@Sminismoni i get your point about not being able to do much about what’s going on in our bodies with regard to WD except give it time. I guess I’ve thought if I knew what was going on it might give me a sense of hope that ill eventually heal. Some days I lose all hope of that ever happening.

16 hours ago, Pokey449 said:

@ I think 🤔my sleep is attempting to stabilize.

I think your sleep is always trying to stablise, Im pleased you are starting to see some signs of it though.

16 hours ago, Pokey449 said:

Hoping it will ease up with time🤞🤞🤞🤞

Me too mate, time is the key, you'll get there, the path is often not straight though.

Hope you get a good sleep again tonight.

10 hours ago, Pokey449 said:

I guess I’ve thought if I knew what was going on it might give me a sense of hope that ill eventually heal.

We don't need to know what's going on to know that healing is possible and will happen..Too many folks before us have healed for us to think we will be the exception. You're not that special @Pokey449 😜 the universe ain't gonna single you out here. You will heal, like everybody else does.

11 hours ago, SpiroC said:

@Sminismoni , as a psychiatrist - is this nervous system injury well known in the field?

Is there any indication of how long it’ll take?

This varies from country to country, but even here in the UK is still not well recognised among professionals, let alone understood. Most of the knowledge in this area comes from the community like this one.

Again they have no idea of timescales and nor do we really. There are general trends, but everyone is different. The best thing is to do as @Sminismoni said and not go looking for a fixes or timescales to hang all this off, just trust the body to heal and take each day as it comes, practicing acceptance and distraction till things get easier and eventually fizzle out.

@Chippy @Sminismoni your advice about accepting that in time healing will happen is hard for me to, well, accept today especially. I had been gradually feeling better during the day after finally settling on when & how I take my daily doxepin dose. Sleep has been slowly improving until last night. I awoke multiple times feeling just god awful/sick. Nausea, headache, akathesia-like sxs, aggravated whole body pain. A deep malaise. I think the worst night I’ve had ever. I usually perk up after I get up. Not today. I double checked that I didn’t miss a dose or do something stupid. I use a daily pill box and app on my phone to remind me of what& when to take my meds. I didn’t miss a dose etc

Today is supposed to be a go to the health club day to get some much needed exercise. It ain’t going to happen as I continue to feel terrible this morning. It’s impossible to plan a life. I really want to see my family who are in another state, but there’s no way I can cope with air travel feeling like this and shouldn’t be driving long distances being so tired behind the wheel. I stopped playing in the orchestra as well because I just don’t feel like playing much of the time.. This up & down existence sucks & the loneliness & fear it causes me gets to be overwhelming.

5 hours ago, Pokey449 said:

I stopped playing in the orchestra as well

What instrument do you play, and in what orchestra? I think the talent to do this is wonderful! As a youngster I would have loved to learn the piano, but I didn't think my parents had the money to buy one, nor the space to keep it. I hope sometime you'll be able to return to your music, it's such a gift!

@Terry I’ve played in various community orchestras & bands over the years along with small ensembles ex. trios, quartets etc. I play a French horn, ever since high school many moons ago. The French horn is physically demanding to play & energy is one thing I don’t have a lot of these days.

I miss it, but that’s what these poisons do to us, rob us of living a life as we wish 🥲

18 hours ago, Pokey449 said:

@Chippy @Sminismoni your advice about accepting that in time healing will happen is hard for me to, well, accept today especially. I had been gradually feeling better during the day after finally settling on when & how I take my daily doxepin dose. Sleep has been slowly improving until last night. I awoke multiple times feeling just god awful/sick. Nausea, headache, akathesia-like sxs, aggravated whole body pain. A deep malaise. I think the worst night I’ve had ever. I usually perk up after I get up. Not today. I double checked that I didn’t miss a dose or do something stupid. I use a daily pill box and app on my phone to remind me of what& when to take my meds. I didn’t miss a dose etc

Today is supposed to be a go to the health club day to get some much needed exercise. It ain’t going to happen as I continue to feel terrible this morning. It’s impossible to plan a life. I really want to see my family who are in another state, but there’s no way I can cope with air travel feeling like this and shouldn’t be driving long distances being so tired behind the wheel. I stopped playing in the orchestra as well because I just don’t feel like playing much of the time.. This up & down existence sucks & the loneliness & fear it causes me gets to be overwhelming.

