This is how I´m doing after 20 years on Benzos and a cold turkey

[[Su...]]

Here it is now, my success story. I am off from Benzodiazepines since Dezember 3, 2020. I was prescribed the Benzos after a breakup with an ex-boyfriend in the year ⁓2000 and stayed on it for almost 20 years.

I am not completely healed. I still suffer from insomnia and heart palpitations. I will describe what led to the situation and how I got my health back. You can skip that part and go to the withdrawal down below.

 

Fluoroquinolones

A reason why I got in this situation was that I was prescribed Fluoroquinolone antibiotics as a teenager when I was 16 years old for approximately 2 years. I had the flu when I was prescribed it the first time. It was not so bad, but I wanted to go out and didn´t rest. The result was, that I got constant tonsilitis. From all the antibiotics afterward, I got allergies and histamine intolerance, something I only learned about 20 years later. I also got a serious salmonella infection and afterward, my health got really bad. The histamine intolerance exploded. The worst symptom was constant itching throat and I went to the doctor more often and only came back with another prescription of Fluoroquinolones for throat infection. I got so allergic to everything that I got from showering with water only big bumps all over my body which itched and looked like insect bites. They lasted about 20 minutes after showering with water only without soap or anything. But the worst symptom I had was the constant inside itching throat.

From the Fluoroquinolones and the histamine interolerance also I got panic attacks. I am an anxious person, but I never had panic attacks without reason before. I also got neuropathy in my legs and I didn´t know it was from the Fluoroquinolones.

I recovered from the histamine intolerance and especially from the constant itching throat only in the year 2019. I think it was candida overgrowth in the intestine that caused the problem.

I stopped eating all carbs and bread also. I went on a whole food diet. I took baking soda and zeolite several times a day. First of all the baking soda increased the histamine symptoms. I read online that was the sign that fungus really was the problem. I continued with the diet, baking soda and zeolite until the end 2020. Maybe after a year, I found that I didn´t suffer anymore from the itching throat. I also had asthma episodes at night, which is also gone. It is all gone and never came back.

 

2007 Withdrawal

I tried to stop the Benzos in 2007, after I was about 7 years on the drug. I did a slow taper. I switched from lorazapam to diazapam. The lorazepam I could only taper up. It was possible to taper the diazepam down. I switched right away because the doctor told me that was no problem. It was a problem though. I got nightmares like from a horror movie. That lasted at least 3 months very bad every night.

In the end, I was at maybe 2,5 mg of Diazepam for maybe three or four weeks. I reinstated it after I met a neighbor in a supermarket and thought my condition with anxiety was too bad. I didn´t know that the Benzos cause anxiety, especially in this low dose. I didn´t know that it would get better once I would be completely off the medication! I wish I had known.

I stayed on diazepam now insted of lorezapam. But the diazepam started a symptom I didn´t notice. It took away all my willpower and hope to change anything about my bad situation. It also took away my enterprising spirit. I got that and my energy back right away when I got off the medication in 2020 and noticed what I had lost throughout the years.

 

2020 Withdrawal

When the pandemic started in 2020, I decided over the weekend to make another serious attempt to stop the Benzos. I tried it throughout the years constantly without success and decided to stay on the lowest possible dose. That was around 20mg.

I went swimming on a weekend in 2020, and it was declared that after that weekend on a Monday in Germany, everything would be closed because of the Coronavirus. I thought that was my chance! I would have the peace for a withdrawal. I am self-employed and I didn´t have any help from anyone.

The pandemic helped because you could hide behind a mask and had to stay away from everyone. Everything had to be done by telephone. Even the visits to the shrink. I wouldn´t have been able to sit in a waiting room with these symptoms. During the winter of 2020/21 it was even forbidden to leave the house by law without an important reason.

My dose was through the years around 20 mg. The month before I stopped it was between 20-30mg.

On Monday, November 2, 2020 I started my „taper“. In the first week, I reduced to 10mg. In the second week, I reduced to 5mg in the morning and 2,5mg in the evening. In the third week, I reduced to 5mg in the morning. In the fourth week, I tried to reduce it to 2,5mg in the morning and maybe 2,5mg in the evening but I couldn´t take it anymore. The 2,5mg caused extreme panic or I can´t describe the feeling. I wanted to know how bad it would get when I would be completely off. Because I thought then would set in the worst withdrawal. To my surprise it didn´t get any worse when I stopped completely. In fact, it even got better. The symptom I got when I stopped completely was vertigo so bad that I couldn´t walk straight. I think that was when my brain got very damaged.

