WestOn4th: Amitriptyline Discontinuation Syndrome/Protracted Withdrawal?

[WestOn4th]

Thank you for taking the time to read this,

 

I am a 62 year old man with Ankylosing Spondylitis that was diagnosed 40 years ago. This systemic autoimmune disease

made life quite difficult. And it began with going from being a decently talented Track & Field athlete, to not being able to

walk very well. Along with Ankylosing Spondylitis (AS), I had a spondylolisthesis, which led to temporary paralysis a couple times.

While my doctors told me I needed a double fusion back operation, I was terrified of such a surgery, and put it off until the

second time I lost the feel of my legs. I then went in for surgery the very next week!

 

After the surgery I thought I would just take off and be back to sports. But I struggled another few years until they found I had

AS. Dealing with sciatica for years prior to the surgery, and after the surgery, I had to use anti-inflammatories, and muscle relaxants

to get through the really difficult times. Aside from the anti-inflammatories though, I never really took any drugs for long. I had to take steroids for inflammation many times, but they were short lived dosages.

 

But around 2002, a doctor prescribed amitriptyline for nerve pain, and strange, severe muscle cramps I would get during sleep.

I ended up taking that drug on an off from that point up until three months ago, when I did a very short three week taper from 50 to 25 to 12.5 to stopping. And for the first time I had many side effects that I don't recall experiencing any time in the past when I stopped the drug for awhile.

 

Even three years ago when I stopped it, it wasn't bad at all, and I never even concluded anxiety could be from amitriptyline. I truly

thought it was the safest drug ever!  And if I am honest, I had forgotten it was an antidepressant drug being used off-label for so many things.

 

Since Ankylosing Spondylitis is systemic with inflammation, I ended up with blocked arteries, kidney issues, and hypothyroidism.

I had to take beta blockers the past 6 years, along with some other heart medications, and a thyroid medication. I went on a strict

whole food plant based diet 8 months ago, and have since stopped all medications except the thyroid medication. I stopped the beta blocker Atenolol 4 months ago (and my blood pressure and heart rate has been amazing), and quit the Amitriptyline completely almost 3 months ago.

 

I went from feeling very clear minded, serene, and proud of my strict diet accomplishments, to feeling odd heart fluttering (maybe palpitations), anxiety, panic attacks, hypersensitivity in these cuts on my hands that get during the dry, cold winters here, and

waking insomnia (I would fall asleep but wake up restless, worried, etc.). This all started a few days after I stopped taking the

amitriptyline completely nearly 3 months ago.

 

I didn't expect the amitriptyline to cause this. But I noticed when I began taking metoprolol 6 years ago, that I angered quickly, became impatient, and things began to feel harder and harder to do. With AS, I am fused in much of my spine making simple movements difficult; which of course makes life filled with daily pain already. But I thought the beta blocker metoprolol was the reason for it all, and tried changing over to other drugs (I only had two drug class options due to my blocked arteries). Only when I was able to change from a lipid beta blocker to the water based atenolol did it improve a bit. But it only improved somewhat.

 

I learned that amitriptyline was so good at getting past the blood brain barrier that it was often used with other drugs designed to heal brain issues (because most drugs were not able to get past the blood brain barrier). I then began to think that the amitriptyline was escorting all the beta blockers I had been taking and perhaps acting as a potentiator, augmenting the different

side effects I had (hallucinations, nightmares, numb hands and fingers, eye issues).

 

It wasn't till I got off the beta blockers completely that it seemed amitriptyline may have been behind all the difficulties over the last 6 years.

 

Sorry for the lengthy story.  I just wanted to share that while life with AS is difficult, I was never into any type of drugs. I had problems with drinking beer at times of my life, but always managed to stop that.  And I only had alcohol once during the past several months during a horrible panic attack!  I don't wish to take anything to get through this, unless someone thinks that

starting amitriptyline again to taper slowly is a plausible course of action??  I would rather not though.

 

I just wanted to know what others taking amitriptyline thought about all of this.  I can already understand that there is no definitive time frame for discontinuation syndrome, or protracted withdrawal.  I can only recall stopping the 50mg amtriptyline

back in 2020 after having Covid (stopped for about 4 months without much of an issue). I did take 100mg a couple times after a

new blood pressure medications terrified me after a single dose  I went through several trying to reduce the horrid side effects, and used amitriptyline just to calm myself and get through that night.  Other than that, it was always 50mg.

 

Thanks again for taking the time!

 

WestOn4th

[Onmyway]

Hi @WestOn4th, 

can you pls fill in your drug signature before we can help you further? 

This will help us understand your history better. 

[WestOn4th]

Looking for some help please, from Altostrata, and anyone else!  All input and support is greatly needed

and welcomed! 

 

My nervous system seems more frail than ever right now. I had tried to reinstate a smaller dose, approximately 12.5

of amitriptyline, but the results were disastrous after the third night. The third night I couldn't sleep, was agitated,

restless, and then had to get out of bed due to my head feeling like it was on fire!  I then noticed my thumb was

twitching.  I tried peppermint tea all during the night since there was no way I could sleep!  My heart was pounding, and I had severe palpitations that brought on shear panic and anxiety lasted all during the night and all the next day. My pulse stay elevated the next 4 days until it quieted back down.

 

My heart was still acting up with palpitations though, so I tried calming it down with atenolol (the beta blocker I had stopped 4 months ago when my heart and blood pressure was doing really well without it). Taking a smaller does of the Atenolol, the medication I had taken a couple years, acted the same way as Amitriptyline!  My heart pounded all night, and again I went through the restlessness, agitation, heart pounding, full on anxiety and panic!  Again I stayed up and sipped on tea all night, for sleeping was impossible!

 

This has all occurred during the past couple weeks, and this morning I feel very vulnerable and exposed. Lack of sleep has made me even worse, and exercise hasn't been enough to neutralize this horrible state I am in. 

 

I am afraid to take anything in fear I will react to it. My GP doctor visit a few days was a nightmare, as the nurse

and doctor kept saying it was all in my head, and there is no way these medications could cause such reactions!

I went there for help and left more distressed than ever!

 

Is there anything besides peppermint tea that can help?  I simply feel very raw and reactive to every little thing, with

this constant anxious agitation feeling like I'm on the verge of a panic attack!  I don't know how to cope!

 

Please let me know what I can try!  Thanks so much!

 

~Paul

 

 

 

 

[Onmyway]

Dear Paul, 

I am so sorry you are going through all of this.  It sounds really difficult on top of the AS. 

Seems like you had quite severe side effects from amytriptiline and then withdrawal from it now and none of your doctors caught it - it is not unusual. 

 

The reason why you are feeling so amped up right now is that your reinstated dose is too high. We usually recommend that people reinstate 0.5-1mg so that you cover some of the WD symptoms without activating the nervous system too much. In WD our nervous systems tend to be hypersensitive and any new psychoactive drugs can have paradoxical effects and make us even more amped up. I am concluding that this is what happened to you because it seems from your post that the reinstatement caused more severe anxiety and so did the introduction of the atenolol. 

It is possible that you are having paradoxical reactions to atenolol as well.

 

If it has been less than a couple of weeks of amytriptiline reinstatement (pls update your signature so we know and can give you better advice) you can cut it down to a much smaller dose - 1-2 mg and see if that calms this activation. It may destabilize you for a couple of days so pls update us how you are feeling. 

This thread (first post) will explain what is happening better: 

https://www.survivingantidepressants.org/topic/27800-hypersensitivity-and-kindling/#comment-610557

 

This will explain various ways in which you can get small doses of the drug. I am assuming that right now you are 

https://www.survivingantidepressants.org/topic/1099-tips-for-tapering-off-amitriptyline/

 

The Symptoms and Self Care forum has lots of resources that can help you manage your symptoms - you can search for a specific one that you want and if I were you I'd read the pinned topics as well. 

