Alan1234: desperately seeking help

[DataGuy]

I would use the Ashton benzo equivalency table to switch to diazepam. Once you have done that you can adjust the dose based on how you feel. https://www.benzo.org.uk/bzequiv.htm

[Alan1234]

56 minutes ago, DataGuy said:

Stabilization = reduction in intensity of symptoms as much as possible, while avoiding taking so much drug that you have an adverse reaction. Replacing the zopiclone with the diazepam at the recommended equivalency rate should help do this, since diazepam has a very long half-life and so should correct the fluctuations in blood levels (and hence your nervous system) you were getting with the zopiclone. Keep in mind it will take about a week of daily use for the full impact of the diazepam to be realized, as it builds up due to the long half life. So best to do a slow crossover from zopiclone to diazepam. 

 

I don't think you need to worry about your mental capacity to taper. Your recall seems very good, your writing shows little sign of cognitive impairment. You don't need to microtaper, although that is an option. You can always make 5-10% cuts every month or so. There are other options as well. If you don't feel comfortable making your own solution, there are compounding pharmacies that will make up doses for you either in pill or liquid form. 

 

Your urologist sounds like the best doctor. I'm not sure we can know that it is adrenaline that is causing the problem and not some other neurotransmitter system. I think it is best to assume it is a combination of protracted wd from antidepressants and wd from the z-drug (which can be pretty severe). I think best to listen to the urologist because the cardiologist should be aware that this can be caused by psychotropic drug wd. Unfortunately, most doctors are pretty ignorant about that. 

@DataGuy ok great thank you for the reassurance.

 

can I ask what is the easiest way to do  5/10% cuts of a 2mg tablet?

 

im unable to work and my local pharmacies are less than helpful, I’m assuming compounding pharmacies are expensive. I will do some research. 

 

can I do this by using a Gemini scale just by crushing the tablet and subtracting weight of the powder?

 

ive read Diazepam isn’t water soluble and I don’t fancy using alcohol or propylene glycol 

 

I hope you find somewhere suitable where you feel comfortable to live. 
 

thank you for your patience and help 

[DataGuy]

Hi @Alan1234,

 

Yes, a scale would work great for cutting 5-10%. Compounding pharmacies do charge more, for sure. I am probably not the best person to ask about liquid tapers, since I've never done one, but it sounds like you are leaning more toward dry cutting. 

[Alan1234]

9 hours ago, DataGuy said:

Hi @Alan1234,

 

Yes, a scale would work great for cutting 5-10%. Compounding pharmacies do charge more, for sure. I am probably not the best person to ask about liquid tapers, since I've never done one, but it sounds like you are leaning more toward dry cutting. 

@DataGuy

yes it would be the only way for me to do it. I will lol on YouTube to see what videos there are. I’m assuming you need to crush and mix the whole tablet as the outer coating might be inert and by cutting a part of the tablet off the active ingredient may not be evenly distributed? 
 

im assuming sites like benzo buddies will have the answers to this

 

thank you again for your help

 

hope you find somewhere suitable and nice to live 

[Believer]

Hi Alan,

How are you doing? It seems like up and down? Windows/waves?

 

Believer

[Alan1234]

40 minutes ago, Believer said:

Hi Alan,

How are you doing? It seems like up and down? Windows/waves?

 

Believer

Hey @Believer

thank you so much for your message!

Im pleased to report this week I’ve had some of my best moments for such a long time!! 
my anxiety and physical symptoms are still at many times horrific, but the weird experiences I’m having I’ve had deep gratitude and joy that have almost coexisted in the same moments! Obviously I’ve never experienced anything like this in my life, I’m trying to experience them like an inquisitive child. Don’t get me wrong the panic and anxiety is horrific but the split moments of joy and peace are something beautiful so I’m so grateful for the hope. 
 

ive been in a dark dark place and know the road is long but I really feel I’m making some breakthroughs.

 

I hope you are ok? How are things for you ?

 

im really grateful to have people like yourself. I am so grateful for what you have given me so selflessly. 
 

