Dejavu: can anyone tell me what's going on?

[RandyJames]

On ‎4‎/‎14‎/‎2019 at 4:32 PM, Dejavu said:

Hey @RandyJames, thanks for checking on me. Unfortunately, the window only stayed open a few hours, I didn't sleep well (weird dreams), and the dizziness and visual problems were pretty intense this morning. But I just got back from a family gathering I was dreading, not because I don't love my family but because it's so hard for me to leave my bedroom and do normal things with normal people. Also, it was very emotionally charged - it was a birthday party for my beloved Uncle who is dying of cancer.  It was tough at first - lots of dizziness, DP, brain fog, visual disturbance, bladder pain (hard to sit for long) and of course anxiety. But as the time wore on and I was able to contribute to conversations, I started to relax and feel a little better. I was able to remember that this was my tribe and I was safe. By the time we left, the DP, dizziness and visual distortions were almost gone. So I'm going to call this a little window as well. Window Lite, maybe? Certainly not full blown - still a lot of anxiety and bladder discomfort, but progress nonetheless. I'm gonna go ahead and take it. I plan to relax for the rest of the day and evening.

 

How are you faring today?

I'm sorry to hear your window didn't last and I'm so sorry that your uncle is so ill.  It's hard to see loved ones in a bad way.  It's good that you were able to get together with him and your family though.  I get what you mean by dreading seeing people and getting out.  It feels very weird and uncomfortable.  I haven't been doing much but I took my family to play miniature golf a couple weeks ago and it was such a weird experience.  So much noise and large spaces.  Its really hard to interact with people and doing something that should be fun and relaxing with your family when you can't even feel like you are present in the same dimension is really hard.

 

Can I ask what kind of visual distortions you are experiencing?  Do you feel they are connected to the dizziness?  Also, do you have really stiff shoulders and neck? 

 

I have dizziness, not spinning sensations but a discombobulated sort of feeling.  The visual problems I have are like as I look around it feels like my eyes don't seem to settle on things.  It's hard to explain.  Also when I move my head around and look at things it can really make the dizzy feeling worse.  I also have really stiff shoulders and neck along with tense facial muscles and have been wondering if it could be connected.  My shoulders are as tight as a drum and I can not relax them for anything. The top of my neck at the base of my skull is super tense and sore and it feels to me like this area could be really contributing to the dizziness.  I've been thinking of trying botox injections in my scalenes and shoulders to see if it helps.  I've tried hot baths and showers and walking a lot but it doesn't help.  

 

The move is done.  We are fully settled in the apartment. It was along day yesterday and I thought I may sleep some better last night but I slept terribly, maybe like 4 hours. 

 

I'm going to start my taper very soon.  I need to cross over to the liquid, tonight or tomorrow, and if that goes well I'm starting the 10% taper plan.  I wish I could drop faster in the beginning, like from 20 to 15mg.  This is going to take forever.  I wont risk it though.  

 

I hope you are having a good day.  

[Dejavu]

2 hours ago, RandyJames said:

I have dizziness, not spinning sensations but a discombobulated sort of feeling.  The visual problems I have are like as I look around it feels like my eyes don't seem to settle on things.  It's hard to explain.  Also when I move my head around and look at things it can really make the dizzy feeling worse

This is a very good description of what I'm seeing too. The dizziness and visual problems are definitely associated - never one without the other. Also sometimes things look almost too focused or too sharp, and at times things look slanted or tilted. 

 

I have ridiculously tight muscles everywhere, worst of all in my thighs. But this symptom has been steadily easing up over the past week or so. Have you tried magnesium spray and/or epsom salts baths? Both give me a great deal of relief. 

 

I know you must be so relieved to get the move done. I'm not surprised you didn't sleep well. All the stress plus sleeping in a new place probably kept your CNS on high alert. Have you tried melatonin? I take 2mg every night and I sleep pretty well - 7-8 hours on average. 

 

My switch to liquid didn't seem to affect me much, but then again it was done months ago when I was very symptomatic, so I'm not sure I would have noticed any difference. But many people mention that it acts like any other dose adjustment for them, so I urge you to take it nice and slow.

