I am in a brutal wave day again, this is so so exhausting and I am losing hope of ever stabilising. I have been holding for just over 6 months and I am getting worse. What is going on?

Can't write much today, my brain feels damaged beyond repair. My body is burning/ tingling ( my most common physical symptom). Keep wanting hot drinks or food but nothing relieves my gut.

Feeling so alone and desperate. 😢😢

I can't write on here as much as I would like which is making me more isolated.

My house sale contract all through, settlement date 28 th July, leave here with dogs on 3 day drive ( friend coming to help in her own car). Contract all smooth and only one open day so I must be very grrateful for that.

My cats get picked up 22 nd June for their transport to mum's in Warrnambool. Very anxious about them. They are both almost 14.

I just can't quiet my mind and I am all muddled and confused in these bad days. I feel like I have dementia ( rationally I know I haven't). This is just so cruel and I wonder if I do need to be on an SSRI just because getting off is so hard. Not because I need it.

I am so frightened when in this state of flight/ fight , akathisia or whatever it is.

Trying to rest but can't turn off .

Wishing everyone a peaceful day with good long windows. When are mine coming ? xxx

2 hours ago, Tracey said:

I am in a brutal wave day again, this is so so exhausting and I am losing hope of ever stabilising. I have been holding for just over 6 months and I am getting worse. What is going on?

Can't write much today, my brain feels damaged beyond repair. My body is burning/ tingling ( my most common physical symptom). Keep wanting hot drinks or food but nothing relieves my gut.

Feeling so alone and desperate. 😢😢

I can't write on here as much as I would like which is making me more isolated.

My house sale contract all through, settlement date 28 th July, leave here with dogs on 3 day drive ( friend coming to help in her own car). Contract all smooth and only one open day so I must be very grrateful for that.

My cats get picked up 22 nd June for their transport to mum's in Warrnambool. Very anxious about them. They are both almost 14.

I just can't quiet my mind and I am all muddled and confused in these bad days. I feel like I have dementia ( rationally I know I haven't). This is just so cruel and I wonder if I do need to be on an SSRI just because getting off is so hard. Not because I need it.

I am so frightened when in this state of flight/ fight , akathisia or whatever it is.

Trying to rest but can't turn off .

Wishing everyone a peaceful day with good long windows. When are mine coming ? xxx

Oh @Tracey I'm so sorry you've been struggling for so long, but every difficulty even though feels eternal is destined to change with time.

You're making great progress with the transition, when this is behind you and the pressures subside I'm sure you'll experience significant relief which you so deserve.

Just hang in there, dear, long, bright window will come for all of us, we'll just have to keep surviving.

Much love to you xxxx

4 hours ago, Tracey said:

I am in a brutal wave day again, this is so so exhausting and I am losing hope of ever stabilising. I have been holding for just over 6 months and I am getting worse. What is going on?

Im so sorry to read @Tracey it can take some a really long time to settle, and of course you tried an updose briefly so the clock has been reset to some degree.

4 hours ago, Tracey said:

Can't write much today, my brain feels damaged beyond repair. My body is burning/ tingling ( my most common physical symptom). Keep wanting hot drinks or food but nothing relieves my gut.

You don't need to. Just write what you can/want.

4 hours ago, Tracey said:

Feeling so alone and desperate. 😢😢

I can't write on here as much as I would like which is making me more isolated.

We are all hear for you regardless of how much you write, just picture us all there propping you up!

4 hours ago, Tracey said:

My house sale contract all through, settlement date 28 th July, leave here with dogs on 3 day drive ( friend coming to help in her own car). Contract all smooth and only one open day so I must be very grrateful for that.

That is great news! You needed that! Hope the drives goes ok, that is a big drive!

4 hours ago, Tracey said:

This is just so cruel and I wonder if I do need to be on an SSRI just because getting off is so hard. Not because I need it.

No one needs these drugs, unfortunately when our nervous system is dysregulated I think getting off is the only way imo.

Im very sorry you are still in this @Tracey it can take some 12-18 months to settle down on a long hold. They struggle that whole time and then all of a sudden the body gets there. You are not without hope. xxxxx

4 hours ago, Tracey said:

I am in a brutal wave day again, this is so so exhausting and I am losing hope of ever stabilising. I have been holding for just over 6 months and I am getting worse. What is going on?

