WestOn4th: Amitriptyline Discontinuation Syndrome/Protracted Withdrawal?

[Hope2001]

I tried atenolol and react to it. Differently than for bisoprolol but I dont feel well. I am thinking if this cross bbb on some level. I have no choice my bp is so high. I need to take med. Is there any other beta blocker to try?

 

I have atenolol 25mg and i can take only half. 

[WestOn4th]

Hey Hope,

 

My experience is limited to metoprolol, which I had nightmares constantly, hallucinations after waking first thing in the morning, and short-tempered, irritability issues. I switched to atenolol, and almost all of that stopped. Since I was taking amitriptyline at the same time though, I still had some irritability issues. I found out later it was because amitriptyline allows many medications (even water soluble ones like atenolol) to cross the blood brain barrier to some degree. But the switch from a fat based (metoprolol) to water based (atenolol) really was a very positive change!

 

When I stopped amitriptyline and began having post acute withdrawal symptoms, I reacted to atenolol really badly also!

I tried taking 12.5 for heart arrhythmias and reacted horribly, not able to sleep, and my heart pounded all night long for an entire day -- with panic and anxiety to go along with it!  I finally tried atenolol again just recently, starting with 1-2 mg for a few days, then to 4-5 mg (my scale isn't the best so I am only close to those doses. I haven't really reacted to the smaller doses (beyond the normal symptoms of course).  So maybe you can try to slowly increase that 12.5?  That is the only experience I have to share with you.  Perhaps OnMyWay has some advice, with all of her experiences and knowledge picked up along her arduous journey. 

 

There are other water soluble beta blockers out there, but I am the one that chose Atenolol, and requested it from my doctor a couple years ago simply because my research showed that people overall reacted the least amount to Atenolol!  And the nature of the water soluble Atenolol presented the least amount of brain interaction. 

 

I wish you luck on figuring this out quickly!

[WestOn4th]

Hey OnMyWay!

 

I hope you are doing well!  I wanted to update you on where I am at, and get your ideas. I have been able to work my way up in magnesium (100 mg three times a day), and atenolol (took a full 25 mg for the first time last night, after working my way up from 1 mg over weeks).  I have been on the three a day magnesium for 9 days, and it definitely helps. The reason I am trying 25 mg of atenolol is because 12.5 didn't help the arrhythmias much at all. I think even the first 25 mg tablet helped a bit more, and might even get better if it doesn't slow down my heart rate too much!

 

I really wish I understood why it affects my breathing so much. I have noticed it has not improved very much, and it seems to have become worse!  It is like the muscles don't work smoothly, but rather labored at times -- even during a workout or bike ride.  And my long bike rides help, but don't seem to help as much as they did before the onset of PAWS. I still don't understand why there was such a delay after the physical acute withdrawal. What are your thoughts?

 

I did find a home, and am due to move on the 13th, if all goes well. Thank goodness my brother is helping me!  I still feel so very off, often with flu-like symptoms in the morning, along with the arrhythmias, off breathing, anxiety, dizziness, and other off and on strange things.  Do you think 300 mg magnesium is about right?  I am taking the Doctor's Best glycinate form.

 

Please let me know how you are!!!

 

 

[WestOn4th]

Hey OnMyWay,

 

One last thing: my Ankylosing Spondylitis has also be horrible through all of this. This flare up has lasted as long as I have been having issues, but has progressively worsened!  I am having to take nsaids, which are not even taking care of the pain like it used to.  Aleve wasn't working, so trying Ibuprofen.  It must be related, don't you think?

[Katerina]

Hi. I noticed you stopped Amitriptyline in February. I stopped this drug in September 2022, almost a year ago. My physical symptoms were and still are horrible... beside others chest pain and troubles with breathing. I had heart scan made a few years ago when I was on high dose of Amitr (because severe tachycardia). It was ok. Since then no heart medication, no scans, no lab tests. I strongly believe my problems with breast pains and air hunger are somehow connected with Amitr (side effects or wd symptoms?).

You made very fast taper after being on Amitr for long. I made very long and slow taper from 35mg of Amitr and still had hard time... so no wonder that you are feeling ill after so fast taper.

