I slept a little better last night and feel a little better today. I remain skeptical it will continue but will cross my fingers. At least I feel well enough to go to the health club this afternoon to get some much needed exercise. So 🤞🤞🤞🤞

39 minutes ago, Pokey449 said:

I slept a little better last night and feel a little better today. I remain skeptical it will continue but will cross my fingers. At least I feel well enough to go to the health club this afternoon to get some much needed exercise. So 🤞🤞🤞🤞

Hey great stuff Pokey so pleased mate. Take each day as it comes bud. 

Pokey that is so lovely to hear. We know you have been suffering so much. 

Thanks @Chippy & @Sminismoni I just got back from my health club where I put in 2.25 miles on the treadmill @ 3mph. I feel so much better when I can do that & benefit from it’s after affects. I was very active as a younger fellow.  Laying around in misery is not my style but honestly that’s all I’m capable of some days. 🤞the updose that Horowitz advised has finally kicked in and I’ll get some stability.  

Hi @Pokey449-

i’ve read through some of your posts and I was happy to see that you are feeling better! 
 

Do you mind telling me how long you had to wait to see Mark Horowitz? 
 

I’ve just sent a message to him and I hope to hear back soon via email

@Finni He responded pretty quick an email I sent. But to get any meaningful information from him I had to sign up for one of his Zoom appointments. He seems to be scheduled out a couple weeks. Do you have access to that link to schedule a Zoom with him. I think I can find it and send it to you. Just so you know he ain’t cheap. $275 for 25minutes. Not sure what that  is in pounds if you are in the UK 

7 hours ago, Pokey449 said:

@Finni He responded pretty quick an email I sent. But to get any meaningful information from him I had to sign up for one of his Zoom appointments. He seems to be scheduled out a couple weeks. Do you have access to that link to schedule a Zoom with him. I think I can find it and send it to you. Just so you know he ain’t cheap. $275 for 25minutes. Not sure what that  is in pounds if you are in the UK 

I don’t have access to that link to schedule a Zoom with him. All I could find was a form where I gave my email address and was able to type a small message.
I haven’t had a response yet, but it’s still early.

If you find the link, I would love to have that.

thank you ❤️
I’m in the US 

Edited March 2Mar 2 by Finni

12 minutes ago, Finni said:

I don’t have access to that link to schedule a Zoom with him. All I could find was a form where I gave my email address and was able to type a small message.
I haven’t had a response yet, but it’s still early.

If you find the link, I would love to have that.

thank you ❤️

I’ll send you it now @Finni

Just now, Chippy said:

I’ll send you it now @Finni

Thanks so much 

@Chippy thanks for sending Horowitz’s scheduling link to @Finni

@Pokey449Sending you one of those big fat hugs...we all need them. ❤️🙏

Hope today is better for you.

Hey Pokey, I saw our posting from a week ago. What type of horn did you play? I think it is great that you have music to lean on even if you are out of the orchestra for now. You can go back for sure once things stabllze. Singing makes my heart open and ease up especially when anxiety hits, so I understand the importance of the hobby or profession for some.

Glad you are able to exercise...that is also a good antidote to all of this. Blessings my friend 🤗

@namastejen1 I play a French horn. Played one since freshman in high school. I’ve only played in community groups, but really enjoyed doing so. When I lived in Oregon I helped form a community orchestra and was president of the board for 5 years. I really miss being part of something like that. 

Last night was awful. Awakened at  230. that was it for the night sleep wise. The anxiety and Akathisia was a horror show. The past couple days I thought I was getting stabilized but I guess not. I’m not doing well with my CPAP either. I’m having shortness of breath & not sure what’s going on there.  Wondering if WD is aggravating that. 
I’m starting to think I’ll never get stabilized as I fear what I have going on is not fixable. I am more inclined to think I’m having an ADR between the mirtazapine & doxepin. The lower on the doxepin i go the worse it will get. That the 2 drugs together are interacting in a way that is unknown to my doctors or even Horowitz???I’m worried I’m in a no man’s land where none have ventured before. I’m in fear that I’m headed for a gut wrenching horrific death……..…these are the kinds of thoughts that go through my head while laying in the dark fidgeting in misery at 3am. I get some daylight,some relief and then BAM!!! The misery returns. The will to carry on is getting harder to maintain. 

Hey Pokey

 

Sorry you had a bad night mate. It’s great you had a good couple of nights though. Stabilisation can take much longer than the little while you’ve been holding without changes. It’s very common to have windows and waves and fluctuating symptoms during this period. 
 

I know when you are having a bad day you default back to worrying about adverse reactions and other things and when things are good you feel more confident it’s going to get better. This is normal mate. Try to no tlisten to the wave brain. It gets us all!

