Z-Drug Support Group (Lunesta, Imovane, Zimovane, Ambien, Sonata, Zopiclone)

[[Ge...]]

Quote from: Getmysleepback on September 27, 2022, 04:04:06 pm

So this has been very difficult and I'm still very confused about what to do next. Today, for example, someone was supposed to come and change our thermostat and I ended up having to cancel the appointment and table it until next week because I wasn't feeling well (luckily, they were very understanding). Like I said on an earlier post, I was on 3 mg Eszopiclone at the beginning of the night and 10 mg Zaleplon in the middle of the night for about 4.5 years, took about 6 months to taper and have been off completely for ~13 months....  The only symptom I really have is bad chronic insomnia, although occasionally when I get very sleep deprived, I'll get headaches and dizziness although those are really not separate symptoms per se but consequences of lack of sleep.

 

        I am struggling to know what to do -- as in how much longer do I want to continue to wait for my sleep to get better before I contact the doctor again and embark on some sort of additional intervention.  I have literally had my life on hold for the last 6 years as I wasn't sleeping that well on the pills either. And part of the problem is because of the lack of sleep, my only real productive time (most days anyway) is the morning. After about lunchtime, my concentration, cognition and energy levels plummet to the point where I need to regularly lay down in the afternoons and usually the only productive things I can do in the afternoon/evenings is stuff that doesn't require any thought like food shopping, housework, laundry, dishes, etc.

 

        The problem also is that I have a lot of other things going on that are competing for that small amount of productive time per day --- including 2 other medical issues, one of which occurred fairly recently and may require surgery and extensive rehab as well as a legal dispute with a hospital that will require quite a few months to entangle in the near future. What I'm concerned about is that I'm 42 and I'm really concerned at this point that this long-running sleep issue (in addition to entangling myself from all this other BS which is actually piling up faster than I can deal with it BECAUSE OF the sleep issue ) will cost me my chance to have a biological child.  So for me it is really important that I don't spend time on additional sleep interventions that are unlikely to yield any results but it's also true that if this isn't going to go anywhere and it needs a "little push" to help stop this chronic early morning awakening pattern, that I do that at some point in the near future when it is convenient for me.>>

 

 

Hello Getmysleep sorry to hear of your troubles with sleep. Firstly it is highly common to have sleep issues after coming off sleep drugs. Those issues can last quite awhile for some people. But given some more time, it will resolve. If you go to the doctor to seek something to help, you perhaps should be very careful what intervention the doctor suggests. Many of them will offer benzos, antidepressants, psych meds, other sleep drugs, etc In taking those especially after you’ve already come off Zdrugs can cause a new kind of hell. They would also require you to taper them at some point once you hit tolerance on those too. Then you’ll perhaps have even worse insomnia. In my opinion I’d say try something over the counter - one thing at a time for a few nights to see if it helps. If you find something that does help then stick with it until you heal more. Morning sunlight about 15-20 minutes can help reset your circadian rhythm for bedtime sleepiness. Soothing music and a strict nighttime routine is ideal every night. Go to bed at the same time each night and get up at the same time every morning. This trains the brain when to enforce sleeping. Lights out or very dim an hour before bedtime. The idea is to be in a calm relaxed dark environment. This is CBT-I ( cognitive behavioral therapy for insomnia). It has worked very well for me. Some nights it takes me a bit longer to fall asleep than others because I have night waves. But I stick with my relaxation technique and fall asleep naturally without any assistance from any supplements, herbs or medications. After I’m very relaxed I put in my earplugs. Like you I’ve struggled to sleep most of my life starting in my teens. I wish to God the doctors would have tried CBTI with me before giving me Ambien ( zolpidem). It literally ruined my life for 4 years now. I’m 27 months free. For most people the CBTI takes awhile to cater it to your individual liking. It has to be given some time to be fully affective. But for some, like me, it worked almost immediately. The rule I have for myself is once I close my eyes I’m not allowed to open them even in the dark. Something you can cuddle is another soothing nighttime tool. Perhaps you can imagine holding your future new baby.

I’m not sure if insomnia is your only symptom left after 13 months. If it is I’d say you’re very fortunate. I had a friend on here named Shay that was on the same medication you had. Her insomnia was unreal as yours is and it lasted a long time. Currently she still struggles from time to time but her sleep is much better.  Please go through this thread and read her posts. She’s no longer active on this thread as she has healed much and living her life.

