In need of hope for tolerance 🍀

[[Mo...]]

Dear members,

I’m new here and in desperate need for hope regarding tolerance.

I’m a 49 year old single mother of 2 teenagers.

I have no history of mental illness. I started experiencing severe menopausal symptoms after a hysterectomy in August last year. 2 weeks after surgery I stopped sleeping completely, got anxiety and panic attacks. 

In order to be able to tolerate the hormone therapy I was starting, and to manage my severe symptoms I was prescribed temezapam for sleep and diazepam, as needed in october.

I used the temezapam from October untill January this year. The diazepam I took as needed, some days none, at the most 10-12mg, this happened about 5 times, regular dose was around 5mg a day, every other day or so. Having no! idea of the potential harm of this drug

Once hormone therapy seemed to start working, I stopper taking the diazepam in January. Only to find after 5 days that I couldn’t, my heart was racing, I was shaking, nauseous, so I went back on and asked a psychiatrist for help in getting off.

She first ‘stabilised’ me on 5mg daily stating that she had helped many people of, it wouldn’t be a problem.

In February and March I went down from 5mg to 2mg over a period of 5 weeks (way too fast I know now).

Because I was feeling quite bad, and we didn’t know whether it was due to the raise in estrogen, or lowering of diazepam it was decided I would stay on the 2mg until I was stable, and then get rid of the diazepam.

But I never stabilized. I developed strange symptoms, derealization, back & neck pains, night terrors. The gyno said it couldn’t be the estrogen, but the psychiatrist said it couldn’t be the diazepam, as it had been weeks since my last cut.

Eventually I started to feel a little better around May. I recorded myself whenever I truly felt like me again (in hindsight I feel like I was experiencing ‘windows’ on 2mg). But then June came and I started to get worse, the most terrible head pressure, panic attacks, insomnia…

I went and researched online and discovered it must! be the diazepam. No one believed me. I found a Dutch site, the suggested I try and updose to see if I could stabilize and taper slowly from there. I tried it, but ‘half-heartedly’ I think now, as I truly didn’t want to go back up… It escalated, I got severe akathisia, and rage in a matter of 2 days.

I called emergency mental health services. The offered me lorazepam which I refused. A ‘benzo specialist doctor’ suggested I stop the 2mg ct and take 2.5mg olanzapine to combat the akathisia.

In the end I ended up not ct, bit did accept the olanzapine (now regretting it, but desperate bcs of the akathisia).

I did stabilise, I still had symptoms, but the akathisia went away and I started a micro-taper. I reduced 0.02mg every day.

I started the micro taper July 1st and worked my way down from 2mg to 0.81mg in 10 weeks.

Since last week, things started to go wrong again. The akathisia came back in a milder form, the head pressure also came back…

I realize now that my micro taper was probably too fast still. I have held now for 7 days and am not improving.

I made all the choices I made to stay ‘functional’ for my teens, but I am no longer…

I believe I became tolerant while being on the 2mg somewhere between May and June…

My questions are: Is there hope for tolerant people? Are there success stories of people becoming tolerant and yet making a full recovery?

Second, what would you guys do now. The worse I get, the more I want to just jump off at 0.81mg. But I fear this will make me so much worse. Just yesterday I thought I could continue a slow taper, but today I feel I can’t stand looking at 5 more months of this, knowing that the big blow will probably still come once I jump at 0.25mg

Any and all advice, but mostly some reassurance that people in tolerance also heal is very, very welcome. 

Main symptoms atm are insomnia, electricity through body, pins and needles, head pressure, inner restlessness, intrusive thoughts and mild akathisia (compared to how it was July 1st).

I am willing to fight, and expect it to be long and hard, I just need to hear that you have known people in tolerance who have healed…

I want to stay functional for my teens, I want to see them grow up, I want my life back!

Thank you so much!

Mom of teenagers

 

 

Edited September 14 by [Mo...]

[[Re...]]