 

[Believer]

Alan,

That is great to hear! I’m so pleased for you.

 

How about the DI? Where are you with that?

 

I am still holding from my last cut, symptoms are still too high to think about another. I am not experiencing any windows, only a slight lift in symptoms just before bedtime. So frustrating. My fear level is also high.

 

So glad you’ve seen some improvement. 

[Alan1234]

1 hour ago, Believer said:

Alan,

That is great to hear! I’m so pleased for you.

 

How about the DI? Where are you with that?

 

I am still holding from my last cut, symptoms are still too high to think about another. I am not experiencing any windows, only a slight lift in symptoms just before bedtime. So frustrating. My fear level is also high.

 

So glad you’ve seen some improvement. 

@Believer the whole DI thing was a fiasco. The nurse told me I had it. But then 2days later the Consultant  called  me and said I don’t have it. He said I’m very close to the level of having it but said i don’t have it. It’s like my heart arythmias they are still happening everyday but the cardiologist says he can’t find a cause and atm they don’t need an ablation, which is good news  although recommended drugs for which I am holding off on for now.  I still have the symptoms of DI too.

I think they all must be caused by withdrawal that’s the only thing I can put it down to. I’ve realised all I can do is aim to control how i react to the symptoms and hope and pray in time they improve. 
 

it’s so tough when there are no windows and the fear is disabling.

im not going to lie I had SI on many days over Christmas and New year. 
 

But what has helped me is having a dedicated routine. I have 3 non negotiables, morning meditation before getting out of bed. Breathwork after breakfast and mediation when I get into bed. I then have devised myself a menu to choose from that I make/force myself to do things from to fill my day and get out of my negative physical and psychological symptom loop. 
 

so depending on how I feel : walk, read, play chess, watch tv, care for plants, sit in nature, make new connections, talk to my friend, talk to my mum, send gratitude and love to family or people i acknowledge.

 

i try to fill all my time when I’m not doing chores or email admin with one of these whatever I’m feeling. 
 

it’s work in progress but helping 

 

I hope you get some relief and feel better soon. 
 

sending light and healing to you 

blessings 

 

 

[Faure]

2 hours ago, Alan1234 said:

Im pleased to report this week I’ve had some of my best moments for such a long time!! 

Alan, I'm so pleased for you. What great news! This is just the best news 🙂

[Believer]

Yeah, my proposed DI diagnosis was wrong as well. U is t was withdrawal and has resolved. I occasionally get palpitations but am able to ignore them. I haven’t had any for quite some time. All of these symptoms, it’s just mind blowing.

I take a few short walks daily with my dog, it’s helpful. It’s difficult most times for me to read or watch TV, my monkey brain attaches too much garbage most of the time.

 

It sounds like are developing some good coping skills. I try my best to let things float, but it can be so difficult, especially in the morning.

 

I just wish I was off the drug so the real healing could start. What a journey!

 

Hang in there, don’t let the SI take hold. It’s just a thought.

 

Hugs and prayers to you and for you.

 

[Alan1234]

1 hour ago, Faure said:

Alan, I'm so pleased for you. What great news! This is just the best news 🙂

 

1 hour ago, Faure said:

Alan, I'm so pleased for you. What great news! This is just the best news 🙂

@Faure yes it’s amazing and giving me so much hope🙏
 

how are you feeling ? Are you still tapering ? 

[Alan1234]

55 minutes ago, Believer said:

Yeah, my proposed DI diagnosis was wrong as well. U is t was withdrawal and has resolved. I occasionally get palpitations but am able to ignore them. I haven’t had any for quite some time. All of these symptoms, it’s just mind blowing.

I take a few short walks daily with my dog, it’s helpful. It’s difficult most times for me to read or watch TV, my monkey brain attaches too much garbage most of the time.

 

It sounds like are developing some good coping skills. I try my best to let things float, but it can be so difficult, especially in the morning.

 

I just wish I was off the drug so the real healing could start. What a journey!

 

Hang in there, don’t let the SI take hold. It’s just a thought.