What I have foung out in wd, that being physically active makes things worse. What helped in first years doesn ´t seem to help now. I used to walk for hours, swim, gardening ... when my symptoms hit. But now I must be very carefull about physical activity... because even short walk or swiming for just a few minutes makes my symptoms worse (especially dizziness and head preasure).

I reinstated Amitr several times (before I started systematic taper 3plus years ago). It didn´t help for longer than a few days... then all the hell started again. 

So these are my experience with Amitr.

Many greetings Katerina

[Onmyway]

On 8/2/2023 at 2:09 AM, WestOn4th said:

Hey OnMyWay,

 

One last thing: my Ankylosing Spondylitis has also be horrible through all of this. This flare up has lasted as long as I have been having issues, but has progressively worsened!  I am having to take nsaids, which are not even taking care of the pain like it used to.  Aleve wasn't working, so trying Ibuprofen.  It must be related, don't you think?

Hi Paul, 

sorry for the delay in responding. It has been a relatively busy week and I saw your message and couldn't respond at the time and it slipped my mind. Sorry about that. 300mg magnesium sounds good. How are you doing with the atenolol? 

 

Withdrawal is a complicated 'entity' and it changes all the time - sometimes the emotional symptoms dominate, sometimes the physical, it impacts all systems of the body so it makes sense that it may cause flare ups of immune disorders. I am really sorry to hear that it is making something so difficult as AS even harder.

 

This may help explain (I can't remember if I linked it before). Pls keep me updated on how you are doing. I check this regularly even if I don't get to respond as regularly.  Has a move date been set? 

 

 

[WestOn4th]

Katerina,

 

Thanks for sharing your experience!  I know I didn't taper much at all, simply because I wasn't trying to.  I didn't even

understand there could be such problems since I had started and stopped amitriptyline many times over nearly 20 years!  And I never had this happen to me before!  So I believe the starting and stopping so many times finally caught up with me!  

 

Being physically active really helps me overall, even though sometimes my heart palpitations get a bit feisty on my harder mountain bike rides. So it's amazing how our responses to drugs differ so widely from person to person!

 

So thanks again for giving me some of the things that happened to you.  I think it always helps to know as much as possible when it comes to this terrifying process!

 

~Paul

[WestOn4th]

OnMyWay,

 

Good to hear from you!  Glad to know you are doing ok!

 

I was able to get the atenolol up to the normal 12.5. It didn't stop the crazy heart fits, but toned them down a bit. I tried taking 25 mg a couple times, and it helped the heart even more but made me feel sluggish (and slowed my heart down too much) -- so went back to 12.5.  I also did something very bold since I am still desperate. I noticed when I impulsively had some beer after I was able to buy that house in North Carolina. that I didn't react to it like I did before. So I was bold enough to increase atenolol to a larger dose quickly, and didn't respond to that either.  So I then became bolder still and tried a 12.5 dose of amitriptyline, and did not react negatively to it at all!  I had the familiar sedative effect I had been used to from taking it for years. I have since taken the 12.5 three days, and boldly went up to 25 mg.  It worked more like it used to. I had my second night last night which also went smoothly. My breathing improved after the third day of the 12.5 dose, and it was obvious when riding my bike even more!  And my heart weirdness has reduced even more!  So I am taking 12.5 of atenolol for now, and 25 mg of amitriptyline!

 

It scares me a bit that I took this drastic step, but my breathing and heart issues were really bad!  My thought process was: 1) Trying to be ready to take this huge move to North Carolina coming up this Sunday, and 2) Hoping if it stabilizes me well, I can stay on it a few months and taper off really, really, painfully slow in my new environment in North Carolina!  I hope this isn't disappointing to you OnMyWay.  But I had one last wrinkle: The pain of my AS revealed so many difficult pains in my spine, other joints, and seemed to even the muscle pains in the back seemed constantly irritated and inflamed!  The amitriptyline was either still working, or the abrupt stopping of the amitriptyline that created the hypersensitive nervous system has been causing all of these pains in this flare up!  Or both!!  All I know is it became worth trying for so many reasons!

 

I can't risk taking ibuprofen as much as I have right now. My strict vegan diet got me out of stage 3 CKD and into the normal range.  And anti-inflammatories have wrecked my kidney function a couple times in my 20's & 30's, since they were the first line treatment back then. I stayed with amitriptyline because it didn't affect my kidney function at all (according to lab work over the years). And it really made the pain tolerable.  While I haven't had all that much relief so far, it might be that I need more time on it at this 25 mg range (since I was used to taking 50 mg before I stopped).

