12-24 months and up support group

[[Ga...]]

Thanks, Jorgen!  You will get better.  I have gone as long as five weeks with no head pain at all.  It is a wonderful feeling and I so appreciate every window I get at this stage of the game.

 

GG

[[...]]

Thanks GG. I surely hope you are right. I feel I am in the acute state, but that is strange, 16 months off...

You also suffered a lot from burning pain - right? Has that gotten better?

J

[[Ga...]]

Yes, I describe my symptoms to my doctor as “burning brain” with a side dish of a tight band around my forehead.  My neurologist believes that part of the pain comes from the nerve endings trying to regrow and regenerate after being down regulated from the benzos/sleep drugs we took.  Plus, when the muscles are tight in the neck and shoulders this creates tension type headache.  I have a pre-wedding event to go to today and I am using a heated wrap right now to try to calm the shoulder tension down, and, hopefully, by 5 p.m, I will get a nice window so I can enjoy the festivities!!!

 

Have a good day🙏

 

Gg

[[La...]]

I watched an interesting video of Dr Jenn Leigh about having a tea party with your fears as the invited guests. Have you all seen it? When she explained it, it made sense to me because I’ve done something similar to address my fears in the past. I wrote mine down then out loud addressed each one as to why I was afraid of whatever it was. Then gave them a command to not stress me out by overreacting to them. She did something similar but used a mini tea party and writing them down. Wow! I couldn’t help but think it’s a loving fun gentle way of facing not only our fears but I can see how it’s a valuable tool to use in whatever issues we have. This forum is about sharing anything that we see might help each other. So I had to mention this. In this recovery, we need all the help we can get!

 

Also, I want to ask you all a question…..

I’ve read on quite a few success stories on here that they stopped calling this WD at a certain point. Their reasonings was because after a certain time, it’s not withdrawal but it’s just the brain trying to reach homeostasis again or just simple recovery affects. So they simply refer to it as recovery. It makes sense to me when I look at any recovery process. For example, people coming off alcohol addiction will at first have WD but after a certain time it’s just recovery. And the whole thing is called recovery. So, my question is do any of you view your recovery as recovery or do you say you’re still in WD even though it’s been 1,2,3 years?

The reason for my asking is because I think it’s important to call things what they are. Especially this. Perhaps if we call it what it is, then our brains will connect better with what it is doing - repairing, recovering, regenerating, renewing. When I think about it, what we speak and think becomes our reality. Even the Bible says “ As a man thinketh, so is he.”  It just makes so much sense to me. We even tell our kids all the time to think, speak and be positive when they’re going to do various things. I do this with my daughter all the time when she claims she’ll fail at this or suck at that before she even gives it a chance. Sorry for the long posts. This is just on my mind this morning. Happy Saturday and enjoy your day! Love and hugs 🤗

[[He...]]

Great post, Lady Den. I responded it to on the BC board.  REALLY makes sense to me.

 

GG, I'm hoping and praying you feel much better by this afternoon for your fun wedding event.

 

Jorgen, I know it feels like forever but I do believe your head will get better. As I've repeated too many times, mine hurt for almost 9 years in various and debilitating ways and it rarely hurts anymore.  I'll maybe have 2 headaches per month now.  I really think your Covid infection has affected your head as well.  I'm just sorry you are dealing with this.

 

 

 

Helen

 

[[La...]]

Helen 

Big hugs to you! What are you doing today?

[[...]]

Dear Friends

 

GG - I also have the burning brain, and have had it for a long time. I hope your neurologist is right when he talks qbout regrowing the receptors. I hope you will have a nice window this afternoon to the pre-wedding🙏

 

LadyDen - yes I also think WD is not the best word, after so long time. I think recovering is better - however, recovering from a brain damage, created by the drugs. I feel really brain damaged and I hope I am recovering - which is hard for me to acknowledge, since I didn’t have windows and I feel things are getting worse, here in my second year. That it hard to understand.

 

Helen - thank you - I surely hope you are right. It is so hard to believe that things will get better, after 16 months of despair. In the first 14 months, I was able to do stuff, but now I am totally disabled, lying in bed most of the time. I am not sure that covid is still in play, since I was getting a lot worse a month before covid...

 

I am wondering about one thing. In the first year, I was not so much aware of not drinking alcohol. I had maybe a bottle of wine per week. It helped a little when I had to do stuff, e.g. cooking for my children - I could take a glass of wine. I stopped that some months ago. I think maybe that could have put my healing on hold during the first year - and could that explain why I feel more in acute state now? Did any of you heard about others who maybe used a little alcohol to ease the symptoms. You don't need to tell me it was a bad idea. I know now...

 

Healing hugs to all of you, Jørgen

[[He...]]

Jorgen,

 

I also was having wine in the early stages after my taper was over.  I was having wine BEFORE and during my taper as well and yes, I think it slowed my progress. Don't feel bad about it!  I was also taking triptans for migraines which affect serotonin so I think things take a lot longer when we have multiple variables. But healing will come.  I'm just so sorry for your current suffering. It's awful.

 

  Take care,

 

Helen

[[He...]]

Helen 

Big hugs to you! What are you doing today?

 

Hi LD,

 

First of all today, I'm hoping for my buddies to feel better!  Next, this is our last day at the beach and we are doing some housework (closet cleaning out, etc). Later, we'll TRY to hit a few tennis balls for maybe 15 minutes.  I haven't hit in about 2 1/2 years due to my physical debilitation but this court is just outside our door so it seems a shame not to walk out on it at least while we are here. I hope your day goes as well as possible and that whatever you do is healing.

