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Thanks so very much for coming back and giving so much hope to us, B Strong!! Just read about your terrible anxiety, and I'm getting comfort from it!!
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B strong,

THANK YOU SO VERY MUCH for taking time to come back and post your success story. It means a lot to me and I am sure for all who are still struggling. Your story is full of hope, encouragement and inspiration that we will also heal and reclaim our normal life back.

 

May you continue to have joy, peace, wellness and blessings that you well deserved!

 

Blessings!

 

Pi

 

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Thanks for the positive feedback everyone. I've been there and know how you feel....it will get better! Hope is a wonderful thing, we must not lose it!

 

WR and Nomo,

So good to here from some of the old KK. Always thinking of you guys along with Kgirl, Bennie, Burned, New girl, etc....hope y'all are finding some peace. :thumbsup:

 

Love to everyone suffering, ❤

 

B strong

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B Strong,

 

SO, SO, SO very happy for you. You give hope to those bringing up the rear. I’m two years out and still having some rough days. I can’t tell you how wonderful it was to read your story. It really brought tears to my eyes! This story is providing strength and encouragement beyond what you can imagine.  Thank you again for sharing such intimate details. You are one strong warrior. Blessings to you...enjoy your life with your family.

Keep us in your prayers.

 

❤️New Girl

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B-STRONG - THANK YOU THANK YOU THANK YOU..

 

FOR YOUR ENCOURAGEMENT....I HAD TEARS IN MY EYES AFTER READING EVERYTHING AND YOU GAVE ME HOPE.....

 

I AM STILL STRUGGLING.....INSOMNIA IS THE WORST.....AND I THINK THE LACK OF SLEEP LEADS TO ANXIETY......I JUST NEVER FEEL SLEEPY AND IF I GO TO SLEEP IT DOES NOT FEEL LIKE SLEEP....I USE TO BE SO VIVACIOUS.....I AM A RUNNER (OVER 30 YEARS)...AND THAT HAS COME TO A HALT BECAUSE OF THE LACK OF SLEEP. SO NOW I FAST WALK...I FEEL LIKE I HAVE AGED 50 YEARS.....( I AM 57 YEARS OLD)….I KEEP ASKING MYSELF AND MY HUSBAND,  WHAT IS WRONG WITH ME,,,,WHY CAN'T I SLEEP?    IT HAS TO BE THE WITHDRAWAL STILL FROM KLONOPIN AND AMITRIPTYINE....

 

LIKE YOU,.....I DO NOT TRUST DOCTORS AND WILL NEVER PUT ANOTHER PILL IN MY SYSTEM...MY DOCTOR ALWAYS TOLD ME THEY ARE SAFE DRUGS....I NEVER WANTED TO BE ON THEM....BECAUSE I DO NOT LIKE PUTTING ANYTHING LIKE THAT IN MY BODY. NEEDLESS TO SAY, I AM NOT GOING TO HIM AMYMORE.

 

 

WHY CAN'T WE SLEEP?  WHAT IS GOING ON IN OUR BRAINS AND BODY?

 

 

AGAIN, THANK YOU SO MUCH FOR YOUR ENCOURAGMENT.

 

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Runnergirl,

I agree that insomnia is Hell.....I had periods of almost zero sleep for weeks. I get some sleep now, 19 months off everything, but it is broken sleep. I wake normally 3-6 times a night and have to get up to go to the bathroom every time...but I'm getting around 5 hours sleep every night, I'll definitely take it. If this is my new normal, so be it.

I think our CNS was messed with by taking artificial sleep drugs, whether benzos or antidepressants that completely messed with homeostasis. I know with the insomnia, anxiety, etc it certainly makes it almost impossible to have any quality of life whatsoever. I'm glad to count myself as through the worst and feeling hopeful that it only gets better. I'm living again....hallelujah!

I pray for everyone else to turn the corner soon! 💙

 

B strong

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You are an inspiration!!!  Thank you for sharing.  This touched me so.  I identify all to well: "I used to tell my wife when I was at my worst that I was in here somewhere....pointing to my heart. Well I'm here...I really was still in there!"