Sorry to read Pokey, the ups and downs do wear on us, but we must pick each other back up, take the day the best we can and look forwards, worrying too much about it all does not make it better, in fact it makes it worse, that is where acceptance comes in. When it is a particularly bad day, I just roll my eyes and engae my routine to get me through it. What else can I do! Getting down and frustrated certainly only makes things worse.

You are seeing improvements, hang onto that. Hopping for a better sleep tonight for you.

@Chippy All of this is quite “Jekyll & Hyde” like. Saturday night was awful, but last night I got 7.5hrs of sleep, yet I feel like I’ve been rolled over by a truck. I guess all this means my body is working towards, but struggling to find its way to stability??? Makes it hard to plan a life not knowing from one day to the next if the day will be diamonds or stones.

A psychiatrist I worked with once said that running a small business (private practice) was a bit like being a rooster one day and a feather duster the next. I think WD is much the same.

18 hours ago, Pokey449 said:

@Chippy All of this is quite “Jekyll & Hyde” like. Saturday night was awful, but last night I got 7.5hrs of sleep, yet I feel like I’ve been rolled over by a truck. I guess all this means my body is working towards, but struggling to find its way to stability??? Makes it hard to plan a life not knowing from one day to the next if the day will be diamonds or stones.

It is. I have pretty much given up trying to predict how I will feel. I just try I will likley feel vaguely able to cope with the day, how well is another matter.

@Chippy @Sminismoni when I look back and consider my long history of being on/off psych meds + my current circumstances I’m starting to wonder if my brain is permanently & forever broken?? Will I ever know normalcy again?? I think I surely will because I seem better off than many folks here. But I think maybe I was having symptoms of PWS before this last scenario with doxepin started. Either way my only choice is to do the best I can to achieve some level of stability and cross my fingers.

28 minutes ago, Pokey449 said:

I’m starting to wonder if my brain is permanently & forever broken??

@Pokey449 , your brain is not broken forever. It will heal in time. The journey is unpredictable and slow, but it will eventually feels better. The problem is that we don't know when we will actually feel better and heal. There are many stories from people who have recovered after three years. Everyone is different. I'm at 29 months journey and still having ups and downs. What I can see is that every wave is slightly weaker.

Hang in there.....you will recover. Time is our friend...

@Raymond all good to know & hear. But I feel like life is passing me by. I’m 77 and feel like I’m running out of time. I need to go be with my family all of which is in another state (long story) but I don’t feel comfortable/well enough to travel yet. Extremely frustrating.

27 minutes ago, Pokey449 said:

don’t feel comfortable/well enough to travel yet. Extremely frustrating.

@Pokey449 . Totally understand. I am struggling to travel to see my father and mom. This journey is terrible. Somehow, I can travel places, but I can't travel to see my father yet. I still get some anxiety when thinking about it. I talk to him over the phone a lot, but body won't allow me to travel and see him. This is totally ridiculous, but it will eventually heal. We need to keep assuring that we will heal.

Take care of yourself. One day, it will all come for better. You still have a long way to go in life..

Keep positive.

18 hours ago, Pokey449 said:

when I look back and consider my long history of being on/off psych meds + my current circumstances I’m starting to wonder if my brain is permanently & forever broken??

Certainly not mate!

18 hours ago, Pokey449 said:

But I think maybe I was having symptoms of PWS before this last scenario with doxepin started.

It is very possible mate. All of our current states are an amalgamation of our drug historys not just one specfic event IMO.

18 hours ago, Pokey449 said:

Either way my only choice is to do the best I can to achieve some level of stability and cross my fingers.

That's the way mate, have some faith and trust in your system to put this right.

@Raymond @Chippy i guess what’s got me so pessimistic is that I’ve been at the same dose of 29 or 29.6 mg since January. Granted I’ve been rocking the boat by messing with how & when I take my daily dose(s). I’ve experimented with taking it as a single daily dose to 2 half doses, trying different times to finally to return to a single dose at 12 noon where I’m at now going on 3 weeks. I seem to be gradually getting more sleep at night yet I wake up at least 2x at night & in the morning feeling like I’ve been hit by a truck. I further acknowledge it could take longer than 3 weeks to finally feel better.