 

I am really hoping this works. Looking back to before I stopped amitriptyline back in February, the lab work in December was the best, near perfect scores in every category!  And I was taking 12.5 atenolol and 50 amitriptyline during that time.  What are your thoughts on all of this?  Have I lost my mind?  Haha.  

[Onmyway]

Hi Paul, 

I am not disappointed with you - it is your body and you know what you are feeling best. If something works and helps you - pls keep doing it. You are in a lot of pain and stress already so whatever can relieve some of that is ok. I would wait for a bit until the current changes settle before attempting to updose again. You will not feel the full effect of the changes for a few days/weeks anyway. Let's check in again before you decide to updose. You will want to have seen some benefit from the ami and no side effects before going up. Also, it is better to do changes one at a time so you know what is helping - it may be the atenolol or the ami. 

 

But I would strongly discourage alcohol - not out of being moralistic etc. but people who have considered themselves recovered for months/years can sometimes be sensitive to it suddenly and be set back for months. No need to play with fire at this stage. Plus there are such good alcohol free versions of beer these days! 

 

Can you pls update the signature with these new changes? I don't want them to be missed when some question comes up later and I have forgotten the details or someone else is answering. When is the move? 

OMW 

[WestOn4th]

OnMyWay,

 

Thanks for the input!  I updated the signature. I know I rushed how I began these things. I only staggered days instead of weeks. But as my timeline was closing in, I realized I needed to feel better to accomplish this move!  I am taking a home I lived in for 8 years, and reducing all possessions down to whatever is going to fit into the back of my Toyota Tundra!  Even though I feel liberated doing all this, I haven't felt so great at all -- and have had some days I wasn't able to accomplish much of anything!  I only care about my music, the bare essentials, my doggies, and some tools. Time is clicking on by, and since my brother is arriving this Sunday (the 13th), I need to get my house completely cleaned out. And that includes two sheds that have accumulated the typical crap over 8 years!  Haha

 

I know the beer was impetuous, and not a good idea!  It was the day I actually found a home, two days shy of the deadline the buyer gave me before bailing on the sale!  My neighbor popped over with some beer.  Grrr -- such a weak human hear!  😉

 

BTW, Mom is such an amazing show!  It is so well written compared to most shows!  So thanks for that also!  I really appreciate you OnMyWay!  Have you done anything interesting lately?  How is your progress going?  Are you still dealing with hypersensitivity?  

[WestOn4th]

OnMyWay,

 

Well, I made it to North Carolina safely!  My brother was paramount in the drive across the country!  I struggled with lightheaded, dizziness much of the time, so it was nice that my brother didn't mind doing most of the driving!  I can't believe I am here!  It is so green, with trees and grass all from rainfall; not from watering like is required in southern California!  It has been a struggle, but I am hoping taking amitriptyline again will continue to stabilize me!  I know stopping for months really did me in. And the waves and windows are still rather dramatic at times. But the anxiety is a bit better, and the heart palpitations are not as severe. I actually stopped taking atenolol because it just added to the dizziness too much!  

 

I took a nose-dive also, from eating perfectly -- to eating too much fast food (my brother ate fast food the entire trip, and I caved!).  I had stayed with my brother since we arrived on the 16th, waiting on the fence to be put up. They completed it today, so this is going to be the first night in my new home!!  Now I have to figure out this quaint, windy country roads of Wake Forest, and get used to shopping at new stores!  I really need to get back to my strict plant diet!  Haha

 

I hope you're doing great OnMyWay!  Just wanted to give you this update!  I can definitely see why it is so difficult to determine how a person is going to react to reinstatement!  It hasn't felt anything like when I first began taking this drug, nor how it felt when I was on it consistently!  I am going to stay with the 25 mg, and see how I do over the next few months, as you so advised me. Overall, I believe I am slowly getting back to normal.  It has been three weeks since I began reinstatement (three days on 12.5 and 25 mg the rest of the time) -- so I realize I must be patient and give this drug time to work!  I think they mention it could take weeks or months to fully resolve this chaotic phase I have been in,  is that correct?