 

Back in the summer of 2015 I was doing pretty good....I had retired in 2013, had a beautiful wife, 2 kids, and 3 grandchildren. I played Senior softball a couple times a week, did some golfing, which I love and spent lots of time playing with my grandkids. My wife and I went to the beach probably 2-3 times a week as it was only 30 minutes away and I loved looking at the horizon, listening to the surf (I used to surf as a teen) and loved the "clarity" and the beautiful "colors" of God's creation.

 

Back 5 years earlier I had back problems and stress from work and a doctor gave me .5 Klonopin and told me they would help relax my back and were good for just general stress relief, he said to take them as needed. I was working graveyard shifts, which I'd been doing for years. He was right, they were a miracle drug. I took maybe 2-3 a week and they also helped me get some sleep on those tough days. I never took them more than that and didn't even know "benzos".

A few months after I had my 1st ever panic attack, which I felt at the time was caused solely by stress from my job. It was horrible as anyone whose had one knows and I thought I was dying. I talked to a counselor at my church and they told me to breath in a paper bag and try to relax, that they wouldn't kill me....but would eventually subside.

The next time I saw my Family Dr, who had given me the Klonopin he said it would help me with the panic attacks, so the next time I felt close to having one I would take one. I had never been fond of taking much medicine, but this K really helped the attack subside. Continuing on this course I would take only a couple a week, with the exception of when I felt a panic attack coming on, even though I would try the paper bag trick 1st. I had only 2 more full blown attacks in the next couple years heading into retirement, knowing I was retiring was beneficial to my peace of mind. I totally quit taking the K and never even thought about it.....

 

Back to retirement life, I had been a little over 2 years into it and was having some stomach issues including some severe pains. I went to a few doctors and changed family doctors, as my old one had been "let go"?

I went to the new family doctor and told him I was retired, had some stomach pain that was severe but was happy in general. He said does the pain get you depressed? I really didn't know what to say...I said I didn't like it but I wasn't really depressed. He said I got something I want you to try, it will help, Lexapro. I said no thanks (not really knowing anything about antidepressants), he said just try it; what can one hurt. If you don't like it just quit. I went to check out and noticed the clock on the wall was a Lexapro clock, the ashtray had Lexapro on it. Didn't know about Big Pharma...

I picked up the prescription and still had some reservations as I was doing fine, I thought  except for my stomach pains. I told my wife and she said "well you can try one, if you don't like it, quit".

Sounds like a plan. That evening I decided to try one....Disaster! The worst panic attack I had ever had came on. My muscles became stiff and rigid and I had 102 fever. My wife called the doctor for me as I was panicking, hitting my hands on the dresser, having spasms, etc.

The nurse said the doctor said we'll send you some Klonopin to take.

I had not even thought of K in a couple of years, had zero panic attacks until the Lexapro and was extremely anxious. I took one dose of K and it helped a little, then another the next morning.

I ended up in the ER and they believed I had "Serotonin Syndrome" the night before and could have died. I had never heard of it, but did some reading on it, and decided I would try even more to stay completely away from drugs as much as possible.

I had another panic attack 7 days later and took another K to help it...I was trying to stay away from as much as possible. Had another a month later, took a K then 3 months later, took a K. I was pretty proud of myself  as there were several more times I "needed" a K but toughed it out. I had did a little reading and found that the K was something you should wean off of, I had never even thought of that as I had no problem coasting off of it when I retired. I thought the Lexapro had done something to me that upset my equilibrium and the K kind of helped it back to the middle, especially reading about Serotonin and its effect on you.

This whole time I was still having the stomach issues, and had been referred to Gastrointestinal doctors. The doctor put me on Phenergan to help my nausea and said it would help me sleep some too. They ordered an MRI too. The MRI came back and was told I had Mesenteric Paniculitis, an autoimmune disease that is extremely rare. I had begun to lose weight and would lose almost 40 pounds in under 2 months. They said I could possibly have lymphoma, as it was similar in symptoms. I was having a rough time and still taking the Phenergan, now twice a day for 45 days, as per my GI doctor. I started getting extremely agitated and anxious, shaking, tremors, pacing the floor....all of a sudden. My mind raced, I couldn't sit down, relax, watch tv, read. I was nervous and jittery all day. I tried taking the K I had from before and it didn't touch it at all, in fact it was much worse. Panic attacks 3-4 a day, beating my head on the door jams, opening and closing cabinets, I couldn't sit still.