My current long term plan based on advice from Dr H is to eventually get down to 25mg on the doxepin and stop there & stay there the rest of my life. Trying to get to zero, given my current circumstances will take years of misery to achieve. I’m 77. I’m ok with that as long as I can become stable at that dose and have no ill side effects. He then advises reducing my mirtazapine to 3.75mg and leave it at that. But I worry given all the trouble I’ve been having since January if I will EVER feel well again. Logic says, given enough time I will. Logic also says “what other choice do I have” But all said I still worry this misery could still go on & on. I just don’t want to spend the rest of my life struggling with this misery. The thought of that scares me more than dying.

@Pokey449, if you can stabilize where you are, even with drugs, it is OK, I think. Before Paxil has stopped working for me and had started to create depressions after depression, I haven't even thought to stop it. I was happy, very fonctionnal, in perfect physical and mental shape. I was taking my pill every morning without asking me about it. But one day, after 14 years, the antidepressant stopped working, and the biggest Hell on Earth started for me. So, yes, I understand your scare to live in hellish dread which is beyond the human can imagine because of the brutality and the length of the agonysing symptoms of the WD.

Svetla

@Pokey449 I think you are right, no need to get off the drugs completely if you can get stable on a set dose whatever that might be.

As always it's just one day at a time, the future is uncertain for all of us even outside of WD, the world would be happier if we stopped fixating on what may or may not happen one day and instead just focused on the day in hand. WD teaches us this.

Glad you can see your sleep is improving, this is great news mate.

Hi @Chippy i guess like many of us here I get a ray of hope that one is finally stabilizing, that my sleep is smoothing out, that I’m going start feeling better on a more regular basis, that I’m going to stabilize & be ok & then BAM!!! Hammered again!! Last night was a really s****y night again. Waking up multiple times my whole body aching & with that creepy crawly claustrophobic sickening feeling. Cortisol spikes I guess??? 7 hrs one night, 3 broken hours last night. Today was to be an exercise day but I am doubting that will happen. I’m really very sick n tired of this. It’s Impossible to make any plans for the future. Im losing hope I’m ever going to be able to travel to be with my family 😢Yesterday I could have tolerated air travel. Impossible today!! And I don’t want to be at my daughters going in & out of this misery. It’s truly a Jekyll & Hyde existence taking me back to some very dark thoughts. 😩😢

@Chippy ive gained extra weight since being put on the doxepin 18months. Weight I don’t need or want. I think mid feel & sleep better if I lost 20-30lbs. I can’t exercise hard enough at my age. I’m researching taking a GLP 1 to help me achieve that but I don’t know if that would adversely impact my taper/WD. My research has indicated no negative drug reactions with a GLP1 & what I’m currently taking. I have yet to talk with my doctor. In the meantime I wanted to know your thoughts or if there’s any information here from others I could access? Thanks.

30 minutes ago, Pokey449 said:

In the meantime I wanted to know your thoughts or if there’s any information here from others I could access?

I would discourage using any pharmaceutical drug generally with withdrawal, it's best to lose weight via diet and lifestyle change, drugs can cause harm even when not in WD and your chances are way higher when you are in WD.

Even if you had no bad interaction, and the drug helped you lose weight, there is a decent chance you would gain the weight back when stopping the GLP1 drug.

that's just my opinion.

Yes I’m hesitant to add another drug to the mix. I’m already on mirtazapine, my BP med & a blood thinner, both of which I don’t think are a problem. Can’t stop them anyway. I’m watching my diet. In fact this WD misery suppresses my appetite. But I can’t exercise enough to have much affect. I’m to damned tired much of the time to exercise.

2 hours ago, Pokey449 said:

gained extra weight since being put on the doxepin 18months

@Pokey449 . I gain over 50 pounds while on this drug. I am already loosing slowly as my appetite comes to normal. I think I already lost 20 pounds. I will not take any drug to loose weight. Small walks on a daily basis, and change of diet....

I don’t know what’s happening today. I took my daily dose 2.5 hrs ago at my scheduled time of 12 noon. Tried to take a nap this afternoon but had to get up as i started feeing unwell & agitated.

I wait at least 45 minutes-hour before eating lunch so as to not interfere with absorption of the doxepin although AI says you can take it with food. So hopefully that’s not an issue.

Also I continue to wonder about a possible ADR between the doxepin & mirtazapine. Two drugs not commonly combined. I hope that’s not the case and I’m just straggling with garden variety WD to stabilize like many here.