 

I am concerned about your starting to taper while you are still unstable. Are you doing that because you suspect you're in tolerance WD? I reinstated in November but couldn't stop monkeying with my dose, so I never stabilized. I've been sitting still on the same dose for a month now and am starting to see modest improvement. I plan to hold for several more months. Do you thinking holding a little longer might benefit you?

[RandyJames]

3 hours ago, Dejavu said:

 Also sometimes things look almost too focused or too sharp, and at times things look slanted or tilted. 

 

 Have you tried magnesium spray and/or epsom salts baths? Both give me a great deal of relief. 

 

 Have you tried melatonin? I take 2mg every night and I sleep pretty well - 7-8 hours on average. 

 

My switch to liquid didn't seem to affect me much, but then again it was done months ago when I was very symptomatic, so I'm not sure I would have noticed any difference. But many people mention that it acts like any other dose adjustment for them, so I urge you to take it nice and slow.

 

I am concerned about your starting to taper while you are still unstable. Are you doing that because you suspect you're in tolerance WD? I reinstated in November but couldn't stop monkeying with my dose, so I never stabilized. I've been sitting still on the same dose for a month now and am starting to see modest improvement. I plan to hold for several more months. Do you thinking holding a little longer might benefit you?

When you mention things looking to sharp or focused I had a similar issue a few hours ago.  The apartments have a pool table and I played a couple games with my son and I was noticing how uncomfortably colorful the solids balls were.  Also all of the leaning forward to shoot the ball was really exacerbating the discombobulated feeling I have and bothering my neck.  I'm sorry to hear you have the rigid muscles also.  

 

I've tried magnesium citrate, not a spray.  What I took didn't seem to help any. Is the spray better? I also took calcium with the magnesium as I read it helps it work but still nothing.  

 

I've been taking melatonin starting with 1mg liquid drops and then 3mg quick dissolve tablets.  They seemed to work some nights early in but now aren't really working.  

 

I was thinking earlier that I probably am going to buy a mg scale and just crush my tablets as that way I wont have to worry about how the liquid might negatively effect me if at all.  I wont have to slowly introduce liquid to tablets either.  

 

Thanks for worrying about me starting the taper process.  The thing is though that I don't think stabilizing is even a possibility as I began having my symptoms while never deviating from my normal 20 mg dose.  I briefly went up to 30 mgs in march to see if that could help me feel better but it made things worse and Alto suggested I drop back to 20.  I'm 99% sure that if I try and sit at 20mgs until I feel better I will  be at 20mgs for the rest of my life.  When I started feeling off in January I was convinced it was tolerance WD but I'm becoming more worried it's more of a case of damage caused by the meds.  The only way to see if it can be reversed is to get off of them.  Alto had not wanted me to start tapering because we were going to be at the apartment for 3 months and then move again so if I had a bad reaction to tapering it would not be good timing, but we are going to be here for at least a year now.  I just can't wait any longer.  I'm in a pretty dark place and a lot of my fear and frustration is coming from knowing the pills are making me sick and that every night I pop another one.  It's like knowing your water supply is poison but you just keep filling your glass.

 

 

 

[Dejavu]

@RandyJames, yeah, that's what I figured. You may well turn out to be one of those folks who feels better the lower you go. That's what happened to me with my klonopin taper. I was so messed up on klonopin; I never felt well. Within the first three or four cuts, I was pleasantly surprised/constantly waiting for other shoe to drop. It never did, though. I would make a cut, and for days 5-9, I would feel shaky and achy, but nothing I couldn't deal with. But after that passed, I would hit a higher baseline of improvement each time. When I jumped, I had almost no acute - very mild and very short. And no protracted at all.  Maybe this will be the case for you too. 

 

And don't worry about permanent damage. You will recover. The brain has amazing neuroplastic ability. I'm amazed you were able to lean over a pool table. If I did that right now, I'd end up on the floor!

 

Re: magnesium, for muscle issues, I think the spray and epsom salts baths work quicker and more effectively than the pills. At least for me. But I also use mag for anxiety and sleeping, so I take 100mg of mag glycinate 4x a day as well.