 

Lots of people here find magnesium and Omega-3 helpful as well, have a look at their threads. If you have trouble findings the threads let me know and I will post them here. 

 

Please take care of yourself,

OMW

 

 

 

[WestOn4th]

Onmyway, thank you for all the input, and caring!

 

I can't believe how difficult life has become because I trusted doctors!  I experienced kidney failure many times

taking anti-inflammatory medications over the years. It was pretty much all that was available to AS patients back

in the day. I found amitriptyline helped with pain without causing severe kidney problems!  But little did I know I

would have a backlash many years later from this drug!

 

I am trying to understand something: you mentioned taking a smaller dose, like 1mg of amitriptyline... But is that for

post acute withdrawal syndrome as well?  As I mentioned in my original text, and med use below it; I had been off

amitriptyline since February.  I only tried to reinstate out of desperation, and thought I was using a small enough dose.

 

I only took the approximate 12.5 mg of amitriptyline for three days before all hell broke loose!  And I am quite terrified

of that happening again!

 

Is there another medication I can try instead in small doses?  I appear to be reacting to everything right now, and mornings seem to have turned into a very big nightmare. If cortisol can really add such a huge load of agitation first

thing in the morning, I don't really know what else to do.

 

I have been mostly using tea to try to calm me, simply because I don't know what else to try!  I have constant triggers

in my chest that affects my breathing, which becomes a cycle of fear straight into hell!  It seems criminal that doctors

don't care enough to explain these medications. I have never even known anyone that used amitriptyline as an

antidepressant.  All were using it to manage pain.  So I was always taking it as needed to control it. And as the pain

became worse over the years, I took it nearly all the time (again, because at least my kidneys didn't pay the price 

like they did with anti-inflammatories!)

 

If I buy a digital scale and try amitriptyline at this very low dose, what if it doesn't work either?

 

Thanks for all your help!

[MichelleE]

On 6/15/2023 at 11:11 PM, WestOn4th said:

Onmyway, thank you for all the input, and caring!

 

I can't believe how difficult life has become because I trusted doctors!  I experienced kidney failure many times

taking anti-inflammatory medications over the years. It was pretty much all that was available to AS patients back

in the day. I found amitriptyline helped with pain without causing severe kidney problems!  But little did I know I

would have a backlash many years later from this drug!

 

I am trying to understand something: you mentioned taking a smaller dose, like 1mg of amitriptyline... But is that for

post acute withdrawal syndrome as well?  As I mentioned in my original text, and med use below it; I had been off

amitriptyline since February.  I only tried to reinstate out of desperation, and thought I was using a small enough dose.

 

I only took the approximate 12.5 mg of amitriptyline for three days before all hell broke loose!  And I am quite terrified

of that happening again!

 

Is there another medication I can try instead in small doses?  I appear to be reacting to everything right now, and mornings seem to have turned into a very big nightmare. If cortisol can really add such a huge load of agitation first

thing in the morning, I don't really know what else to do.

 

I have been mostly using tea to try to calm me, simply because I don't know what else to try!  I have constant triggers

in my chest that affects my breathing, which becomes a cycle of fear straight into hell!  It seems criminal that doctors

don't care enough to explain these medications. I have never even known anyone that used amitriptyline as an

antidepressant.  All were using it to manage pain.  So I was always taking it as needed to control it. And as the pain

became worse over the years, I took it nearly all the time (again, because at least my kidneys didn't pay the price 

like they did with anti-inflammatories!)

 

If I buy a digital scale and try amitriptyline at this very low dose, what if it doesn't work either?

 

Thanks for all your help!

 

Hi,

 

I know how you feel with the axiety and panic, ami withdrawl causes massive panic attacks and anxiety.  I am now in month 8 of WD only having taken Ami for 14 days back in Nov 2022.  i spent 3 to 4 months in sheer panic and distress, ended up in A&E multiple times.  was told there was nothing wrong with me and that i was suffering with anxiety and tried to put me on more medication.  I refused it.  

 

for me systemps started to ease a little (and I mean a little) after the 4 months, slowly slowly slowly!  I am having a bad wave of them now but i'm crossing my fingers this wave doesn't last too long.  I'm still dizzy all the time really but i have learnt how to kind of cope with that.  blurry vision all the time too.  For me the sheer panic has stopped but the anxiety is still there.  Some days are great but then boom!  back to sheer hell again.

 

Not sure where you are at with your medication but if you can bear it, just try and not taking anything and push through.  I have realised through this process you really have to learn how to  be kind to yourself and try a lot of self help, meditation, breathing exercises.  I literally have to do breathing exercies every day just to get through.  Today I pushed myself and went for a walk this morning and then even went to the supermarket which I haven't been able to do in a long time.  Some days are good and some are super bad.  

 

I still work through all this, although I had to work really hard to make my office a safe place.  when WD started i would have massive panic attacks at work and had to leave immediately.

 

Although I do still have a lot of WD symptoms when I look back on my journey so far they are not as bad as they were.  They have improved, albeit very slowly.

 

I just wanted to say that if I can push through, literally anyone can, I'm the biggest baby and hypocondract!  keep going, you will get through this.

[Onmyway]

On 6/15/2023 at 11:11 PM, WestOn4th said:

Onmyway, thank you for all the input, and caring!

 

I can't believe how difficult life has become because I trusted doctors!  I experienced kidney failure many times

taking anti-inflammatory medications over the years. It was pretty much all that was available to AS patients back

in the day. I found amitriptyline helped with pain without causing severe kidney problems!  But little did I know I

would have a backlash many years later from this drug!

 

I am trying to understand something: you mentioned taking a smaller dose, like 1mg of amitriptyline... But is that for

post acute withdrawal syndrome as well?  As I mentioned in my original text, and med use below it; I had been off

amitriptyline since February.  I only tried to reinstate out of desperation, and thought I was using a small enough dose.

 

I only took the approximate 12.5 mg of amitriptyline for three days before all hell broke loose!  And I am quite terrified

of that happening again!

 

Is there another medication I can try instead in small doses?  I appear to be reacting to everything right now, and mornings seem to have turned into a very big nightmare. If cortisol can really add such a huge load of agitation first

thing in the morning, I don't really know what else to do.

 

I have been mostly using tea to try to calm me, simply because I don't know what else to try!  I have constant triggers

in my chest that affects my breathing, which becomes a cycle of fear straight into hell!  It seems criminal that doctors

don't care enough to explain these medications. I have never even known anyone that used amitriptyline as an

antidepressant.  All were using it to manage pain.  So I was always taking it as needed to control it. And as the pain

became worse over the years, I took it nearly all the time (again, because at least my kidneys didn't pay the price 

like they did with anti-inflammatories!)

 

If I buy a digital scale and try amitriptyline at this very low dose, what if it doesn't work either?

 

Thanks for all your help!

Hi @WestOn4th

so sorry I missed your post -  I have been traveling quite a bit recently. 

 

If you are reacting that strongly to even atenolol (which is the least likely beta blocker to cross the blood brain barrier) then a low dose of ami may be difficult too. If you are suffering intensely you may try a tiny dose - you can use liquid dilution instead of buying a scale but this is also risky. If you can push through like Michelle suggested then I think you will be better off in the long run. 

 

Have you seen the various things people are trying for cortisol mornings - some options include vitamin C and baby aspirin (but careful with the latter if you've had drug reactions before), dark curtains in the morning, magnesium, gentle exercise, breathing, mindfulness. 

 

Take care of yourself and pls let us know how you are doing!

[WestOn4th]

Thank you MichelleE and OnMyWay for writing back to me.  I am desperate for relief, and feel like I am going to die

lately!  The fear makes no sense at all, and I am afraid to take anything to help it. I feel like there is something seriously

wrong with me, and feel so vulnerable and alone.

 

I tried to reinstate with amitriptyline with 1 mg for 9 days, but it just seemed to aggravate the situation a bit more. 