Hello @[Mo...], Welcome to BenzoBuddies, 

I am glad you joined the Forum, 

I am so sorry for what has been happening to you, I have had the same issue with benzodiazepine withdrawal not knowing what was going on. The symptoms you have been experiencing are almost identical to mine and the many of our members' - these are common experiences after over rapid cessation of benzodiazepines. 

I understand you want to get off the drug and continue with the reduction, I did the same. However, you are wiser than I was as you registered on the forum. Like me, you have been reducing too fast and your central nervous system has yet to accomodate to these changes. You have most likely been experiencing the classic "windows" and "waves" pattern of our recovery as well. 

I understand that you have responsibilities and you need to remain functional. To avoid possible worsening of these symptoms, I would at least hold this dose, but I would also consider upping my dose to a previous amount where I felt at least acceptable and remain functional. Is there a specific reason why you need to get off this medication so fast?  We usually recommend a symptom led, slow taper, reducing not more than 5-10% every few weeks,  decreasing the taper rate if needed. After stabilisation, you could continue to taper with a rate you find comfortable.

I assure you that you will recover and you will get through this! We have many, many members out there living life, we also have a wonderful Success Story section with many thousands of entries. 

Let us know how we can help you, 

Take care, 

RR

 

[[Mo...]]

29 minutes ago, [[R...] said:

Hello @[Mo...], Welcome to BenzoBuddies, 

I am glad you joined the Forum, 

I am so sorry for what has been happening to you, I have had the same issue with benzodiazepine withdrawal not knowing what was going on. The symptoms you have been experiencing are almost identical to mine and the many of our members' - these are common experiences after over rapid cessation of benzodiazepines. 

I understand you want to get off the drug and continue with the reduction, I did the same. However, you are wiser than I was as you registered on the forum. Like me, you have been reducing too fast and your central nervous system has yet to accomodate to these changes. You have most likely been experiencing the classic "windows" and "waves" pattern of our recovery as well. 

I understand that you have responsibilities and you need to remain functional. To avoid possible worsening of these symptoms, I would at least hold this dose, but I would also consider upping my dose to a previous amount where I felt at least acceptable and remain functional. Is there a specific reason why you need to get off this medication so fast?  We usually recommend a symptom led, slow taper, reducing not more than 5-10% every few weeks,  decreasing the taper rate if needed. After stabilisation, you could continue to taper with a rate you find comfortable.

I assure you that you will recover and you will get through this! We have many, many members out there living life, we also have a wonderful Success Story section with many thousands of entries. 

Let us know how we can help you, 

Take care, 

RR

Thank you so much!

My main hurry is that I feel this drug is making me so sick. 

I honestly wouldn’t know at what dose I still felt reasonably ok…

When I landed on 2mg at the end of March it was hell at first, the symptoms were different from week to week, I seemed to get windows in May, but from mid June onwards things started to get worse. 

I feel I improved as I started to taper further (even though I suspect the olanzapine probably helped)…

I have started to feel worse again after my last set of reductions, am now at 0.8mg, but would I feel better at 0.9mg, I don’t know?

Is there a risk in going back up to eg 0.9mg? 

Could I feel worse (and what would that mean)? What if I stay exactly the same?

I think I’m in a hurry to get my life back and I feel that I can only start healing once I reach zero…

I’ve been holding for 7 days and I seem to be getting worse quickly (the head pressure and the mild akathisia), do you truly think it might improve if I hold for longer…

The inner restlessness is what is so hard to deal with (I can take the pain etc.).

You are asking me such difficult, but important questions, and I can’t be sure of the answers…

Did you jump at a high dose, or ‘rush to the finish line’?

Thank you so much for being there and asking these important questions 🍀

Edited September 14 by [Mo...]

[[Es...]]

@[Mo...]

Welcome to Benzobuddies. I'm also a Mom of a teenager, although my teenager is a 13 years old Kitty. The love of my life. I have never had kids by choice. But I understand the Love of a Mother, cause my Kitty is like a Daughter to me. Only we have this lethal verdict. She has gotten mostly 1-3 years to live, cause she's a purebred cat. Exotic Shorthair.

