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B Strong,

 

I'm so glad you are moving on with your life successfully!  I appreciate the messages I received from you a while back regarding migraine meds.  With your encouragement, I've gotten off all triptans and other pain meds.  Thank you! 

 

I'm sorry to hear about your mother.  I was tapering last year when my 93 year old Mom was in in-home hospice and I was deeply involved with organization and emotions and the entire process. I could barely stand up some of the days because of my benzo withdrawal weakness.  It's a tough time and my heart goes out to you.  I'm so sorry. I hope your Mom will get all the comfort and care she needs. I am glad you are stronger than ever now.  Bless you and bless her. 

 

Gratefully,

Helen

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U and Helen,

Thanks for the kind words. Glad to hear back from y’all. Helen unfortunately my mom passed away this morning.😢 I am heartbroken but am thankful that I healed so I could handle this tough time…no way I could’ve gone through this 5 years ago. I believe my mom is in a better place.❤️

 

B strong

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B Strong,

 

You have my deepest sympathies. This is so hard. I am glad you are well now and I know your Mom is at peace. It’s very hard though so take good care of yourself and give yourself plenty of time to grieve.

 

Hugs,

Helen  :smitten:

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  • 1 month later...

Don’t give up friends! There is hope! It does get better…may not seem like it when you’re in the storm, but it does pass! Be stronger than the voices in your head caused by the drugs, that’s not you; it’s the drugs talking!

God bless you, I’ve been there.

 

B strong

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Thank you B Strong! You are so giving to come back and give us hope.  I know you are right  I am still in the trenches but things are changing and I feel the healing.  As always you are a voice of compassion.

 

Take good care of yourself,

Helen

 

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  • 6 months later...
  • 1 month later...

Buddies,

I pray that you can find hope and peace this Christmas season. Hang in there and make it one day at a time…it can get better, I’m living proof that even though things look impossible there is hope for recovery.

Merry Christmas and God bless.

 

B strong

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  • 1 month later...

Please don’t give up friends! Your best days could be ahead, mine were. It seems impossible I know, but don’t quit having hope…❤️❤️❤️

 

B strong

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Thank you so much B Strong for the encouragement!  I think of you often. I'm making progress for sure!!  Slow but sure.

 

Hope all is well with you.

 

Helen

 

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Tyson,

Unfortunately I still have tinnitus…I would’ve thought very hard to live with when I had everything else going on, but I manage to live with it, and live quite well.

I actually have gotten to the point that it’s background noise mostly. Would I like to not have it? Absolutely! It’s annoying and can drive you crazy…but for me after everything else I’m just grateful to not have the anxiety, depression, insomnia, akathasia, etc. I do use a noise machine at night to drowned it out and that helps me. I hope one day it disappears, but if it doesn’t I’m still thankful to have made through hell!

 

Helen,

So glad you are getting there! Progress sometimes is slow, but it’s still progress! Small steps do add up and then you look back and are amazed where you came from. Keep getting better dear friend!❤️

 

B strong 👍

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B Strong

 

Thanks for the reply. I was wondering if you took anything for your akathisia when you had it? I am taking propranolol and its working so far. I am also taking a small amount of magnesium citrate for constipation. Do you have any experience with either of these? Are you currently still taking anything? Thank you.

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Tyson,

Glad the propranolol is helping you, I tried it and it definitely wasn’t for me. Be sure to taper it if you go off, my Bp went up to 225/115 when I tried to stop it and ended up in the ER. I’m not on anything anymore and expect for a very occasional Advil for an occasional migraine (that are much less frequent). I’ve been totally drug free since stopping everything in 2016 and finishing my K taper in March 2017. I even got off things like Nexium and Bp meds that I was told I’d be on forever.

Good luck with your tinnitus and recovery!

 

B strong 👍

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    B Strong,

          Your story should be made into a movie!!  I’m so glad you made it through. I hope you don’t mind me asking. Did your pacing (akathisia) fade away?  I’m still dealing at 18 months. It started 6 months out. I’m about 25 months. The pacing has gotten way way better, but the restlessness is still hanging on, but seems to be coming and going now. So hopefully it will disappear.  It’s been tough

      Appreciate all your support for everyone 😘

    Thanks so much.

              Kudos2

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Kudos,

So glad you are getting some relief from your Akathasia. It truly is Hell! I really didn’t think I would make it, you know… how do you pace and convulse nonstop all day everyday with no sleep? How does your body even function anymore? In the midst of it, it seems impossible to believe you’ll make it….but if you’re feeling some relief, no matter how small, you are turning a corner!

When I was getting zero relief I didn’t have any hope, but when just a moment of hope happened it gave me a glimmer of hope I hadn’t felt. With the slightest bit of hope it changed everything. It was still terrible, still months of suffering…but it eventually fell away. It was weird, not a “Eureka” moment but one day I realized it was gone! What a moment to be able to sit down, to relax, to not have my mind racing! It was amazing!