It has really become unbearable, so much that I have almost called 911 a few times.  My heart was doing so well

from my nutrition until I stopped the amitriptyline.  I am still in disbelief that this is happening to me!  I can't cope

with anything at all, as it just feels like a stressor directly on my heart!

 

I have been trying to sell my house for months, and have a buyer now. But as I have become worse in the past couple 

months, I am not coping well.  I had to delay the inspection, which pissed off the buyer and my agent. But this has

escalated to a new level of anxiety and panic attacks.  I don't even know where it is coming from!  But my heart has not

calmed down for weeks. If this sale goes through, I am to move to North Carolina from California, with two big dogs. Not an easy task.  And in my condition simply terrifies me!  Isn't there some kind of medication I can use to get through the next couple months that my nervous system won't react to?  What about Trazodone?  Am I likely to react to that?

I still have some from a couple years ago.  I can't trust my doctor, and where I live in a area where medical care for even my Ankylosing Spondylitis has been horrible!  I am sorry to come off as so weak, but at 62 and alone, I don't have

anyone I can turn to. My brother is in North Carolina, trying to understand what I am going through -- but I know he does not.  Thanks so much for your support!

[Onmyway]

Hi @WestOn4th, 

I am so so sorry you are going through this. I understand how much more difficult withdrawal can be when you also have to make big life decisions. The terror and fear that you are feeling is chemical - it is created by the chemical/physiological changes that are happening in your brain because of the withdrawal. It does not reflect actual threat to you. I know it is hard to take in - I used to be terrified by the sight of the big red buses in London. I have no reason to be - it was just a random reaction of my brain - a glitch/error in the program, if you will. Except in our case the error is caused by withdrawal. The only thing I have found is to just relax into the fear - do not try to fix or avoid it but just lean into it - acknowledge it, label it, accept it and then it will slowly dissipate. Thing of it like floating in the water - the more you fight with the water, the more likely you are to drown. If you just relax into the feelings of whatever it is - terror, anxiety, anger - it will slowly dissipate. 

 

Have a look at the Claire Weekes method - https://www.calmclinic.com/treatmentclaire-weekes, people find it really helpful. 

 

I don't know what the right decision is for you regarding the house but I know this - you will be able to get through it. Would your brother be able to help with the move if you asked? Could you postpone the sale? Could you hire help? 

 

One thing I know is that you need to take good care of yourself, especially when you are suffering so much. So if some things need to not be done so that you can avoid being hospitalized, then so be it. Your health is the most important thing. 

 

Are you taking magnesium? It helps tremendously with anxiety/terror/agitation and also blood pressure for that matter. 

 

Have you had your thyroid checked recently - your dose of levothyroxine may be too much now and that may also cause some agitation. (it is a long shot but may be worth it). 

 

Please keep us updated @WestOn4th. I am thinking of you and sending you calming thoughts!
OMW

 

 

[WestOn4th]

Hi OnMyWay,

 

Thank you so much for the information, and the comforting words. 

 

If the terror and fear is all chemical, where does the autonomic dysfunction fit into the equation?  Do you think

my crazy heart beat is simply my reaction in the grip of this fear?  I can reveal that a lifetime of Ankylosing

Spondylitis and the constant barrage of unexpected health problems associated with it, has been the original

source of anxiety and panic. So perhaps if I can truly work with the concepts presented by Claire Weekes, and

all the information you have shared, I might be able to curtail this to a level I can manage?

 

I appreciate all your input and ideas also.  My brother is willing to fly out here in order to help me with my move. It is

just a bit complicated having two rescue dogs that have grown up with free rein in a very large fenced lot, and expect them to travel well.  I couldn't get either dog even in my truck for a long time, and finally managed to get them in and

to want to get in.  But they are not the tamed type, making the thought of travel a very large stressor!  My shepherd

was abandoned on a 107 degree day in July 4 years ago. He still has some quirky behavior despite all my love and attention. But with my brother, I hope to manage this 3 day, 2,500 mile trek!

 

I can't believe how my breathing and heart rate get so bad over all of this!  And how it can just hang on, and hang on!

If I am really in no danger, I have to reel in the fear!  

 

I will try the magnesium also!  I struggle with reactions with supplements, and medications -- making it necessary to

always try to find the least amount of ingredients in them. Having a systemic autoimmune disease, I have experienced

some very bizarre reactions over the course of my life!

 

Thanks again OnMyWay!  I will keep you posted!  Your responses at least help me to not feel so alone!

 

~Paul

 

 

[Onmyway]

Hi Paul, 

I am glad that you can get some help for the move. I know that the dogs might have a hard time traveling given their history but they will manage as well. We often underestimate our own and others' resilience and ability to bear difficulties. Can the vet give them something calming for the journey? I feel bad for suggesting this but the goal is to get all of you to a healthy place. 

 

I didn't use my words precisely earlier when I said your anxiety/terror is chemical. In general our emotions are there to give us quick information about our environment and our relationship to it. When a dog is barking at us, our body reacts quickly by releasing the relevant chemicals and causing the relevant emotional reactions. When someone hurts us or crosses a boundary, we respond with anger with its own chemical signature.  When we get anxiety in a disordered way, our body reacts out of proportion - i.e. if someone you loved was hurt on the street, you may be worried about your safety walking in the dark or be hypervigilant even when you are not, yourself in an unsafe neighborhood. The reaction makes sense given our history. 

 

In withdrawal, we have these 'reactions' without any cause - we may get angry without any serious provocation, we may feel terror without anything terrifying in our environment, we may feel fear without a real threat. Chemical reactions get provoked out of nowhere. Or more often, they get exaggerated. We may get seriously angry at someone with loud music whereas without withdrawal we may have been able to just shrug it off. This is not because we are lacking serotonin or have too much adrenaline etc. - these reactions are waaaay more complex than we can understand. But it is happening without an outside cause. It is not a reaction, it comes from within the brain which is trying desperately to adapt to its new status. This is what I wanted to say. I will post a link at the end here that explains it way better than I do. 

 

Regarding the magnesium - I, personally, like magnesium citrate best. It can hurt some people's stomachs but doesn't hurt mine. I would avoid magnesium oxide - this can serve as a laxative. Some people like magnesium glycinate. Start with a small dose and see how you react. Most people find magnesium calming but you are right to be careful with supplements. 

 

I can completely understand how having this really difficult disease has caused so much anxiety and panic. I knew one person who had it and who was in constant pain and the uncertainty of the flares caused constant hypervigilance. Our brains are learning machines, so they learn to be careful and anticipate. I think the Claire Weekes methods will help with the original anxiety as well. 

 

Some people also find help with chronic pain in a meditation program. I know, I know, it sounds hokey pokey and impossible when we are in the throes of yet another panic attack but despite my skepticism I was really helped years ago by a Mindfulness Based Stress Reduction course. My GP enrolled me because I was having serious asthma attacks - having acquired it in my 20s. After the course the attacks lessened substantially to the point that I only needed my rescue medication very rarely. I didn't become a life long meditator but it allowed me to gain better control of my mind and apply some mindfulness techniques in my daily life and it helped my asthma unexpectedly. I had thought my doctor enrolled me into it because of my anxiety but she actually intended it for my asthma, so it wasn't just my expectations that it would help. 

 

There is an online version of the course for free here - https://palousemindfulness.com/ 

This specific course has been studied and shown in clinical trials to help with all kinds of chronic pain. I can find some studies if you'd like. 

Do as much as you can when you can. The exercises are pretty easy but you need to spend some time doing things every day. Who knows you may come out of this withdrawal with better pain management as well. 

 

Note, mindfulness is not there to suppress the pain or a way to will it away and it doesn't mean that your pain/asthma was all in your head if this works. What it does is - it helps regulate the nervous system better including pain centers and can also impact inflammation as a result. I would recommend it. I don't think it is a cure-all but if it allows even 20% decrease in suffering that can be substantial and can set you up on an upward spiral. 