 

Hugs and prayers to you and for you.

 

Hey @Believer

I wasn’t able to watch TV until this month it’s new for me to be able to do it. I couldn’t watch it for 9mths, the lights and the picture changing me was too much. I’m only doing it in small amounts but it’s progress. 
i understand too about reading but it was more my vision and memory and cognition. I would literally read a paragraph and then I have no insight memory or understanding of anything I have just read. I was able to read from March to August last year then I couldn’t as symptoms were so bad. But I am able to read again. 
 

it might all change again but it’s proved it’s possible for me. 
 

it has to be possible for you too. 
 

yes I understand the mornings whatever time i go to bed I awake with horrific anxiety and heart racing and leg pains, but now since i put on 15mins of a positive affirmation meditation each morning  I then make myself get straight up. I can’t even relax or focus to the meditation but I just put it on.  I get up and then I manage to get through breakfast. It’s so hard don’t get me wrong. But then I force myself to do 11 mins breathwork sat outside in my thick coat. It’s so hard to concentrate so I have made up that I change the breath exercise/technique every one minute for the first 7mins. Then I just use one technique for the last 4mins. I find by having all different techniques I can get through each min then as I go on after 5mins i gain some momentum. 
I’m by no means perfect it’s messy and very hard. Then i give myself a break maybe play some chess online or try to treat myself. I then go again after lunch by forcing myself to walk etc. Again some days the panic is unbearable but I have to do it. Before Christmas in was bedridden all of December. 
 

it’s not perfect, I’m far from well but it’s massive progress for these moments. My next challenge is to do it for another week again. I’ve managed two weeks so far like this. 
 

i totally understand about wanting to be off the drugs. This was is exactly how I feel. Please don’t make the same mistakes I made. Please have patience. I really would’nt want anyone to ever have to experience or go thorough what I have experienced so far, although it sounds like you are very similar but I’m certainly not saying my symptoms are worse or have been worse than yours. All I’m trying to say is I was mis informed, I trusted Docs, Psychiatrists and I also have made terrible decisions myself. I really wasn’t in a rationale stable place to make them. Look at my drug signature it’s probably up there with the horror stories on here and not a advertisement for a good citizen on this website. 
 

your healing is happening, by tapering properly I know it is. I reframe my symptoms now when there unbearable I tell myself this is when the most healing is taking place. It’s my body telling me it’s healing. Remember one day in the near future you will no longer feel like this. It could happen in an instance. Change can happen that quick. I truly believe it, for the hours of hope  I’ve had this last week I know it. So don’t get too down and please remember your healing as your tapering!

 

I am so grateful for all your support and everyone one else’s on here. Without it I wouldn’t still be here. 
 

please keep reaching out to people who are on the journey or have been on the journey who understand. 
 

I hope I’ve not gone on too much and not been patronising in anyway. I realise my Neuro emotions are all over the place. 
 

sending you love, hope and prayers 🙏 

[benesh]

Hello @Alan1234and @Believer,

I wanted to add some more hope. Yes in the twinkling of an eye…..I am feeling sooo much better. I had 4 months from hell. Such intense SI, morning dread and through the roof anxiety most of the day and now…simply joy and peace. How did all this happen? Maybe answered prayer, maybe some added supplements, maybe my CNS is in a healing place.

No matter the reason, I am celebrating and praising God for this break from torment.

I intend to hold for a while. Actually, I have been holding since September but this is the first real window.

I just wanted to say…stay the course and never give up hope.

🥰👏🙏

[Alan1234]

4 minutes ago, benesh said:

Hello @Alan1234and @Believer,

I wanted to add some more hope. Yes in the twinkling of an eye…..I am feeling sooo much better. I had 4 months from hell. Such intense SI, morning dread and through the roof anxiety most of the day and now…simply joy and peace. How did all this happen? Maybe answered prayer, maybe some added supplements, maybe my CNS is in a healing place.

No matter the reason, I am celebrating and praising God for this break from torment.

I intend to hold for a while. Actually, I have been holding since September but this is the first real window.

