak out , I was 75% healed at 2 years and was able to return to work, and live a pretty normal life. But even this far out I continue to notice improvements.

 

I don't like to recall the horrors of WD, but all of my prior 21 WD symptoms have gone away everyone of them. So the nightmare does end, it will end for all of you. Life gets so much better.....

 

Without BB I would not of survived, all of you saved me. Thank you. I will never forget your kindness, support and love. I lived on this site for a solid 2 years.....BB was my life line.....

 

Sending healing thoughts your way. Never give up HOPE. You will recover, you will be OK. Onward.

 

Always, Cindy

 

 

Congrats! Such a wonderful post to read, Cindy. Thanks for coming back to post to those still struggling.

What symptoms did you deal with and how did they drop off as you got better?

Congratulations!!!!

 

Thank you so much Cindy for coming back giving hope!

 

You are saving lives!

 

Have you had muscle rigidity? How bad was it if you did and how long did it take to go away?

 

Best wishes to your new life!

 

4mom

Thanks Cindy......Very kind of you to share your bliss.....

 

Stay well

 

Alan

Thanks Cindy.  I needed a good news story today.

Great news Cindy, I'm so happy for you!!! Thank you for returning and posting this message so others can gain hope for their recovery.

 

pianogirl 

So good to read about your healing Cindy, this is great news! Thank you for sharing and giving the buddies hope and strength to carry on. Be blessed and enjoy living happily!

Cindy!

Thank you so much for coming back to write - you know how much that means to us in the thick of it! Hope is huge!!!!! Especially with world events - we need to see this stuff:)

 

So happy for you!

Thank you Cindy!

 

Like 4 Mom I would like to know if you had any severe muscle contracture, rigidity etc.

Hi Cindy. I'm so happy for you. Never give up. Well said.

 

Becky

Ajusta, 4mom, boombox,

 

I had 21 symptoms , the worst symptoms were horrific intense entire body burning, joint pain, muscle cramps, bladder spasms, and FEAR. I went to numerous specialist before I discovered ambien was the cause of all my crazy bizarre symtoms. I saw Rheumatologists for joint pain, cardiologist for heart palps, urologist for bladder spasms, neurologists for burning, psychologists for FEAR and anxiety, a surgeon who removed by healthy gall bladder, Gastroeneterologists for GI issues, PCPs and numerous testing, Spinal MRIs, EEGs, EKGs, Qsart Test, heart monitor, blood work..........Not one specialists could identify a cause, they ALL thought I was just crazy. I remember that FEAR, it paralyzed me.......IT was the most horrific experience of my life, one BB member referred to it as the holocaust of my soul......

 

I just know what saved me was HOPE....I truly believed all my bizarre symptoms were related to ambien,, and I believed what Baylissa and BB friends told me, I would be OK. My symptoms slowly and gradually faded away......

 

What I never got from the medical professionals was VALADATION........none of them believed me, they referred me to psychiatrists, I saw my medical records at the end of my healing, they all said I was CRAZY...nutso.

 

My advice to all of you, is HOPE , hold onto HOPE, this nightmare will end.

 

Onward, Cindy

 

 

 

THANK YOU, Cindy!!! You always give me hope whenever you write. I keep thinking that this is just the way I'll always be, and I'm very depressed because coronavirus fears and feelings of isolation have intensified the anxiety and depression.

 

I can't thank you enough for coming back and writing such hopeful words!!! :hug: :hug:

Thank you for coming back and posting Cindys.

 

I have the intense body wide burning pain level 10/10 24/7 as well as vulvar and urinary burn type issues and many of the same that you had with the exception of the gallbladder.  I do see light at the end of the tunnel.

 

You say UTIs.  Were they actual culture proven UTIs or did they just feel like a UTI but test negative?

You say you reached full recovery between year 5 and 6, what symptoms had you left at that point ?

 

I will be 6 years off in a few month and zero window, am in the worse wave ever doubting healing more than ever

goforit, My GI issues were minor, but some surgeon thought if my gallbladder was removed it would solve all my problems......NOT.

 

The intense body burning and bladder spasms were my worst sxs. I burned everywhere , my torso, mouth, "privates," After one year the intensity of the burning decreased but the burning gradually faded away completely by about 2 years.

 

Now the bladder spasms, were a real bitch. I peed constantly, I had numerous confirmed UTIs, confirmed via culture. But I also had numerous cultures be negative.  Urine analysis would always show a trace of blood in my urine. I have showed a trace of blood in my urine since taking ambien, that trace of blood still exists, but usually now there is no UTI. Without a doubt, I know my bladder and UTIs were a direct result of my encounter with ambien and WD. Never had an issue with bladder or UTIs until WD. I try to be proactive and drink plenty of fluids. When a UTI was confirmed thru a culture, then an AB was prescribed, initially bactrim, which over time I became allergic to, and now Amoxcillin is prescribed for UTIs. But as with all my WD symptoms, over time my bladder issues have decreased dramatically.

 

badrebad, between 5-6 years, I continued to have little "episodes" like burning sensations for 20 seconds, or UTI or bladder spasms , or WD back pain, but the intensity of these symptoms were so minor, hardly noticeable. If I have one alcohol drink, my burning sensations or anxiety fear returns, so I never drink. In summary, everything just slowly very slowly faded away.

 

Onward, cindy

Hi Cindy, thank you for telling your story! It is very reassuring to read anothers journey through this often long recovey. When in this for years it is easy to believe the damage is permanent. Your story is proof those of us at it for years do heal. I'm happy you are feeling well.Thank you thank you thank you!!