I wish you the best in having a child of your own. At 42 that will cause some stress in itself. Any woman at any age will when trying to have a baby. I hope to hear in the near future that you are expecting. How lovely it is to be a mommy. In a nutshell, the zdrug you were on is a known culprit of causing prolonged insomnia issues. Given more time they should improve naturally as the brain fine tunes things. Your other life stressors is perhaps making things worse. I believe meditating with soothing spa music might prove to be a useful tool to keep the stress down during the day. Maybe for 15 minutes take some time during the day in a cozy spot to do calm breathing. When I do it, I pretend I’m at a spa or on a beach if I use the beach waves music. I hope this was some help to you. Best wishes. 🤗>>>

 

 

Hi again.  First, thanks to everyone who took the time to answer my posts.... I know I take a while to respond, but that is because I have such little time that I am not cognitively impaired from a lack of sleep and I have so much to do during that small percentage of time, so this kind of naturally falls behind. But I do appreciate everyone who took the time to write to me and put in their two cents.

 

    With regard to the post above, you are right. It seems that all the doctors know how to do when someone comes in with a sleep problem is to prescribe some sort of a pill, whether that is a benzo/Zdrug/antidepressant/antihistamine/antipsychotic.  My current doctor has basically run out of ideas --- he sent me to an endocrinologist to take my thyroid, adrenals, etc., evaluated me for psychiatric issues that could be affecting my sleep, prior to getting off these pills I tried every other pill imaginable, I tried sleep restriction 5 times (including once for a period of 12 weeks when I was 3-6 months off the pills).......

 

    The only thing left that I didn't test for is apnea (however, I truly think that is unlikely as I have no other symptoms of it ... like waking up choking in the middle of the night). People on these boards have mixed opinions about CBT-I. A lot of people swear that it is useless against benzo withdrawal.  For my personal case, it doesn't seem to work (though I would have loved it if the sleep restriction did). From what I've read, it seems that even setting aside benzo/Z drug withdrawal, sleep restriction is not usually successful for early morning awakenings. It usually works better in cases where people's main problem is falling asleep, or where people wake up in the middle of the night, maybe are up for a couple hours, but are at least able to fall asleep afterwards.  The other part of CBT-I focuses on treating anxiety/arousal as you said, like the relaxation techniques.  I guess I may be the odd one out here on this forum, since most people who were originally put on Benzos probably were experiencing anxiety issues, and even a lot of people who have sleep issues probably do so because of anxiety (actually, the majority of them in fact)... but this really doesn't fit me.  Don't get me wrong, I'm frequently stressed because it is hard to get through a day on little sleep (specifically my concentration and cognitive skills are bad) and that is a stressor all on its own.  The only other thing in the background is my biological clock.  As a rule however, I don't go to bed stressed out or having anxious thoughts, nor do I have anxious thoughts when I wake up in the middle of the night or panic attacks, etc.    I'm generally relaxed when I wake up in the middle of the night ... therefore the stage is set for me to potentially fall back asleep, but I just don't.

 

        My current doctor and I (who I've had for a while now) are at an impasse in terms of moving forward if this sleep thing doesn't start to improve by itself soon. It seems all he wants to do is continue to recommend CBT-I techniques (like relaxation techniques, etc.) or prescribe another pill.  And I think it is less because he thinks that is the problem or that he thinks it will work (he is actually very perplexed by the severity and chronicity of my problem), but because he says that is the only tools he knows.

[[Ge...]]

 

Hi again.  First, thanks to everyone who took the time to answer my posts.... I know I take a while to respond, but that is because I have such little time that I am not cognitively impaired from a lack of sleep and I have so much to do during that small percentage of time, so this kind of naturally falls behind. But I do appreciate everyone who took the time to write to me and put in their two cents.

 

    With regard to the post above, you are right. It seems that all the doctors know how to do when someone comes in with a sleep problem is to prescribe some sort of a pill, whether that is a benzo/Zdrug/antidepressant/antihistamine/antipsychotic.  My current doctor has basically run out of ideas --- he sent me to an endocrinologist to take my thyroid, adrenals, etc., evaluated me for psychiatric issues that could be affecting my sleep, prior to getting off these pills I tried every other pill imaginable, I tried sleep restriction 5 times (including once for a period of 12 weeks when I was 3-6 months off the pills).......

