Alan1234: desperately seeking help

[Rosetta]

Yes, it seems odd, I know.  All of my problems got worse after I was prescribed Xanax PRN (as needed), then quit Zoloft, then took Trazodone, and then quit everything.  It’s the nature of dysautonomia.  The destabilization, further destabilization and then further destabilization causes the symptoms to occur, become worse, and become more frequent.  The drug doesn’t “cause” the condition the way blood pressure medication causes the arteries to relax.  Taking the drug away does not stop the effect.  The adverse reaction to the drug, because the person is suffering from a previous destabilization, causes the muscle problems or tinnitus or anxiety or POTS, etc.  The system does not operate properly due to an injury of sorts.  Coming back to balance takes time as the system overreacts and over-corrects. It’s like losing control of a car on ice, and instead of taking one’s foot off the brake and steering into the ditch, the person panics and attempts to control the skid by turning the wheel too far in the other direction and then stands on the brake pedal in an attempt to stop ASAP.  That’s what the body is doing, over and over and over again, constantly keeping balance from being achieved.  There is nothing to crash into, and we careen on down the mountain for months.

[Rosetta]

Ok. Well, (and I’ll vent a bit) I would hope that doctors could understand the fear of a sedative by a person who is dependent on sedatives and has had akathisia and is reporting that his aka continues to exist.  My God!  If you are mad because you don’t want to be knocked out cold by anesthesia while you are struggling through benzo tapering then you are mad (and so are they), but there are a number of risks to that procedure such as bladder perforation.  All anesthesia carries risks regardless of the procedure.  If you don’t want to do it, you can calmly state that as you struggle with benzo tapering and aka you don’t intend to add the risks of that to your life.  No need to talk about ADs having created this problem.

If you can afford to get the protein in your urine checked, do so.  

I, personally, wouldn’t go under anesthesia in these circumstances, and it’s quite interesting that people who have done that procedure say it doesn’t last.  I wonder why.  Could it be that the brain and not the bladder is the problem?  

[Rosetta]

I’m so sorry.  I wish I could fix it for you!

[Anya324]

Hey @Alan1234

 

I have IC as well. It began 20 years ago, lasted for 8 months then went away. Would only sometimes rear its ugly head when I was stressed or hormonal. Looking back, I believe the first time it appeared that I had CT’ed a SSRI. But I don’t remember exactly.
 

Anyway… I went off the Lex this past June and by mid July was having the urethral burning. By sept it had increased and began effecting my bladder. It was intolerable. I found an amazing Uro-Gynecologist who also suggested a Hydrodistention. I was 100% terrified of anesthesia but also desperate for relief. 
 

I’ve done it twice (10/21 and 2/22). The first time I was still struggling hard with wd/anxiety but I didn’t want anything to calm me down because I was terrified of the repercussions. The second time I let them give me Versed ahead of the procedure and fentanyl during/after. One or both definitely effected me negatively. If I go for a third round, I will def go bare minimum like I did the first time. 
 

Here’s my advice; tell them you do not want anything extra beyond the general anesthesia meds. No Versed or Ativan or anything to relax you before. Absolutely no Reglan (anti emetic). I opt for Zofran instead because anesthesia can/will make you. Tell them no antibiotics from the quinolone family  (I opt for zero abx as they give me a yeast infections and generally aren’t necessary-I do not struggle with UTIs). try to avoid pain meds if possible. The only pain I had post procedure was because they dilated my urethra. I didn’t need any meds because it only hurt when I peed for the first 24hrs.

 

I know the idea of general anesthesia is scary but many people on this site have been put under and fared just fine. Also, the procedure takes about 10 minutes so you’re not under anesthesia for a long at all. According to everything I’ve read, the procedure if you were awake is extraordinarily painful, barbaric even. My anesthesiologist did offer me a spinal but, like you, I did not want to be awake.
 

be prepared for the docs to give you odd looks when you decline all the fun stuff. 
 

 

@Rosetta as far as I am aware, this procedure isn’t considered exploratory. Some docs will look at the bladder during this procedure to see if there are any lesions/cancers but that is only done the first time. The purpose for Hydrodistention is stretching the bladder and actually confusing/damaging the nerves that are sending the pain/urgency signals. It is a very effective treatment for many that doesn’t have a patient on daily meds.  Many of the meds that help with IC are psychotropic (that may be the wrong term; antihistamines, snri, etc.) This is a much safer alternative. 