 

I'm in your corner, friend. Please feel free to reach out when you need reassurance and support.

[RandyJames]

12 hours ago, Dejavu said:

Re: magnesium, for muscle issues, I think the spray and epsom salts baths work quicker and more effectively than the pills. At least for me. But I also use mag for anxiety and sleeping, so I take 100mg of mag glycinate 4x a day as well.

 

I'm in your corner, friend. Please feel free to reach out when you need reassurance and support.

 

I'll try the Epson salts tonight.  Thanks for all of the support.  I really appreciate it so much.  I sure hope I turn out to be one that feels better as I lower.  In the past I have only ever came off of them cold turkey and that sure didn't feel good.  Hopefully a slow process will not only be easier on me but actually improve some things as I go.  

 

I hope your day is going well and thanks again for being so supportive!

[Vonnegutjunky]

On 4/16/2019 at 10:01 PM, RandyJames said:

When you mention things looking to sharp or focused I had a similar issue a few hours ago.  The apartments have a pool table and I played a couple games with my son and I was noticing how uncomfortably colorful the solids balls were.  Also all of the leaning forward to shoot the ball was really exacerbating the discombobulated feeling I have and bothering my neck.  I'm sorry to hear you have the rigid muscles also.  

 

I've tried magnesium citrate, not a spray.  What I took didn't seem to help any. Is the spray better? I also took calcium with the magnesium as I read it helps it work but still nothing.  

 

I've been taking melatonin starting with 1mg liquid drops and then 3mg quick dissolve tablets.  They seemed to work some nights early in but now aren't really working.  

 

I was thinking earlier that I probably am going to buy a mg scale and just crush my tablets as that way I wont have to worry about how the liquid might negatively effect me if at all.  I wont have to slowly introduce liquid to tablets either.  

 

Thanks for worrying about me starting the taper process.  The thing is though that I don't think stabilizing is even a possibility as I began having my symptoms while never deviating from my normal 20 mg dose.  I briefly went up to 30 mgs in march to see if that could help me feel better but it made things worse and Alto suggested I drop back to 20.  I'm 99% sure that if I try and sit at 20mgs until I feel better I will  be at 20mgs for the rest of my life.  When I started feeling off in January I was convinced it was tolerance WD but I'm becoming more worried it's more of a case of damage caused by the meds.  The only way to see if it can be reversed is to get off of them.  Alto had not wanted me to start tapering because we were going to be at the apartment for 3 months and then move again so if I had a bad reaction to tapering it would not be good timing, but we are going to be here for at least a year now.  I just can't wait any longer.  I'm in a pretty dark place and a lot of my fear and frustration is coming from knowing the pills are making me sick and that every night I pop another one.  It's like knowing your water supply is poison but you just keep filling your glass.

 

 

 

I am in the same position as you randy - 

 

except my dosages were 10mg for my maintenance dose and then 20mg after a too fast taper 

20mg made me feel so bizarre like I was tripping on acid - 

 

from 20 back down to 10 I felt so much better with each drop- I felt good until 6.8mg .... I was even doing ok at 6.8mg but I started hrt and when that caused problems and I stopped it, things got bad - so back up to 7.3 I went - that was in February of this year - holding and hoping now because the med isn’t working and I am feeling more and more crazy - I just hope I get some relief - I am petrified I will be like this forever - I see so many people suffering years and years after their taper - that is the worst part of all of this, just not knowing. 

[composter]

Quick word to @RandyJames and @Dejavu, I know y'all are occupied just managing your day to day and may not have time for extra treatments, but I'd like to make a suggestion. I read through your descriptions of dizziness, visual disturbances, and neck/muscle stiffness and I think you would benefit from a specialized physical therapy called vestibular-ocular therapy.

 

Nowadays PTs can receive further training in vestibular rehabilitation that can help with folks with neurological issues including concussion management. I worked with a PT as I was going through chronic post-concussive issues including dizziness and neck stiffness and she gave me some very simple but subtle eye exercises that retrained my vestibular-ocular system and relieved a lot of my issues. This is a non-drug and functional approach to repairing a system that can be thrown off by this process.