It will come. Take each gain and savor how much you’ve overcome. Those that didn’t have Akathasia have no concept the inner terror we went through, and they never will. Don’t expect them to. Fortunately for them they’ll never know!

Good luck and God bless!❤️

 

B strong

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    B Strong.  Thanks for your encouragement,  it’s relief just from having you reply back. I agree to

Savor each gain.  I am getting there slowly.  I hope NOBODY has to EVER go through akathisia. It’s

Insane. I do understand the glimmer of hope. Well thanks again. 

 

 

    Kudos2

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Hi B Strong

 

Can you tell me how and when you got off the nexium? I am also on a ppi and want to get off. Did you taper? Did you wait til you were healed from the akathisia and withdrawl to get off? Really appreciate the information.

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Tyson,

I went off while I was tapering my K. I tried cold turkey initially but had gastric issues, so I went a little slower. I skipped every 3rd day for a couple weeks, then every other day for a couple weeks and was able to get off of it. I believe the nexium being a ppi possibly had at least some influence on how I was absorbing the other drugs. I was very glad to get off of it, and had been on it for over 10 years. I had been told I would need it for life! Not so…been off now for almost 7 years with zero regrets!

My digestion is probably as good as it ever was. Was it completely smooth? No, it was a little bumpy but not like getting off the K and all the other stuff but I was determined to get off everything to see if it was me or the drugs!

It was the drugs!

 

Not saying all drugs are useless, but we have drugs added because of side effects caused by other drugs and pretty soon we HAVE to keep taking the drugs because our body gets used to them. I’m not a doctor, just someone who’s been there. I was a chemist, so that helped me some during my taper and to understand the effects my body was going through. I wish you luck my friend!

 

B strong

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Thanks B Strong, trying to formulate a game plan to get off the ppi........so, did you get off the ppi before or after your akathisia resolved? I have it as well but its controlled by propranolol........idk if i should wait or just do it now?
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Tyson,

I personally would try to go off as soon as you’re able… but you be your own advocate. I was still in the midst of akathasia when I went off. I felt I had nothing to lose at that point.

The reason I say sooner is I feel the ppi has an impact on how the gut absorbs drugs. There is more serotonin in the gut than the brain and all these things interact on many levels. I feel the sooner you can get off any drug to see what is you and what is a drug reaction will help decide what is causing your akathasia. Akathasia is hell on earth for sure! I feel for you.

Take it one moment at a time and they start adding up.

 

B strong

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  • 1 month later...

I hope that if you’re reading this you still haven’t given up hope! Don’t let the drugs win…hang in there, take it moment by moment, it can get better! Healing is not linear and not the same for everyone. Try not to compare yourself to others, just try and take any little success and build on them. It can be very bleak at times but please don’t give up! Miracles do happen, I’m a testament to that, I was in a place that I thought there was no way I would ever recover. Doctors were diagnosing me with multiple diseases, Parkinson’s, TD, Cushings…more symptoms than I could even count. Now almost 5 years from my recovery I’m living life, can sit and not even have a thought at times, which was impossible when my mind was racing 24/7.

I pray you all find the will to carry on and make it through the terror of the drugs…it is possible!

 

B strong ❤️

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B Strong

 

Has your tinnitus improved over the years? Is it both ears? Mine seems to change all the time….some days better…..some worse……I have heard it’s the last symptom to go…..I’ll be a year off the benzo on May 10th……thanks !

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Thank you B Strong!!  :smitten:  I had a BAD month of April. Really, really bad. But today has started off very well. What an unpredictable circus this is! I'm so happy to hear that you are doing so well.I bet it's hard to believe you were diagnosed with all those diseases and now you're fine.  :thumbsup: It really does give me hope.  Today I hit 23 months off.  I'm hoping the coming month is kinder to me than the last one. At least it's started off better.

 

Thank you for dropping in to encourage us.

 

Helen

 

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Tyson,

Yes, I do still have the tinnitus…it is my last symptom. My last benzo was on March 1, 2017, so I guess it can linger. It is annoying for it still to be hanging around and I’m cognizant of the fact it may never leave. The good news is that when you can get to the point of realizing where you were and how many symptoms have dropped it becomes easier to deal with. I honestly have gotten to the point where I don’t notice it even though it’s always there, yes in both ears. It is worse when things are stressful. I wouldn’t have thought a few years back I would be able to say that it’s manageable…but without the horrible akathasia, insomnia, anxiety and depression gone I see the glass as way more than half full!

 

Helen,

I’m so sorry your April was so bad. As we heal our mind and body goes through many waves and ebbs and flows it seems. I know it’s tough but eventually we get to the point because of what we’ve been through that we are in a valley and that we will rise back up. Healing, and life are not linear. Even people not dealing with what we’ve been through have life’s trials to go through. It’s much more difficult when you’re not whole yet, but it does come. Journaling my journey kept me sane at times, being able to see that I wrote down where I had come from made me realize the huge strides that I had made…even though in the middle of it it seems minuscule. Don’t give up hope and try to find the smallest things because they do add up!

 

Keep healing my friends!❤️❤️❤️

 

B strong

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