 

As always, thanks OMW, for all of your caring input!

[Onmyway]

Hi @WestOn4th, 

I somehow missed this post (maybe saw it, intended to respond and then something happened) and was randomly thinking of you and how you are doing. Can't believe it's been 3 months! How are you feeling? Did you get used to the new house? Are you feeling better? What a brave thing you did moving so far away!

 

Thinking of you, 

OMW

[WestOn4th]

Hey OMW,

 

No worries!  Thanks for checking in on me!

 

I have improved a lot in the mental aspect of things. I was having brain zaps, incredible fear, feeling like I was going to die all the time; and so much more. That has improved a lot!  But my AS kind of went in a frenzy physically, causing a lot of pain in tendons and connective tissue in places I've never hurt before. I have had to take anti-inflammatories since I arrived here just to get through each day. It became hard to do the daily workouts I did, and I was shying away from them to avoid more pain.  But I have to force myself to do more, which I started doing lately. Sometimes I just get so angry over hurting all the time.  Eating well helped so much before this autonomic dysfunction nightmare. It hasn't seemed to help very much lately, but I continue to try, knowing it is necessary.

 

I have been able to ride my brother's Trial's motorcycle though.  I had to miss a few times due to the tendon pain, but overall it is amazing I am able to do it!

 

There is a pond down the street where I am able to take my dogs everyday.  Seeing deer has been a daily thing until just recently. Fall has exposed them a bit more, since we have a mixture of trees that lose all their leaves, and pine trees. I feel lucky overall, and just have to keep trying to stay up. The problem with the AS is the depression part of it. At least I am able to drink some week coffee to help with that

 

My biggest concern lately is just getting off these darn NSAIDS, to give my kidneys a break!  I have needed to resume the 25 mg of atenolol, and had to go to an Emergency room to get them. I have noticed I now can't seem to control my heart and blood pressure when I see doctors. I feel so screwed up mentally that my heart and blood pressure are sky high when seen by anyone!  I know I am better in most ways though, and just have to keep on working through this stuff!

 

I have a question:  I am going to see a doctor for the first time on January 18 of next year. Do you think I should even try to explain to him what I have gone through?  This doctor is the one my brother and his wife use, and he is highly rated. What you think?

 

Thanks for getting back to me!  Don't worry about the absence. At least you respond when you can.

 

~Paul

[Onmyway]

Hi Paul, 

I admire so much what you have accomplished in such difficult times - moving across states, buying a new house, so much stress and you did it while going through WD. Kudos! 

 

It is such great news that you are feeling improvement of the emotional symptoms. It is a good indication that the autonomic dysfunction is going next. It's a pity the AS is acting up but hopefully as things calm down, it will as well. Are the workouts to keep AS at bay or just something you used to do. If they are just something you used to do and not strictly needed it might be better to do milder versions rather than very strenuous ones. This will also continue to get better. 

 

I am just picturing how pretty it must be where you are and having that every day while walking the dogs sounds amazing. 

 

How are you tolerating the atenolol? It is perfectly understandable to have a higher heart rate/blood pressure when you see a doctor. Most people have this but during withdrawal our nervous system's reactivity is increased so with us it is just more exaggerated. 

 

I don't see an issue telling you GP. In my experience most of them do recognize how powerful these drugs are though they may not know the full range of effects. Some do get defensive and start dismissing you or attacking you as "crazy" but since you took these drugs for pain, rather than for MH issues you may be spared the latter. But in general it is better if the GP knows your full history and medical state, imo. 

 

Please keep us updated how that went. 

Lovely to have you back Paul! 

OMW

PS. Be careful with the motorcycle :), we want you healthy here!

 

 

 

 

[WestOn4th]

Hey OMW,

 

I appreciate your support, as always!  It was an immense journey!  I still can't believe it all actually worked!  The dogs took it incredibly well!  The only snafu was when I moved into my house. Since I wanted a fence around my property, I stayed with my brother for the first week. So my dogs went from having a stable household with a fenced yard, to staying in the truck one night (a totally bad idea), 3 different hotels, my brother's house, and finally my home. I ordered a doggie door first thing, but had to go a couple nights until it arrived. Tesla had a couple accidents over night. I think it was he stress of staying at all the different places, and not having a doggie door. Sure enough, as soon as I installed the doggie door, no more problems!  And better yet, both dogs had their bravado back as they went through the door and announced to the neighbors, "This is our house!".  Haha  I was the most amazing thing!  They were then settled in!  Very cool!