 

If you're interested you can call local PT offices to see if they offer vestibular or concussion rehab, or search online directories for concussion rehab. I had a lot of success with it and I highly recommend it!

[RandyJames]

12 hours ago, Vonnegutjunky said:

I am in the same position as you randy - 

 

except my dosages were 10mg for my maintenance dose and then 20mg after a too fast taper 

20mg made me feel so bizarre like I was tripping on acid - 

 

from 20 back down to 10 I felt so much better with each drop- I felt good until 6.8mg .... I was even doing ok at 6.8mg but I started hrt and when that caused problems and I stopped it, things got bad - so back up to 7.3 I went - that was in February of this year - holding and hoping now because the med isn’t working and I am feeling more and more crazy - I just hope I get some relief - I am petrified I will be like this forever - I see so many people suffering years and years after their taper - that is the worst part of all of this, just not knowing. 

Not knowing is terrible.  I can't stand the thought of being this way, or worse if my taper goes badly, forever.  I've been scared that as I first start the taper I'll start feeling a bit better for awhile and get my hopes up, and then at some point it will turn around on me and I'll be crushed.  

 

I hope you feel better.  

[RandyJames]

24 minutes ago, composter said:

Quick word to @RandyJames and @Dejavu, I know y'all are occupied just managing your day to day and may not have time for extra treatments, but I'd like to make a suggestion. I read through your descriptions of dizziness, visual disturbances, and neck/muscle stiffness and I think you would benefit from a specialized physical therapy called vestibular-ocular therapy.

 

Nowadays PTs can receive further training in vestibular rehabilitation that can help with folks with neurological issues including concussion management. I worked with a PT as I was going through chronic post-concussive issues including dizziness and neck stiffness and she gave me some very simple but subtle eye exercises that retrained my vestibular-ocular system and relieved a lot of my issues. This is a non-drug and functional approach to repairing a system that can be thrown off by this process.

 

If you're interested you can call local PT offices to see if they offer vestibular or concussion rehab, or search online directories for concussion rehab. I had a lot of success with it and I highly recommend it!

Thank you so much for the suggestion.  I really appreciate you taking the time to suggest this.  I'll definitely look into this.  I've been thinking about trying out some pt for the muscle stiffness so I'll try and find someone who also does the vestibular rehab.

 

Thanks again and I hope you are doing well.

[composter]

Of course @RandyJames. Glad to be of service. It's always nice to have another tool in the toolkit to turn to. Keep us posted on how things go with that.

 

If you happen to live in SoCal I can give you information on two places I know of that do vestibular rehab (one is a PT in Pasadena, the other is a chiropractor in Santa Barbara and Beverly Hills). But it shouldn't be too difficult find someone local to you.

[Dejavu]

Update:

 

Its been an up and down week for me. Sleep is pretty good. People tell me I'm doing better, but I don't really see it. Lots of symptoms come and go - not a big deal. Biggest problems are fatigue, anxiety anytime anything is expected of me (work, family obligations, etc), and the biggest thing is the dizzy, swimmy headed feeling and the visual distortion that comes with it. If it wasn't for that, I think I would be fairly functional, but the dizziness is petrifying to me. 5.5 months since reinstatement; 1.5 months since I stopped fooling with my dose.  Will my head ever stop spinning?? 

[Rbvdk]

@Dejavu I found your post when I searched PGAD. I hope you're doing well, I relate a lot to your posts (I haven't read all of them so sorry if I get something wrong) and I also get dizziness, fatigue etc although nothing bothers me as much as the pgad. You're so incredibly strong and you will get through this, 2 years does seem like a lot but it's surprising how fast it can go, this year went so quickly for me that I'm no longer thinking "Ugh I have another year until I see progress etc" despite waves. I don't remember who said it on this thread but it's true that most people do heal eventually within a few years. And that we don't know 100% about these people who have had symptoms long-term/years and years. They could have so many other conditions, medications, causes/weaknesses, injuries etc that they don't talk about (maybe because they think it's irrelevant and don't see the link). But in most circumstances people DO heal.:)