 

This is a really hard journey but we are in this together and we know that it gets better despite the fact that it doesn't seem like it at this moment! 

OMW

 

[MichelleE]

My heart rate was really high as well in the few months after CT.  My BP was roughly 160/90 and stayed there for a few months.  I started taking Magnesium L-Thronate and my BP has been around 116/77 lately so a massive change in that.  Definitely try magnesium.  May start off with half daily dose and see how you go.  

 

[WestOn4th]

Hey OnMyWay,

 

Thanks for the additional input!  I have been using many different breathing techniques, followed mindfulness, and meditational videos, tried to find ways to stimulate the vagus nerve, and so much more!  It is quite easy to see what desperation for relief can get us to try!  The explanation of withdrawal was very informative also, so thanks for sending that. This morning was particularly difficult, even after doing exercises for 35 minutes!  My long bike rides help the most, but my tendon needs lots of icing and rest between rides.  I wish I could ride daily, but it has slowly degraded twice, requiring this 12 week protocol for tendinopathy, involving heel drops twice a day for the entire 12 weeks!  So I am icing it 3 to 4 times a day to try to prevent that from happening a third time!

 

I have written and recorded a couple songs I wanted to share with you somehow, and maybe with more people on this site. It is not specific to withdrawal, or anything like that. One song is called Celebrate, and is a positive, very upbeat song about living your life fully. The other is called Bounce, and just talks about how we fell constantly growing up, but seem to have forgotten how to bounce now.  If there is a way to share them, please let me know. It is my way of saying thank you, by sharing the most meaningful thing in my life -- my original songs!

 

I appreciate your ideas, and often re-read what you wrote in case I overlooked something.  Working on the magnesium.  Living in a small town, I often use Amazon to give me a much greater selection than what I can find around my town, or even neighboring cities.

 

My symptoms in the morning always seem to start off in my breathing feeling labored.  I won't be thinking about anything in particular, but a tightness eventually centers smack dab in the middle of my chest!  My AS causes inflammation in my connective tissues, and I have a costochondritis in my sternum that might be helping set off 

this chain reaction. But then I notice the heart rate beating irregularly, and hard. Those two things are the hardest to shake, and set off reactions that I now try using Claire Weekes techniques.  But it is hard to stop that seemingly death grip tightness I get. Is this common for a lot of people?

 

Thanks again!

 

[Onmyway]

3 hours ago, WestOn4th said:

Hey OnMyWay,

 

Thanks for the additional input!  I have been using many different breathing techniques, followed mindfulness, and meditational videos, tried to find ways to stimulate the vagus nerve, and so much more!  It is quite easy to see what desperation for relief can get us to try!  The explanation of withdrawal was very informative also, so thanks for sending that. This morning was particularly difficult, even after doing exercises for 35 minutes!  My long bike rides help the most, but my tendon needs lots of icing and rest between rides.  I wish I could ride daily, but it has slowly degraded twice, requiring this 12 week protocol for tendinopathy, involving heel drops twice a day for the entire 12 weeks!  So I am icing it 3 to 4 times a day to try to prevent that from happening a third time!

 

I have written and recorded a couple songs I wanted to share with you somehow, and maybe with more people on this site. It is not specific to withdrawal, or anything like that. One song is called Celebrate, and is a positive, very upbeat song about living your life fully. The other is called Bounce, and just talks about how we fell constantly growing up, but seem to have forgotten how to bounce now.  If there is a way to share them, please let me know. It is my way of saying thank you, by sharing the most meaningful thing in my life -- my original songs!

 

I appreciate your ideas, and often re-read what you wrote in case I overlooked something.  Working on the magnesium.  Living in a small town, I often use Amazon to give me a much greater selection than what I can find around my town, or even neighboring cities.

 

My symptoms in the morning always seem to start off in my breathing feeling labored.  I won't be thinking about anything in particular, but a tightness eventually centers smack dab in the middle of my chest!  My AS causes inflammation in my connective tissues, and I have a costochondritis in my sternum that might be helping set off 

this chain reaction. But then I notice the heart rate beating irregularly, and hard. Those two things are the hardest to shake, and set off reactions that I now try using Claire Weekes techniques.  But it is hard to stop that seemingly death grip tightness I get. Is this common for a lot of people?

 

Thanks again!

 

Hi  Paul, 

Would love to hear your creations! I am trying to figure out how the songs can be posted on the website. If you have them on Youtube we can definitely post links. I have asked others mods if it's possible to do it differently too. I like the themes you are describing! I have such admiration for people who can make music - I am probably tone deaf myself

 

Regarding the mornings I know what you mean with the terrors - I have them too - mine are not related to breathing but I have horrible mornings still (my other symptoms are better). One thing that helps me is to get distracted in the morning - start a favorite TV show, play a game, something that requires your full attention and that you find somewhat engaging. I used to watch NCIS but it may be too much in terms of violence   I LOVE the show Mom - it's on Amazon Prime here. It is funny, life affirming and raw and honest. Distraction is a good friend. I also find walking often dissipates my nervous energy. I find that attempting calming activities when in that kind of state is actually often counterproductive (for me) - things that engage and use up the nervous energy seem more helpful. 

 

Vitamin C is expected to lower cortisol so a serious dose of it might help as well. I haven't heard vit C hurting anyone yet but may be safer to start slow with that as well - I'd say 100mg and see how you go for a few days. Regarding magnesium - I think you can check out the magnesium thread to see what brands people liked. Some people like epsom salt baths (epsom salt contains magnesium sulphate). 

 

Hope you have a better morning tomorrow!

 

[WestOn4th]

Hey MichelleE,

 

Thanks for the tips.  Am I to understand that you took amitriptyline for only 14 days, and have had all these problems ever since?  Or did I read that wrong?  

 

It's good to know that magnesium has helped you.  It is wonderful when you can find anything that can help these horrible feelings!

[WestOn4th]

Hi OnMyWay,

 

Thanks, it has been a little better morning today due to the bike ride. It always helps, it seems, to fatigue my nervous system with some kind of exercise. The show Mom, with Anna Faris, French Stewart, John Cryer... that show?  If so, that is hilarious!  I found it on Yes! Movies for free.  They have a large assortment of shows and movies, so it was nice to find a show with actors I love!  Great recommendation!  I am a huge fan of all the silly Scary Movie films!  Their sense of humor suits my warped personality! 

 

I don't have those songs on youtube. I only have very old songs going back years, in older studios. I can't believe I even posted that stuff back then. I had a couple friends that asked me to, so I did. But it's just not the best recordings. When you do everything yourself, especially back then, you realize just how much you suck!  Haha  The songs I told you about are still not great, but far better; and done within the last couple years. And they are in mp3 format, and fairly large size files. If you figure out a way for me to share, please let me know.