I self checked myself in to a Psych Hospital hoping they would help, I was even having suicidal thoughts. The 1st one took me in at 9 am, put me in a room with many other "crazy" people, who seemed just like me. At 5 PM they said we're calling your wife to come get you, without anyone even speaking to me.

I was even more delirious, I had went there begging for help. They kicked me to the curb. My wife took me to a different psych hospital 2 days later as I was still having major issues. They took me in and gave me a shot of Ativan...and it calmed me for a few hours. It felt so good to have my mind slow for just a minute, but then it was gone. They gave me K, Ativan, Visteril and Thorazine. Thorazine is known as "chemical labotomy" in the psych world, as it was used to warehouse patients back in the 50's and 60's to keep them quiet. DON'T EVER TAKE THIS! I had no choice, as I was in a hospital with locked doors and my wife wasn't allowed in.

Don't ever go into one of these if you have a choice!!!! I don't know how  I even made it through.

After getting out I was determined to try to get off all these psychological drugs. I had been diagnosed with "acute anxiety" but was given psychotropic drugs on top of other drugs along with the Phenergan, that I later found out, is used in Europe for anxiety and according to the manufacturer, should not be taken for longer than 7 days, I had been on it for 45 days....I tried on my release from the hospital to go cold Turkey on everything. I went to a neurologist who diagnosed me with drug induced Akathasia. I was pacing 18 hours a day, sleeping 0-1 hr a day for weeks. I couldn't leave my house, I suffered from severe agoraphobia for 9+ months after this. I cried everyday. I had no rest, especially mentally. I begged God every day for months to please take me....I don't even know how other parts of my anatomy functioned with No sleep. After the 1st month out of the hospital, I tried to find some stuff on line, anything, everything that might help. My mind was totally consumed with the drugs, and how to get off.

I found some videos on YouTube about tapering, and then found Benzo Buddies!.....You mean other people have been through this? I asked questions and watched taper videos....SG57, a buddy who is still suffering,  gave me some advice, advice that was instrumental. I watched a video from a guy from Canada named ,Crazy Canuck.

I went back on K with the hope of tapering this time. It wasn't easy....I was diagnosed with Parkinson's disease, and Tardive dyskinesia by 2 different Neurologists.

The 1st 9 months after the hospital, including the start of my K taper were horrible. I did a milk titration, I had a Chemistry background, so that helped a little. My wife would watch me measure the milk and take my dose each night...It was instrumental to have my wife stay with me. She has her own health issues, and I've always took care of her. The tables were reversed and now she was taking care of me. It wasn't easy, she struggled as she's never had anxiety and at 1st couldn't understand why I just didn't tell myself to "get over it". But she fought through it too...it was very hard on her too.

I tapered for 11 months reducing by .001mg a night. I saw an Endocrinologist for my Cortisol levels and he checked them. They were supposed to be no higher than 20, but came back 76. He said let's try again, maybe it was a mistake. The 2nd time came back 426....over 20 times normal. No wonder I was wired everyday, especially in the morning starting at 3am, like clockwork. He initially diagnosed me with Cushing's disease.

Today as I write this I'm 19 months from my last crumb of K. I also tapered off Nexium, which I had been on for 10years for reflux. I take nothing anymore, maybe a Tylenol once a week or so.

Last month my wife and I took an impromptu road trip for 4 days, we went to a concert, ate at some cool places, did horseback riding, hiked in the mountains and went to watch The University of Alabama have their fall football fan day. I'm coaching my grandson's soccer team, playing golf, going to the beach....loving life.

I can actually sit down, and relax!!! I have "clarity" again!!, I see "colors" again.

I've gained back my weight, (maybe too much:))

I reached a point after that 9 months of asking God to take me, that I turned a corner and asked God to help me.

Make it through the next moment, the next hour, the next day....don't give up! Don't let the drug, the evil win!