 

    The only thing left that I didn't test for is apnea (however, I truly think that is unlikely as I have no other symptoms of it ... like waking up choking in the middle of the night). People on these boards have mixed opinions about CBT-I. A lot of people swear that it is useless against benzo withdrawal.  For my personal case, it doesn't seem to work (though I would have loved it if the sleep restriction did). From what I've read, it seems that even setting aside benzo/Z drug withdrawal, sleep restriction is not usually successful for early morning awakenings. It usually works better in cases where people's main problem is falling asleep, or where people wake up in the middle of the night, maybe are up for a couple hours, but are at least able to fall asleep afterwards.  The other part of CBT-I focuses on treating anxiety/arousal as you said, like the relaxation techniques.  I guess I may be the odd one out here on this forum, since most people who were originally put on Benzos probably were experiencing anxiety issues, and even a lot of people who have sleep issues probably do so because of anxiety (actually, the majority of them in fact)... but this really doesn't fit me.  Don't get me wrong, I'm frequently stressed because it is hard to get through a day on little sleep (specifically my concentration and cognitive skills are bad) and that is a stressor all on its own.  The only other thing in the background is my biological clock.  As a rule however, I don't go to bed stressed out or having anxious thoughts, nor do I have anxious thoughts when I wake up in the middle of the night or panic attacks, etc.    I'm generally relaxed when I wake up in the middle of the night ... therefore the stage is set for me to potentially fall back asleep, but I just don't.

 

        My current doctor and I (who I've had for a while now) are at an impasse in terms of moving forward if this sleep thing doesn't start to improve by itself soon. It seems all he wants to do is continue to recommend CBT-I techniques (like relaxation techniques, etc.) or prescribe another pill.  And I think it is less because he thinks that is the problem or that he thinks it will work (he is actually very perplexed by the severity and chronicity of my problem), but because he says that is the only tools he knows.>>>

 

To add to the above, my concern at this stage is the fact that I'm not seeing a lot of consistent improvement (and haven't since month 3 off the pills. I am now at month 14. Although it is a little hard to tell because as I stated, I was doing sleep restriction from month 3- month 6).    There are times when I feel like the sleep might be getting better, like recently, I had a period where I would sleep badly for 2 nights, then sleep almost a full night, then repeat.  But inevitably, it always go back to the same pattern as before. I can't even really classify these periods as windows and waves, I mean they might be but usually at least that implies, that the sleep would be, despite the bad periods, at least improving overall during the course of a long period of time if you were to graph your total amount of sleep over months. However, I don't really see that clearly with me over the last months, so it is also likely that this could just be normal variation in the insomnia.

 

      Outside of CBT-I and more prescription pills, the only other idea my doctor has is something really off beat. He wanted me to take 0.5mg of melatonin at around 6 AM.  The purpose of the melatonin was not to make me sleepy or fall asleep. The purpose was to try and trick my brain over time into sleeping longer, since it seemed to have gotten used to a pattern of early morning awakenings. Taking it in the early morning is trying to signal to the brain, hey you should be sleeping longer.  It is offbeat solution of course and I'm not sure it is likely to work.  I also was thinking of contacting some of his colleagues and seeing if they could come up with any offbeat ideas to get my sleep pattern back on track. Like I said in my 1st post, it is hard to know in my particular case whether the problem is with my GABA receptors still healing or whether the use of a sleeping pill in the middle of the night just messed up my sleep pattern and created a situation where I automatically wake up in the middle of the night.  If it is the latter, it may eventually require some intervention.

 

        However, not knowing what is going on with my receptors, I am not interested in trying another pill that would mess with my neurotransmitters. There seem little reason to do so anyway, because I have never taken any pill for sleep that has caused me to stay asleep for longer than 4-5 hours, which seems to be the core of my problem (most of them just knock you out to allow you to fall asleep). I also was putting off his melatonin idea for as long as possible, because even though melatonin is not a prescription drug, it still messes with your neurotransmitters.

 

 

[[Su...]]