 

The hardest part for me when it comes to anxiety that causes such heart grief, is the fact I know I have blocked arteries, and had issues with my heart until I went strict with whole plant foods, and stopped eating all animal products. My heart became very slow, controlled, with amazingly low blood pressure!  I was doing so well, I stopped the atenolol first, stayed doing well, and then stopped amitriptyline wanting to get my body to heal itself with food. And that's when everything took a turn for the worse. The acute withdrawal phase didn't last that long; maybe 3 weeks. And then nothing happened at all, and I was happy thinking I got through it!  But slowly, without thinking about anything, things became very strange!  I am still confused by the delay that led to the post acute withdrawal phase.  I didn't even know what it was!  I did what we all do, and searched the web for answers. At first, I thought my AS was taking me once again into some new territory.  But that wasn't it.  I have had anxiety issues in the past over AS, and of course it is never fun.  But they came on with some level of predictability.  Now, every little situation seems monumentally difficult!  And no matter how I try to reframe my thoughts, my approach, I struggle!  I am usually better the latter part of the day, and evening. Then it all starts up again the next day!  I haven't really had much of a reprieve lately.  And it leads to a vicious cycle of fear I am trying to get a grip on!  It makes me feel so vulnerable!  My brother, and friends only know me as the strongest guy they know, able to handle anything.  And look at me now?!  Grrrr

 

[Onmyway]

Hi Paul, 

your comment reminded me of the saying - Courage is not the absence of fear, but acting despite it. Similarly, strength is not the absence of fear or vulnerability but overcoming them. I have no doubt that you will overcome withdrawal and these fearful reactions even if you feel vulnerable. You will handle this the way you have handled lots of things in life, this is just a challenge. I am sure you overcame all kinds of challenges - miles biked, diet improved, challenges that the AS put in front of you. I am sure those were difficult and painful. This is no different. The difference here is that you don't seem like you have control and the territory seems more uncharted. But you got this too! And you have a whole lot of cheerers along the way! FWIW, I love vulnerability in people because that is what brings us closer to one another, our shared humanity. 

 

Your friends and brother will know yet again that you can endure this and get through this as well. A few months ago Carmie, another member here who I admire (check out her intro) and who is struggling with a chronic disease too, recommended me a book called 90 seconds to a better life (or some such), it is amazing. The idea is that if you let the feelings wash over us instead of resisting them we are able to gain control over them. I was sharing this with a friend who happens to be a martial arts enthusiast and she was saying how this reminds her of the eastern philosophy of martial arts - do not resist the blow but transform it, work with it. If your body needs to dissipate the energy - do that (but be careful not to overdo it), if your body needs distraction - do that.

 

For me acceptance was a big game changer. I used to have lots of issues with sleep and I fought and I fought to get  better sleep but that lead only to frustration. Once I stopped fighting it and accepted that I would have little sleep for a while, it got better. 

 

Before I forget, someone suggested that you can put the mp3 files in Google Drive and share it that way. Not sure if you feel comfortable doing that. You may want to set up an anonymous google account that does not have your name and is not used for other things (we like anonymity here for your protection and so that you can be yourself without pressure or worry - who said that we are most ourselves when we are behind a mask). Looking forward to hearing them  
OMW

 

 

[WestOn4th]

Hey OMW,

 

You certainly had quite the journey yourself!  What you have learned is revealing in how you express yourself now.  Your compassion and ability to care enough about people you have never met makes you fantastic at helping the vulnerable!

Finally, your inspiration comes from one that has suffered; making it heartfelt and beautiful!  I can't thank you enough!

The acceptance you wrote of is something I am working on now.  I am hoping to loosen the fear death grip that winds my thoughts up so tightly they cycle in a loop over and over like someone with severe OCD. So I am trying to not resist so much.

 

I don't understand how I can use Google Drive to share my songs, but am working on a way to put them on youtube. 

I will figure out a way soon enough!  I hope things are going well for you!  I have been exploring all the ideas you have written about, and will continue to work on ways of relaxing and staying calm!  Thanks again OMW!

 

For now, I am going to embarrass myself and share a couple of my older songs on youtube. I made a channel 10 years ago, but somehow could not get back into it. So I have no control over it anymore, yet they are still up!  https://www.youtube.com/watch?v=0iQncNkWoNw

 

 

 

[Onmyway]

Hi Paul, 

what lovely words to say. Thank you! 

I loved the song - I love the music but even more I love the idea that being loved can change us and tether us to the world. And I am realizing the value of being tethered - not just of being free. That realization is also a 'suffered' one though I am not ready to give up my freedom - my soul wants to be moving! Which leaves the option of being tethered in other ways! 

 

I am very familiar with the OCD level obsessions -  I had them twice before withdrawal but withdrawal has raised their level to Defcon 1. Every little thing takes the importance of life and death and little risks seem much bigger than they are - and if you don't have the social interaction like before that can help you figure out what is 'real' and what is not it ends up being quite disruptive. I have found the work of Martin Seif and Sally Winston very helpful in understanding these patterns - they think of some minds as more 'sticky' -  https://www.psychologytoday.com/us/blog/living-sticky-mind/201906/what-sticky-mind-means I think withdrawal makes our minds 100x 'stickier'. I would check his other articles in the blog as well. 

 

By the way, I am posting lots of resources but you don't need to read all of them or implement all of them - they have worked for me at different times and may or may not resonate with you at this time. But may resonate later. I used to be a voracious self-help/therapy book reader - have calmed down a bit in my relation to therapy lately. I was just too tired of breaking things into parts and losing my wholeness in the process. At least that is how it felt. 

 

Off to work - my level of brain fog is next level today - possibly because I forgot a dose of the med for 6 hrs a few days ago but I am doing my best. We had a company party today and I made the mistake of having coffee to be able to make some sense while talking to people - that is how bad the brain fog was. Tomorrow is a full day with 3 hrs of travel and an important meeting in the morning. Ouch.  Hope you are doing better

OMW

[WestOn4th]

Hey OMW,

 

Thank you so much for all your kind words, and philosophical input.  I do love it!

 

Sadly, I feel like I'm getting worse. I was so agitated all day today, and reached for a few beers for some relief.  But

it really doesn't seem to help either.  I am becoming so desperate that I don't know what to do. I just feel so horrible most of the time, with an actual very severe chest pain that is coupled with so much fear!  When it is this bad, it makes me want to call 911. 

 

I am afraid to try anything, but I'm not fairing well trying to tough it out. It was so bad today because I didn't sleep last night. I am living on a huge variety of teas, trying to keep myself together, but it doesn't seem to work when I get this bad!  I am definitely not the same strong person I once was. I feel so warn out physically, while at the same time the amped up feeling that begins in the morning and often never goes away all day long -- drives me to try to exercise even more as a coping mechanism. 

 

I feel like a huge disappointment. You have been so patient, giving me so much information, and time.  And I feel like a scared child that is afraid to be alone!  I am so sorry that I am so weak right now.  😞

[Onmyway]

Hi Paul, 

no need to be sorry - this is not your doing - and we are all allowed to be weak at times and vulnerable. Would you be ashamed of being weak if you had been in a car accident? How is this different? I know the agitation and the feeling of restlessness - this is all withdrawal. 

 

Regarding the chest pain - do you think it has to do with something physical - i.e. angina or something related to your heart? Will it be worth getting it checked out? Or are you sure that is also only withdrawal. My policy is that if something sounds serious, it is important to rule out other things. I would get the chest pain checked out if I were you. 

 

Regarding alcohol, it is NEVER a good idea in withdrawal, it almost invariably worsens things. Some people get set back with alcohol even years into withdrawal. I would avoid it. I understand the desperation - there were times when I would have tried anything but it really is the one thing that we can all agree here is bad. If you have been having some beers that may explain the strong symptoms recently.

Are the teas that you are taking also 'exotic' and psychoactive? Here I mean ashwagandha, lemon balm, valerian etc. If so they may be interfering as well. I am saying this because your atenolol and ami reinstatement experiences lead me to believe that your nervous system is hyper sensitive. 

 

At this point I would not take any psychoactive substances and in terms of supplements would only take magnesium. I would also try magnesium baths - epsom salt baths for calming. Do not try to calm yourself down or avoid the anxiety - just try to allow it in. I know it is easier said than done. Your job now is to literally ONLY bear these feelings - float through them, get through them fully accepting them, let them wash over you. This will get better!

 

This stuff is incredibly hard. I know it from you, from myself and from the thousands of people on this forum. You are not alone in this - it IS VERY VERY HARD. It has nothing to do with weakness - even the strongest of us can get cancer and be hit by a car and as far as I am concerned strength or weakness are irrelevant. This is an experience. Experience it. It has been given to you. Let it flow through you. Move with it, wherever it takes you. It will leave like all other experiences. 

