AprilShowers: My Story, My Nightmare, My Hopes For Recovery

[ShakeyJerr]

My autonomic nervous system is really broken. I wonder if it will ever fully heal. 

 

I feel for you, April. I wonder the same thing for myself. The tremors, the chills, the pain in my arms... And the high level of anxiety - I just wonder if it will ever stop.

 

Are you still taking beta blockers or did you stop? (I could not tell from your posts, but then again, reading and concentrating gets hard for me sometimes.)

 

I took a beta blocker many years ago when a doctor mis-diagnosed a thyroid issue as a heart issue. I was actually off of antidepressants at the time. The beta-blocker threw me into a dark depression. That's how I ended back on the anti-depressants. I have beta blockers on my "allergic to" list now.

 

In any case, be good to yourself. My prayers are with you.

 

SJ

[AprilShowers]

I'm off them now. They should be well out of my system by now in fact but the damage to my over sensitive nervous system has been done and it's in hyperdrive again. I hate the feelings both physical and mental that it brings up when my body is flooded with stress hormones. It's horrible to live with. I now realise that my adrenal system is the cause of my heart palpitations and tachycardia though and not the other way around. 

 

I don't know how to fix it but there's definitely no quick fix. 

[ShakeyJerr]

I'm off them now. They should be well out of my system by now in fact but the damage to my over sensitive nervous system has been done and it's in hyperdrive again. I hate the feelings both physical and mental that it brings up when my body is flooded with stress hormones. It's horrible to live with. I now realise that my adrenal system is the cause of my heart palpitations and tachycardia though and not the other way around. 

 

I don't know how to fix it but there's definitely no quick fix. 

 

I completely sympathize, April. I am in the same boat with you right now. We will get healing. Only God knows the timing and the mechanism and the path of that healing. But it will come.

 

For now, do deep breathing when you feel the shakes and the stress coming on. I do that, and it does help. I am also sipping on decaf black tea all during the day. The theanine in it has a calming effect, though that is starting to even be less and less

 

Be good to yourself!

 

SJ

[AprilShowers]

Thanks ShakeyJerr. You hang in there too. 

[AprilShowers]

I can't remember how many year's it's been since I had a decent night's sleep but I really need one soon. I feel like I've set my recovery back by months an months I'm feeling really wretched at the moment. Agoraphobia and anxiety are really high and the morning shakes are a little better but still troubling me a lot. I've been crying uncontrollably all day. Life is very stressful at the moment and now this on top is crushing me. 

 

I got some l theanine and Phosphatidylserine to try but I'm a bit scared to take them in case I make myself worse. At the same time I feel I must do something, I can't just sit here waiting for it to go away while my heart and other symptoms get worse. 

[brassmonkey]

Have you done any research on Phosphatidylserine? I would start with this link, it's enough of a red flag to make me want to dig deeper.

 

https://en.wikipedia.org/wiki/Phosphatidylserine

 

I would not recommend taking this supplement.  It is a blood clotting agent that could cause dangerous problems to our sensitized systems.  In addition there is little to no proof that it has any effect on the sort of symptoms that we are experiencing.

 

We have other members using theanine with mixed results.

[ShakeyJerr]

I have been using theanine; started a few days ago. I have been opening up 200mg capsules and splitting it between 2 cups of decaf black tea (which also has about 20mg or theanine naturally in it) during the day. I am getting some relief. Some people have had good success with it.

 

Just remember - add one supplement at a time for a week, so you know how it alone is affecting you.

 

Stay in prayer, stay in worship - and stay in the knowledge that people are here for you!

 

SJ

[AprilShowers]

Have you done any research on Phosphatidylserine? I would start with this link, it's enough of a red flag to make me want to dig deeper.

 

https://en.wikipedia.org/wiki/Phosphatidylserine

 

I would not recommend taking this supplement.  It is a blood clotting agent that could cause dangerous problems to our sensitized systems.  In addition there is little to no proof that it has any effect on the sort of symptoms that we are experiencing.

 

We have other members using theanine with mixed results.

 

Thanks. I've been reading various topic threads on this site where some people were suggesting it was helping with sleep and might help sensitise the cortisol feedback system to stop the flooding/kindling of stress hormones that are causing me so many ongoing problems. I'll go very cautiously if I try it but I'll maybe give it some more thought first. I liked the sound of getting a couple of hours better quality sleep from it though as some people seem to have experienced.  