I just wanted to say…stay the course and never give up hope.

🥰👏🙏

@benesh this is amazing I am so happy for you. It truly is a gift. 
It’s so good to hear of people getting better and healing and so important for others to hear and to give them hope during all the dark and horrible and often horrific times 

 

🙏

[Believer]

1 hour ago, Alan1234 said:

 

I hope I’ve not gone on too much and not been patronising in anyway. I realise my Neuro emotions are all over the place. 

Not at all. I have been tapering 25 mg for coming up on 6 years. I will continue to be patient. I am so happy that you are having some good days! You sound so much better. Here’s to continued healing!

[Faure]

@Alan1234 yes I'm still tapering. Down to 9mg now from 15 back in June 2021. I feel better with each drop (mostly, some slightly more challenging weeks but nothing that stops life fortunately). I hope things continue well for you, remember not to do too much!

[Alan1234]

1 minute ago, Faure said:

@Alan1234 yes I'm still tapering. Down to 9mg now from 15 back in June 2021. I feel better with each drop (mostly, some slightly more challenging weeks but nothing that stops life fortunately). I hope things continue well for you, remember not to do too much!

@Faure yes back down with a big bump since yesterday but at least I’ve had a glimpse of what is possible 

[Faure]

It's given you hope - you'll get more windows, remember to treat yourself with kid gloves and I don't know what's going on with meds but it sounds like they are steady now which is positive 🙂

[Rosetta]

Alan, I’m so glad to see that you have been improving.  That is how it starts.  Keep it steady and stable, and you will make more gains!  - Rosetta

[Alan1234]

On 1/17/2022 at 3:45 PM, Faure said:

It's given you hope - you'll get more windows, remember to treat yourself with kid gloves and I don't know what's going on with meds but it sounds like they are steady now which is positive 🙂

Thank you 🙏 

[Alan1234]

24 minutes ago, Rosetta said:

Alan, I’m so glad to see that you have been improving.  That is how it starts.  Keep it steady and stable, and you will make more gains!  - Rosetta

@Rosettathank you for your message. I hope you are doing well.

I’m really struggling again this week, which is frustrating, lots of jumping between extreme emotions, but I have had a glimpse of better times and hours so I have hope 🙏

[Rosetta]

Yes, it’s very difficult to deal with having the symptoms return.  Emotionally, it’s like a bait and switch; feeling better for a while makes falling back all the more demoralizing.  Please believe us when we say you will reach a point when waves are a little less distressing, and hope will persist throughout part of the most of the waves.  Getting to that point is an achievement, but you won’t realize you are there when it happens, and you will have some stronger waves every so often after it happens.  However, it eventually becomes apparent.

[Faure]

Hey Alan, how are you doing?

[Alan1234]

2 hours ago, Faure said:

Hey Alan, how are you doing?

@Faure unfortunately I’ve been really bad, the worst I’ve ever been, I’ve got horrific Akathisia so been going a few days at a time without even an hours sleep due to sleep fits and all the symptoms. I’m having my first brief window today for 2wks though 🙏 I’ve been hanging on.

 

il really trying to help myself though 

 

i hope you are ok, how is it going for you ? 

[Faure]

Sorry to hear you've been in a wave for two weeks. Sounds absolutely awful for you. But a glimpse of hope with a window yesterday, remember it comes in waves and windows which means you're very slowly healing. You'll get there 🙂

 

I'm ok, thank you for asking. I get very frustrated with how long the taper will take, but better safe than sorry is what I keep reminding myself.

[Alan1234]

2 hours ago, Faure said:

Sorry to hear you've been in a wave for two weeks. Sounds absolutely awful for you. But a glimpse of hope with a window yesterday, remember it comes in waves and windows which means you're very slowly healing. You'll get there 🙂

 

I'm ok, thank you for asking. I get very frustrated with how long the taper will take, but better safe than sorry is what I keep reminding myself.