I also need to remain functional for her and hormones have always been the bane of my existence. Somewhere in my late thirties I was put on a hormonal BCP, not only for contraception purposes, but mostly cause of a host of other hormonal problems. I'm now more or less your age and probs have entered perimenopause. My fear of HTZ is all-consuming. I avoid gynos like plague. I can get my hormonal BCP from my dermatologist, but she keeps encouraging me to try HTZ. My half sister says that HTZ saved her life. She is also on benzos and is very much functional.

I'm tapering diazepam again. For the fourth time in my life. I have in perspective an indefinite hold, cause my mental issues are such that the diazepam seems to be the med of choice. I can tell you with 100% certainty as far as I'm concerned. One can regularly take small amounts of BZD and remain functional. But it's a process of constant harm reduction. Non stop monitoring the dosage and sxs. Possibly adding another adjunct medication, depending on the type of mental issues you experience.

My chief problems are still insomnia and anxiety. Benzos do alleviate both to a certain degree, but I'm sure I have developed tolerance a long long time ago. So I'm also looking for alternative, natural sources of treatment. Head pressure is serious. Do you measure your BP? I've been taking an AD for head pressure for years. The head pressure could be the benzo's sxs. I agree with @[Re...] that upping the dose is a sensible possibility here. Still, all this has to be discussed with a doctor. 2 mg diazepam daily is not a hefty dose.

I am equally on an AD which helps me to function. So benzos are really secondary. I must stay consistent with my AD as it  helps at least as much as benzos. Or maybe much more.

I am wishing you all the best and keep following this thread for updates🤍

Paula

Edited September 14 by [Es...]

[[Mo...]]

Thank you Paula. If I were able to tolerate the diazepam I would have no problem going back up a little and slowly tapering from there… The point is, the symptoms are crippling, the akathisia is making it impossible for me to function atm. I cannot sit still or lie down, I have to keep moving, keep walking… I cannot take care of my children like this…

[[Mo...]]

51 minutes ago, [[R...] said:

Hello @[Mo...], Welcome to BenzoBuddies, 

I am glad you joined the Forum, 

I am so sorry for what has been happening to you, I have had the same issue with benzodiazepine withdrawal not knowing what was going on. The symptoms you have been experiencing are almost identical to mine and the many of our members' - these are common experiences after over rapid cessation of benzodiazepines. 

I understand you want to get off the drug and continue with the reduction, I did the same. However, you are wiser than I was as you registered on the forum. Like me, you have been reducing too fast and your central nervous system has yet to accomodate to these changes. You have most likely been experiencing the classic "windows" and "waves" pattern of our recovery as well. 

I understand that you have responsibilities and you need to remain functional. To avoid possible worsening of these symptoms, I would at least hold this dose, but I would also consider upping my dose to a previous amount where I felt at least acceptable and remain functional. Is there a specific reason why you need to get off this medication so fast?  We usually recommend a symptom led, slow taper, reducing not more than 5-10% every few weeks,  decreasing the taper rate if needed. After stabilisation, you could continue to taper with a rate you find comfortable.

I assure you that you will recover and you will get through this! We have many, many members out there living life, we also have a wonderful Success Story section with many thousands of entries. 

Let us know how we can help you, 

Take care, 

RR

When reading the success stories I didn’t yet come across one that mentioned tolerance, I also only read one that mentioned akathisia, so I became worried that those cases (tolerance and severe akathisia) don’t become success stories, do you know otherwise?

Also, when I try to objectively rate my symptoms I feel like I am in the category of people who have already jumped / who are already on zero…

[[Mo...]]

56 minutes ago, [[R...] said:

Hello @[Mo...], Welcome to BenzoBuddies, 

I am glad you joined the Forum, 

I am so sorry for what has been happening to you, I have had the same issue with benzodiazepine withdrawal not knowing what was going on. The symptoms you have been experiencing are almost identical to mine and the many of our members' - these are common experiences after over rapid cessation of benzodiazepines. 