 

 

[AprilShowers]

I have been using theanine; started a few days ago. I have been opening up 200mg capsules and splitting it between 2 cups of decaf black tea (which also has about 20mg or theanine naturally in it) during the day. I am getting some relief. Some people have had good success with it.

 

Just remember - add one supplement at a time for a week, so you know how it alone is affecting you.

 

Stay in prayer, stay in worship - and stay in the knowledge that people are here for you!

 

SJ

Thank you. So splitting the dose has worked for you then? I was a bit worried when I saw you had gotten more depressed after taking it. I got 100mg capsules so maybe I'll be okay with that. I was surprised when I started drinking green tea last week how effective it was in reducing a little of the anxiety so thought a slightly stronger supplement might do better for me. I used to drink a lot of black tea without ever feeling any relaxation but perhaps it's because I add milk to black tea, maybe it interferes or something. Anyway, I'm not a big fan of green tea so would rather take a capsule with water if it works for me. I might split the 100mg in half to begin with and stick it in some tea as you are doing? Does it blend in or tend to sink to the bottom? 

[ShakeyJerr]

For me, splitting the dose has helped. 200mg at once made me feel strange, like my body was being turned off. And then when it felt like my body was being switched back on a couple of hours later, I was irritable.

 

But I do not get either of those effects splitting it and putting it in the decaf tea. I get a short good bounce from it now. Wish the bounce was longer.

 

But remember - different people in our circumstances get different results. Yes, generally speaking, if a lot of people here say they had a bad experience with something, then do stay away from it. But if people are getting a good result, then do some research and make an informed decision.

 

SJ

[AprilShowers]

I decided to start with the l theanine this morning, I took a 100mg capsule. I noticed a few weird sensations in my forehead for some reason and a few moments of what might have been rebound anxiety (my system really doesn't like to be calmed down) that felt a bit more intense than usual but overall I think it helped. I got back to sleep for a couple of hours, then this afternoon I flaked out on the sofa and got a good few hours rest. I'm not sure if it's the theanine or just exhaustion that took over. Either way I think I'm just going to take a little in the mornings only for now and let my brain adjust to it. 

[ShakeyJerr]

I decided to start with the l theanine this morning, I took a 100mg capsule. I noticed a few weird sensations in my forehead for some reason and a few moments of what might have been rebound anxiety (my system really doesn't like to be calmed down) that felt a bit more intense than usual but overall I think it helped. I got back to sleep for a couple of hours, then this afternoon I flaked out on the sofa and got a good few hours rest. I'm not sure if it's the theanine or just exhaustion that took over. Either way I think I'm just going to take a little in the mornings only for now and let my brain adjust to it. 

 

Let us know how it goes!

 

SJ

[AprilShowers]

So, I haven't been getting along great with the l theanine. I think I may just be too sensitive at the moment for an actual supplement amount of this. I had a couple of headachy days that went away when I stopped for a day then I tried a third of a capsule just sprinkled in some tea and it was okay, no headaches but overall I had a worse day that day so maybe I'm better off without it, and maybe it's one that will work better for me once I'm less fragile. I've paused for the time being. 

 

Today though, I tried the phosphatidylserine, I woke up very shakey with bad heart palpitations took about half a capsule this morning just to see how I tolerated it, within half an hour the symptoms seemed a bit less and I got back to sleep for about an hour and a half and right now I feel fairly calm. So we shall see. I had taken my usual supplements (vit c, omega 3, magnesium, potassium) at the same time so they may also have had a calming effect. Time will tell. 

[AliG]

April.  If I were you I would stop experimenting with added supplements for now and establish a withdrawal baseline . I think a lot of us go through a stage of throwing supplements at WD but ultimately it's just like the drugs in the end - ineffective.

 

I did it too - so I understand. It did nothing - in fact it delayed progress and often turned paradoxical.

 

When you try so many things in a short period of time it is impossible to know what is WD symptom or supplement causing symptoms. Keep a diary . That's the best way of knowing. Track your symptoms.

[AprilShowers]

Actually I've had a success with some supplements, most I've tried have been of ongoing usefulness and some have gotten me through humps. I am being cautious and keeping the additions modest and low dose. 