It seems as though all the diagnoses, except the Drug induced Akathasia, were maybe ALL because of drugs....no Parkinson's, no tardive dyskinesia, no Cushing's, perhaps never even Mesenteric Paniculitis???

I can't say for sure what tomorrow will bring.....but I've been through HELL and made it. There was a time I thought there was NO WAY!!!

HANG IN THERE!

I used to tell my wife when I was at my worst that I was in here somewhere....pointing to my heart. Well I'm here...I really was still in there!

Love to each of you! You can do it!!! I did it, so can you!

 

Things that helped

Keep a journal.... write how you feel, grade your anxiety, how you feel, etc.

You don't notice things when you're in the middle of the forest, but as you journey and read back, you'll see you're making progress.

Distract....everyone says this and it's true. My 5 year old grandson would come by and "play" with me...color, cards, Hot Wheels cars. It helped immensely.

Try to accomplish small things, wash the dishes,  fold clothes, anything.

 

I noticed that during my withdrawal I had extreme feelings, I wanted to die, I hated things like never before, I was so jealous of everything and everybody. I believe the drugs bring out the very worst of you. After making it thru this I'm more patient, more relaxed than I've ever been. I appreciate the small things, I love more, I appreciate everything. I'm at peace, I know based on what I've been through I'm tougher than I ever was.

I hope sharing the tough parts help someone. I used to read the Success Stories wondering sometimes maybe they were made up, maybe the administrators were just posting things to keep us coming back.

I really made it! Woo hoo! You will too!!!

 

Symptoms I struggled with the most....

Akathasia

Insomnia

Anxiety

Depression

Muscle pain (especially neck and shoulder)

Headache

Spasms

Twitching

Hypersalivation (mouth watering so much I would have a pool on my pillow)

Eye pain

Cold intolerent

Crying every day

Could not relax, rest.

Intrusive thoughts (They're not You!)

Mind racing incessantly

Tinnitus

All the other ones too!

 

Except for Tinnitus and some neck pains and headaches they are ALL GONE!

 

SORRY FOR THE LENGTHY SUMMATION BUT HOPE IT HELPS SOMEONE

Prayers and Hope for you all....

Love,

 

B strong

 

This too shall pass....

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BStrong I haven't had a chance to read all the posts.  I'm off all meds except Prilosec, and would love to quit that too.  Feeling strong after my taper and quitting Zoloft.  Would you share how you quit Prevacid? 

 

Runnergirl,

I agree that insomnia is Hell.....I had periods of almost zero sleep for weeks. I get some sleep now, 19 months off everything, but it is broken sleep. I wake normally 3-6 times a night and have to get up to go to the bathroom every time...but I'm getting around 5 hours sleep every night, I'll definitely take it. If this is my new normal, so be it.

I think our CNS was messed with by taking artificial sleep drugs, whether benzos or antidepressants that completely messed with homeostasis. I know with the insomnia, anxiety, etc it certainly makes it almost impossible to have any quality of life whatsoever. I'm glad to count myself as through the worst and feeling hopeful that it only gets better. I'm living again....hallelujah!

I pray for everyone else to turn the corner soon! 💙

 

B strong

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Abby,

I was on nexium for probably the last 10 years...I read while in the throes of my withdrawal that it can change the way things are absorbed in your stomach because of the acid reduction. About the same time I was checked for vitamin D and B12, I was extremely deficient in both. Partly probably not being outside at all because of the agoraphobia, but possibly lack of acidity in the stomach to get vitamins from food.

I decided to get off it, because I also wondered if it affected K absorption. I tried just CT, but that was too severe, so I skipped every 3rd day for a couple weeks, then every other day for 2 weeks then 1 every 3rd day....and I got off it the early part of my K taper. Imo I think it might have helped a little, but I was glad to be done with it nonetheless. My reflux is better than it's been in 10 years. I don't eat 3 hours before bed, and I still haven't had any caffeine since December 2015. No drugs for me except tylenol in almost 20 months.

Good luck and prayers to you!

 

B strong ❤

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Thank you so much!  I've been on prilosec for years and years.  I actually tried to CT it this week and no can do...  I'm going to try the way you did it.  Congrats on 20 months! 