I didn´t have any help and I had to do the groceries during my withdrawal which was a problem. I solved that problem by doing the groceries very early in the morning when stores opened. So I avoided crowds and standing in line which I couldn´t do.

I reinstated on December 1, 2020 10mg and on the second December 2020 5mg Diazepam because I had to drive with my car to get it TÜV-certified. I had no one else to do it and I was scared that my situation would not improve and I didn´t know what to do. I didn´t want to drive it, but I couldn´t park it without TÜV anywhere.

After I was off of the Benzos on December 3, 2020 I never reinstated again.

Symptoms and recovery

Symptoms I had from diazepam that I was not aware of

It took away all my willpower and hope to change anything about my bad situation. Especially it took away my enterprising spirit. I was not aware of this symptom during the years I took it.  My enterprising spirit came back directly after I was off from diazepam and I noticed what I had lost before. I think the lorazepam didn´t have such an impact on my enterprising spirit.
Once I was off from diazepam, suddenly the arthrosis problems I had especially in my toes were gone. That was unbelievable. I was so bad the years before that I had constant issues with the pain. It is completely gone and never came back.
I also had deep black circles under my eyes. I never knew it was from the diazepam. I even looked better during the first years after I was off from the medication with the total insomnia I had, than the years I slept with the diazepam.
My hair had thinned out the years I was on diazepam. I also didn´t notice it, but in month 14 I noticed what beautiful hair I now have, feels like double as much as before.

Withdrawal symptoms and recovery

Vertigo

I got vertigo so bad that I couldn´t walk straight and it took years to get better.

Polyneuropathy

During my taper started a tingling in my arms and legs mostly. About 6 weeks after I had stopped the benzos completely, it increased to a burning like my skin was on fire all over my body. It was a pain like an abrasive burn. This burning pain from the Polyneuropathy started in my chest area and spread everywhere.

I put Wick VapoRub on my skin, arms and legs mostly, every 20 minutes. It helped with the pain. I spent all evenings for at least the first year to massage my skin to be able to stand the pain. The pain let up once a bit after 3 months. But I can´t really say when it got better. For the first years, I was in constant pain. The only thing I could do was walk all day.

I noticed at the end of year 3 that the pain was gone, but that was not the case in the middle of year 3 yet. I read books about it in year 3 and was desperate. One book said it would never go away, you can only avoid such injury. I read another book that stated most patients recover from Polyneuropathy. I could not stand any clothes on my skin for the first years. My skin also felt wet. I could not stand socks on my legs. That symptom was gone at the end of year 3.

Diarrhea

I got water Diarrhea that lasted 2 years straight. I recovered from it at the end of year 2 by fasting. I did one meal a day only. I also got on the Carnivore diet to heal my gut. I watched videos about fasting on YouTube. Dr. Berg´s videos helped me a lot, although I don´t do keto anymore. I think it increases the problem with my heart palpitations.

Weight gain

My weight increased. After a year I had 10kg more. That symptom has not yet disappeared. I was underweight before and never had any weight issues.

Throwing up

I had to throw up constantly for more than 2 years. I don´t know why. Maybe because of too much stomach acid. Stomach acid is increased by too much insulin in the body. I read that you have too much insulin if you don´t have enough growth hormone. I think that is the case because I still have not enough serotonin because I still have the inability to stay asleep which is a lack of serotonin.

Vision problems

I also have vision problems and red eyes which is a sign of too much insulin and I have low blood sugar problems and weight gain which would be explained by too much insulin.

I went to my general practitioner in August 2024. All my blood tests came back normal. They didn´t take insulin but C-Peptid which was in the low normal range. They explained to me, that because of that I wouldn´t have high insulin. I don´t know.

Muscles

My muscles are not the way they were before. Especially the bladder muscle is very weak.

Hypoglycemia

My blood sugar is lower than before withdrawal. I never had problems with low blood sugar before.

Heart palpitations

I got heart palpitations and I don´t mean anxiety. It is spasms in my chest, the other chest muscles are also involved. I think it is from Polyneuropathy, but could be from insomnia also.

I get heart palpitations from eating too much salt, from low blood sugar, from Vitamin D and from protein powder.

I did take high doses of vitamin D before withdrawal and it never gave me any heart palpitations. Not I get tense muscles in my chest from it and heart palpitations.

Insomnia

I didn´t sleep for 22 months straight. I took Doxepin for the first 22 months. It saved my life. It wouldn´t have been possible to stand insomnia without it.

In month 22, I suddenly started to sleep for 2 hours at night. I didn´t „sleep“ before because I never woke up or noticed to fall asleep at all.