[brassmonkey]

I've done some further research into phosphatidylserine.  It appears that it does not play well with ADs causing moderate interaction problems.  This should not cause a problem for AprilShowers, as she is no longer on meds.  However, anyone else considering taking this supplement should be aware of this. I would not recommend this supplement for anyone who is tapering ADs.

[AprilShowers]

I've done some further research into phosphatidylserine.  It appears that it does not play well with ADs causing moderate interaction problems.  This should not cause a problem for AprilShowers, as she is no longer on meds.  However, anyone else considering taking this supplement should be aware of this. I would not recommend this supplement for anyone who is tapering ADs.

 

It's a bit hard on the gut so I'd caution anyone to start with a very small dose. I did get some much needed sleep but am going to only use as necessary, probably not every day. 

 

The morning shaking is a fair bit less violent now and lasts less time, I think this has gradually calmed by itself rather than the supplements although I have been able to reintroduce all the regular supplements I'd already been taking before without any ill effects. 

 

Annoyingly my blood pressure and heart rate are now worse than before I took the beta blockers. Hopefully they'll start to settle soon. My hospital results from the 24hr blood pressure test show a significant spike in both in the mornings. 

 

Also the past few days I've had a horrible stiffness in my neck. Is this a withdrawal symptom thing or could I just have been sleeping funny on it? 

[AprilShowers]

So my stiff neck spread until my whole body was stiff and it seems it might have been that my body had become too acidic. I stumbled on this blog and thought I'd give changing my ph a try. My diet hasn't been very good this past month because it's been so difficult to shop and cook while being so ill and I live alone and also my appetite goes through wild swings from unable to eat to begin ravenous. Anyway, I tried a 1/4 teaspoon of bicarb in some water which is alkaline to see if it helped as a temporary balancing measure and I did feel a little better last night and much better today, my muscles feel much looser. I need to start eating plenty fresh vegetables again, that neck discomfort was deeply unpleasant. 

[ShakeyJerr]

Hi April -

 

I just noticed in your signature that you had a bad reaction to beta-blockers. I did too. In fact, it was back in the early 2000s, when I had quit my ADs the first time (with zero taper, thanks to an idiot doctor and my ignorance). I developed heart palpitations a few months later - which I did not even tie back to being off the ADs. My GP gave me a beta-blocker. I went into a deep depression, bordering on suicide. Dropped the beta-blocker immediately, and put it on my "allergic to" list. And then went back to the psychiatrist who had me cold turkey the ADs the first time (boy, was I ignorant), and ended right back on Prozac and Lithium.

 

Why were you given the beta blocker?

 

SJ

[AprilShowers]

I was given the beta blocker because my heart runs quite fast and I get palpitations. Sadly, they weren't useful and have now made everything worse. I should have just left well enough alone. Oh well. 

[Kiaza]

How are you feeling? I've had the same symptoms as you for 1,5 now. Somedays I can function, do some light exercise and little bit work. Mostly I just am since I feel so horrible. My body is plain acid, dunno how to get rid of it. Everytime I try to do something to soothe my body it goes haywire. I hope you are doing better

[AprilShowers]

Yes, feeling a bit better. I'm less stiff and shaking a bit less. On the mend although I've never fully recovered from WD (which began in 2014) and I don't expect to be getting back to 'normal' whatever that is anytime soon. 

[AprilShowers]

After feeling a bit better last week I'm having a very bad few days this week which I hope won't last. It started with persistant headaches and those seem to have eased off but now the shakes and anxiety are getting worse again. I'm wondering if it's the hot weather making things worse, we've been having a very hot sunny spell. Anyone else get triggered more by heat? I'm trying to stay hydrated but it's not helping much. 

[ShakeyJerr]

Could be weather related. Though for me, it's non-sunny days that usually lead to higher symptom levels.

 

In any case, feel better. Work your tools. And yes, stay hydrated!

 

Much love!

 

SJ

[AprilShowers]

Quick update to say I'm ticking along although the current UK heatwave isn't helping me. I find I'm far more anxious and stressed when the weather is hotter so I'm trying to keep everything on an even keel and very calm. Easier said than done but I am trying. Have been a bit quiet as have been dealing with a family illness and bereavement that was all quite overwhelming. Will update more when I get a bit more attuned to recovery again.  

