looking for support from unusual symtoms

I have been reading stories on benzo buddies for awhile and thought it was time to say hello.

I have been taking .5 of clonezapam on and off for three years before becoming dependent on it from february 2019.. I have had tinnitus since 2001 (noise induced) that was never a problem for me I habituated to it and never ever heard it... Then in 2011 I started getting a screech monthly in my left ear it only lasted a few days and it was suggested a use serapax to ease it. I believe this was due to peri menapause and hormonal fluctuations... I Hardly ever used it so everything was ok....Then in 2016 I needed dental work done for which I have anxiety and it was suggested I try clonezapam as it was longer acting so my Dr said yes it was safe to take as needed and I could alternate between using this and the serapax if needed for my tinnitus....Well I did not need it for my tinnitus but I realised this drug helped my peri menopause anxiety and insomnia so I started taking it a lot more.... I am a retired nurse and should of known better than to take clonezapam but I thought it was safer than serapax as it was used to treat epilepsy here in Australia.  I never  had any dealings with this drug before  and my mistake I did not read up on it either. I am usually very careful with what I take...  I was thrown into CT of February this year with Drs denying such a low dose could be causing me so many issues. I think an antibiotic threw me into acute withdrawal I did not know I was dependent on this drug.... I had constant massive tinnitus after taking second antibiotic, I reached for the clonaze for another three week period it took the screeching away but wore off fast.  Then I got burning skin, jerking limbs at night, total insomnia, high BP anxiety, Panic, strange buzzing sound in brain as well as ears, sore jaw, sinus pain, bladder issues....ect ect...ended up in ER told it was just anxiety go home and cease taking pills. My own Dr agreed saying its just anxiety It cant be the clonaze it is such a low dose and he told me do not take it anymore things will settle....Well they did not it got worse much worse....Luckily I had enough sense to track down an addiction specialist for benzo withdrawal but this was 5 weeks after I was suffering and only taking .25 of clonaze as I was told not to give into the drug by two ER drs and my own Dr....When I saw the specialist he immediately put me on valium he tried me at 10mg I was too sedated so he said ok 8mg but I only ever transferred to six ....I am now down to 3.5 droping to 3mg on Monday but my symptoms of constant loud tinnitus and brain buzzing and head noises are disturbing me the worst....I have had many other symptoms  that still bother me but I am losing hope as I think I might have permanent brain damage....I have not heard of many others suffering from tinnitus and brain buzzing noises at the same time!! Plus my hearing is distorted water to me sounds like my ears are frying.....I have a very supportive family who tell me all the time do not lose hope but after years of living with tinnitus and habituating to it and looking after my ears, this loud intrusive noise I now hear is too much to cope with at times.... Gee I feel such an idiot I did this too myself.... I had my life in order and I have ruined it over a pill to sleep.....I feel like I have already killed myself the only difference is I am still breathing.... Feeling like healing will never take place but I look into my grandchildrens faces and my granddaughter tells me grandma I am starting school next year and you will have to take me as mum has to work....We live close to each other so I have to stay positive for my family but this drug is so evil!!!!! it makes it very hard... 

Hello renniw64 Welcome to Benzobuddies!

We are very glad you joined our community. I am sorry you were forced into cold turkey, I am glad you made a decision to taper off these drugs!  You say you had the tinnitus prior to benzos, my tinnitus was a benzo withdrawal symptom. I also had head buzzing, creaking sounds and various other strange head symptoms.  It’s great that your family are supportive, It will get better eventually.   

We can help you with support, encouragement and taper/withdrawal information.  In general it’s advised to cut your daily dose by somewhere between 5% and 10% every 10 - 14 days.  It’s okay to go slower than this, whatever feels comfortable, the aim is to try to keep symptoms manageable.

I would suggest that you familiarise yourself with the Ashton Manual, It is a great resource for understanding the effect benzo’s have on our body.  It provides tapering and withdrawal information and includes a list of common symptoms 

You will find some very valuable support and information on the forum.  Our members are happy to share their personal experiences with you and support you.. Please feel free to browse the boards and post questions to any of the dedicated threads.

I'll leave you a few links:

The Ashton Manual. 

Withdrawal Support

General Taper Plans

Please take time to add a signature (history of meds/doses etc) it will help members give you relevant advice.  Go to the top of the page and select PROFILE then choose forum profile then insert drug history into the text box and remember to click change profile

Welcome aboard

Magrita

renniw64,

This is the only way I can reply to you. I hope you checked back on my new SS and saw my message there.

What you are experiencing is totally normal for benzo wd.