[RandyJames]

7 hours ago, Rbvdk said:

And that we don't know 100% about these people who have had symptoms long-term/years and years. They could have so many other conditions, medications, causes/weaknesses, injuries etc that they don't talk about (maybe because they think it's irrelevant and don't see the link). But in most circumstances people DO heal.:)

This is another thing I'm worried about.  I get scared that there could be something wrong with me that is causing my symptoms and not the meds.  What if I get all the way off the meds and still don't feel better because the cause is some kind of weird illness.  When I was in my first WD I read so much about things like Lyme Disease, Candida overgrowth, CFS and other things.  These conditions are so vague and have so many symptoms that are just like those from the meds and WD.  It's all so scary.  

[RandyJames]

13 hours ago, Dejavu said:

Update:

 

Its been an up and down week for me. Sleep is pretty good. People tell me I'm doing better, but I don't really see it. Lots of symptoms come and go - not a big deal. Biggest problems are fatigue, anxiety anytime anything is expected of me (work, family obligations, etc), and the biggest thing is the dizzy, swimmy headed feeling and the visual distortion that comes with it. If it wasn't for that, I think I would be fairly functional, but the dizziness is petrifying to me. 5.5 months since reinstatement; 1.5 months since I stopped fooling with my dose.  Will my head ever stop spinning?? 

Sorry your weeks been so bumpy.  I'm glad you are sleeping well though.  It's frustrating when people think you are doing better when you aren't.  I'll have periods where I am complaining less just because I'm so tired of complaining and my wife will think I'm doing better.  I hope your dizziness gets better soon.  It sounds like you have it really bad.  Aside from the general dizziness, do you get light headed when you stand up at all?  

[Dejavu]

1 hour ago, RandyJames said:

Aside from the general dizziness, do you get light headed when you stand up at all?  

Yes, often. I don't understand why its taking me so long to stabilize. I'm really getting scared.

[Tom37]

You know why it has taken this long...all those changes. Just sit tight and things will improve. May take a lot longer than you want but what choice do you have? Then when you start feeling a lot better you will wonder why you worried so much about it all. You don’t actually have a choice in getting better because as long as your breathing your healing.

[Rbvdk]

21 hours ago, RandyJames said:

This is another thing I'm worried about.  I get scared that there could be something wrong with me that is causing my symptoms and not the meds.  What if I get all the way off the meds and still don't feel better because the cause is some kind of weird illness.  When I was in my first WD I read so much about things like Lyme Disease, Candida overgrowth, CFS and other things.  These conditions are so vague and have so many symptoms that are just like those from the meds and WD.  It's all so scary.  

I worry about this too :( 

[Dejavu]

@Tom37, thank you for the pep talk.  I really need that reassurance right now. Seriously - I wondered if I would sleep last night, but then I got your message and was actually able to calm down and slept for 7 hours - I am very grateful to you. 

 

Going through a very umpleasant wave atm. Lots of external grief and stress don't help. Today is my birthday. It's also the first year of my life that I haven't gotten a call from my Mom at 11:21am (the time I was born). Yesterday was Easter. A year ago she was here at my house, feeling well, eating well, playing with the grandkids and looking forward to getting better. One year later, she's gone and I am nothing but physical and mental wreckage. She was a phenomenal person - my Mother and my very best friend. Everyone who knew her loved her. The fact that I'm going through this WD is very hard. That I'm going through it without her is torturous. 

 

Again, thank you so very much for your timely support. Are you continuing to see stabilization? I sure hope so!

[Dejavu]

2 hours ago, Rbvdk said:

On 4/21/2019 at 12:16 PM, RandyJames said:

This is another thing I'm worried about.  I get scared that there could be something wrong with me that is causing my symptoms and not the meds.  What if I get all the way off the meds and still don't feel better because the cause is some kind of weird illness.  When I was in my first WD I read so much about things like Lyme Disease, Candida overgrowth, CFS and other things.  These conditions are so vague and have so many symptoms that are just like those from the meds and WD.  It's all so scary.  