Can't write much today, my brain feels damaged beyond repair. My body is burning/ tingling ( my most common physical symptom). Keep wanting hot drinks or food but nothing relieves my gut.

Feeling so alone and desperate. 😢😢

I can't write on here as much as I would like which is making me more isolated.

My house sale contract all through, settlement date 28 th July, leave here with dogs on 3 day drive ( friend coming to help in her own car). Contract all smooth and only one open day so I must be very grrateful for that.

My cats get picked up 22 nd June for their transport to mum's in Warrnambool. Very anxious about them. They are both almost 14.

I just can't quiet my mind and I am all muddled and confused in these bad days. I feel like I have dementia ( rationally I know I haven't). This is just so cruel and I wonder if I do need to be on an SSRI just because getting off is so hard. Not because I need it.

I am so frightened when in this state of flight/ fight , akathisia or whatever it is.

Trying to rest but can't turn off .

Wishing everyone a peaceful day with good long windows. When are mine coming ? xxx

Sorry Tracey I asked about your leaving date etc is a separate message so just disregard. I'm happy for you the sale was relatively quick and smooth. I'll try and stay in touch a bit more 🤗

Thanks @Catbird . You have enough of your own to deal with, don't be sorry 🙏

2 hours ago, Fullhealing said:

Oh @Tracey I'm so sorry you've been struggling for so long, but every difficulty even though feels eternal is destined to change with time.

You're making great progress with the transition, when this is behind you and the pressures subside I'm sure you'll experience significant relief which you so deserve.

Just hang in there, dear, long, bright window will come for all of us, we'll just have to keep surviving.

Much love to you xxxx

Thank you my dear friend @Fullhealing . You give me hope xx

1 hour ago, Chippy said:

Im so sorry to read @Tracey it can take some a really long time to settle, and of course you tried an updose briefly so the clock has been reset to some degree.

You don't need to. Just write what you can/want.

We are all hear for you regardless of how much you write, just picture us all there propping you up!

That is great news! You needed that! Hope the drives goes ok, that is a big drive!

No one needs these drugs, unfortunately when our nervous system is dysregulated I think getting off is the only way imo.

Im very sorry you are still in this @Tracey it can take some 12-18 months to settle down on a long hold. They struggle that whole time and then all of a sudden the body gets there. You are not without hope. xxxxx

You give me hope again @Chippy .

So 12-18 months means I have more time to still turn a corner. I was starting to lose hope. My body is really trying to heal and I need to remember that. I keep forgetting it is not linear.

You have picked me up again , so thank you. xx

27 minutes ago, Tracey said:

My body is really trying to heal and I need to remember that.

Exactly! It never stops wanting balance, it is constantly working towards it! xxx

Hi @Tracey I’m sorry you’re struggling so much and haven’t found any relief so far with your long hold. I think life stressors can be really tough on us in withdrawal. Late last year I was feeling pretty stable and tried to go back to work. I only worked part-time hours for a few weeks, but through that time I could feel my symptoms coming back and getting worse and worse until I had to go off work again. I truly believe it was the stress of work that made my symptoms explode again.

All that to say, I know you’ve been going through a lot of life stuff lately, so it could be that’s all contributing to your long wave. I hope that once you get settled into your new place and things calm down a bit you can find some peace and relief 💜

Thank you for telling me that my story resonated with you. It means more than my words can express. One of the main reasons I am here on this site is to try to help others who are suffering the way I did. I was so scared and so alone, and I hate to think of any other person going through that. So it means a lot to know that you connected with my story. Thank you!

I came over to your thread so you would have all the information in one place. I wish I could do something about what you are suffering physically and emotionally, but unfortunately I can't. What I can say is that you know what this is, and with time you will improve. Sometimes just having that understanding can make things a little less frightening.

And to answer your question, "Did you ever feel like you wouldn't get off and it was all too much?", yes, absolutely. There were times when I honestly felt that way. I know how frightening and overwhelming that feeling can be. So while I can't tell you when things will improve, I can tell you that I understand that fear, and I know healing is possible, even when it feels like nothing is changing.