 

Crazy desperate idea - in the worst of it - can you take an OTC painkiller like tylenol/ibuprofen/aspirin? Aspirin is supposed to lower cortisol, the other two have been shown recently to help with emotional pain as well. 

 

Pls take care and remember that this is not your fault. This is not a judgement on you. This is just one of many experiences in the world. Experience it and let it pass when it is ready to go. 

 

[WestOn4th]

Hey OMW,

 

You are so right about the alcohol!  I have had some really rough nights, and last night was one of the worst -- because of the beer!  It becomes so taxing, so exhausting having to deal with the constant anxiety and fear. When it gets really bad, trying to settle into it doesn't seem to work.  Nothing seems to work!  I just put a heating pad on my chest when I got in bed.  But sleep was not to be mine most of the night. 

 

The chest pain is two-fold: I have blocked arteries and was supposed to get a quadruple bypass surgery 6 years ago.

But anyone that knows how heart disease works, such operations are dangerous and not very fruitful.  And I have costochondritis, which most people have never heard of. It is inflammation of the cartilage around the rib area. I have lost most of my chest expansion, and it can plain hurt like hell at times!  I try to stretch it out, but it adds to the fear level when my agitated nervous system causes my heart arrhythmias to be labored and pounding so fiercely!  Much of my entire spine is fused, which started years ago.  As much as I tried to keep my movement, going to chiropractors, stretching, etc., around 2002 chiropractors only hurt me all the time. It is such a harsh disease since it is systemic and

can attack pretty much any part of the body!  It has messed with my kidneys and arteries the worst.  While arteries are still blocked, my strict diet really did improve endothelial function far beyond what I thought was possible!  Of course, the Indian doctor's voice pops into my head at times when I am in a harsh, agitate phase. He wouldn't let me leave the hospital, and kept me 2 extra days trying to get me to commit to surgery.  Had to sign an OR to leave.

 

I don't drink those exotic teas you were referring to.  Just the classics, like chamomile, peppermint, hibiscus, cinnamon apple spice, bengal spice, etc..  There is one tea called Sleepy Time from Celestial that has hawthorn, which I have no experience with. But that is as exotic as it gets.  I switched from regular green tea to decaf green tea. I was drinking regular green tea daily, up to 5 cups -- and felt wonderful until I stopped amitriptyline!  I was hoping because I only really had the amitriptyline drug experience that I would pull out of the post acute phase by now!  But judging by what you've told me about the beer, my two ami experiences, and atenolol, I most likely just kept agitating my hypersensitive nervous system. I didn't have any beer for months. It was only out of desperation that I resorted to it. I just needed some relief!  Do you think those that have trouble for years were dealing with many prescriptions over the years, and not just one?

 

I try not to take NSAIDs, since they are so hard on the body.  I normally reserve them for when my tendons get so bad they prevent exercise. But I did try tylenol and ibuprofen last night and this morning, and I think they helped a little. I also have taken magnesium a couple days, but not sure if it has helped yet.

 

Does everyone really go through that chest pain, and pulsating feelings of being ok, and then not ok constantly throughout the day. And then have it be even worse with all those symptoms multiplied by 10?  At my worst, I feel like I am going to die and think about calling 911!  And breathing exercises, trying to just let it run its path; nothing seems to work!  My heart just pounds irregularly as if I had 10 cups of strong coffee!

 

Thanks for the kind words. It is hard not to be upset with the fact that several doctors over the years prescribe amitriptyline for me without ever warning me about the dangers. I realize though, my energy is best spent on trying to heal!  

[Hope2001]

 

 

Did you get reaction to blood pressure medication? If you got what kind of reaction? I have hard time to try to find blood pressure medication that works and doesnt cause side effects. 

[WestOn4th]

Hey Hope,

 

I had taken Atenolol for 3 years. But after stopping amitriptyline and began getting heart palpitations, I tried to take

atenolol 4 months later, and reacted to it.  It was only 12.5 mg, and I took it at night a couple hours before bedtime.

It made my heart race, when normally it slowed it down!  And it caused the same agitation and heart palpitations I started getting when I stopped amitriptyline. First I reacted to 12.5 amitriptyline when I tried to start taking it again to see if I could calm down what was happening to me. Didn't work. So I tried Atenolol, and had the same reaction!

 

[Onmyway]

@Hope2001, 

 

there are different types of blood pressure meds - atenolol is a beta blocker. Beta blockers are notorious for causing psychological issues - atenolol is the least offensive one because it crosses the blood brain barrier less than others. However, even that can have an effect to some people. I took propranolol before WD and it made me sob for no good reason in complete despair. However, in Paul's case and in the case of many on these forums the reason why the side effects in WD are so strong is because WD makes us hypersensitive to other psychoactive drugs. 

 

Having said that, some people do find relief of their anxiety in WD from propranolol. My view is that blood pressure control is important so if you can tolerate the drugs necessary, you should do it. Having said that, there are other drugs that can help control blood pressure that are not beta blockers. I am not sure what their effects are in WD. Magnesium can also lower blood pressure slightly and most people benefit from magnesium in WD. 

 

@WestOn4th Paul, sorry that I have not been able to respond - it has been quite a busy week and I injured my ankle so have been dealing with that (and everything takes longer to do now). How are you doing? Are things getting better? 

 

[WestOn4th]

Hope, I was able to stop taking atenolol through a very strict diet. I would like to try to take it again right now, since stopping amitriptyline has caused my heart to beat differently than before.  Atenolol is supposed to be good for irregular heart rate as well as high blood pressure, but I reacted to it before -- even at 12.5.  I was thinking about trying half of that, roughly 6 mg to see if my body would take it.  But I feel like I keep agitating my nervous system, making it even

more sensitive than before.  So I am not sure what to do right now!

 

I get physical pain in my chest, having Ankylosing Spondylitis, which caused a costochondritis dues to the sternum being

nearly frozen with inflammation in the cartilage and connective tissue. But there is an additional pain that feels almost like some kind of zap when my heart beats -- and that brings along with it a fear that seems to come out of nowhere as well!  It is making it very hard to do the simplest of things lately!

 

OnMyWay, is that you who hurt your ankle?  You ok?  I am still struggling, trying to figure out what to do. I seem to keep getting worse, and I don't know why.

[WestOn4th]

OnMyWay,

 

I seemed to react to a small dose (100 mg) that I had on hand already. It was magnesium glycinate.  It is supposed to be a good form for calming. Am I so messed up and sensitive right now that I am reacting to everything?  I would like to try to calm down my heart beating so strangely, as well as that pain that gets so bad in my chest.  Should I try a different, and maybe even smaller dose of magnesium?

 

Sorry OnMyWay, I am so out of sorts and agitated this morning that I didn't even seem to be aware that the post was written from you to Hope,  and then to me.  😞

[Onmyway]

Hi Paul, no worries

yeah, it is me with the sprained ankle. Compared to withdrawal it is nothing serious (and I have a high pain tolerance) but it is till swollen and bruised and so I need to protect it and I am not very good at sitting still all the time. But I will probably have to stay in bed the next few days because I am getting a cold (sore throat) and I don't do colds very well  I spent time with kids and sprained my ankle playing with them and probably got the cold from them as well - conclusion: kids are bad for your health

I am so sorry you are still struggling. It would seem that you may be sensitive to magnesium at that dosage. In Europe they have fizzy magnesium tablets that you can dissolve in water but I haven't seen them in the US. You might want to look for magnesium powder and sip tiny doses of it. For people who are that sensitive sometimes epsom salt baths can help as well - the skin can absorb some magnesium (epsom salt is Magnesium sulphate - MgSO4). I knew some people sprayed magnesium oil as well on their skin. This sensitivity is temporary - we don't know how long it will take but it is likely not that long. 

 

How is your sleep? Have you tried any anti-inflammatories like ibuprofen? Are you taking steroids for the AS? That may end up making you agitated as well. 