I worry about this too 

Even though Ive suffered with some health anxiety in the past, I don't worry about this anymore. I think the shift in my thinking is due to one very important experience:  the only good thing about my fast taper was the one month of peace I got before WD hit. I felt fantastic - tons of energy I never realized I had gradually lost, weight loss, the shakiness in my legs and hands was gone, and just a general sense of well-being. I even commented to my husband that, even though I was still grieving my mom and sister, the grief felt proportional and not the usual sense of complete and utter despair I'd been having. Of course, when withdrawal hit things changed immediately, but I remember how good I felt for that one month, and I know that's what my life will be again some day if I can somehow make it through this. I was given a glimpse of what life will be like on the other side of this. Its just the making it through I worry about.

[RandyJames]

2 minutes ago, Dejavu said:

Even though Ive suffered with some health anxiety in the past, I don't worry about this anymore. I think the shift in my thinking is due to one very important experience:  the only good thing about my fast taper was the one month of peace I got before WD hit. I felt fantastic - tons of energy I never realized I had gradually lost, weight loss, the shakiness in my legs and hands was gone, and just a general sense of well-being. I even commented to my husband that, even though I was still grieving my mom and sister, the grief felt proportional and not the usual sense of complete and utter despair I'd been having. Of course, when withdrawal hit things changed immediately, but I remember how good I felt for that one month, and I know that's what my life will be again some day if I can somehow make it through this. I was given a glimpse of what life will be like on the other side of this. Its just the making it through I worry about.

You'll make it through.  It's just really scary and absolutely uncomfortable as can be.  I hope I don't sound like a hypocrite giving encouragement when I'm always worrying about the same things lol.  I think though that things will get better for all of us;  If not in a perfect way to a much more manageable degree.  I'm glad you had that period of wellness though it's to bad it was swept out from underneath you like this.  I think it really is a good sign that you responded well to 0 meds until your nervous system sensed they were gone.  You'll be there again in time.  

[FarmGirlWorks]

You got this, @Dejavu... we all do. It is just a long, stupid ride.

[Tom37]

No problem....just completely out of my wave and feeling better than I have so far and nearly symptom free so no issues functioning at all....I’m sure more waves will come but after each wave there seems to be definite clear improvement now so seem to be on the right track but with wd you never know.

 

One day at a time, you will get there.

[Dejavu]

Yesterday, a marked improvement in dizziness, visual distortion, anxiety, depression and fatigue. I actually got up early, went to client meetings, rode a ratchety garage elevator alone (even when I'm not in wd, I'm a bit of an elevator-phobe), and was even able to stop and chat with a colleague without white-knuckling it the entire time. When I got home, instead of lying down, I worked in my office for a further 2 hours. Later, I had a very productive therapy session, aided considerably by the fact that I could concentrate on my issues, rather than my symptoms. I'd say yesterday was a 50-60% improvement.

 

Today, a little more anxiety and PGAD/bladder pain is making itself known. But I still feel my baseline is overall improved. This is the most meaningful window I've had yet.  It's a game changer for me. Now that I've seen a little improvement, I know I will recover from this. Something is changing. I'll take it. 

 

It's been 5.5 months since my reinstatement, but only 1.5 months since I stopped monkeying with my dose. Now that I've stopped being my own worst enemy, it looks like stabilization may be on the way. Not there yet, but a lot more functional. I was 100% bedbound 3 months ago. Yesterday, I did things I never thought I'd be able to do again.

[Dejavu]

Well, rats...

 

Dizziness and lower mood is back now. Not surprised; just disappointed. But I have to remember that it really was better yesterday. Surely that means it will improve again. I'm so sad right now.

[composter]

That's amazing to hear of your window that allowed you to be so functional! Incredible how just those small simple things that others take for granted can be so meaningful to us after the hell of WD symptoms.

 

I think you're right that the improvement you felt is in large part due to your 1.5 month hold. Keep it up. When I reinstated it took about 5 months holding before the waves went away fully. So it definitely takes time. Patience and time are key with this. You've got this! I'm so encouraged to hear about your good day.