[AprilShowers]

So I seem to have stabilised a bit after the whole propanolol debacle. Had some heart tests but they seem unconcerned by the rapid heart beat, apparently it can get much worse although the palpitations don't feel nice at all and I do still get them regularly. They're doing a longer test in Oct to be sure. Still experiencing all the withdrawal issues but some days are better than others. I don't really feel like I've turned a corner yet as I've been here before and relapsed and I feel now like any kind of drug can trigger severe symptoms so am very careful. 

 

I'm experiencing new symptoms of getting very dry eyes randomly, they really shrivel and crust and flake around the eyelids from dryness and my eyes water then a few days later it's all back to normal. Can't seem to figure out why or whether there's an underlying cause that's withdrawal related or something else. Am wondering if I will ever get to a point where I don't have debilitating things going on in my body any more. But at least I'm not shaking like I have parkinsons on a regular basis now and that I am infinitely grateful for. 

[jonnypeters1234567]

How are you now?

[India]

@AprilShowers How are you now?An update?

I am in London too.

[AprilShowers]

Hello, back again. Have been struggling for such a long time and finally seemed to get a little more stable, off drugs forever as far as I'm concerned and the shakes eventually receded except for just anxiety. Still taking omega 3 and magnesium on a regular basis and I'm as stable on that as I ever was on Venlafaxine. 

 

However experiencing something new this week, I don't think it's me though, I think my neighbours are causing it there's a low frequency sound in my house, seems to be coming from their property but when I knocked they weren't helpful, it's shared housing and clearly not making them sick but it's made me sick, it's like something has taken over my fight or flight but when the noise stops I go back to my regular more stable level. It's not noise it's not loud, in fact it's quieter than a very quiet room but it goes right through me and turns on my fight or flight. White noise and foam earplugs make it worse.. it's not tinnitus or anything and other than hypervigiillance I've never been sound sensitive before but this is one of the worst things I've experienced, nowhere in my house can I get away from this frequency and even outside I can hear it and my anxiety has gone through the roof and I'm starting to be trembly again when the noise stops it's fine. Please please don't let me get the shakes back. I'm really scared that the mental health team will want to medicate me again if I go off the rails. Anyone else sensitive to low frequency sound? I've never experienced it before. 
 

[Catina7]

I'm sorry to hear about your struggles.  I found a section on the site that deals with this sort of problem.  I hope it will help you!  🌹

 

 

[AprilShowers]

Thank you. It's taken me so long to reach a place where I'm not shaking and then this, so depressing. 

[Catina7]

I wonder what is causing the sound.  Can you make another attempt to find out from your neighbors what it is?  Could you write them a note explaining your situation and kindly ask them what the noise is, and if it's something they could stop?

[AprilShowers]

On 6/19/2023 at 11:13 PM, Catina7 said:

I wonder what is causing the sound.  Can you make another attempt to find out from your neighbors what it is?  Could you write them a note explaining your situation and kindly ask them what the noise is, and if it's something they could stop?

It seems to be something one of the people in the shared housing next door is switching on when they are home. They aren't very helpful and it doesn't seem to be bothering them. 

 

I woke up shaking again this morning, can't believe I'm going through this again. Would think I was having a nervous breakdown except when the sound stops I get fine again. 

This is my life now. I live alone and I feel completely alone and unable to cope. 

 

 

[AprilShowers]

Environmental health came yesterday morning but the sound had stopped and he said he can pop back in office hours but in the meantime I'm stuck with this thing firing off at random making me shake and feel incredibly ill, it puts my heart rate up to tachychardic (117 currently). I had a relatively quiet day yesterday and as the stress hormones wore off I was feeling normal then it started again late last night at a low level and now they've turned it up and I'm shaking like a leaf. I'm stuck in my home with nowhere to go and nobody to help, it's torture. It doesn't seem to be bothering anyone else. 