 

I wish I could do more to help. I am really sorry you are dealing with this.  

OMW

[WestOn4th]

Hey OnMyWay,

 

You are doing an amazing job at helping, trust me!  

 

I just ground up the same magnesium, and took about 10 to 12 mg of it awhile ago. Yes, I am one of those that reacts to many things. I am hoping this small dose will at least acclimate me to it - and even help a little!  If it works, I can build on it!  

 

I have tried both tylenol and ibuprofen.  They both helped a little bit. It is the evil chest pain that I get that feels like the brain zaps I got after the third dose of 12.5 amitriptyline.  That only happened the third night, and I couldn't even try to lay down after that; and just sat up all night drinking tea and trying to distract myself!  When my chest pain is at its worst, my heart beats irregularly, with a feeling of some kind of nerve zap that fires every few seconds, bringing a huge wave of fear!  This gets to be crippling, where every single little thing I need to do becomes climbing mount Everest!

 

My sleep on nights where it doesn't subside all day long, I can't sleep at all!  I sleep with a heating pad on my chest, and the tylenol and ibuprofen can dull it -- but not all the way when it is bad!  I thought I was getting a bit better, and yesterday it just wouldn't settle down all day.  And today, it is also as bad as yesterday!  I just don't get this. I stopped amitriptyline February 16, and thought I would be getting better, but have only become worse!

 

I haven't been able to figure out how to get my songs on youtube like I hoped. I had help with my other ones years ago. Do you think I could send it to your email address, and maybe you can figure out how to get them on this site?  Or maybe you have a friend that is good with such things?  I haven't been able to function well in my music studio, and find a lot of tasks I can normally figure out are just beyond me right now.  Let me know if it is possible. I don't wish to break any rules of this site; just trying to share what little I may offer to anyone on here!  Thanks!

 

Take care of your ankle.  I have rolled my ankles way too many times over the course of my life, mostly playing basketball!  You have to get the swelling down all the way, and you can not allow your ankle to roll again for months (since the ligament or ligaments involved get slightly stretched and need to settle back in). So just be very careful when doing things that might create instability for the ankle!

[WestOn4th]

OnMyWay,

 

I had an appointment with a psychiatrist by video, who showed up looking completely annoyed (for whatever reason), and had zero patience listening to my story about amitriptyline. Barely one minute in, she told me I should be talking to my GP about it, and that she couldn't treat my AS (which I did not ask her to treat, but only told her it was the reason I

got on amitriptyline in the first place).  She said she could only treat my anxiety and panic attacks.  I told her I wanted to talk to someone that really understood hypersensitivity & kindling, and could advise me what I might do. I told her I reacted to amitriptyline badly when I tried to reinstate it. She didn't offer any insight regarding my fragile nervous system, only wanted me to start Lexapro.  And I told her I was terrified of these drugs since I reacted to amitriptyline, a blood pressure medicine, and even 100 mg of magnesium.  Then she said she couldn't help me, and would refer me to someone else.  And simply hung up on me!  She seemed so impatient right from the start!

 

OnMyWay, what do you think about me starting a super low dose of something like Prozac with a longer half life (in case I just react to it)?  I have so many important events coming up and can barely handle the stress of having the termite inspector come out!  I seem to get obsessed and panicky over simple appointments (which to me seems clearly insane!)  

 

BTW, I haven't given up on magnesium. I took my Doctor's best magnesium glycinate tablets, and ground them up in order to get roughly 10 to 15 mg, and took that two days ago.  Yesterday, I did the same thing, but took that amount three times over the day.  Today I am going to try 25 mg three times a day, since I didn't overreact to it. The reason I didn't give up on it, is that even though 100 mg seemed to agitate me, I noticed several hours later (though still reacting from it) on some level my heart seemed more relaxed.  It is hard to explain, but I thought I would just acclimate myself to it, increase the amounts slowly -- and see if I might get lucky and have some positive benefits from it.  After all, I have read about many people improving dramatically from magnesium.

 

So I though I would try magnesium first this next week or two, then go from there.  I am still desperate having to deal with this withdrawal that makes even grocery shopping a huge event!  Thanks OnMyWay!  I hope your ankle is doing well, and that you had a nice weekend!

[Onmyway]

1 hour ago, WestOn4th said:

OnMyWay,

 

I had an appointment with a psychiatrist by video, who showed up looking completely annoyed (for whatever reason), and had zero patience listening to my story about amitriptyline. Barely one minute in, she told me I should be talking to my GP about it, and that she couldn't treat my AS (which I did not ask her to treat, but only told her it was the reason I

got on amitriptyline in the first place).  She said she could only treat my anxiety and panic attacks.  I told her I wanted to talk to someone that really understood hypersensitivity & kindling, and could advise me what I might do. I told her I reacted to amitriptyline badly when I tried to reinstate it. She didn't offer any insight regarding my fragile nervous system, only wanted me to start Lexapro.  And I told her I was terrified of these drugs since I reacted to amitriptyline, a blood pressure medicine, and even 100 mg of magnesium.  Then she said she couldn't help me, and would refer me to someone else.  And simply hung up on me!  She seemed so impatient right from the start!

 

OnMyWay, what do you think about me starting a super low dose of something like Prozac with a longer half life (in case I just react to it)?  I have so many important events coming up and can barely handle the stress of having the termite inspector come out!  I seem to get obsessed and panicky over simple appointments (which to me seems clearly insane!)  

 

BTW, I haven't given up on magnesium. I took my Doctor's best magnesium glycinate tablets, and ground them up in order to get roughly 10 to 15 mg, and took that two days ago.  Yesterday, I did the same thing, but took that amount three times over the day.  Today I am going to try 25 mg three times a day, since I didn't overreact to it. The reason I didn't give up on it, is that even though 100 mg seemed to agitate me, I noticed several hours later (though still reacting from it) on some level my heart seemed more relaxed.  It is hard to explain, but I thought I would just acclimate myself to it, increase the amounts slowly -- and see if I might get lucky and have some positive benefits from it.  After all, I have read about many people improving dramatically from magnesium.

 

So I though I would try magnesium first this next week or two, then go from there.  I am still desperate having to deal with this withdrawal that makes even grocery shopping a huge event!  Thanks OnMyWay!  I hope your ankle is doing well, and that you had a nice weekend!

Hi Paul, 

good on the magnesium - it does impact the heart - it is a calcium channel blocker (mild) so would have an effect on the heart. Calcium channel blockers are drugs that are used to lower blood pressure and help with arrythmia as well. Because they are mild you may not react very strongly to it. They are an alternative to beta blockers (like atenolol) and you may wish to try this alternative if you want.  Many of us are actually magnesium deficient as well - I was deficient on blood tests which is rare as the blood 'draws' the calcium from the rest of the tissues to keep blood levels steady so it means I was severely deficient overall. 

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8108907/#:~:text=Magnesium is a natural calcium,causes vasodilation%2C and reduces BP.

 

My view of psychiatrists is that they are insecure and ego driven people - many years ago where I grew up people would say that to become a psychiatrist something was not right with you. That may not be true but my view is that they do not have a lot of empathy, especially if you challenge their methods - more compassion fatigue than other doctors, more ego? Your experience is extremely common on these boards, so I wouldn't let it bother you.

 

Regarding prozac - it is a very different drug from amitriptyline - prozac is an SSRI and amitriptyline  is a tricyclic antidepressant (TCA). If we believe that prozac will be helpful in treating anxiety (it seems no better than placebo in depression so likely same with anxiety) then it wouldn't really be useful in your case beyond working as a placebo. It will not cover most of the 'deficits' and the chaos that amitriptyline WD has created, though it may cover some. It does have the risk of hypersensitivity. So overall, if it were up to me, I would not do it. But I also understand desperation so if you want, you can try it. I just wouldn't expect much from it. 