[Dejavu]

Thanks @composter, for the encouragement. It's crazy that I need constant reassurance, but I really do. I'm still rapidly cycling - yesterday was the best window I've had so far - for a couple of hours the dizziness and jumpy vision was almost entirely gone. I worked out in the field all day and felt much more on top of things. Last night I was actually making plans for the future - something I haven't dared to do in months. And then...today, back to dizziness, PGAD, anxiety and depression. It's more than disappointing. Its almost devastating. Its hard for me to believe yesterday really even happened. Maybe all the improvements were just my imagination. I keep thinking, "what if it never gets any better than this?" 

[RandyJames]

On ‎4‎/‎30‎/‎2019 at 1:03 PM, Dejavu said:

Thanks @composter, for the encouragement. It's crazy that I need constant reassurance, but I really do. I'm still rapidly cycling - yesterday was the best window I've had so far - for a couple of hours the dizziness and jumpy vision was almost entirely gone. I worked out in the field all day and felt much more on top of things. Last night I was actually making plans for the future - something I haven't dared to do in months. And then...today, back to dizziness, PGAD, anxiety and depression. It's more than disappointing. Its almost devastating. Its hard for me to believe yesterday really even happened. Maybe all the improvements were just my imagination. I keep thinking, "what if it never gets any better than this?" 

You'll get better than you're feeling now.  Your window is a total sign that you can heal and are healing.  It's really great that you were able to engage in some forward thinking, making plans and such.  Having had a more energetic day may have taken a lot out of you since you've been feeling so bad for so long.  You might wind up snapping back to feeling a little better after a couple of days and some rest.  

 

[Dejavu]

@RandyJames, thanks for propping my up. It's pathetic how often I seem to need reassurance these days. Today was tough - dizziness and full bladder sensation are both driving me nuts - but I went to work and pushed through. Had a giant meltdown on the way home. It seemed to help a little. I sure could use another window right now. 

 

I see you're getting a sleep study done. When will that be?

[RandyJames]

@DejavuSorry you had a hard day.  You have many more good days coming your way. 

 

I don't have a sleep study scheduled yet.  I'm going to ask my GP about having one done.  The weird movements I get in the night have me really concerned.  It seems to be worst when falling asleep and when laying in bed after waking up but I wake up in the middle of the night with my arms or legs lashing out or with my face grimacing really hard.  It's all weird.  The worst is still the cognitive issues.  I would deal with everything else if I could think clearly.  Yesterday was really bad with attention and memory.  It's not just annoying, it's terrifying to me. 

[Dejavu]

34 minutes ago, RandyJames said:

It seems to be worst when falling asleep and when laying in bed after waking up but I wake up in the middle of the night with my arms or legs lashing out or with my face grimacing really hard. 

I have some random muscle spasms and jerks, too. They're pretty strong when they happen, and like you, it's usually when I'm trying to go to sleep or just waking up. Not as severe as yours, but I have read other people's threads who are having it pretty bad, like you. I'm sorry you're going through that.

 

34 minutes ago, RandyJames said:

I would deal with everything else if I could think clearly. 

I'm right with you on this one. Sometimes, I'm trying to work and my mind just goes blank. I can't even remember what I'm supposed to be doing.

 

These are all common withdrawal symptoms. But if you have apnea, that definitely needs to be addressed. 

 

We just have to keep reminding ourselves - and each other - that this is temporary and will pass. I'm having a little trouble with that today myself. Still waiting for my window. 

[Dejavu]

Still in a wave. Anxiety and depression (mostly about withdrawal), full-bladder sensation, burning mouth, dizziness, odd vision and fatigue, and now another lovely gift...acne. my face looks like a pizza. I saw an old friend/colleague yesterday, and she didn't recognize me. I don't blame her - I don't even recognize myself. I look so sick, and my eyes look so dead and hopeless. It is heartbreaking. Even when I smile or laugh, it looks forced. But this is not going to beat me. Even if it kills me  I'm at least going to go down swinging.