 

Abby,

I was on nexium for probably the last 10 years...I read while in the throes of my withdrawal that it can change the way things are absorbed in your stomach because of the acid reduction. About the same time I was checked for vitamin D and B12, I was extremely deficient in both. Partly probably not being outside at all because of the agoraphobia, but possibly lack of acidity in the stomach to get vitamins from food.

I decided to get off it, because I also wondered if it affected K absorption. I tried just CT, but that was too severe, so I skipped every 3rd day for a couple weeks, then every other day for 2 weeks then 1 every 3rd day....and I got off it the early part of my K taper. Imo I think it might have helped a little, but I was glad to be done with it nonetheless. My reflux is better than it's been in 10 years. I don't eat 3 hours before bed, and I still haven't had any caffeine since December 2015. No drugs for me except tylenol in almost 20 months.

Good luck and prayers to you!

 

B strong ❤

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Hi B Strong  :),

 

It is so great hearing how well you are doing now!!!!  :):thumbsup:  I had tears in my eyes as I read your story and all that you have been through.  Your courage and resilience are amazing and thank you for sharing your success story-I'm sure it will help and inspire many buddies!  I'm so very, very happy for you and your family!

 

Burned Out 

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Hi B Strong  :),

 

It is so great hearing how well you are doing now!!!!  :):thumbsup:  I had tears in my eyes as I read your story and all that you have been through.  Your courage and resilience are amazing and thank you for sharing your success story-I'm sure it will help and inspire many buddies!  I'm so very, very happy for you and your family!

 

Burned Out

 

Burned,

Thanks for the encouragement, now and 2 years ago when we were in the middle of withdrawal. I pray you are doing well yourself and know that we all get better as time goes by.

 

Much love old friend!❤

 

B strong

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For those PM's about the Akathasia....it was totally drug induced. As you get further from the drug you will see some light, eventually. I too thought it would never end. The incessant pacing was horrible, but the 24/7 mind racing, never ever a moment of peace, relaxation or just nothing was unbearable at times.....but I made it! You will too....just try to survive, not for the long term, just for the moment. They start to add up and when you turn and look back months later you will realize you have climbed straight out of hell, you are strong...and you can survive anything!

Love to you all,

 

Prayers for your healing! Don't ever lose HOPE....without hope we have nothing.

 

B strong

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I've had no caffeine since December 2015. Tried taking vitamin D because of very low # after staying inside 9 months with the agoraphobia, but they revved me up too much. Had to stop them. Gave myself B12 injections because of deficiencies there also. Once I got off of Nexium I think that helped my deficiencies get back towards normal, because of absorption.

I had to have a heart Catheter after severe palpitations and chest pain. They had me wear a holter monitor for a few days and was having many PVC's and PAC's...luckily I didn't need any stents. They said there wasn't any heart damage which helped mentally to get through all the palpitations. Knowing my heart was ok was big. Now my BP runs 116/84.

Health anxiety was big for me with so many diagnoses, but as the symptoms eventually dropped one by one....practically everything I experienced was drug induced.

Every physical symptom drove my mind spiraling out of control, which drove the anxiety to even higher levels. The initial "chemical" anxiety which was caused by the drugs, was always constant and unrelenting. At times it was hard to differentiate between akathasia and anxiety.

But it does end!

You do get better....

Just keep surviving, every small victory is major!

Rejoice in the small victories and keep moving.

 

Love to you guys,👍

❤❤❤

 

B strong

 

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I've had no caffeine since December 2015. Tried taking vitamin D because of very low # after staying inside 9 months with the agoraphobia, but they revved me up too much. Had to stop them. Gave myself B12 injections because of deficiencies there also. Once I got off of Nexium I think that helped my deficiencies get back towards normal, because of absorption.

I had to have a heart Catheter after severe palpitations and chest pain. They had me wear a holter monitor for a few days and was having many PVC's and PAC's...luckily I didn't need any stents. They said there wasn't any heart damage which helped mentally to get through all the palpitations. Knowing my heart was ok was big. Now my BP runs 116/84.

Health anxiety was big for me with so many diagnoses, but as the symptoms eventually dropped one by one....practically everything I experienced was drug induced.