[Rosetta]

@Anya324 Thank you for relaying your experience.  That you have tried both options - with and without relaxation, anti-anxiety meds — makes you a perfect person to give Alan the help he needs to make this decision.  He’s lucky someone who has been through it twice can give perspective.  The fact that the “being under” period is so short — maybe that makes it less risky.  I don’t know.  However, hearing that Anya found the treatment effective is very encouraging.  

[Anya324]

@Alan1234 you can join this group if your so inclined. I’ve learned a lot here and there are quite a few men too  

 

https://www.facebook.com/groups/144538712714066/permalink/1363139237520668/

[Alan1234]

10 hours ago, Anya324 said:

@Alan1234 you can join this group if your so inclined. I’ve learned a lot here and there are quite a few men too  

 

https://www.facebook.com/groups/144538712714066/permalink/1363139237520668/

@Anya324 thank you for thinking of me. I have joined it thank you 

[Boris]

Hi Alan

 

I had the hydrodistension yesterday at Stockport stepping hill as I know you’re in the Manchester area as well. It was mainly to fully check the bladder and rule it all out. They basically said to me before the test I’ve tested negative for everything and there is some stuff they just don’t know the cause of. Apparently my bladder was absolutely fine and it expanded to 1 litre which was good according to them. I was a bit out of it so waiting for the official results. They did mention something about going for distillation next to see if that helps.

So obviously I was a bit nervous going in about the general anaesthesia. The staff were amazing and to be honest the actual hospital experience was surprisingly good, god bless those nhs staff.

 

I spoke to the anaesthetist about my concerns over the meds especially anti nausea drugs and akathisia as I cannot go through that again. He didn’t really know about it (as expected) but he was very understanding and I took the option of an epidural which I didn’t know was an option before. He said it was a much cleaner way of doing this med wise. I did though take the sedative option on top as I haven’t had an issue with them before. 
 

The epidural was such a surreal experience and I was worried about being awake for the procedure but it was over and done so quick. I didn’t feel a thing although it took around 3 hours to get full feeling back, so weird. I was in quite a lot of pain in the last hour until I managed to finally urinate. My groin, generals and bladder were the last to regain sensation. I did try some codiene but it felt like a sugar pill. They also routinely did anti biotics, I said no quinolonest to them before. I think it was Gentamicin. I’m so tired of trying to explain to professionals what drugs not to give me as I get so much push back.

 

I was urinating quite a lot yesterday but it feels alot calmer sensory wise but expect it to wear off as usual but I hope it could help like it has for Anya. It was more about getting the all clear finally for me. It still hurts to pee a bit and some blood/air after. It was not as traumatic as I was expecting though.

 

I went in at 7:30am and out at 3:30pm as it took me a while to get full use to my legs back. I would honestly give them 5 stars for the treatment and care.

 

So anyway I know this forum is about getting off drugs but this procedure was to rule out all those organic causes.

 

I’m not sure if the NHS does this as a on going treatment.

 

If none of this works and they can’t do anything for me further I’ll have to fully commit to the stretching, mindfulness, diet, relaxation stuff. I do speak to a therapist who has treated people in this way for all these various diagnosis’s but I’ve been a bit stuck letting go of the organic cause and damage from the drugs avenue. It’s probably because  pain isn’t an issue for me but the urge to urinate constantly and bizarre sensations are.

 

Anyway I hope this helps.

 

 

 

 

 

[Alan1234]

On 3/24/2022 at 7:46 AM, Boris said:

Hi Alan

 

I had the hydrodistension yesterday at Stockport stepping hill as I know you’re in the Manchester area as well. It was mainly to fully check the bladder and rule it all out. They basically said to me before the test I’ve tested negative for everything and there is some stuff they just don’t know the cause of. Apparently my bladder was absolutely fine and it expanded to 1 litre which was good according to them. I was a bit out of it so waiting for the official results. They did mention something about going for distillation next to see if that helps.

So obviously I was a bit nervous going in about the general anaesthesia. The staff were amazing and to be honest the actual hospital experience was surprisingly good, god bless those nhs staff.

 

I spoke to the anaesthetist about my concerns over the meds especially anti nausea drugs and akathisia as I cannot go through that again. He didn’t really know about it (as expected) but he was very understanding and I took the option of an epidural which I didn’t know was an option before. He said it was a much cleaner way of doing this med wise. I did though take the sedative option on top as I haven’t had an issue with them before. 
 