@faure most definitely better safe than sorry. I would give anything to know what I know now about these meds. Don’t risk it. You don’t want to be housebound with chronic insomnia and the Myriad of other symptoms I promise you 

[Faure]

On 2/6/2022 at 12:43 PM, Alan1234 said:

@faure most definitely better safe than sorry. I would give anything to know what I know now about these meds. Don’t risk it. You don’t want to be housebound with chronic insomnia and the Myriad of other symptoms I promise you 

Thank you Alan, I definitely don't want that. I reached the end of an a4 page of reductions today, felt like such an achievement. Another 3/4 page to go till I'll be a year in and at just over 1/3 of the starting dose.

 

Hang in there 🙂

[Rosetta]

Hi, Alan.  I’m thinking of you.  I hope the aka went away.  Hang in there.  It will go away.  Life is amazing without aka.  I catch myself forgetting that, and then, when I remember, I’m so glad that I made it through.  You will, too.  Hang in there.  Your body can heal itself.  - Rosetta

[Alan1234]

10 hours ago, Rosetta said:

Hi, Alan.  I’m thinking of you.  I hope the aka went away.  Hang in there.  It will go away.  Life is amazing without aka.  I catch myself forgetting that, and then, when I remember, I’m so glad that I made it through.  You will, too.  Hang in there.  Your body can heal itself.  - Rosetta

@Rosetta thank you for thinking of me still, it means a lot. 
 

I hope you are well.

 

Im still struggling with Aki with internal terror but I’ve also now got interstitial cystitis and painful baldder spasms. I’m going to the toilet every 15/20mims it’s horrendous. I see its a fairly common problem of these drugs. The consultant has suggested Elavil but this is an anti depressant so ive said no. He has then listed me for a hydrodistalation of my bladder but this requires a general anaesthetic. I’m quite worried about this with withdrawal and Akathisia but obviously my bladder is so bad I need it.

 

Any thoughts and advice around it would be greatly appreciated 

 

thank you 

 

[Rosetta]

Hmmm.  These are the questions I would ask before I had that procedure.    Do I have blood or protein in my urine or any other symptoms that indicate an exploration of the bladder is necessary notwithstanding the urgency and frequent urination? Am I at risk of serious injury if I do not have the hydrodistention procedure?  
 

I assume that the risks of that procedure — hydrodistention — have been discussed?  You can look them up at a website for the Interstitial Cystitis Association.

 

Has the possibility of an epidural instead of general anesthesia been discussed?  Epidurals have risks, too, but I feel that anesthesia has been a wrecking ball for my nervous system.  So, I would ask about an epidural, if I were you.  Perhaps you could avoid the sedation drug that way.
 

As you know, I have a fairly dim view of the ability of doctors to recognize that the decision to give a person any drug must be balanced with the individual’s present condition and the likelihood that the drug will cause more harm than benefit.  They tend to think only about the statistical possibility of adverse results in the population as a whole rather than what a particular patient’s risk might be.  Given that most doctors don’t accept that WD sufferers are at risk of increased nervous system destabilization, even doctors who make these calculations don’t try to protect us.  However, when a person has had a condition this severe and for as long as you have, I understand why the doctor would offer this exploratory procedure.

 

I have spent years worrying that my symptoms were evidence of some serious issue and that I would find out that I should have investigated further.    For me, avoiding doctors has paid off.  I was lucky.  All we can do is ask questions and try to make decisions based on what we know to be true even if our doctors don’t share our knowledge.  
 

So, do you think that the results of this  exploratory procedure will add anything to the information you have? Will it change what you do moving forward?  Would a worsening of your nervous system’s condition be worth it if you found out that something more than WD or adverse drug effects is causing your issue?  
 

In order to answer these questions, you need your doctor to tell you the answer to these: What are the possible conditions the doctor might find by looking inside your bladder?  What treatment would be offered if X condition (other than drug effect) we’re found? And would you take that treatment? What adverse effects would that treatment cause for you, in your condition?

 

Of course, this conundrum is evidence that these drugs should be used very, very sparingly and only by doctors who realize the risks and how to minimize them, but that ship has sailed for you and for me.  We have to proceed as things are.  I doubt you have been told which possible diseases the hydrodistention may find.
 