 

It is very, very green here -- with eighty food trees everywhere!  All the roads are windy, country style, packed with trees (I mean no gaps, except around housing and shopping centers). And the huge grass lawns everyone has, makes it a necessity to have driving style mowers. The pond is one minute drive away, which makes it so fun to take the dogs there nearly every day!  The mosquitos and ticks are the only bad part in summer. I didn't really discover these areas to take the dogs for the first couple months, and only found them riding my mountain bike!

 

Yes, while my emotional side is more stable, I am still in this AS phase, and in pain. The last couple weeks I have had fever and nausea quite often. Do you think this is part of the autonomic dysfunction also?  I was worried that the NSAIDS were part of it, but have never had stomach issues from them -- only kidney problems. I am going to try to switch from Ibuprofen to Aleve, to see if that helps. In no way do I feel normal though. I have been doing some pet visits for the past 6 weeks, but limit myself to only a couple clients that I do three days a week. This past week, I felt very off, and a bit irritable as well as the fever and nausea. 

 

I have tolerated Atenolol fairly well, though sometimes not so sure if it is the Atenolol, Amitriptyline, or my AS that is causing all these issues. I really need to be able to work, and wish to work more in order to make ends meet!  I must go into very expensive homes for this job, and don't want to falter in some way. The brain zaps are still present, but certainly not like they were!  The first 6 weeks, I was in pain and felt like I would just blank out at the strangest times. Using the staple gun while helping my brother, I felt like I suddenly didn't know how to put staples in it!  Just odd as heck, since I am quite good at fixing things and have used a staple gun a lot during my life!  There is even times when my brother just said something that happened, and I asked him about it -- not even realizing he had just told me about it!  It makes me feel completely insane at times!  It has been four and a half months since back on the Amitriptyline, but realize I am not even close to being stable yet!  My brother tries to understand, but he really just can't. At least he tries!  The good news is that he completely trusts me with the pet visits, and is ready to give me more when I am able to handle them (feeling better)

 

These past couple weeks have been a little scary, hoping I am not going backwards -- getting worse!  The depression amongst everything I am happy about is also quite frightening!  The pain and tightness of being fused throughout most of my spine, makes getting out of bed quite trying. I am grateful for all I have, that is for sure. It is just hard when you feel under the weather so much of the time.

 

Thanks OMW!  I do appreciate the feeling of not being utterly alone during this difficult time!  I am trying to be careful on the motorcycle. The motorcycle sport we ride is called Trials, and involved riding over obstacles without putting your foot down. I was quite good and highly ranked years ago. I can still do quite a bit now, but have not had a single time out riding that I felt normal. It is scary to think people have spent years in this state!

 

Thanks again!

 

[WestOn4th]

Hey OMW,

 

Haven't heard from you in awhile. The past several months my AS has really gone into new territory.  I am trying to understand if this phase is still related to the autonomic dysfunction, or is something else?  While my panic & anxiety has improved a great deal, the pain from AS has become severe. I am in pain all the time, and for the first time in my life I am considering biologics. The enthesitis I have endured for over 8 years has become so painful in both elbows and my left achilles --- that all movement has become a challenge.  I was hoping it was a phase that would come to an end. But I have had to resort to NSAIDs the past 7 months; and they are not even working well at all.

 

Do you know others with AS that have been thrown into a hyper-phase like this?  The toll emotionally has become crippling as well. I am angry all the time, feeling like this is the end of the road for me. It just keeps on going and going and going with no relief. If you have any insight, please get back to me.  Thank you.

[Onmyway]

Dear @WestOn4th

I am so sorry you're in so much pain. Having that on top of withdrawal must be excruciating. 

 

I don't know, unfortunately, whether it is related to the withdrawal or not. I was recently talking to a doctor friend  and he was explaining that pain only happens in the brain in the sense that we have receptors all over the body but it is the brain that tells us that what we feel is pain. If withdrawal messes up with our brains then of course it is possible that it may impact our pain perception. I know people who have burning sensations and pain from withdrawal. If it impacts the nerves, it can impact our level of pain. 