The epidural was such a surreal experience and I was worried about being awake for the procedure but it was over and done so quick. I didn’t feel a thing although it took around 3 hours to get full feeling back, so weird. I was in quite a lot of pain in the last hour until I managed to finally urinate. My groin, generals and bladder were the last to regain sensation. I did try some codiene but it felt like a sugar pill. They also routinely did anti biotics, I said no quinolonest to them before. I think it was Gentamicin. I’m so tired of trying to explain to professionals what drugs not to give me as I get so much push back.

 

I was urinating quite a lot yesterday but it feels alot calmer sensory wise but expect it to wear off as usual but I hope it could help like it has for Anya. It was more about getting the all clear finally for me. It still hurts to pee a bit and some blood/air after. It was not as traumatic as I was expecting though.

 

I went in at 7:30am and out at 3:30pm as it took me a while to get full use to my legs back. I would honestly give them 5 stars for the treatment and care.

 

So anyway I know this forum is about getting off drugs but this procedure was to rule out all those organic causes.

 

I’m not sure if the NHS does this as a on going treatment.

 

If none of this works and they can’t do anything for me further I’ll have to fully commit to the stretching, mindfulness, diet, relaxation stuff. I do speak to a therapist who has treated people in this way for all these various diagnosis’s but I’ve been a bit stuck letting go of the organic cause and damage from the drugs avenue. It’s probably because  pain isn’t an issue for me but the urge to urinate constantly and bizarre sensations are.

 

Anyway I hope this helps.

 

 

 

 

 

Hi Boris 

thank you for sending me this message and information.

we sound so similar. 
 

im awaiting a hydrodilation as they’ve basically told me the same thing they don’t know the cause. For me the pressure tests are showing I only have 200ml capacity so it will be interesting what happens with this. Thank you for telling me about the epidural as I’m very nervous of a GA being in this withdrawal and because of the heart symptoms and other tests I’ve had and symptoms they think I have autonomic neuropathy/neurogenic dysautomia. 
 

Sorry I’m not sure what a distillation is ? I’ve not been offered this so sounds interesting. 
 

There talking about doing the bladder stretching via hydrodilation to twice then said the next steps are Botox then a electrical implant.

 

thanks once again for sharing this Boris, it’s very thoughtful for you to tell me and I really appreciate mate thank you 

[Boris]

No worries Alan, this is truly a horrible condition to have.

 

I had 0 signs of overactive bladder on the urodynamics test so I wasn’t put through for Botox and they haven’t mentioned the implant yet probably for the same reason.

 

The distillation is put into the bladder and held there for a while and then you urinate it out. It’s meant to try calm the bladder, I think it penetrates the bladder wall as well. It’s a treatment for painful bladder syndrome aka we don’t know what’s wrong with you.

 

Anyway the procedure wasn’t as bad as I thought it would be on Wednesday and I hope it helps you.

 

[Alan1234]

1 hour ago, Boris said:

No worries Alan, this is truly a horrible condition to have.

 

I had 0 signs of overactive bladder on the urodynamics test so I wasn’t put through for Botox and they haven’t mentioned the implant yet probably for the same reason.

 

The distillation is put into the bladder and held there for a while and then you urinate it out. It’s meant to try calm the bladder, I think it penetrates the bladder wall as well. It’s a treatment for painful bladder syndrome aka we don’t know what’s wrong with you.

 

Anyway the procedure wasn’t as bad as I thought it would be on Wednesday and I hope it helps you.

 

Hi Boris

 again I was the same as you, no signs of overactive bladder on urodynamics. The Consultant then said he could offer me nothing. I asked for a second opinion. Even through the second Consultant said he doesn’t know the diagnosis he said the next step is hydrodistension like what you have had and then Botox if that doesn’t work finally an implant. 
 

very odd how much different in their opinion around Botox 

 

fingers crossed this works for you 

[Boris]

I’ve had a lot of different terms and opinions. They all seems to come back round to pelvic floor dysfunction. I’m doing stretches everyday following a video and I can actually sometimes get it to subside while doing it. So I need to focus on that and relaxing, can’t hurt and I’m very tense anyways. I’m also on some cbd my pelvic pain specialist suggested. That works on my anxiety well. The previous Amazon stuff I tried years ago did nothing.

I’ve had no relief from the hydro yet and I don’t expect much to be honest. Even if it did help I can’t find any information that the nhs offer this as treatment but only as an investigation.