 

Warmly,

Carita

Congratulations, Cindy!!  Enjoy your life to the fullest.  I am 18 months out, and while a lot has definitely improved, the insomnia is still my biggest issue.  I avg. 4 hours a night and still cannot nap.  I see in your signature that at that same time you were still struggling with insomnia.  How/when did you sleep improve and what helped?  Thank you in advance for your response.

hopefullinpa,

 

To this day, I have insomnia issues BUT, it is a different kind of insomnia, it's Not the WD insomnia. I'll try to explain the difference, WD insomnia for me, lasted about 4 years, with "WD Insomnia" I was only able to sleep about 3-4 hours in duration, I had extreme night sweats, horrible dreams. Once my sleep started to improve in duration , it was 4-6 hours of interrupted sleep. WD insomnia sleep was never a restful sleep and I had extreme anxiety with my inability to obtain a restful sleep during WD.

 

Now after I recovered from WD, I still suffer with insomnia, but I no longer have any anxiety or restlessness about not sleeping. Now I usually sleep 4 hours in duration, wake up, listen to music in bed or audio tapes for an hour or so, and then fall back to sleep for another 2-3 hours. And it OK. So many woman my age (65) have problems with sleep. And the sleep I do get now is a restful sleep. But it so nice Not to have that anxiety about not being able to sleep. I am also retired now, so it's not a major issue in my life any more. And another great thing is, I can take a very restful peaceful one hour nap. No more toxic naps, those were brutal, waking up with that fear and panic.

 

So my sleep is so much better, still have insomnia, but with a calm body and mind , it's no big deal.

 

It gets so much better, hon.

Sweet Dreams will return.

 

Always, Cindy.........ONWARD

Congratulations Cindy, you made it to the other side, I’m so happy for you.

I’m almost 4 years out benzo and 2 years out remeron and 16 months out hormones.

Still have horrible burning head/scalp, headache, anxiety, body pain, body  spasm, tinnitus and toxic sleep, not able work or exercise. Getting harder to believe it will end one day.

Your post gives me some hope....thank you so much

 

About the burning... what give you any relief?Did you have a burning head/scalp?

Thank you again for coming back and giving us some hope

Vica, I am so sorry for your pain and suffering. That burning can be brutal. I do recall having a burning head and scalp, it also felt like a was wearing a skull cap on my head, which would tighten and then loosen. I burned everywhere.....complete body torso, mouth, privates....everywhere. I was prescribed gabapentin for the burning.......I took it for 6 weeks, and it did not help at all with the burning sensations. All gabapentin did for me was it made me groggy and initially it helped me sleep. But after 6 weeks, I tapered off the gabapentin over a 6 month period. I believed gabapentin just complicated my WD and then I had another med to wean off of.

 

What helped me the most was distraction.....and walking. I played solitaire on the computer and I did a lot of walking and talking to myself with positive affirmations. I was unable to sleep in a bed for the first 2 years, because everytime I would try to relax in bed, the burning increased and the anxiety. So I purchased an oversized recliner chair and pretty much stayed in that dam chair for 2 years..... on BB and watching TV.

 

My burning sensations gradually and slowly faded away. At one time they completely disappeared for 3 months and then returned again before they finally faded away for good.

 

You have 4 years behind you, congrats! It will only get better. Onward.......hold onto HOPE, you will be ok, this nightmare does end.

 

Always, Cindy

Thank you Cindy 

Cindys - Would you tell me how much gabapentin you were on and how you tapered off of it?  Rate, mg. etc.?

 

I'm down to slightly below 1.5 mg. of valium a day and reducing it by a tiny amount every day.  I should be done by June 3.

 

I am on 1400 mg. a day of gabapentin.  I would like to taper off of it next.  I think you were at a similar dose and managed to taper in 6 months time?

 

I'd like to know what you did and how it went for you please.  Thanks so much.

 

Please keep checking in here.  I also took Ambien, but not much and not often.  However, my symptoms are very similar to what yours were with the burning and urinary stuff.  The fear of being alone and of leaving the house has thankfully passed for me.

 

(I will also mention that I am on Oxycontin but I am saving that for the last thing to taper off of.  I had to go on it because my burning was

10/10 24/7.)  Such a mess.  Destroyed my trust in doctors and Pharma.

 

Thank you.

 

GOforit,

 

I had CT off of ambien, which was a Big mistake. So after only taken gabapentin for s short 6 weeks, I knew it would be best to taper off slowly. I referenced a site which helps with tapering Survivingantidepressants.com, which had a thread regarding gapapentin and also after I posted received their advice on the best way to taper off gabapentin. There is also a Gabapentin thread on BB where I may have posted. I can't recall the specifics of my taper off of gabapentin, I just recall that I tapered off over 6 months and would usually hold at 2 weeks before another cut. Some of the doses of gabapentin were in capsule form , where I would empty the capsule and eyeball it for appropriate cuts. I am pretty sure the 100mg dose were capsules. So I do recall when dumping out the powder, I would just estimate smaller doses toward the end like 50 mg and then finally jumped at 25 mg. I usually would take the dose with applesauce. I had no problems tapering off the gabapentin.

 

I just want you to know TIME and more TIME will heal you. You will heal, and your life will be filled with happiness and peace.

 

Always, Cindy

Cindy,

 

Thank you for coming back and sharing your six year update!  So wonderful to read such an inspirational story of healing.

 

Wishing you all the best,

Brighterday