I went over your taper and your supplements and had a few thoughts. These are only my thoughts, and I encourage you to do your own research before even considering any of them. They may be helpful, or they may not be. The last thing I would ever want to do is suggest something that might make someone feel worse.

I think we all agree that holding and making no further cuts for a while makes sense.

You might also want to consider reviewing the exact ingredients and doses in your multivitamin, as some vitamins, especially higher doses of certain B vitamins, can sometimes contribute to symptoms in sensitive people.

One other thing that came to mind was daily ginkgo and the intermittent use of herbs such as ashwagandha (withania) or other herbal blends. Some people with a sensitized nervous system find they can be activating or make symptoms harder to sort out. If you decide to make any changes, a slow and gentle tapering approach may be worth considering.

These are just a few thoughts I had after looking over everything. Please take them only as ideas to explore, not recommendations. You know your body best, and I was just hoping that something in here might give you another avenue to consider. Most of all, I want you to know that what you are experiencing is something many of us recognize, and although it can take far longer than any of us would like, healing does happen. You are not alone in this.

Please feel free to reach out anytime, either on your thread or mine. I understand more than I wish I did what you're going through, and I am always happy to listen and lend support in whatever way I can. I don't want you to walk through this alone.

19 hours ago, Chippy said:

Exactly! It never stops wanting balance, it is constantly working towards it! xxx

Having trained as a naturopath I am surprised I keep forgetting. 🙏

15 hours ago, SarahMc said:

Hi @Tracey I’m sorry you’re struggling so much and haven’t found any relief so far with your long hold. I think life stressors can be really tough on us in withdrawal. Late last year I was feeling pretty stable and tried to go back to work. I only worked part-time hours for a few weeks, but through that time I could feel my symptoms coming back and getting worse and worse until I had to go off work again. I truly believe it was the stress of work that made my symptoms explode again.

All that to say, I know you’ve been going through a lot of life stuff lately, so it could be that’s all contributing to your long wave. I hope that once you get settled into your new place and things calm down a bit you can find some peace and relief 💜

Thank you @SarahMc , I hope so too. I will have a huge lifestyle change and my animals to try and make happy and feel secure again which is weighing on me. However there will be other stressors gone.

That is interesting about your symptoms coming back with work. We are pretty sensitive in this state. I haven't read your story and will try to catch up soon.

Your support is much appreciated. 🙏💛

11 hours ago, RachelSusan said:

Thank you for telling me that my story resonated with you. It means more than my words can express. One of the main reasons I am here on this site is to try to help others who are suffering the way I did. I was so scared and so alone, and I hate to think of any other person going through that. So it means a lot to know that you connected with my story. Thank you!

I came over to your thread so you would have all the information in one place. I wish I could do something about what you are suffering physically and emotionally, but unfortunately I can't. What I can say is that you know what this is, and with time you will improve. Sometimes just having that understanding can make things a little less frightening.

And to answer your question, "Did you ever feel like you wouldn't get off and it was all too much?", yes, absolutely. There were times when I honestly felt that way. I know how frightening and overwhelming that feeling can be. So while I can't tell you when things will improve, I can tell you that I understand that fear, and I know healing is possible, even when it feels like nothing is changing.

I went over your taper and your supplements and had a few thoughts. These are only my thoughts, and I encourage you to do your own research before even considering any of them. They may be helpful, or they may not be. The last thing I would ever want to do is suggest something that might make someone feel worse.

I think we all agree that holding and making no further cuts for a while makes sense.

You might also want to consider reviewing the exact ingredients and doses in your multivitamin, as some vitamins, especially higher doses of certain B vitamins, can sometimes contribute to symptoms in sensitive people.

One other thing that came to mind was daily ginkgo and the intermittent use of herbs such as ashwagandha (withania) or other herbal blends. Some people with a sensitized nervous system find they can be activating or make symptoms harder to sort out. If you decide to make any changes, a slow and gentle tapering approach may be worth considering.

These are just a few thoughts I had after looking over everything. Please take them only as ideas to explore, not recommendations. You know your body best, and I was just hoping that something in here might give you another avenue to consider. Most of all, I want you to know that what you are experiencing is something many of us recognize, and although it can take far longer than any of us would like, healing does happen. You are not alone in this.