I understand you want to get off the drug and continue with the reduction, I did the same. However, you are wiser than I was as you registered on the forum. Like me, you have been reducing too fast and your central nervous system has yet to accomodate to these changes. You have most likely been experiencing the classic "windows" and "waves" pattern of our recovery as well. 

I understand that you have responsibilities and you need to remain functional. To avoid possible worsening of these symptoms, I would at least hold this dose, but I would also consider upping my dose to a previous amount where I felt at least acceptable and remain functional. Is there a specific reason why you need to get off this medication so fast?  We usually recommend a symptom led, slow taper, reducing not more than 5-10% every few weeks,  decreasing the taper rate if needed. After stabilisation, you could continue to taper with a rate you find comfortable.

I assure you that you will recover and you will get through this! We have many, many members out there living life, we also have a wonderful Success Story section with many thousands of entries. 

Let us know how we can help you, 

Take care, 

RR

Lastly, the akathisia is growing since I started holding, have you heard of people experiencing it while tapering and it getting better with holding?

I so want to make the right decision, but don’t seem to know what that is… 

[[Re...]]

@[Mo...] I believe many, if not all people suffering from benzodiazepine withdrawal are experencing some level of tolerance as well. Though these symptoms often resemble withdrawal symptoms, after your reductions, it is - I personally believe - much more likely you are suffering from withdrawal. 

Akathisia is very challenging, my heart goues out to you... I personally don't think the onset of akathisia has much to do with holding the dose, the more sensible explanation might be that the cumulative reductions added up, and this is a sign of an overwhelmed nervous system. 

If you use the "Search function" in the Success Stories section, you will find many entries discussing akathisia, you will find even more if you are searching the general forums - many mentioning and discussing that the condition went away on it's own given anough time. With enough patience and stability offered to ourselves, the condition, as all symptoms - resolve.

[[Si...]]

I think maybe you should hold your dose as you don't know which was the last dose you were functional on as you're daily tapering.  I think maybe hold the benzo dose for several weeks and then start tapering the olanzapine, it might have turned on you?

[[Ch...]]

7 hours ago, [[M...] said:

I’ve been holding for 7 days and I seem to be getting worse quickly (the head pressure and the mild akathisia), do you truly think it might improve if I hold for longer…

I may be in the minority here, but since you are already under 1mg of Valium, I do not think you should hold or updose. Technically, you could jump off now, but many people go to .5mg or lower. You are at .81mg. If you think the drug is further harming you, it is safe to jump now.

Edited September 14 by [Ch...]
added a clarifying word

[[Fa...]]

1 minute ago, [[C...] said:

I may be in the minority here, but since you are already under 1mg of Valium, I do not think you should hold or updose. Technically, you could jump off now, but many people go to .5mg or lower. You are at .81mg. If you think the drug is harming you, it is safe to jump now.

This is a valid point.  My concern is the Akathisia.

As @[Si...] eluded to, Olanzapine can cause AKA, too.  Side effect is listed as 'restlessness', but that equates to AKA.  I realize it is used for AKA, but it can also cause it.  Benzos can be used to treat AKA, too.  A fast taper of them can also cause it.

These decisions are not easy, and they are very individual.  

 

 

[[Ch...]]

9 minutes ago, [[F...] said:

This is a valid point.  My concern is the Akathisia.

As @[Si...] eluded to, Olanzapine can cause AKA, too.  Side effect is listed as 'restlessness', but that equates to AKA.  I realize it is used for AKA, but it can also cause it.  Benzos can be used to treat AKA, too.  A fast taper of them can also cause it.

These decisions are not easy, and they are very individual.  

I see what you're saying, but at less than 1mg, it's unlikely that the Valium is "treating" anything, and it's likely just aggravating everything. When people are within the safe jump off zone - and this person is - it seems prudent to do just that (jump off), as opposed to going backwards by holding and/or updosing. 

[[Fa...]]

@[Ch...]  Knowing what I know now and what I have moved through, I may very well look at it this way, too.  However, one would have to be prepared to endure an uptick in AKA and be ready to face whatever comes head on. 

 

[[Ch...]]