 

I do have a question for the mods - @Altostrata @brassmonkey or anyone else "in the know" - I've always been concerned that I reinstated too high a dose (done before I found SA), which led to too much playing around with my dosage from Nov 2018 to Mar 2019. I've been sitting still on 26.25 mg since Mar 14 2019, and have had a couple of short windows in that time. I realize the conventional wisdom is to sit still and await stabilization, and that's what I'm inclined to continue to do. But I have a continuous nagging thought that won't leave me alone: is my high reinstatement dosage causing side effects that will prevent or delay stabilization? If so, is it wise to try a small cut (perhaps down to 25mg), even though I'm not stable, or is my impatient nature asserting itself again? I know that no one has a crystal ball and there are no guarantees, but any opinions and/or suggestions would be tremendously appreciated. As always, thank you so much.

[Altostrata]

Deja, holding since March 14 is only 6 weeks, that's not an excessively long time.

 

Over the last 3 weeks, have you seen any small improvements? Do your symptoms follow any daily pattern?

 

Yes, you made a bunch of drug switches that might have upset your nervous system. But we believe that if neuroplasticity can get you into this pickle, it can get you out. You just need to give it time to untangle itself.

 

What was your experience with fish oil?

[Tom37]

You have had windows of late so I would stay where I am. In my first few months I often questioned if doing nothing but holding was the right thing to do because it felt like I was going nowhere and that it would never end. Luckily I stayed where I was and good improvements have come like everyone said they would. I may be in a wave now but is to be expected I guess as not yet symptom free at baseline. 

 

Just remember your symptoms are there because your cns is unstable and sensitised and more changes could easily make it even worse and then it’s reset the stability clock again.

 

Time is the only thing that will get us through and when things are bad we just have to get through each day knowing better days do come. Just imagine how strong you will be once your through this....nothing with phase you!

[Dejavu]

@Altostrata, thank you for your response. I try not to tax the already-limited time of the mods unless I have legitimate questions. 

 

Yes, I have seen small, short windows in the past 3 weeks or so. I had a short one this evening, in fact, where the dizziness was minimal. It only lasted a few hours, and now dizziness is back with a vengeance. So far, the windows never last more than a few hours and the symptoms don't fully abate. But overall baseline seems slightly improved.

 

The only reason I am curious about a small reduction is because I'm almost positive the tremor and weakness I experience are side effects rather than wd.

 

My evidence for this is: I notice a significant uptick about an hour after I dose (10pm), it was worse when I was on a higher dose, and I had a honeymoon period of a month between fast taper and wd onset. During that time, the tremor and weakness vanished, then resumed on reinstatement. 

 

Even so, am I correct in assuming that if you were in my shoes, you would probably hold for a while longer? Maybe I should just look at the relief from the tremor and weakness as something to look forward to after I start my taper? 

 

As always, thanks for your help.

[Dejavu]

@Tom37, of course that makes sense. I'm just frustrated because I'm getting side effects from taking this rat poison as well as withdrawal from reducing it. But I realize I brought some of this on myself by "resetting the clock," as you say. I crashed 6 months ago. In that time, I've only had about 3-4 short windows, but all of those have come in the past few weeks since I've been sitting still on one dose. Looking at it that way, I guess changing anything right now would be ill advised. 

 

It really helps to be able to talk this out with people who understand what's going on. Thanks for helping me.

 

I hope your wave quickly recedes and tomorrow is a better day. Let me know how you're doing.

[Songbird]

6 hours ago, Dejavu said:

In that time, I've only had about 3-4 short windows, but all of those have come in the past few weeks since I've been sitting still on one dose. Looking at it that way, I guess changing anything right now would be ill advised. 

 

I think there's your answer.  I once had to wait six months to stabilise after a tiny dose drop - though not all drops were like that.  Stabilising takes time and patience.

 

It's also not only about the dose, it can also be related to what else is happening in your life.  Keeping your dose stable is the bare minimum.  It's also worth looking into what else you can do to keep your nervous system calm.  For example, reducing stress as much as possible, avoiding all stimulating substances (caffeine, alcohol, etc.), avoiding very stimulating activities such as strenuous exercise, avoiding scary movies/TV, and so on.  It may be in your best interests to make some lifestyle changes.  Think about it as being kind and gentle to your nervous system.