Quote from: Getmysleepback on September 27, 2022, 04:04:06 pm

So this has been very difficult and I'm still very confused about what to do next. Today, for example, someone was supposed to come and change our thermostat and I ended up having to cancel the appointment and table it until next week because I wasn't feeling well (luckily, they were very understanding). Like I said on an earlier post, I was on 3 mg Eszopiclone at the beginning of the night and 10 mg Zaleplon in the middle of the night for about 4.5 years, took about 6 months to taper and have been off completely for ~13 months....  The only symptom I really have is bad chronic insomnia, although occasionally when I get very sleep deprived, I'll get headaches and dizziness although those are really not separate symptoms per se but consequences of lack of sleep.

 

        I am struggling to know what to do -- as in how much longer do I want to continue to wait for my sleep to get better before I contact the doctor again and embark on some sort of additional intervention.  I have literally had my life on hold for the last 6 years as I wasn't sleeping that well on the pills either. And part of the problem is because of the lack of sleep, my only real productive time (most days anyway) is the morning. After about lunchtime, my concentration, cognition and energy levels plummet to the point where I need to regularly lay down in the afternoons and usually the only productive things I can do in the afternoon/evenings is stuff that doesn't require any thought like food shopping, housework, laundry, dishes, etc.

 

        The problem also is that I have a lot of other things going on that are competing for that small amount of productive time per day --- including 2 other medical issues, one of which occurred fairly recently and may require surgery and extensive rehab as well as a legal dispute with a hospital that will require quite a few months to entangle in the near future. What I'm concerned about is that I'm 42 and I'm really concerned at this point that this long-running sleep issue (in addition to entangling myself from all this other BS which is actually piling up faster than I can deal with it BECAUSE OF the sleep issue ) will cost me my chance to have a biological child.  So for me it is really important that I don't spend time on additional sleep interventions that are unlikely to yield any results but it's also true that if this isn't going to go anywhere and it needs a "little push" to help stop this chronic early morning awakening pattern, that I do that at some point in the near future when it is convenient for me.>>

 

 

Hello Getmysleep sorry to hear of your troubles with sleep. Firstly it is highly common to have sleep issues after coming off sleep drugs. Those issues can last quite awhile for some people. But given some more time, it will resolve. If you go to the doctor to seek something to help, you perhaps should be very careful what intervention the doctor suggests. Many of them will offer benzos, antidepressants, psych meds, other sleep drugs, etc In taking those especially after you’ve already come off Zdrugs can cause a new kind of hell. They would also require you to taper them at some point once you hit tolerance on those too. Then you’ll perhaps have even worse insomnia. In my opinion I’d say try something over the counter - one thing at a time for a few nights to see if it helps. If you find something that does help then stick with it until you heal more. Morning sunlight about 15-20 minutes can help reset your circadian rhythm for bedtime sleepiness. Soothing music and a strict nighttime routine is ideal every night. Go to bed at the same time each night and get up at the same time every morning. This trains the brain when to enforce sleeping. Lights out or very dim an hour before bedtime. The idea is to be in a calm relaxed dark environment. This is CBT-I ( cognitive behavioral therapy for insomnia). It has worked very well for me. Some nights it takes me a bit longer to fall asleep than others because I have night waves. But I stick with my relaxation technique and fall asleep naturally without any assistance from any supplements, herbs or medications. After I’m very relaxed I put in my earplugs. Like you I’ve struggled to sleep most of my life starting in my teens. I wish to God the doctors would have tried CBTI with me before giving me Ambien ( zolpidem). It literally ruined my life for 4 years now. I’m 27 months free. For most people the CBTI takes awhile to cater it to your individual liking. It has to be given some time to be fully affective. But for some, like me, it worked almost immediately. The rule I have for myself is once I close my eyes I’m not allowed to open them even in the dark. Something you can cuddle is another soothing nighttime tool. Perhaps you can imagine holding your future new baby.

I’m not sure if insomnia is your only symptom left after 13 months. If it is I’d say you’re very fortunate. I had a friend on here named Shay that was on the same medication you had. Her insomnia was unreal as yours is and it lasted a long time. Currently she still struggles from time to time but her sleep is much better.  Please go through this thread and read her posts. She’s no longer active on this thread as she has healed much and living her life.