Please feel free to reach out anytime, either on your thread or mine. I understand more than I wish I did what you're going through, and I am always happy to listen and lend support in whatever way I can. I don't want you to walk through this alone.

Thank you @RachelSusan .

Your suppport and similar experience means alot.

I have not been taking my withania/iron combo for a few months as I do feel slightly too awake at night sometimes with that herb as do other people despite it being classed a sedative tonic herb. I will see what my ferritin is in a week and I hope it has held up without supplement.

The gingko I missed for on and off to see what may happen and my brain fog and confusion seemed so much worse. However I am always thinking about my supplements due to activation and sensitivity. The B is less than 50 mg of all B's and not a mega one, I do skip days. It is a hard one as I don't feel I get enough from food. I will go every other day and see what happens.

I have stopped any other adaptogen/ tonic herbs like rhodiola. I felt schisandra was helping but have run out and won't replace at the moment.

Thanks for your ideas and going over my taper. 🙏💛

Re the gingko I remember when I started it 2 years ago I was on about 25 mg and it made s huge difference to brain fog/ confusion so I stuck with it. I thought helping brain cells with blood flow would support the assault that happens during a taper.

7 hours ago, Tracey said:

I will have a huge lifestyle change and my animals to try and make happy and feel secure again which is weighing on me

I very much understand the stress of moving with animals. My three pets are all rescues and they don’t like change. We haven’t moved much with them, but each time we do they take a while to calm down and adapt and I feel like I can’t fully settle in until they’re ok. But eventually they do adapt and I’m sure your animals will too 😊

I’ll keep my fingers crossed that everything goes smoothly with your move 🤞🏼

14 hours ago, SarahMc said:

I very much understand the stress of moving with animals. My three pets are all rescues and they don’t like change. We haven’t moved much with them, but each time we do they take a while to calm down and adapt and I feel like I can’t fully settle in until they’re ok. But eventually they do adapt and I’m sure your animals will too 😊

I’ll keep my fingers crossed that everything goes smoothly with your move 🤞🏼

Thanks @SarahMc , I am no longer the solid rock I was for them either due to my awful anxiety , depression and physical symptoms.

Mustering up all the strength I have to make it through. Just too much change all at once for my sensitive and dysregulated nervous system.

Hope you are having a peaceful day. I haven't been to your thread yet. xx

I am have an intense awful wave again today.

Every second day is a real pattern now. If I don't or can't rest on these days it extends into every day ( noticed that weeks ago).

I am so activated, nauseous, tingling and huge black chemical cloud in my head. In bed now but i can't sleep of course.

How will I cope with all my responsibilities and huge change. ?

I have to get through this , I have no choice. So tempting to go back on but I know it will likely activate / agitate me and would take ages to settle and 'work' ( if it does even work). Such a trapped place to be, feel like am losing my mind/ sanity. And it still feels lije it is me and I have a serious mental illness.

I will keep trying , but so exhausted.

Dear Tracey, I have been following your story and am so sorry for what you are going through.

Doing a great big move like you are doing is hugely stressful to anyone. In withdrawal probably 100 times moreso. You are doing so well (I know you don't feel like it).

Rest whenever you can. Be gentle with yourself.

Just wanted to send you a little bit of encouragement.

Wombat

2 hours ago, Tracey said:

I am have an intense awful wave again today.

Every second day is a real pattern now. If I don't or can't rest on these days it extends into every day ( noticed that weeks ago).

I am so activated, nauseous, tingling and huge black chemical cloud in my head. In bed now but i can't sleep of course.

How will I cope with all my responsibilities and huge change. ?

I have to get through this , I have no choice. So tempting to go back on but I know it will likely activate / agitate me and would take ages to settle and 'work' ( if it does even work). Such a trapped place to be, feel like am losing my mind/ sanity. And it still feels lije it is me and I have a serious mental illness.

I will keep trying , but so exhausted.

Dear @Tracey my heart breaks for your suffering, wish I could take it from you, from all of us who are under this cruel chemical cloud but please remember that this is a powerful chemical mind hold that blackens everything and creates chaos, it is not you!

It feels like forever, I know but it will pass, just keep holding on and let the system do its thing and don't give in to the temptation to go back on, there are no guarantees it will help and if it gets worse than what.. I know it's hard but trust your system that is constantly aiming for balance, it will get there eventually.