 

The issue with withdrawal is not really about half-life - though psychiatry is obsessed with that idea. A longer half life helps the drug stay longer in your body and the drug levels go down slower but at some point you do reach 0 - perhaps in a month or two with prozac rather than in a week with lexapro when you stop the drugs. The reason why shorter half life drugs have more withdrawal *COULD* be that the level of the drug in the body fluctuates the whole time you are taking it - so in your 5 years of taking citalopram you missed doses 20 times you went into mini-withdrawal 20 times so you are becoming slowly kindled. Whereas if you missed 20 doses of prozac your blood levels don't really fluctuate. I used to get vivid dreams every time I missed my citalopram dose (many times over 19 years) - in fact that would be the way I would know that I missed my dose. 

 

I know you need hope right now and something to fix this horribleness but I don't know that prozac is the hope. I think you will get better slowly with the magnesium and potentially epsom salt baths. Does exercising a lot make things worse? Does self compassion meditation help? Claire Weekes? Even tiny hits at this will be helpful. Can your GP help with alternative classes of drugs to treat the arrythmia? Ask them for drugs that do not cross the blood brain barrier very much (atenolol is one of these but beta blockers in general are problematic). 

 

I know how horrible it is to  feel this way and being scared of simple things - my heart goes out to you. But this will get better, I promise. Just remember that. 

OMW 

 

 

 

Edited July 15, 2023 by Onmyway

[WestOn4th]

OnMyWay,

 

Thanks for the information. There is so much to know when it comes to this condition.

 

Even a couple months ago, the harder the exercise, the better I felt. But for some reason over the past couple months, as this has become worse (going on 5 months total since I stopped amitriptyline), the same longer bike rides don't seem to help as much. Yesterday I did a shorter loop, less time on the bike -- and I'm going to continue trying to shorten my little workouts (maybe do more shorter workouts) to see if it helps a little.

 

I believe you are right about Prozac, I am just desperate to get my life back on track.  My house has a strong buyer, but I haven't been able to find a home out in North Carolina yet.  The RE agent out there is scouring the MLS for any home that even comes close to what I want, but has found nothing.  She and my brother have looked at quite a few, and they were just beyond horrible!  I showed my house a stressful 17 times, dealt with cancellations, termite inspection, appraisal, home inspection, septic nightmare, and more; all while becoming progressively worse!

 

What happened to me that I have become more sensitive over the past 5 months, rather than healing?  The two amitriptyline reinstatements?  Atenolol?  I was already bad when I tried them both, and this level of withdrawal just keeps on keeping on!

 

I am not on the greatest terms with my GP right now. He hasn't stopped my thyroid med, the only thing I am taking; but he wanted me to get labs again, even though last December everything, including my thyroid was pristine (due to the strict plant based diet I have been on. I had stopped all drugs but levothyroxine, and he wanted more labs?  I actually tried to go get lab work, and it was so crowded that after waiting for a couple hours, they said it was going to be another two hours. I was jumping out of my skin though, and just went home!  I did find out they have appointments though, but I don't think they will have the written lab work request from my doctor on file anymore.  And that means I would have to get that from my doctor also.

 

I am going to work the magnesium route and see if that helps. And I will take it from there.  I have no interest in any referral.  To think, they will charge my insurance for this psychiatrist who spent an entire 5 minutes (or even less) with me.  Thanks OnMyWay.  I know I'm needy and a pest lately, so thanks so much for everything!  You must have a lot of people that need your time, so I'll update you in a few days!  You're awesome!

[WestOn4th]

OnMyWay,

 

I was the one that chose Atenolol, coming from metoprolol (which gave me nightmares, and even hallucinations when I was awake). I researched a medication that didn't cross the blood brain barrier, and found Atenolol to be the most mild of all the beta blockers. I have tried to find another like it, but I can't.  It was the best choice!  What I didn't understand at the time is that amitriptyline is used to escort certain medications across the blood brain barrier (evidently amitriptyline turns off the p-glycoprotein pumps which normally prevent many drugs from crossing the BBB). And though it was mild, I think some Atenolol was still getting through.

 

My question: Since I am no longer taking amitriptyline, should I try to take a very low dose of Atenolol?  I tried 12.5, which was my normal dose at the time of stopping. And of course, I reacted to it.  What if I try half of that?  Or less?  The biggest issue that seems to set off anxiety and panic is how exposed I feel with all the heart flutters, and arrhythmias. And Atenolol is supposed to help that.  If I could get my body used to it, at least I could try to quiet down

my heart!  I would try it in the morning, so as not to lose a night's sleep if I react harshly like last time at 12.5.

 

Again, sorry for bothering you OnMyWay. This is just very important right now.  Thank you so much for all of your effort!!!

[Onmyway]

5 hours ago, WestOn4th said:

OnMyWay,

 

I was the one that chose Atenolol, coming from metoprolol (which gave me nightmares, and even hallucinations when I was awake). I researched a medication that didn't cross the blood brain barrier, and found Atenolol to be the most mild of all the beta blockers. I have tried to find another like it, but I can't.  It was the best choice!  What I didn't understand at the time is that amitriptyline is used to escort certain medications across the blood brain barrier (evidently amitriptyline turns off the p-glycoprotein pumps which normally prevent many drugs from crossing the BBB). And though it was mild, I think some Atenolol was still getting through.

 

My question: Since I am no longer taking amitriptyline, should I try to take a very low dose of Atenolol?  I tried 12.5, which was my normal dose at the time of stopping. And of course, I reacted to it.  What if I try half of that?  Or less?  The biggest issue that seems to set off anxiety and panic is how exposed I feel with all the heart flutters, and arrhythmias. And Atenolol is supposed to help that.  If I could get my body used to it, at least I could try to quiet down

my heart!  I would try it in the morning, so as not to lose a night's sleep if I react harshly like last time at 12.5.

 

Again, sorry for bothering you OnMyWay. This is just very important right now.  Thank you so much for all of your effort!!!

That's good planning for atenolol - good on you for being proactive and researching it.

I didn't know that amitriptyline made such a difference with atenolol but it makes sense. 

 

You can try atenolol again at a lower dose - try with 1mg first and then see if you can increase to 2 etc. 

You can try other antiarythmia drugs as well - there are different classes. 

 

 

[Onmyway]

Hi Paul, 

haven't heard from you in a while so wondering how you are doing. 

Thinking of you, 

OMW

[WestOn4th]

Hey OMW!

 

Thank you so much for the post!  It means a lot to me to know someone that has gone through this before is thinking about me, and supporting me!  🙂

 

I have been doing a bit better!  I have magnesium up to full speed -- taking 100 mg three times a day!  I worked up to 50 mg three times a day for six days, and on my third day of 100 mg three times a day!  It is definitely helping!  I also worked my way up to taking approx 4 to 5 mg of atenolol.  I am not reacting badly to the larger amount, but it may be making me a bit tired and irritable (along with the magnesium making me a bit sleepy).  I hope I get used to taking it throughout the day (as recommended on this site).

 

I still struggle with mornings the most.  How it ever evolved to be so bad in the morning months after quitting amitriptyline; I'll never understand!  I always wake up at around 2 am still also, but at least I'm able to fall asleep ok. Getting back to sleep is yet another matter!

 

I finally secured a home in North Carolina!  In three weeks, my brother will be flying out here to help me move!  It is amazing how I have no interest in taking much of my stuff with me. I am in the process of giving nearly all of it to a family in need nearby where I live. In the desert here, we get many people living off the grid.  He is a neat man that works hard for his family, and I feel good about giving my possessions away!  Aside from my studio, and doggies, I really don't care if I have anything at all!

 

How is your ankle?  Are you back to speed yet?  Thanks for checking up on me!  I was trying to give you a break, knowing your attention is needed in many directions!  Oh, and I haven't given up on trying to get those songs on this site. But I am very sidetracked right now with this move!