I hope this note can help you think about the situation.  I know that when I was very sick, logical thinking was a hopeless endeavor for me.  You seem much more clear-headed than I was.  Maybe all that I have written here is obvious, but you just can’t make the decision?  I know it’s hard to suffer and suffer and look for answers, but find nothing that feels safe enough to try.

[Alan1234]

2 hours ago, Rosetta said:

Hmmm.  These are the questions I would ask before I had that procedure.    Do I have blood or protein in my urine or any other symptoms that indicate an exploration of the bladder is necessary notwithstanding the urgency and frequent urination? Am I at risk of serious injury if I do not have the hydrodistention procedure?  
 

I assume that the risks of that procedure — hydrodistention — have been discussed?  You can look them up at a website for the Interstitial Cystitis Association.

 

Has the possibility of an epidural instead of general anesthesia been discussed?  Epidurals have risks, too, but I feel that anesthesia has been a wrecking ball for my nervous system.  So, I would ask about an epidural, if I were you.  Perhaps you could avoid the sedation drug that way.
 

As you know, I have a fairly dim view of the ability of doctors to recognize that the decision to give a person any drug must be balanced with the individual’s present condition and the likelihood that the drug will cause more harm than benefit.  They tend to think only about the statistical possibility of adverse results in the population as a whole rather than what a particular patient’s risk might be.  Given that most doctors don’t accept that WD sufferers are at risk of increased nervous system destabilization, even doctors who make these calculations don’t try to protect us.  However, when a person has had a condition this severe and for as long as you have, I understand why the doctor would offer this exploratory procedure.

 

I have spent years worrying that my symptoms were evidence of some serious issue and that I would find out that I should have investigated further.    For me, avoiding doctors has paid off.  I was lucky.  All we can do is ask questions and try to make decisions based on what we know to be true even if our doctors don’t share our knowledge.  
 

So, do you think that the results of this  exploratory procedure will add anything to the information you have? Will it change what you do moving forward?  Would a worsening of your nervous system’s condition be worth it if you found out that something more than WD or adverse drug effects is causing your issue?  
 

In order to answer these questions, you need your doctor to tell you the answer to these: What are the possible conditions the doctor might find by looking inside your bladder?  What treatment would be offered if X condition (other than drug effect) we’re found? And would you take that treatment? What adverse effects would that treatment cause for you, in your condition?

 

Of course, this conundrum is evidence that these drugs should be used very, very sparingly and only by doctors who realize the risks and how to minimize them, but that ship has sailed for you and for me.  We have to proceed as things are.  I doubt you have been told which possible diseases the hydrodistention may find.
 

I hope this note can help you think about the situation.  I know that when I was very sick, logical thinking was a hopeless endeavor for me.  You seem much more clear-headed than I was.  Maybe all that I have written here is obvious, but you just can’t make the decision?  I know it’s hard to suffer and suffer and look for answers, but find nothing that feels safe enough to try.

@Rosetta

hey

The problem is this condition predates withdrawal by 2/3years. There the actual final straw why I decided to come off the medication as the Urologist said it could be the medication causing it. Over the last two years but significant last 14mths where I’ve taken the least drugs and had periods off the symptoms have actually got significantly worse. I’m now housebound as I go the toilet on average every 20mins for a large portion of the day. I’m going at least 36x a day now so even going out for walks longer than 15mins can be impractical unless In the countryside. 

i feel if i could get this sorted I couldn be able to do some limited part time volunteering work which would help my mental health but it’s. It possible at present due to this. 
 

the other problem is they have found no blood or urine, but in our National healthcare system they only use dipstick urine tests that were designed in the 1950s. The research commonly reports they aren’t fit for purpose and actually miss far more infections etc then they actually diagnose. So someone can have all the symptoms but I as many as 80% of cases they don’t detect them, so my symptoms could be a chronic UTI. Obviously less likely in a male. My other options are to pay privately for some more modern tests or send off and get them done privately in the USA. I would have to travel to London 5hrs away with this condition it’s problematic but probably worth it, to get a potentially treatable condition ruled out. If not the diagnosis is interstitial cystitis so then I’m not I are what I should do as the other treatment offered is Elavil. I’m only 47yrs and I have no life and want to be able to even take or go out with my daughter in the future. I just worry that it’s got worse off the drugs than on it and when they measured my bladder capacity in March 2021 it has shrunk and can’t hold more than 200mls now.