It may feel like you can't cope but in fact you already are and well considering all the pressures you are in, no matter how tiny the steps are you still moving forward, keep doing what you can and be gentle with yourself, things will get better little by little.

Much love and strength to you 🩷

Edited June 15Jun 15 by Fullhealing

5 hours ago, Tracey said:

And it still feels lije it is me and I have a serious mental illness.

It isn't you Tracey, these drugs are awful. Hope tomorrow is kinder to you xxxx

19 minutes ago, Chippy said:

It isn't you Tracey, these drugs are awful. Hope tomorrow is kinder to you xxxx

Yes me too @Chippy . Thank for your support and belief in me.

I guess my ongoing concern is that if I am a bit sensitive to the drug, how will I get better without resuming my taper?

5 hours ago, Wombat said:

Dear Tracey, I have been following your story and am so sorry for what you are going through.

Doing a great big move like you are doing is hugely stressful to anyone. In withdrawal probably 100 times moreso. You are doing so well (I know you don't feel like it).

Rest whenever you can. Be gentle with yourself.

Just wanted to send you a little bit of encouragement.

Wombat

Thank you @Wombat .

Your kind words and encouragement really help me right now.

I will catch up with your story when I land and settle more.

Complicating the move is my unemployment, no career and a feeling very lost in who I am and what my future holds. Huge life transition.

Enjoy your evening xx

2 hours ago, Fullhealing said:

Dear @Tracey my heart breaks for your suffering, wish I could take it from you, from all of us who are under this cruel chemical cloud but please remember that this is a powerful chemical mind hold that blackens everything and creates chaos, it is not you!

It feels like forever, I know but it will pass, just keep holding on and let the system do its thing and don't give in to the temptation to go back on, there are no guarantees it will help and if it gets worse than what.. I know it's hard but trust your system that is constantly aiming for balance, it will get there eventually.

It may feel like you can't cope but in fact you already are and well considering all the pressures you are in, no matter how tiny the steps are you still moving forward, keep doing what you can and be gentle with yourself, things will get better little by little.

Much love and strength to you 🩷

Thank you so much @Fullhealing .

You always reassure me and I know you understand.

My head hurts like hell tonight and the confusion is crazy. Getting tired now , so settling a tiny bit. 6.51 pm.

I hope you are doing ok and I know you are suffering enormously too. We can stay strong together. xx

Such a trapped place to be, feel like am losing my mind/ sanity. And it still feels lije it is me and I have a serious mental illness.

I totally relate to what you are saying, the future is fraught and there's no going back. The emotions associated with feeling trapped are real, scary and debilitating. I doubt you have a serious mental illness @Tracey , maybe trauma?

Just do what you can and give yourself lots of TLC 🤗

9 hours ago, Tracey said:

I am no longer the solid rock I was for them either due to my awful anxiety , depression and physical symptoms.

I know how much that kind of guilt can weigh on you, when you feel like you can’t be your best for the people and animals around you — but equally, I’m certain that your animals can still feel all of the love that you have for them 💜

9 hours ago, Tracey said:

Mustering up all the strength I have to make it through. Just too much change all at once for my sensitive and dysregulated nervous system.

Sending strength your way, you will make it through the move and hopefully things will be much more peaceful on the other side.

9 hours ago, Tracey said:

Hope you are having a peaceful day. I haven't been to your thread yet. xx

You have enough going on without going to my thread! But thanks for the thought, I’ve actually been doing on the past week 😊. Far from stable, but almost like I can see a glimmer of stability…

6 hours ago, Tracey said:

Thank you so much @Fullhealing .

You always reassure me and I know you understand.

My head hurts like hell tonight and the confusion is crazy. Getting tired now , so settling a tiny bit. 6.51 pm.

I hope you are doing ok and I know you are suffering enormously too. We can stay strong together. xx

Thank you for reassuring me as well dear @Tracey I really appreciate it and remember, things always change, maybe not at the pace we want but they do so stay strong, we're going to make it.

I hope you manage to get some good rest and the headache will ease quickly.

Much love 💕

Edited June 15Jun 15 by Fullhealing