 

I’m 5 years off paroxetine next month and over 2 years off pregablin so I’m not sure if it was caused by that or it will heal fully now. Everything else apart from tinnitus has more or less gone which I am grateful for.

 

Oh and I need to try exclusion diet as well.

 

 

[Alan1234]

6 hours ago, Boris said:

I’ve had a lot of different terms and opinions. They all seems to come back round to pelvic floor dysfunction. I’m doing stretches everyday following a video and I can actually sometimes get it to subside while doing it. So I need to focus on that and relaxing, can’t hurt and I’m very tense anyways. I’m also on some cbd my pelvic pain specialist suggested. That works on my anxiety well. The previous Amazon stuff I tried years ago did nothing.

I’ve had no relief from the hydro yet and I don’t expect much to be honest. Even if it did help I can’t find any information that the nhs offer this as treatment but only as an investigation.

 

I’m 5 years off paroxetine next month and over 2 years off pregablin so I’m not sure if it was caused by that or it will heal fully now. Everything else apart from tinnitus has more or less gone which I am grateful for.

 

Oh and I need to try exclusion diet as well.

 

 

I would be interested in the pelvic floor stretches if you have any pointers for videos. I’m actually a physio and really don’t know if it’s possible to stretch the pelvic floor due to it’s inherent anatomy and origin and insertion. I suspect its tone is governed by the sympathetic nervous system but I’m happy to be wrong as this isn’t my area. I worked on professional sport for the last 17yrs. 
 

yes I’m using a CBD oil called vitality that I got off Amazon I haven’t noticed any benefits tbh. I’m currently not able to work as I’m every 15mins so cost is abit of an issue. 
 

im only 12 months off a long long time on Anti depressants. 20+ yrs over 3 spells I think. The ironic thing is I wasn’t originally prescribed them for anxiety or depression but they damn sure have caused it but I think it’s mainly this problem that is stopping my mental health improving. Unfortunately though I’m not really 12mths off as I’m September they told me it’s probably my depression that’s causing it and advised me for go back on them. Big mistake it has made my bladder a lot worse. I was on them 3wks and still haven’t recovered. They have even offered me pregabalin and Amitryptaline since as they say i might have IC and that’s the treatment for it. So my first consultant wouldn’t offer me any treatment other than that as he saw me as I can’t be that bad as I say or non compliant. 
 

Funny you mention the diet. I’ve tried all kinds of the advice you find online. I don’t drink alcohol, I don’t drink teas, coffee or fizzy drinks, cut out accidic fruits, tomatoes all the advice you find online and it’s had no affect what so ever. So I’ve just paid an arm and a leg for a nutritionist who is also a GP. The only thing they have said is it could be an auto immune thing so have suggested I cut out gluten and go low oxalate. I will let you know how it goes.

[Boris]

39 minutes ago, Alan1234 said:

I would be interested in the pelvic floor stretches if you have any pointers for videos. I’m actually a physio and really don’t know if it’s possible to stretch the pelvic floor due to it’s inherent anatomy and origin and insertion. I suspect its tone is governed by the sympathetic nervous system but I’m happy to be wrong as this isn’t my area. I worked on professional sport for the last 17yrs. 
 

yes I’m using a CBD oil called vitality that I got off Amazon I haven’t noticed any benefits tbh. I’m currently not able to work as I’m every 15mins so cost is abit of an issue. 
 

im only 12 months off a long long time on Anti depressants. 20+ yrs over 3 spells I think. The ironic thing is I wasn’t originally prescribed them for anxiety or depression but they damn sure have caused it but I think it’s mainly this problem that is stopping my mental health improving. Unfortunately though I’m not really 12mths off as I’m September they told me it’s probably my depression that’s causing it and advised me for go back on them. Big mistake it has made my bladder a lot worse. I was on them 3wks and still haven’t recovered. They have even offered me pregabalin and Amitryptaline since as they say i might have IC and that’s the treatment for it. So my first consultant wouldn’t offer me any treatment other than that as he saw me as I can’t be that bad as I say or non compliant. 
 

Funny you mention the diet. I’ve tried all kinds of the advice you find online. I don’t drink alcohol, I don’t drink teas, coffee or fizzy drinks, cut out accidic fruits, tomatoes all the advice you find online and it’s had no affect what so ever. So I’ve just paid an arm and a leg for a nutritionist who is also a GP. The only thing they have said is it could be an auto immune thing so have suggested I cut out gluten and go low oxalate. I will let you know how it goes.