I wish you the best in having a child of your own. At 42 that will cause some stress in itself. Any woman at any age will when trying to have a baby. I hope to hear in the near future that you are expecting. How lovely it is to be a mommy. In a nutshell, the zdrug you were on is a known culprit of causing prolonged insomnia issues. Given more time they should improve naturally as the brain fine tunes things. Your other life stressors is perhaps making things worse. I believe meditating with soothing spa music might prove to be a useful tool to keep the stress down during the day. Maybe for 15 minutes take some time during the day in a cozy spot to do calm breathing. When I do it, I pretend I’m at a spa or on a beach if I use the beach waves music. I hope this was some help to you. Best wishes. 🤗>>>

 

 

Hi again.  First, thanks to everyone who took the time to answer my posts.... I know I take a while to respond, but that is because I have such little time that I am not cognitively impaired from a lack of sleep and I have so much to do during that small percentage of time, so this kind of naturally falls behind. But I do appreciate everyone who took the time to write to me and put in their two cents.

 

    With regard to the post above, you are right. It seems that all the doctors know how to do when someone comes in with a sleep problem is to prescribe some sort of a pill, whether that is a benzo/Zdrug/antidepressant/antihistamine/antipsychotic.  My current doctor has basically run out of ideas --- he sent me to an endocrinologist to take my thyroid, adrenals, etc., evaluated me for psychiatric issues that could be affecting my sleep, prior to getting off these pills I tried every other pill imaginable, I tried sleep restriction 5 times (including once for a period of 12 weeks when I was 3-6 months off the pills).......

 

    The only thing left that I didn't test for is apnea (however, I truly think that is unlikely as I have no other symptoms of it ... like waking up choking in the middle of the night). People on these boards have mixed opinions about CBT-I. A lot of people swear that it is useless against benzo withdrawal.  For my personal case, it doesn't seem to work (though I would have loved it if the sleep restriction did). From what I've read, it seems that even setting aside benzo/Z drug withdrawal, sleep restriction is not usually successful for early morning awakenings. It usually works better in cases where people's main problem is falling asleep, or where people wake up in the middle of the night, maybe are up for a couple hours, but are at least able to fall asleep afterwards.  The other part of CBT-I focuses on treating anxiety/arousal as you said, like the relaxation techniques.  I guess I may be the odd one out here on this forum, since most people who were originally put on Benzos probably were experiencing anxiety issues, and even a lot of people who have sleep issues probably do so because of anxiety (actually, the majority of them in fact)... but this really doesn't fit me.  Don't get me wrong, I'm frequently stressed because it is hard to get through a day on little sleep (specifically my concentration and cognitive skills are bad) and that is a stressor all on its own.  The only other thing in the background is my biological clock.  As a rule however, I don't go to bed stressed out or having anxious thoughts, nor do I have anxious thoughts when I wake up in the middle of the night or panic attacks, etc.    I'm generally relaxed when I wake up in the middle of the night ... therefore the stage is set for me to potentially fall back asleep, but I just don't.

 

        My current doctor and I (who I've had for a while now) are at an impasse in terms of moving forward if this sleep thing doesn't start to improve by itself soon. It seems all he wants to do is continue to recommend CBT-I techniques (like relaxation techniques, etc.) or prescribe another pill.  And I think it is less because he thinks that is the problem or that he thinks it will work (he is actually very perplexed by the severity and chronicity of my problem), but because he says that is the only tools he knows.

 

Hey everyone! Hi Getmysleepback! I, too, apologize for my sparse messaging. I find I sometimes spiral when I read content on these pages so I try to limit myself.

 

I've visited a functional medicine doctor several times since I last posted on here and she's diagnosed me with overmethylation. I had never heard about it prior, she says it's a gene mutation. Patients who are overmethylated (OM) have increased serotonin and dopamine but decreased activity at NMDA receptors compared to the general population. Apparently overmethylated individuals are much more prone to sleep maintenance issues compared to the rest of the population. Might be a long shot ... could it be useful to test your genes?

[[Su...]]

Additionally, I took two separate cortisol tests in the last few weeks from two separate practitioners and found that the results were very different--the second, four-point cortisol test I took (I went to a naturopath to ask for a DUTCH test) showed that my cortisol was extremely elevated in the am. Could it be possible that some of the more finnicky tests (such as cortisol) are worth doing a second time for you?

 

I have been prescribed Phosphatidylserine for my cortisol surges and find that it helps (too bad I can't find it in the Ashton manual list of supplements to avoid ....).