 

what would you do ? 

[Alan1234]

1 minute ago, Alan1234 said:

@Rosetta

hey

The problem is this condition predates withdrawal by 2/3years. There the actual final straw why I decided to come off the medication as the Urologist said it could be the medication causing it. Over the last two years but significant last 14mths where I’ve taken the least drugs and had periods off the symptoms have actually got significantly worse. I’m now housebound as I go the toilet on average every 20mins for a large portion of the day. I’m going at least 36x a day now so even going out for walks longer than 15mins can be impractical unless In the countryside. 

i feel if i could get this sorted I couldn be able to do some limited part time volunteering work which would help my mental health but it’s. It possible at present due to this. 
 

the other problem is they have found no blood or urine, but in our National healthcare system they only use dipstick urine tests that were designed in the 1950s. The research commonly reports they aren’t fit for purpose and actually miss far more infections etc then they actually diagnose. So someone can have all the symptoms but I as many as 80% of cases they don’t detect them, so my symptoms could be a chronic UTI. Obviously less likely in a male. My other options are to pay privately for some more modern tests or send off and get them done privately in the USA. I would have to travel to London 5hrs away with this condition it’s problematic but probably worth it, to get a potentially treatable condition ruled out. If not the diagnosis is interstitial cystitis so then I’m not I are what I should do as the other treatment offered is Elavil. I’m only 47yrs and I have no life and want to be able to even take or go out with my daughter in the future. I just worry that it’s got worse off the drugs than on it and when they measured my bladder capacity in March 2021 it has shrunk and can’t hold more than 200mls now.

 

what would you do ? 

@Rosetta they say they aren’t expecting to find any thing and the treatment is to Stretch my bladder. They say it might cure me or give me relief for sometime. Form a few people I’ve spoken to they have told me it only lasted a few weeks any relief they got. The next stage is Botox which again requires general anaesthetic and a electrical implant after that and another general anaesthetic after that. The trouble is both the first two options only give temporary symptomatic relief as they aren’t finding the cause or treating the symptoms.
 

I think I would need to take something to sedate me as since being in withdrawal and having this Akathisia my anxiety is a ten most of the time. With an epidural I would still be super anxious. I just don’t know what to do and the risks involved, I want some sort of life to be able to go out with my daughter eventually, it’s a case of how long do you leave it. I’ve spoken to some people who had IC for 16yrs then it went away and others who ots never gone. 
 

None of them had withdraw through these drugs and doctors and my family won’t understand my concerns.

 

if I turn it down now it’s taken two years to be offered this so I might not be able to have it again. They would put me down as Insane/mentally ill on my medical records if I tell them my reasons and turn it down I’m sure. 

I wonder what other  people’s experience of GA in protracted withdrawal is ? Surely I can’t be the only one who has had to go through this dilemma. Obviously it can’t be good for your Brain 

[Rosetta]

Well, I should point out: you may, very unsurprisingly, believe that this condition predates withdrawal, but that (not friends) depends upon when WD started.  The first CT was in 1999.  Each change of medication, increase, decrease, switch to a different med, CT, shakes up the nervous system.  The first CT may produce nothing more than odd little things (mild twitches in the muscles or rare, intermittent ringing in the ears, for example.)  Even going back on Paxil at 20 mg in 2003 may have shaken things up in ways you did not notice.  You may have gradually stabilized between 2003-2014 from a shake up you did not know had occurred.  The CT in 2014 was followed by in the prescription for V.  Maybe you didn’t notice WD until May of 2020, but I would not be shocked if you had changes that were not so troubling that you felt you were sick.  You MAY have attributed a stiff neck to sleeping on your neck “wrong” or back problems could have been believed to be due to a sprain.  At some point, the muscles that operate your bladder may have been affected.  
 