  
Ace that you are a physio, you’ll have some insight into it all then. I never feel like I can stretch the area where the issue is. From what I gather it’s more about relaxing and letting go of the tension down there? The physios I’ve seen all talk about the same relaxing, letting the tension go etc Which is a bit frustrating as I want them to straighten me out and release what I feel.

 

From what I’ve read there can be many causes and it’s normally a few coming together to cause cppd, prostitis etc. I suspect mine was high levels of stress with work, withdrawal, a break up and horrible neighbours. Or it’s simply the meds that have broken my bladder. It came on almost after a really stressful project and when you finish you suddenly come down ill with a cold. 
 

Shame to hear about the diet. I’ve cut alcohol, caffeine tomatoes etc before with no change. I need to stop vaping and do a full strict IC diet to see if it helps. I was considering even doing the carnivore diet. I already don’t eat dairy, eggs and yeast after an intolerance test which helped my fatigue.

 

Here are the stretches I’ve been doing. The whole channel is pretty interesting.

 

 

I speak to this guy (Karl) on zoom who also has a Facebook support group. A little expensive but he has seen lots of urinary issues. I’m struggling to make any progress with that as you know though:

 

https://www.thepelvicpainclinic.co.uk/

[Alan1234]

11 hours ago, Boris said:

  
Ace that you are a physio, you’ll have some insight into it all then. I never feel like I can stretch the area where the issue is. From what I gather it’s more about relaxing and letting go of the tension down there? The physios I’ve seen all talk about the same relaxing, letting the tension go etc Which is a bit frustrating as I want them to straighten me out and release what I feel.

 

From what I’ve read there can be many causes and it’s normally a few coming together to cause cppd, prostitis etc. I suspect mine was high levels of stress with work, withdrawal, a break up and horrible neighbours. Or it’s simply the meds that have broken my bladder. It came on almost after a really stressful project and when you finish you suddenly come down ill with a cold. 
 

Shame to hear about the diet. I’ve cut alcohol, caffeine tomatoes etc before with no change. I need to stop vaping and do a full strict IC diet to see if it helps. I was considering even doing the carnivore diet. I already don’t eat dairy, eggs and yeast after an intolerance test which helped my fatigue.

 

Here are the stretches I’ve been doing. The whole channel is pretty interesting.

 

 

I speak to this guy (Karl) on zoom who also has a Facebook support group. A little expensive but he has seen lots of urinary issues. I’m struggling to make any progress with that as you know though:

 

https://www.thepelvicpainclinic.co.uk/

I feel it’s more likely the meds have irritated/damaged the receptors and small autonomic nerve fibres if the bladder. There is nothing groundbreaking in the stretches. I don’t want to be too critical as anything movement wise should be better than nothing but the body up regulates or tightens due to increased sympathetic nervous system activity or anything it perceives as a threat, usually the tight area is a compensation or a result of something that’s happening above or below the perceived painful area or problem. I haven’t seen all his stuff so can’t comment but a whole body-head, ribcage, pelvic posture in relative good relationship, neutral alignment to each other is most likely the most effective strategy to achieve this. The trouble with this is a high level Pilates, spiral dynamics instructor would be needed. Pilates has been bastardised and completely misinterpreted by 95% of the propel claiming to teach it nowadays. They overcoach the brace and core stabilisation and make it a core workout and neglect the overall segmental body part relationships. I think breath work is also crucial as on a simplistic level the diaphragm and pelvic floor are the roof and the floor of the inner cylinder that connects pelvis and ribcage so using the breath in a healthy person theoretically you get reciprocal inhabition. Trying to relax an area through conscious thought is relatively futile and dumb though. It’s important as a learning tool to give feedback but as an exercise on its own it’s completely pointless. The body simply doesn’t work like this. If you detect that it’s tense it’s because of all the other things and the tenseness is a reflection of the state of all the other parts so by focusing on that in isolation it is just treating symptoms and is doomed to fail. Like I said though I’m no expert on this area. However what I will say is modern western medicine and traditional physiotherapy taught at university uses a reductionist approach to aid learning if the anatomy, the problem being is clinicians on the NHS or even private practice don’t often look at the whole person because the model of seeing one pattern every 20/30 mins means they just follow the reductionist approach they were taught at uni and yes for Simple acute injuries or trauma this will always work but for chronic problems the answer always lies elsewhere and sadly most don’t have the skills or deeper knowledge to do this. More and more good clinicians are realising this over the last 10-15yrs and the excellent ones are treating like this but sadly as it’s a numbers game and all about money for many, there are a large majority that aren’t bothered or naively ignorant.