Every physical symptom drove my mind spiraling out of control, which drove the anxiety to even higher levels. The initial "chemical" anxiety which was caused by the drugs, was always constant and unrelenting. At times it was hard to differentiate between akathasia and anxiety.

But it does end!

You do get better....

Just keep surviving, every small victory is major!

Rejoice in the small victories and keep moving.

 

Love to you guys,👍

❤❤❤

 

B strong

 

Thank you b strong, you always share things that help .........Mary :smitten: :smitten:

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Wow- this is quite an amazing success story! I thought I was the only one with so many physical sxs along with the health anxiety and chemical anxiety. Me too- every physical thing sets my mind on a downward spiral. It's awful. I am really inspired by your story and can't believe how many diagnoses you had and it was all iatrogenic. And how you are off all meds now- amazing! I am still tapering and can't wait to get done and healed. You are proof it can and will happen. The day to day is so rough. I kept a sx log for a long time but haven't for the last 6 mo now. I may try a journal like you said bc I hate eating each sx- I hate seeing the sx words written on the paper even. It is totally hard to see any progress when you're in the midst of it- esp when in a wave. I can relate to so much of what you bravely wrote- the sx's, The fear, the family not believing, friends disappearing, health anxiety, jealousy, etc. thank you for your honest report and congrats on your awesome success!!! Yes, you are a hero and I can't thank you enough for this ray of hope!
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One question- during your MT, did you ever hold? And if you did, do you think it helped? Did you change your rate at all as you got lower?

Thanks!

 

libr,

I tried holding once for about 5 days, but didn't notice really any better or worse for that matter. I stayed pretty consistent at .001mg for a good bit but went to .002 a few times, sometimes it work fine for a few days, sometimes it felt like too much...so I would go back to the .001. The main thing is trust yourself. Nothing wrong with making adjustments based on your symptoms but I believe for the most part you should keep moving forward, it's not going to be perfect but every mg you cut your done with forever! A good bit of it is trusting yourself even through the bad days. Very many times in the midst of the taper I would feel 2 steps forward 3 steps back....but as you keep going you can look back and see the map of your journey. That is why I recommend a journal. It totally helped me immensely and there were times I could consult it to make decisions moving forward.

Thanks for your kind words on your previous post too. We are all heroes when we make it through this hell. When you have tough times moving forward you can rely on where you came from and actually feel stronger than you ever thought!

 

Prayers to you, :thumbsup:

 

B strong

 

 

 

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I've had no caffeine since December 2015. Tried taking vitamin D because of very low # after staying inside 9 months with the agoraphobia, but they revved me up too much. Had to stop them. Gave myself B12 injections because of deficiencies there also. Once I got off of Nexium I think that helped my deficiencies get back towards normal, because of absorption.

I had to have a heart Catheter after severe palpitations and chest pain. They had me wear a holter monitor for a few days and was having many PVC's and PAC's...luckily I didn't need any stents. They said there wasn't any heart damage which helped mentally to get through all the palpitations. Knowing my heart was ok was big. Now my BP runs 116/84.

Health anxiety was big for me with so many diagnoses, but as the symptoms eventually dropped one by one....practically everything I experienced was drug induced.

Every physical symptom drove my mind spiraling out of control, which drove the anxiety to even higher levels. The initial "chemical" anxiety which was caused by the drugs, was always constant and unrelenting. At times it was hard to differentiate between akathasia and anxiety.

But it does end!

You do get better....

Just keep surviving, every small victory is major!

Rejoice in the small victories and keep moving.

 

Love to you guys,👍

❤❤❤

 

B strong

 

thanks so much B strong.  Every post you posted is so helpful

 

Thanks for them  very inspiring    :thumbsup: 

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Not sure if you mentioned this but did you stay at dosing once a day for your whole taper?

Libr,

Yes always once a day during taper at night for me. I thought about dividing it up at one point, but was afraid it it didn't work well for me it might mess me up more. I know some take it 3 times per day, this may help some with interdose withdrawal. There's always thoughts that come to mind and the dreadful "what ifs"....but the best thing is what YOU believe and try to be positive. My mind was my worst enemy during that time so try not to overanalyze everything (like I did)

 

Prayers to you for healing,

 

B strong

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