1 minute ago, [[F...] said:

@[Ch...]  Knowing what I know now and what I have moved through, I may very well look at it this way, too.  However, one would have to be prepared to endure an uptick in AKA and be ready to face whatever comes head on. 

Yes, we all have to face that acute period after we stop the drug. However, symptoms do not get worse for everyone. Many people start improving once the drug is removed. Getting worse is not inevitable.

[[Fa...]]

@[Ch...]  My wording should have been 'be prepared to endure a possible uptick in AKA'.  I wrote that too quickly.

As I get lower on my dose, my AKA has improved some.  So, yes, getting worse is not inevitable.  And, my experience is my experience only.

 

[[Ta...]]

1 hour ago, [[C...] said:

I may be in the minority here, but since you are already under 1mg of Valium, I do not think you should hold or updose. Technically, you could jump off now, but many people go to .5mg or lower. You are at .81mg. If you think the drug is further harming you, it is safe to jump now.

I agree with Chester 100%!!! Diazepam is the WORST thing that ever happened to me. Some of us are just extremely sensitive to valium. 

I had akathisia so severe that I was running up and down my long, steep driveway from 11 pm to 5 am every night for weeks. I called "Safe Taper" in California, and the doctor told me that in his opinion it was the valium that was causing aka. So I went back on lorazepam. I DON'T Recommend that you do that!!! But because your dose is under 1 mg, I believe that you will start to feel better if you jump.

Soon after getting off of diazepam, the akathisia abated for me! It was WONDERFUL!!! SAFE TAPER coached me thru the process. They said that it can take several weeks for valium to leave your system...but every day I felt a little bit better. 🌷

Eileen

[[Bu...]]

Hello @[Mo...],

I just wanted to say hello and that I am so sorry for everything that you are dealing with.  I dug around a bit in "Success Stories"  and found a couple that mention akathisia specifically:

I know that the author of the first one, @[PE...], has dealt with terrible akathisia, that was one of his worst symptoms, and that it has since resolved.

I hope this helps a bit.

 

 

 

[[Mo...]]

On 14/09/2024 at 20:30, [[F...] said:

This is a valid point.  My concern is the Akathisia.

As @[Si...] eluded to, Olanzapine can cause AKA, too.  Side effect is listed as 'restlessness', but that equates to AKA.  I realize it is used for AKA, but it can also cause it.  Benzos can be used to treat AKA, too.  A fast taper of them can also cause it.

These decisions are not easy, and they are very individual.  

Thank you so much Faith. I was prescribed the olanzapine to treat the intense aka I experienced at the end of June. It did take the aka away in just 2 days (obviously in hindsight I’m not happy I went on it, seeing all the horror stories online about olanzapine: side effects and it’s withdrawal, but at the time I was desperate and not aware what was happening to me).

I have to say, after a horrible couple of days I had a much better day yesterday and a medium day today. Aka wise I am a lot better. And I am still holding. 

I think I am in a catch 22 where my base line symptoms are quite bad, but I do believe that tapering quickly still aggravates my symptoms. I now feel I got the uptick in aka as a result of tapering every day, instead of 5-10% per 2 weeks..

I think for now I will try to go towards the 5-10% every 2 weeks to get at least below 0.5mg…

Thank you so much for your thoughts, it’s so tough when your baseline is already so bad… 

It’s wonderful to know you are out there, thank you!

Nienke

 

[[Mo...]]

On 14/09/2024 at 22:42, [[B...] said:

Hello @[Mo...],

I just wanted to say hello and that I am so sorry for everything that you are dealing with.  I dug around a bit in "Success Stories"  and found a couple that mention akathisia specifically:

I know that the author of the first one, @[PE...], has dealt with terrible akathisia, that was one of his worst symptoms, and that it has since resolved.

I hope this helps a bit.