[Boris]

Hi alan

 

Most if it goes over my head to be honest and I’d just like someone to explain why I feel the need to pee so much and all these bizarre symptoms moving and changing daily.

 

In my mind it’s either like you said the meds have caused nerve damage or dysfunction.

 

or the stress and especially the akathisia have caused pelvic floor dysfunction. I use to squeeze my core to try stay still in anger especially at work. I remember sitting in traffic in the car and jamming my legs and pelvis into the side of the car to tolerate it.

 

Like I said this came on a week or two after that all went, like the end of a big stressful project when you get ill.

 

I’ll continue with the stretching and relaxing as it can’t hurt and benefits my highly strung mind anyways.

The therapist I see doesn’t really prescribe any stretching or manipulation anyways. He basically said what you did there. It’s all about calming the nervous system down.

 

[Alice1]

Just wanted to chime in as I'm going through the same stuff . I don't know if you guys have seen this but it seems legit. There is no immediate resolve though, which sucks .  

 

 

[Alan1234]

10 hours ago, Alice1 said:

Just wanted to chime in as I'm going through the same stuff . I don't know if you guys have seen this but it seems legit. There is no immediate resolve though, which sucks .  

 

 

@Alice1

Hi Alice

thank you for the video and your welcome to chime in.

I totally agree with what the gentleman is saying in the video. 
i have a MSc in Physiotherapy and many other post grad qualifications. What he is saying makes total sense and encompasses about everything we know from the evidence base from neurological and musculoskeletal research and practice. I’m not a pelvic floor specialist, but the issue with many physiotherapists is they are still basing there treatments on theory that was taught 20+ yrs ago at university, and then it was probably 15yrs out of date at least then, obviously in the days before the internet and the huge change in information and evidence availability. 
 

stretching muscles and localised Muscle techniques here will provide transient symptom relief at best. We know this, any decent therapist knows this but they get people coming back paying the money as they are desperate but it’s unethical in this day and age. It’s doomed to fail with chronic conditions and isn’t fair on patients. Ultimately there is a psychological component that must have been an initial driver or contributed to a perfect storm of causation. Other factors would be spinal injury/pathology, sacral/hip/groin injury/pathology and obviously any internal diet or fluid intakes causing inflammatory/toxic stress reactions locally. The trouble is the nervous system once this behaviour has set in won’t go back to the previous state unless it feels safe and even after the stress, irritant or injury has gone will require retraining to re function   normally again, and that can only happen once these physiological and psychological stressors are gone, even then it will be very easily provoked and neurologically stored in the brain.

In simplistic terms this is about all we know as an educated hypothesis to what is going on.

[Believer]

Alan, how are you doing?

[Alan1234]

2 hours ago, Believer said:

Alan, how are you doing?

Hi @Believer

unfortunately I’m not great. I’m not on any medication anymore. I’m just crying everyday for large parts of the day and suicidal. Probably not surprising when I’ve been on the meds for the best part of 25yrs and also what’s happened since trying to come off them. I think I’ve been worse the last few days as it’s the holidays and first easter without my wife and family. 
thank you for checking in on me, I really appreciate it. I hope your ok 

[Believer]

Allen, 

I am sooo sorry to hear that.

 

Unfortunately, I am similar and still slowly cutting away at my dose. Some moments are better than others, but every day brings challenges. I’m weary from all of it, but you gotta keep going, with hope and prayer.

 

How did you come off the last of your drugs?

[Alan1234]

1 hour ago, Believer said:

Allen, 

I am sooo sorry to hear that.

 

Unfortunately, I am similar and still slowly cutting away at my dose. Some moments are better than others, but every day brings challenges. I’m weary from all of it, but you gotta keep going, with hope and prayer.

 

How did you come off the last of your drugs?

 

1 hour ago, Believer said:

Allen, 

I am sooo sorry to hear that.

 

Unfortunately, I am similar and still slowly cutting away at my dose. Some moments are better than others, but every day brings challenges. I’m weary from all of it, but you gotta keep going, with hope and prayer.

 

How did you come off the last of your drugs?