I could sleep at night after month 22 with one-half of Doxylamin and one-half of Diphenhydramin. I did a slow taper from the Doxepin until November 2022 without problems. I was on 25-15mg only.

In August 2023, that was at the end of year 3, I could suddenly sleep every night in 1 or 2-hour chunks, only by taking valerian, 5-thp and magnesium. This window lasted 2 weeks only.

I signed up on Tinder which caused almost total insomnia again. I had the second window in January 2024.

In December 2023, at the end of year 3, I did 14 days of fasting. That increases serotonin. I could sleep on some nights without taking one-half of Doxylamin and Diphenhydramine afterward.

I stopped the Valerian and all supplements that I took on and off in July 2024 at 3,5 years. I sleep now most nights without taking anything. That was never possible before.

I can´t take any melatonin. It helps for one night but gives me total insomnia on the next. I take 50mg of 5-Htp when I can´t fall asleep.

I slept in 1-hour chunks mostly for 3,5 years. My sleep constantly gets better though. This month I slept maybe for 1 hour in the beginning, then 3 hours straight. I can´t sleep longer than 5,5 hours altogether.

My only remaining problem is now the insomnia and heart palpitations.

 

Edited September 12 by [Su...]

[[Ro...]]

Wow, what a story!  I like how you tried various things to see how you could improve.  I hope your sleep becomes fully restored.  Thank you for sharing.

[[fa...]]

I don't understand are heart and insomnia issues all that are left, or do you still have neuropathy and muscle issues?  

 

I imagine the longer you are off sleep meds the better your sleep will get?

[[Rh...]]

Wow, you have been through it for sure! I am glad to read things have slowly improved for you, which seems the case in WD.

I am sure all your remaining symptoms will also clear with more time under your belt…

Thank you for sharing your story, we need these to keep pushing forward!

[[Su...]]

@[fa...] I have no pain anymore from the neuropathy. It is gone since the end of year 3. But I think my muscles and nerves must be still in recovery from the damage because of the weak bladder muscle. I read that you can have heart palpitations because of neuropathy.
The only problems I have left are heart palpitations and insomnia. The insomnia gets better. Since the summer of this year (at 3,5 years) I can now go to bed at midnight and get up at 9 in the morning without taking anything for sleep on many days. It was not possible before. But I still have very broken sleep.

[[fa...]]

32 minutes ago, [[S...] said:

@[fa...] I have no pain anymore from the neuropathy. It is gone since the end of year 3. But I think my muscles and nerves must be still in recovery from the damage because of the weak bladder muscle. I read that you can have heart palpitations because of neuropathy.
The only problems I have left are heart palpitations and insomnia. The insomnia gets better. Since the summer of this year (at 3,5 years) I can now go to bed at midnight and get up at 9 in the morning without taking anything for sleep on many days. It was not possible before. But I still have very broken sleep.

You have made a lot of progress in a year. Sounds lime you are on an upward trajectory to heal. 

[[fa...]]

Are you at the point you can take vitamins or supements?

[[Su...]]

@[fa...] Thank you. In hindsight, I think healed all the years, but I didn´t notice it. For the neuropathy, I was very worried in the middle of the third year. I borrowed a lot of books about polyneuropathy from the library at this time and had no idea it would be gone at the end of the year. I can´t even say since when it is gone, it must have faded. In winter of the third year, I suddenly noticed that I didn´t have the problem with the wet feeling of the clothes on my skin anymore and the problem with the socks on my legs had disappeared.
For the insomnia I had no change for the first 22 month at all. Total insomnia for 2 years! I only knew that I must have slept sometimes because I remembered that I had dreamed. But I never woke up from my sleep. I only tried to lie down at night to relax a bit and tried not to freak out. I went for weeks with no noticeable sleep. 

[[ma...]]

First, thank you for sharing. Truly a success story, overcoming all the insurmountable and enduring all the unbearable.I am almost 30 months along, and although I have been sleeping for two hours a day for a few days, I have spent about a month sleeping 5 hours a day. I am now facing a setback. Insomnia is the most serious symptom right now. I am sure you will be 100% soon, let us know. Thanks!!

[[Ro...]]

GOOD JOB! Congrats 

[[...]]

Wow! Amazing story of triumph! I am so glad you are ok and here to tell the tale. Very inspiring ty for sharing! If you had it to do over again would you have done a slower taper ? Do you feel that it was more severe due to your persistence to just get off ? Or do you feel that outcome may have been the same for you regardless ? I really commend you for going through all that alone! That had to be so difficult.. I'm truly glad you hung in there for that long through that much suffering and came back to share with us it is possible for us too! ❤️ I hope you find joy and healing in the present and future you have earned every bit of it 🙏