 

At the same time, AS is an autoimmune condition which can be impacted by our nervous system and overall physical and mental health so it's possible that WD makes it worse. 

 

Or it could be unrelated and just a change in the state of a chronic disease. 

 

I wish I had a better answer. Are you worried about taking the biologics because of the side effects or because of the price? Or does moving to them mean (to you)  that the disease has gotten worse and you're not ready to accept that? My understanding of AS is that it can get worse but it can also get better similar to our waves and windows, so going on these drugs is not irreversible. 

 

I wonder if trying MBSR may help with pain management? 

 

I wish I could take some of the pain away but in the absence of such magical powers sending you hugs and warm thoughts. 

 

Omw

 

PS. How are the doggos? 

Edited April 15 by Onmyway

[WestOn4th]

Hey OMW,

 

I really don't have a clue anymore what is causing this landslide. But I went from my strict diet doing wonderful things, to stopping amitriptyline a year ago -- and have been spiraling down in one way or another since. The enthesitis reached new levels of pain in the elbows and achilles, with the addition one in my neck and one in my wrist. And now it is back in my SI joints, which hasn't happened since my surgery in 1985 to fuse my lower back. 

 

My dogs are great, thanks for asking. I was walking them at the pond every morning for months, having to modify the walk as the achilles got worse. I had to stop that a week ago to see if I could slow down the achilles issue, but with the hips hurting now involved I am having a hard time walking.  I am trying to get an appointment with a Rheumatologist but so far they are slammed until September. I am on cancellation lists till then. I have been taking NSAIDs since I have been out here, but much lower levels than I am trying now. I increased Aleve to 880 daily, but didn't seem to get even a hint of improvement. So I switched to Ibuprofen, now taking 1800 daily the past 10 days. Instead of improving, my hips began hurting. This morning I can hardly move. I have done everything right with diet and have been spiraling down for a year.

 

I have been hanging on by a thread for a year. I am so very exhausted. I try to get into my music, but really just don't feel like it. I need to go to the store for food, but am not up for that this morning. I am not liking this reality. I have tried over and over to reapproach this; to try this or that -- but it has taken its toll. 

 

Thanks OMW for all of your efforts. I think I have reached about 12 new levels of low, thinking each time there is no way things can get any worse. I was used to being known as the toughest SOB; and now I feel fragile with everything hurting all the time. I have no idea what to try anymore. 

 

 

[Onmyway]

Hi @WestOn4th, I'm so sorry you are dealing with much worse limiting pain. I wish I had a way to magically lift it. But in the absence of magical abilities I'm sending you virtual hugs and warm thoughts.

 

From your history we know these are related to withdrawal of ami which seems to work through a pre-existing condition.  The question is would disease modifying agent help in this case and the answer may very well be yes but it seems like it's not easy to get these given the various waitlists. It's possible that once withdrawal is over they may not be necessary if you do end up going on them as your body may calm down. 

 

Can your primary care prescribe the more specialised drugs while you're waiting for the rheumatologist? 

 

I'm a bit worried about risk of bleeding with such prolonged high dose  NSAID use. Do you have a doctor who can advise on ways in which you can lower those risks? Can you test yourself for occult blood in stool. In Europe those tests are available over the counter but not sure in the US. But your doctor can easily test them and test you for anemia as well. 

 

The next line for pain used to be Cox - 2 inhibitors but not sure if any are available and safe after the vioxx disaster years ago. 

 

I also don't know what the advice is with respect to movement - I know in RA is to keep moving to help pain but not sure in your case as I just don't have the knowledge. 

 

Do people in the US do telehealth appointments? Could you see someone know is not local? Someone specialist across the pond? The UK has a vibrant private sector where this may be possible from abroad but not sure whether they'd want tests. I assume prescriptions you could get from Canada? I'm trying to problem solve, can you tell? 

 

 

I'll stop and just send you my compassion and sincere wishes for respite. Please take good care of yourself. I love seeing your posts here. And may be one day we'll get to hear your music as well! 

Big hugs, 

Omw

[Onmyway]

Hi WestOn4th, 

I have been thinking of you. I hope your pain has eased a bit. I hope you are managing to get into nature at least a little bit. I hope your heart has a bit more joy than pain. 

 

Sending you warm hugs, 

OMW