I watered tapered off. Dropped 0.020mg a day. I was already in protracted withdrawal over the last two years and 15different drugs all CT or DIrect switched so i was already screwed. I don’t think it made any real sense to taper when i never knew or had the opportunity before. I think the house already bolted a long time ago

[Believer]

That sounds rough. So you’ve only been med free for a couple/few weeks? 
 

I hope that once I’m off I’ll see a swing for the better. I’m just trying to go slow enough not upset the already upset CNS. 😫

[Rosetta]

Hi, Alan.  I was just thinking and wondering how you are.  Not doing so well, I see, but your positive attitude continues, and I know that helps a lot. Hang in there.  I believe there is light at the end of the tunnel. - Rosetta

[Alan1234]

21 hours ago, Believer said:

That sounds rough. So you’ve only been med free for a couple/few weeks? 
 

I hope that once I’m off I’ll see a swing for the better. I’m just trying to go slow enough not upset the already upset CNS. 😫

I would ignore what I’m like. I’ve been med free for a month or so and I have noticed no improvement, in fact I’m getting worse but In wasn’t on a therapeutic dose anyway and like I said the damage appears to have been done months and months before.

 

I’m sure you’ll be fine with such a slow taper 

[Alan1234]

2 hours ago, Rosetta said:

Hi, Alan.  I was just thinking and wondering how you are.  Not doing so well, I see, but your positive attitude continues, and I know that helps a lot. Hang in there.  I believe there is light at the end of the tunnel. - Rosetta

@Rosetta Hi Rosetta 

thank you for your message and thinking of me. Yes I’m not sure if there’s any light at the end of the tunnel. I’m housebound now due to my bladder. I’m also in quite severe pain in my legs. I’ve been diagnosed via EMG and nerve conduction studies with peripheral neuropathy. They are saying that’s the cause of my bladder also. I asked them don’t they think it’s strange that as someone with no other health conditions, I’m not overweight, i don’t drink or smoke that I have this. I asked if it could be the years of Anti depressants but they said no. They have offered me Gabapentin for the pain. I have refused it upto now. However the pain is so severe some days and normal pain killers don’t do anything I can’t even sit still or lie down with it, if it continues to get worse I will have to take the drugs. It can’t get much worse I don’t think it’s that bad, I guess if I take their drugs it will at best mask the pain and not prevent any damage if there’s another cause that hasn’t been detected.

 

i hope your well

[MrMiyagi]

18 minutes ago, Alan1234 said:

@Rosetta Hi Rosetta 

thank you for your message and thinking of me. Yes I’m not sure if there’s any light at the end of the tunnel. I’m housebound now due to my bladder. I’m also in quite severe pain in my legs. I’ve been diagnosed via EMG and nerve conduction studies with peripheral neuropathy. They are saying that’s the cause of my bladder also. I asked them don’t they think it’s strange that as someone with no other health conditions, I’m not overweight, i don’t drink or smoke that I have this. I asked if it could be the years of Anti depressants but they said no. They have offered me Gabapentin for the pain. I have refused it upto now. However the pain is so severe some days and normal pain killers don’t do anything I can’t even sit still or lie down with it, if it continues to get worse I will have to take the drugs. It can’t get much worse I don’t think it’s that bad, I guess if I take their drugs it will at best mask the pain and not prevent any damage if there’s another cause that hasn’t been detected.

 

i hope your well

I dont understand the leg pain it's been years with windows and waves of it. I have the buzzing, burning, tingling, twitching, weakness and also loss of motor control in left lower abdomen and left glute medius. 

 

The only other testing that has come back positive last year was some ridiculopathy and Lyme/Bartonella I see it's very difficult to test for that infection. 

 

I did seem some improvement with antibiotic treatment but it slowly returns.  🤷🏻‍♂️ 

 

 

[Rosetta]

Buzzing, burning, tingling, twitching, weakness and loss of motor control — I had that on my right side.  I believe it’s Dystonia.  Dystonia can be painful, but it fades as dysautonomia resolves.    I don’t have pain now.  
 

Neuropathy is a sign of WD, PWS.  It was the first sign of WD that I went to the doctor to check — after I quit Zoloft CT.  (Little did I know that there were tons of signs before that especially with my right foot, hip and eye.)  I thought I had had a stroke.  The doctor was very nice, but it never occurred to him that the AD would have anything to do with it.  