I’m assuming that there is a spasm or a contraction of the muscles keeping you from filling your bladder.  Perhaps that is not the case.  Do you have proof that cysts in the bladder exist?  Has an MRI or sonogram confirmed that?  It is possible that both issues exist at the same time.  Of course, I have had a lot of muscle contraction problems, so my experience makes me think of that possibility.  How an AD would cause this issue to be so severe, other than via muscle contractions, I’m not sure.

 

What would I do?  I have been willing to let things go knowing that I can change my mind at any moment and get a test or take a medicine, but never doing so.  I could get cancer and waste valuable time avoiding doctors, tests, and sedatives necessary for tests, and that would be something I would regret.  I would try to get as many scans as I could without taking anything that might affect my nervous system.  Based on the results, I would continue to re-assess and consider whether I should take the risk of sedation.

[Rosetta]

Have you been diagnosed with akathisia?

[Alan1234]

11 minutes ago, Rosetta said:

Well, I should point out: you may, very unsurprisingly, believe that this condition predates withdrawal, but that (not friends) depends upon when WD started.  The first CT was in 1999.  Each change of medication, increase, decrease, switch to a different med, CT, shakes up the nervous system.  The first CT may produce nothing more than odd little things (mild twitches in the muscles or rare, intermittent ringing in the ears, for example.)  Even going back on Paxil at 20 mg in 2003 may have shaken things up in ways you did not notice.  You may have gradually stabilized between 2003-2014 from a shake up you did not know had occurred.  The CT in 2014 was followed by in the prescription for V.  Maybe you didn’t notice WD until May of 2020, but I would not be shocked if you had changes that were not so troubling that you felt you were sick.  You MAY have attributed a stiff neck to sleeping on your neck “wrong” or back problems could have been believed to be due to a sprain.  At some point, the muscles that operate your bladder may have been affected.  
 

I’m assuming that there is a spasm or a contraction of the muscles keeping you from filling your bladder.  Perhaps that is not the case.  Do you have proof that cysts in the bladder exist?  Has an MRI or sonogram confirmed that?  It is possible that both issues exist at the same time.  Of course, I have had a lot of muscle contraction problems, so my experience makes me think of that possibility.  How an AD would cause this issue to be so severe, other than via muscle contractions, I’m not sure.

 

What would I do?  I have been willing to let things go knowing that I can change my mind at any moment and get a test or take a medicine, but never doing so.  I could get cancer and waste valuable time avoiding doctors, tests, and sedatives necessary for tests, and that would be something I would regret.  I would try to get as many scans as I could without taking anything that might affect my nervous system.  Based on the results, I would continue to re-assess and consider whether I should take the risk of sedation.

@Rosetta 

well this only started when I was prescribed wrongly it now seems 75mg of Instant release Venlafaxine in 2016/17 so arguably because of the drugs very short half life I was going through withdrawal every single day until I stoped it in 2020. This drug i now know is renowned for causing overactive bladder problems as it’s given to patients with serious spinal cord injury who can’t go to the toilet. I just find it strange that it’s actually continued to get worse off the drug from 15/16x a day to double that now. Off course my present anxiety doesn’t help this also. 

[Alan1234]

13 minutes ago, Rosetta said:

Have you been diagnosed with akathisia?

@Rosetta I was told I had acute Akathisia in the ER in November and out on Propranolol and Diazepam. 
ive weaned off the propranolol and I’m taking now 1mg of diazepam and tapering off. As I’m tapering off the muscle and nerve pains in my legs are getting worse particularly in the morning and nighttime and I have constant high anxiety/terror.
 

i have seen a junior neurologist on Monday who said I don’t have MS and wants to do more muscle electrical tests, he said the diagnosis of Akathisia is very hard to make and subjective as I’m now not showing the physical signs meaning I am able to sit down for periods of time and he can only take my word on the inner feelings I’m reporting