 

When I could think straight yesterday I was wondering if somehow I could get my nervous system to stop reacting to it, but I can sort of feel it through my organs, it makes my ears ring and makes me shake and want to pee, my mouth goes dry, there's a tingling/prickling to my skin, it's like a bad wave, especially when the frequency or whatever it is is strong. Next door are not great people and claim not to know what it is, it's shared/temporary housing for homeless people, the neighbour the other side thinks they're dealing drugs and it got raided by armed police recently, there's been crazy knife people too, addicts and alcoholics, so I'm reluctant to get into conflict or interact too much with them as i live alone, single, friends drifted away, family mostly at a distance and I don't really have any safe haven exept but my shabby little house that now feels so toxic to be inside.

 

This is just me at this point in my recovery. I wonder if my nervous system is so broken that it will never be healed, then the sound stops and I feel relief (well after a while when the stress response dissipates). I'm at the mercy of someone else with a switch that ruins my life and leaves me too exhausted to even cope, to think about coping, it's not my thoughts or anxiety about the noise that is triggering the shakes though, because I've woken up shaking when they've switched it on when I've been asleep and there's not a room in my house or even outside where I can seem to escape it. It's like the most bizarre nightmare I don't know what's happening to me but someone else is holding the switch to my body. I feel like I should be wearing a tin foil hat when I try to explain it to anyone. In a way it's sort of a vibration thing, I can feel it in my body, my organs, the frequency penetrates me as well as my entire house and can't stop my nervous system from going into overdrive, presumably because it's been oversensetized this way since the drugs went south on me. Presumably because I will always be this way, always waiting for the next trigger to set it off. It leaves me desperate and then the sound stops for a few hours and I begin to feel better. Not normal life better, just someone still trying to recover from cold turkey withdrawal after all these years better. Which would be enough if I could get even that level of recovery back for more than a few random hours of someone else's schedule. 

 

I'm here trying to talk my nervous system and my brain into not responding to the trigger and to try somehow to practice acceptance. 

 

Brown noise isn't helping, my system is firing. I'm trying to tell myself it's not forever, this too will pass, sip magnesium, try to remember what's helped this extremis feeling in the past, not catastrophise, deep breathe, calm myself, distract myself, not be scared despite being in fight or flight.. (I just freeze in despair). And when nothing I do is helping I come here, to people who at least understand what it's like to be powerless in the throws of some kind of weird body agony that nobody else understands. 

 

 

[Catina7]

What you're going through sounds horrible, and I'm so sorry you're dealing with this.  Gosh, I wish you at least knew what the sound was!  If worse comes to worse, can you find another place to live?  I know it may not be feasible, but maybe there are other options out there.  In the meantime, it sounds like you're trying everything you can to help yourself and that's good.  Your nervous system is no doubt still recovering from all your bad drug reactions, and although this is a setback it doesn't mean it will be like this forever.  It's just another phase of your recovery and healing. You've made it this far, and for that you should be proud.  

[AprilShowers]

Environmental health came back, they couldn't hear the frequency so don't think there's much they can do about it. It had been milder for a bit, or at least my response to it had been milder so I could get some sleep but last night I didn't sleep at all and can't sleep today. Too full of adrenaline or cortisol (not sure which) to get rest but too exhausted to actually do anything. Having to force bits of food down my throat as my mouth is so dry. On top of that I've had my income reduced quite drastically which is adding more stress to my life and giving me less resources to cope. 

 

I'm so not sure what to do anymore. Even though I had bad withdrawal after a beta blocker I'm wondering whether I may need to go back onto one again, my heart rate is going quite high it was 125 this morning. My problem is the mental health and doctor don't really understand why I can't/don't want to take pills even though most antidepressants have adverse reactions, kindling or make me suicidal. At the moment when this frequency is not happening I seem to feel okay (though exhausted) and so I don't want to give myself the exact symptoms from an adverse reaction that last months and months without any respite. I've been down that road too many times. At the same time I'm worried for my health and don't really have a lot of support. I did feel better on the beta blocker and it was only when I came off it that I had the withdrawals again.. I didn't taper at the time because they didn't tell me to taper so I'm wondering if that was the problem and if I just got back on and stayed on maybe that would help me manage my symptoms until I can get some kind of grip on my life again. Then again reaching for a pill isn't always the right answer and I don't want to get onto a beta blocker and find that my body fights back by giving me a bigger fight or flight response or kindling kind of effect. Also I'm not sure whether I'm experiencing adrenaline/noradrenaline or cortisol and whether a beta/blocker deals with any stress hormone? 

 

If anyone has any advice I'd be very grateful.