Gabapentin is a drug you will see on SA as very difficult to quit.  Very similar issues as ADs.  It’s apparently all the rage with doctors today for

pain.  I’m sorry to hear that your pain is so strong.  At least, now you know to not try a full dose, but a tiny bit to see how it affects you, if you do try it.

 

I hope you can try heat on your pain.  I bought chemical heat patches.  Maybe you can get them for free through NHS?  They really help.  Microwaveable heat wraps, Bed Buddies, buckwheat (or soba) filled pillows will help you.  You could fill a sock with buckwheat yourself.  You could also get an electric foot bath.  The warmth will move up your legs via your blood.

[MrMiyagi]

21 minutes ago, Rosetta said:

Buzzing, burning, tingling, twitching, weakness and loss of motor control — I had that on my right side.  I believe it’s Dystonia.  Dystonia can be painful, but it fades as dysautonomia resolves.    I don’t have pain now.  
 

Neuropathy is a sign of WD, PWS.  It was the first sign of WD that I went to the doctor to check — after I quit Zoloft CT.  (Little did I know that there were tons of signs before that especially with my right foot, hip and eye.)  I thought I had had a stroke.  The doctor was very nice, but it never occurred to him that the AD would have anything to do with it.  

Gabapentin is a drug you will see on SA as very difficult to quit.  Very similar issues as ADs.  It’s apparently all the rage with doctors today for

pain.  I’m sorry to hear that your pain is so strong.  At least, now you know to not try a full dose, but a tiny bit to see how it affects you, if you do try it.

 

I hope you can try heat on your pain.  I bought chemical heat patches.  Maybe you can get them for free through NHS?  They really help.  Microwaveable heat wraps, Bed Buddies, buckwheat (or soba) filled pillows will help you.  You could fill a sock with buckwheat yourself.  You could also get an electric foot bath.  The warmth will move up your legs via your blood.

I do find the heat to be the only thing that helps thank you for your response it has been a long journey 🙏🏼  I'm still waiting for the muscle function to stay around longer than a day and I agree it's almost like a stroke with out evidence. I have had ANA testing come back fine along with the blood testing for Myasthenia Gravis all fine but I do have some obvious small fiber neuropathy In the both legs that burn and discolor. I remember last year when I quit effexor using a 6 month taper after over 20 years of use I developed autonomic neuropathy and that was [Brutal] and led me to reintroduce Paxil unfortunately and then Gabapentine then Valium 🥴  these doctors are completely clueless or blinded by 💰 

 

I'm jealous of those that are able to function and aren't bedridden for over a year like myself. I hope to join the pack one day 🐺 

[MrMiyagi]

My apologies to the poster I just realized his is not my thread 😓 😬

[Rosetta]

Easy to do, @MrMiyagi

[Rosetta]

Thinking of you, Alan.  I hope you are getting some relief. - Rosetta

[Alan1234]

On 4/29/2022 at 9:54 PM, Rosetta said:

Thinking of you, Alan.  I hope you are getting some relief. - Rosetta

@Rosetta I’m the worse I’ve ever been. I have horrendous physical multi system problems. I’ve been referred to a POTs clinic with all my heart and bladder stuff and now neurological problems they think it might be vaccine related 

[ChessieCat]

4 hours ago, Alan1234 said:

I’ve been referred to a POTs clinic with all my heart and bladder stuff and now neurological problems they think it might be vaccine related 

 

If they prescribe any drugs, I suggest that you do your own research BEFORE taking anything.  And also do a drug interaction check for all drugs your are currently taking and add in the suggested drug/s.

 

I also suggest that you ask lots of questions, eg is it proven to work how does the drug work/what is it meant to do, what are the possible side effects etc.  Basically trying to find out if they are just throwing something/s at it hoping that something works.

[Rosetta]

I’m so sorry to discover you are feeling worse. Of course, I agree with CC, but I hope you can find some relief.  I had POTS for quite a while — years — but it finally resolved.  Please don’t lose hope.  There is a bottom, and you will go up from there.  I know that’s very cold comfort right now.  I just hope nothing makes it worse for you.

Rosetta

[ThatOneGirlStitch]

On 4/5/2021 at 10:12 AM, Rosetta said:

ach time there is a change (dose, type, addition of a med) the system becomes more fragile.  We notice that with each successive change, the body’s reaction to a subsequent change is more severe.

This is from an old post. Is it true that we just keep becoming more fragile. Our brains just won't be strong as they were before?