Here are the basics:

Benzos work  on the fear center of your brain, the amygdala, a walnut sized part of your brain. Benzos "damp" it down, reducing anxiety and helping you feel more relaxed in order to sleep. But over time, benzos begin to damage that part, plus probably other parts of your brain. And when someone goes off benzos by ANY way, either taper or CT, your brain OVER- reacts, causing an endless list of weird and painful symptoms of withdrawal. That is what benzo wd is, your brain trying to recover its normal chemicals, hormones, pathways, etc. And it WILL heal itself without any help from you. As long as you don't take more benzos and avoid other drugs like SSRIs, and narcotics, you will heal just fine. It just takes time and determination to see this through. Some people just take longer to heal, and no one knows why. Took me just over three years, but OH! What a wonderful difference I felt. Gone was my old depression, most of my old anxiety. I again had drive and determination to get things done. What a wonderful GIFT getting off benzos was for me.

You can do this. I am 69 years old and I did it. And I am not some sort of Superwoman. Hardly. A normal, flawed woman who has lived a long time and learned a couple things along the way.

east

Welcome RenniW64:

I believe you are correct in thinking the antibiotic caused a severe reaction as I have experienced this twice myself over the past 7 years before I realized I

was dependent on clonazepam.  The first episode, while having taken 2 mg of C. daily for 7 years, I was put on amoxicillin and that put me in a clinic with severe chills and a stiff neck, lesions on my scalp, imbalance issues, interocular pressure, photophobia, phonophobia and the beginning of a rash on my arms and legs that has lasted until I just got  off Clonazepam. I was diagnosed with spinal meningitis, incorrectly.  Those issues faded as I continued to take C and still did not know the connection.  Then in 2017, 5 years after the first episode and then was given rifampin and doxycycline and had a heart attack, had afib and pericarditis.  It took me

two more years to finally discover  that the C had been the cause for all of these symptoms.

My symptoms didn't start reversing until I started my taper  off of this drug but have not doubt that at the exact time and the only time I took an antibiotic, I

had severe side  effects.  Whether this initiated withdrawal or whether it was just a reaction, I'll never know. I have been off the C. for 2 1/2 months and am

progressively getting better.  I still have my main symptom and waxes and wanes but is always there, and I do feel it resolving. So many, probably 30 other symptoms have disappeared.  I might be the only person on this forum that encourages you to get this drug out  of your system as fast as is comfortable so that you can begin healing. 

I consider you a short term user, mostly since February,  and I truly believe that since I was on it for so long, that it will take a longer period of time for me to heal than, I hope, you.  The tinnitus is  the only symptom that you have that I did not experience but I guess my trade out was this full time pressure type headache on mostly my left side. The psychological symptoms that I have suffered are like yours but have faded during the last part of my taper and since I finished my taper also. 

I want to offer encouragement that you will heal and that your symptoms are not permanent.  I am 69 and realize that my brain might take a little longer to heal

but know it's an amazing organ.  I am, again, feeling better every week and I have to say, much quicker than I expected.

I wish you well and am sending prayers for a fast recovery.

Klonkar

renni, meet another nurse who became addicted to benzos. I graduated from Nursing School in 1982. I worked for 17 years in two hospitals and loved every minute of it,. but in that journey I started dabbling in taking benzos for what I thought was chronic insomnia. I am being real honest here, no reason now to lie. I began taking whatever benzos were in the med cart, because back then they were not accounted for. I am deeply ashamed of this now. This behavior got me into a world of trouble over thirty long years. Because I did not know tolerance withdrawal  was possible, I started having a lot of odd and unpleasant symptoms. I sought advice from specialists. I was told I had Fibromyalgia, CFS and might even have M.S. Or Parkinson's. I began falling.... a lot.

Cut to the end of my story. My PMD finally figured out my psych drugs might be causing my problems so he called the psych doc who prescribed my benzos for the last q12 years. They cut me off...totally. I was forced to go CT off two benzos and 2 SSRIs. A recipe for disaster, huh?

Okay. My wd was awful, I hallucinated for a month and then had the most awful first year off. The ONLY reason I did not reinstate was my deep paranoia about doctors in general. I figured I'd rather DIE than see a doctor back then. I just clung to life and slowly began the horrible journey back to some form of health.

During my many hospital stays for injuries only due to benzos (broken femur for one) I was given IV Levaquin. That threw me into rapid withdrawal. That class of antibiotics can do this. That happened to me three times. My PMD refused to prescribe my benzos while in patient, so you can only imagine the total mess I was back then.

Cut forward to now. It took me just over 3 years to heal from this mess. But I sure did heal. OH what a HUGE difference between who I was then and who I am now! Enormous! I am now healthy for 69, happy, no longer depressed and no longer anxious. The sad part is that this has happened to countless people out there who never find there way to BB, and just suffer without any relief.

It has been 7 years now, and I never regret going what I went through. I learned so much and grew so much and ALL of this because I GOT OFF BENZOS.

Never give up.'