 

I am wishing you much strength, please take care. These drugs are absolute rubbish, you don't deserve any of this--none of you do.

[[Ge...]]

Hey everyone! Hi Getmysleepback! I, too, apologize for my sparse messaging. I find I sometimes spiral when I read content on these pages so I try to limit myself.

 

I've visited a functional medicine doctor several times since I last posted on here and she's diagnosed me with overmethylation. I had never heard about it prior, she says it's a gene mutation. Patients who are overmethylated (OM) have increased serotonin and dopamine but decreased activity at NMDA receptors compared to the general population. Apparently overmethylated individuals are much more prone to sleep maintenance issues compared to the rest of the population. Might be a long shot ... could it be useful to test your genes?>>

 

The problem is that all my life prior to 2016 (a whole 36 years), I never had any problem sleeping through the night. In 2016, I was going through what would have been a momentary stressor with my job (and I suspect a sleep issue that would have dissipated after my life settled down) but instead, I saw a doctor who overprescribed me a bunch of pills. I am pretty sure my lasting sleep issue (as in 95% sure) is a consequence of taking a pill both in the beginning and middle of the night for several years. What I'm not sure is at this point is whether the sleep problem is just a result of my GABA receptors needing additional time to heal (in which case this sleep maintenance issue should slowly dissipate by itself ) or whether taking the sleeping pills every night in the middle of the night disrupted my sleep pattern/circadian rhythm long-term, in which case the problem would also be a result of the pills, but would require additional intervention.

[[Su...]]

I only wonder if it's possible there are a myriad of issues adding to your withdrawal challenge? Could it be the dual-pill combo PLUS something else, underlying biological or endocrinological issues that was triggered by the drug, other environmental stressors?

 

I am much younger than you, but I didn't have a problem sleeping through the night the first 23 years of my life either, if that means anything. I was on vacation when I had my first chronic insomnia episode. Finished a stressful engineering degree and still managed to sleep through those years, my issues started right after.

[[La...]]

Hello Get. It sounds like to me that you’re just still recovering from your gaba receptors trying to return to normal. You’re 14 months so that’s not unheard of. If you read through this thread there’s many others who endured rebound insomnia for a long time like you. Given more time they’re sleep returned to normal. Some of them better than it’s ever been their whole life. But as Sutnik said you can get genetic testing to see if there’s any issue that might be adding to your insomnia. It certainly wouldn’t hurt to know. Also as far as taking melatonin to trick your brain…I’m not aware of that usage. I do wonder if you’re getting enough vitamin d ( natural morning sunlight a few times a week)? Many people find that low vitamin d levels can really throw off sleeping. Many people are unaware that their levels were low. They find out it’s been low for quite some time. A simple blood test can confirm your levels. I’m at a loss when it comes to giving you any suggestions. I simply can tell you what works for me. If the CBT-I helped you at all. I’d say give it another try for a longer period of time. It does train the brain when to induce sleepiness over time. If it doesn’t put you to sleep, it still has some benefits such as the near sleep stage, relaxation and distressing. Near sleep can be just as refreshing. I wish you the best in finding a solution. I wish you more sleep with more nights of sleeping.

[[...]]

It is really up hill at the moment. I am loosing faith again that this will ever get better😪. I feel my brain is totally broken. I have severe constant headache with radiation of pain and numbness out in my body. I can't do more than 5 min of activities, before I have to lie down again in a dark room.

[[Li...]]

It is really up hill at the moment. I am loosing faith again that this will ever get better😪. I feel my brain is totally broken. I have severe constant headache with radiation of pain and numbness out in my body. I can't do more than 5 min of activities, before I have to lie down again in a dark room.

 

My household woman had corona three weeks ago, after that she often has a headache. And still has that once in a while. Over time it is slowly improving. So perhaps your headaches are covid related too?

Jerry 

[[He...]]

Jb,

 

I'm sorry you are so down and out.  I think Jerry has a good point about the Covid headaches and some of the other symptoms you are suffering with as well.  Covid can take a long time for recovery.  I'm so sorry.

 

Helen

 

[[...]]

Thanks Jerry and Helen🙏

It could be that covid made it worse, but I am back to my main symptoms as before covid. So I think it's mainly connected to withdrawal.

[[He...]]