Thank you so much! I had found the story of the English teacher already… And had reached out to Pepe as well, as I read he had started quetiapine for the aka…

I was prescribed olanzapine, a much more potent ap. Not happy to be taking it. Especially since I later learned that the psychiatrist who prescribed it, intended me to take it while ct my diazepam. Instead the crisis team put me on olanzapine while keeping me on the (then 2mg) of diazepam…

In any case, I kept holding and the aka has lessened. Making me believe that it had been indeed the compounding of me tapering a small amount daily…

I guess I will have to go slower still, as much as I hate it…

[[Mo...]]

On 14/09/2024 at 20:19, [[C...] said:

I may be in the minority here, but since you are already under 1mg of Valium, I do not think you should hold or updose. Technically, you could jump off now, but many people go to .5mg or lower. You are at .81mg. If you think the drug is further harming you, it is safe to jump now.

Thank you so much! This is and has been my big dilemma since July… To jump or not to jump… I have to say, I held and the aka has diminished a lot in the past 2 days. So I do think it was the accumulation of tapering daily that resulted in an uptick in aka. I am now going to try to taper 5-10% every 2 weeks and see if I can keep the akathisia at bay at that rate… I can live with most other (brutal) symptoms, just not the SI and / or the aka. Both of which seem to come from lowering to quickly, even though my dose is low…

But I do see your point, my thought process goes back and forth like a jojo on this…🙈

Thank you for being there… 🍀

[[Fa...]]

On 16/09/2024 at 06:14, [[M...] said:

Thank you so much Faith. I was prescribed the olanzapine to treat the intense aka I experienced at the end of June. It did take the aka away in just 2 days (obviously in hindsight I’m not happy I went on it, seeing all the horror stories online about olanzapine: side effects and it’s withdrawal, but at the time I was desperate and not aware what was happening to me).

I have to say, after a horrible couple of days I had a much better day yesterday and a medium day today. Aka wise I am a lot better. And I am still holding. 

I think I am in a catch 22 where my base line symptoms are quite bad, but I do believe that tapering quickly still aggravates my symptoms. I now feel I got the uptick in aka as a result of tapering every day, instead of 5-10% per 2 weeks..

I think for now I will try to go towards the 5-10% every 2 weeks to get at least below 0.5mg…

Thank you so much for your thoughts, it’s so tough when your baseline is already so bad… 

It’s wonderful to know you are out there, thank you!

Nienke

Hi @[Mo...],

My situation is similar, but not identical, to yours.  It's why I was concentrating on the Akathisia as I was replying.

I, too, decided when I was desperate to take another drug to help with the AKA.  I understand the reason we do it very well.  It's as we all say at one point or another...we make the best decision we can with the information we have at the time, and that can be especially difficult when in such distress.  I don't regret my decision.  Do I wish it wasn't necessary at the time?  Yes.  But, I think given all we have been through, it's only natural to not want to take anything further.

I experienced AKA from taking an AP and it was exacerbated by rapid tapering it.  I did this as I was tapering the benzo.   I had no choice but to taper the benzo very slowly because, as you expressed, my baseline was so very bad.  And, I wanted to ensure, if at all possible, that the AKA didn't get worse.  Although, I don't think it could have gotten much worse at that time, but I was advised to move very slowly.  So, I understand your position very well.

The very positive difference between our situations is that you are now on a very low dose and are very close to being able to jump.  There are options for you as have been expressed, and it really comes down to what you feel most comfortable with.  I have had to be very cautious, and so I know my first instinct is to come from that position.  I'm glad you have been able to make a decision that is best for you.

Wishing you the very best moving forward.  Please keep us updated as to how you are doing.  Thank you for your kind reply.

Warmly,

F  

[[Ta...]]

Hi @[Mo...]

Given you have mentioned how important it is that you remain functional for your children, I think I would give serious thought to holding your dose for now. You may still be on the downturn phase of withdrawal from daily micro tapering too fast. It can take quite some time for those mounting daily cuts to hit your system, peak, and then smooth out. 

Sometimes the hardest decision of all, is to do nothing, and simply wait out the storm.

By holding longer, you allow your symptoms extra time to run their cycle, whilst also avoiding any further setback through a potential rash decision. You can always come back to this thread and weigh up potential other options should you experience no change. 🫂