 

Chippy

@Pokey449

The wave brain is so convincing! 
Hang on to those windows ✨✨

@Chippy I don’t understand why I can have a pretty good day and then the next feel absolutely awful 😢 I feel terrible today. I understand some swinging back n forth but can the swings be that profound?  Hard to plan a life if that’s the case. I was going to the health club today for some exercise. But I shouldn’t even be driving the way I feel & with so little sleep. Going to be a day living on my recliner 🫩

28 minutes ago, Pokey449 said:

@Chippy I don’t understand why I can have a pretty good day and then the next feel absolutely awful 😢 I feel terrible today. I understand some swinging back n forth but can the swings be that profound?  Hard to plan a life if that’s the case. I was going to the health club today for some exercise. But I shouldn’t even be driving the way I feel & with so little sleep. Going to be a day living on my recliner 🫩

I know mate. The swings are often like this. I know it seems unbelievable as in normal life you get progressively better in a linear way right. But the nervous system just doesn’t heal like it. We just have to accept whatever happens and be ok with it. I know that sounds a crazy thing to say but there is so much to that concept. Radical acceptance. I’ll feel how I feel and I can’t control it. Good or bad it is what it is and I won’t fight it. Just buying time to heal mate. That’s the key to all of this. Distract, accept get through the day. We all get it and we are with you in it. 

I also wonder about dosing times. I take 1/2,@8am and the 2nd 1/2 at noon. Those two times are when or near the times I eat breakfast  & lunch. Wondering if food in my stomach is affecting absorption of the drug

6 hours ago, Pokey449 said:

I also wonder about dosing times. I take 1/2,@8am and the 2nd 1/2 at noon. Those two times are when or near the times I eat breakfast  & lunch. Wondering if food in my stomach is affecting absorption of the drug

Guess not. Everything i read indicates food does not have negative affect on dosing times of doxepin. 

6 hours ago, Pokey449 said:

Guess not. Everything i read indicates food does not have negative affect on dosing times of doxepin. 

Also if it’s what you always do absorption is consistent so shouldn’t impact you imo. If you moved meals around and certain days you had an empty stomach with a dose and certain days you didn’t perhaps, but if it’s always the same then I think it’s not a factor myself.

@Chippy I take my doxepin 1/2 dose at 8am and the 2nd 1/2 at noon. I’m wondering if I moved my 8am dose slowly towards noon so I’m taking a full dose then, would it help me any with sleep. My worst time is in the middle of the night. Waking in the wee hours. That’s when I feel awful: Restless, nauseous, pain, sob . I literally feel SICK!! Can’t lay still. Up & down outta bed. It’s F’ing miserable!!! Splitting the dose 1/2&1/2 so far has been of no benefit. Thoughts??

1 hour ago, Pokey449 said:

@Chippy I take my doxepin 1/2 dose at 8am and the 2nd 1/2 at noon. I’m wondering if I moved my 8am dose slowly towards noon so I’m taking a full dose then, would it help me any with sleep. My worst time is in the middle of the night. Waking in the wee hours. That’s when I feel awful: Restless, nauseous, pain, sob . I literally feel SICK!! Can’t lay still. Up & down outta bed. It’s F’ing miserable!!! Splitting the dose 1/2&1/2 so far has been of no benefit. Thoughts??

Hey mate. My thoughts are there are no quick fixes. I think you’ve suffered way too many changes and this is part of the problem you have. The brain needs some stability so it can recalibrate, further changes up set this process. 
 

I know it seems terrible to have to say but we must work on not fighting the symptoms and just, as awful as they are, accept them. Some days will be better and many will not. But over time I believe the body will adapt and things will be easier. Holding doesn’t give you instant changes the benefits can take some time.

 

Have you read these posts?

 

 

Acceptance is key

 

Sleep in WD
 

@Raymond is on a long hold and has done a lot of research on the subject. Perhaps he might share his thoughts with you?

Well another night of broken crappy sleep with multiple wake ups. I feel very unwell this morning. I’m increasingly convinced it’s not just due to garden variety everyday withdrawal. I’m having breathing issues.  Besides messing up my CPAP therapy I wake up short of breath, have to take off my cpap mask, often with headache & restlessness. When I check my SPO2 it fluctuates but is often below 95% which is not good. When I get up I’m stiff, in a stupor, groggy & unsteady on my feet, feel rotten. Scary!!!!   I think I’m having episodes of hypoxia or hypoxemia-low O2 in blood or bodily tissues 
A couple weeks ago when I met with Horowitz I asked if the combination of being on mirtazapine & doxepin could affect respiratory drive-how my brain controls my breathing. He said no, but today I’m not convinced that’s 100% true. I can look back a bit and see I was having the beginning of these symptoms a few months ago and that they’ve been getting progressively worse with time. Something is going on besides WD. 
The other possibility is the drug combination is affecting my heart. I have a leaky mitral valve with regurgitation. If the meds are making that condition worse that could be why I’m waking short of breath etc. I’ve shared all this with my cardiologist and he’s going to run some blood tests and do a repeat echocardiogram.  
I was really scared at 4am this morning. I thought about calling EMS. Whatever is happening I know for sure it’s not just WD alone. Hoping to find some answers soon so I can regain the benefit of my CPAP, at least be able to sleep better, not worrying about dying in my sleep and feel a little better while tapering off this poison. 🤞🤞

Hey mate

 

Im so sorry youre having a hard time still 😞 

 

If you think you are suffering with other medical issues is very wise to get checked out! Better safe than sorry.

 

Hope you feel better as the days goes on, and get a better sleep tonight.

 

Chippy