Oh I imagine you are right and I remember you saying that.  However, it may have made improvement slow down. 

 

Whatever it is, I hope you get some much needed relief soon.

 

Helen

 

[[...]]

Thank you Helen

I really hope for improvement soon as well, as this really hell. I am just bedbound now. It's so hard to understand that it can be so bad so far off. Until some months ago, I was able to do something. Walk a little, work a little bit. But now, I am just invalidated with head pain, burning pain all over, fatigue, etc. Probably terrible inner akathisia. Feels like I want to rip my skin off.

[[La...]]

Hugs Team Z! Hope everyone is doing better. I’m getting hit with symptoms too.

Jb if all you can do is lay in a dark room then just do that. When I’m at my worst that’s all I can do too.

[[...]]

Thank you LadyDen.

I try to get up once in a while, just to move my body a little... but most of the time it's dark room.

I am sorry you are hit too🙏

[[La...]]

Thank you Jb. Yes sometimes that’s all we can do. Is get up about every hour or so and move around a bit. Keep the blood flowing 

Hope you have a better day today.

Hugs 🤗

[[Li...]]

Ha Zzers,

Today I finally could swim again, last time was thursday, on Saturday the pool closed early. Before that a mechanic came here to clean my vent system. After swimming I had my sax lesson which we did via internet (Jamulus) It went very well. My teacher and I both played on our altos. The sound quality was good.  I am a bit tired now, which I normally don’t have, but it is ok with me. Huggs Jerry 

[[La...]]

Way to go Jerry on your sax lesson. Keep up the playing. Will you be playing with a band sometime soon?

I know you’re happy to be swimming again. Feeling tired is something we all experience too. You’re still tapering so that may be from that. Hope you enjoy your day my friend.

Hugs 🤗

 

Good morning Team Z. Hope everyone slept well last night. I did ok but took me a little while to fall asleep. That’s my usual problem. Have a great day!

Hugs 🤗

[[He...]]

Good morning all,

 

LD, I'm glad you slept well! My sleep wasn't great but I'm ok.  Just some super loud tinnitus but otherwise all good. How are you doing?  Walk today? 

 

Jerry,

 

It is great that you have a music hobby.  I find music to be very healing.  And I'm glad you got to swim too. 

 

Jorgen in Denmark,

 

I'm thinking of you and wishing for you to have better days very, very soon. 

 

 

Best wishes to all the Z team today. 

 

[[Li...]]

Way to go Jerry on your sax lesson. Keep up the playing. Will you be playing with a band sometime soon?

I know you’re happy to be swimming again. Feeling tired is something we all experience too. You’re still tapering so that may be from that. Hope you enjoy your day my friend.

Hugs 🤗

 

Good morning Team Z. Hope everyone slept well last night. I did ok but took me a little while to fall asleep. That’s my usual problem. Have a great day!

Hugs 🤗

 

Thank you LD, and also Helen!

No, no plans for playing in a band, I am mostly to groggy for that. I have played in bands and orchestras in the past, when I was doing better. Playing on my own is also nice.

 

Jørgen, LD and Helen, I hope you all have a good day today.

Hugggs Jeroen 

[[La...]]

Helen I’m doing ok. In my morning wave but it’s ok. I’m still in bed resting. I did get up to walk around a little. Felt the unbalanced a bit too much so I’m laying back down until it dies off. Then I’ll go take a short walk and go from there.

 

Jerry I understand that about bands. They can be too over stimulating.

 

Jorgen hope you’re feeling better today. Sending you hugs 🤗

[[...]]

Thank you dear friends🙏

I am still burning internally, in my brain and revently I also got skin burn all over.

I have a constant head tension - did you also suffer from this?

Hugs

[[...]]

Will this inner akathisia ever go away again.

It's sooooo bad at the moment😪

[[He...]]

Jb,

 

I believe it will go away.  I know it ris ough.  I don't have inner akasthisia anymore but I have different symptoms. I remember hating that symptom though.  To answer your other question, I had severe head pressure, pain and migraines for 9 years with very little breaks. Nothing really helped for any period of time.  It took me a few months after getting off all the meds to not have constant head issues.  I'm sorry yours is so bad right now. We're all on a different timeline but I do believe that it will also go away with time.

 

Sending you healing thoughts,

Helen

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Thank you Helen🙏