 

Love,

Helen

 

[[...]]

Jorgen,

 

I also was having wine in the early stages after my taper was over.  I was having wine BEFORE and during my taper as well and yes, I think it slowed my progress. Don't feel bad about it!  I was also taking triptans for migraines which affect serotonin so I think things take a lot longer when we have multiple variables. But healing will come.  I'm just so sorry for your current suffering. It's awful.

 

  Take care,

 

Helen

 

Thank you Helen🙏

[[La...]]

Dear Friends

 

GG - I also have the burning brain, and have had it for a long time. I hope your neurologist is right when he talks qbout regrowing the receptors. I hope you will have a nice window this afternoon to the pre-wedding🙏

 

LadyDen - yes I also think WD is not the best word, after so long time. I think recovering is better - however, recovering from a brain damage, created by the drugs. I feel really brain damaged and I hope I am recovering - which is hard for me to acknowledge, since I didn’t have windows and I feel things are getting worse, here in my second year. That it hard to understand.

 

Helen - thank you - I surely hope you are right. It is so hard to believe that things will get better, after 16 months of despair. In the first 14 months, I was able to do stuff, but now I am totally disabled, lying in bed most of the time. I am not sure that covid is still in play, since I was getting a lot worse a month before covid...

 

I am wondering about one thing. In the first year, I was not so much aware of not drinking alcohol. I had maybe a bottle of wine per week. It helped a little when I had to do stuff, e.g. cooking for my children - I could take a glass of wine. I stopped that some months ago. I think maybe that could have put my healing on hold during the first year - and could that explain why I feel more in acute state now? Did any of you heard about others who maybe used a little alcohol to ease the symptoms. You don't need to tell me it was a bad idea. I know now...

 

Healing hugs to all of you, Jørgen

Yes that’s why I love calling it recovery. Because it is.

I’m not a drinker, never have been. So I don’t have any experience with alcohol. I’m glad Helen chimed in. But I will say that I feel like your recovery was affected by drinking off and on in your first year. I’m glad that you’ve realized that alcohol is a very bad idea when trying to recover. I see it as hitting the receptors as to say you’re still on the benzo. Looking at it that way, I can see how the brain will react badly. IMO if I were you, I’d look at where you are now as your “real” beginning of your recovery because it hasn’t been that long since you quit alcohol. I hope this helped shine another way of looking at it.

I’m sorry for your struggle. Have you considered speaking to Jenn Leigh?

[[La...]]

Helen 

Big hugs to you! What are you doing today?

 

Hi LD,

 

First of all today, I'm hoping for my buddies to feel better!  Next, this is our last day at the beach and we are doing some housework (closet cleaning out, etc). Later, we'll TRY to hit a few tennis balls for maybe 15 minutes.  I haven't hit in about 2 1/2 years due to my physical debilitation but this court is just outside our door so it seems a shame not to walk out on it at least while we are here. I hope your day goes as well as possible and that whatever you do is healing.

 

Love,

Helen

I pray you all have a safe trip home. I know the trip was therapeutic. I’m interested in knowing how you did with the tennis. Please don’t over do it. I hope you are feeling well today.

Sending you love ❤️

[[...]]

LasyDen,

Yes, I also wonder if I need to reset my clock of healing. A little depressing, but could explain why I feel more in acute state now.

I was not drinking much at all - just a glass now and then. But I now feel that that might have postponed my healing - or maybe that was my taper off...

I did consider talking to Jenn - but I don't think I am ready for that yet. Did you use her?

Healing Hugs🙏

[[He...]]

Helen 

Big hugs to you! What are you doing today?

 

Hi LD,

 

First of all today, I'm hoping for my buddies to feel better!  Next, this is our last day at the beach and we are doing some housework (closet cleaning out, etc). Later, we'll TRY to hit a few tennis balls for maybe 15 minutes.  I haven't hit in about 2 1/2 years due to my physical debilitation but this court is just outside our door so it seems a shame not to walk out on it at least while we are here. I hope your day goes as well as possible and that whatever you do is healing.

 

Love,

Helen

I pray you all have a safe trip home. I know the trip was therapeutic. I’m interested in knowing how you did with the tennis. Please don’t over do it. I hope you are feeling well today.

Sending you love ❤️

 

thanks LD. We aren't heading home until tomorrow. I just meant today was our last full day.  Well, we went out to the court and hit a few balls for about half an hour.  We laughed and laughed at how bad we were.  I really just want to stand on the court and see how it felt. I was a little boaty and my back was already sore so we really just messed around a little.  It went a WHOLE lot worse the last time I tried on Easter Day 2020 so I count this as progress. I definitely did not overdo it. I just listened to the ocean and tried to look at the ball! 

 

Hugs LD.

[[Fo...]]

Anyone sweating at this far out? Feeling like the neck, scalp, hands and feet, behind the knees. Headaches.

[[Li...]]

Hello to all my beautiful buddies,

 

Jorgen,

I haven't had a drink in the last 2 years, while I've been in recovery. I do know some that drink and feel it's not a problem. I guess we're just all different and have to figure out what works best for us.

 

LadyDen,

I agree about calling it recovery not withdrawal. My husband told me over a year ago to stop calling it withdrawal because it's not, it's my body trying to recover. So that's how I look at it.  Because that's what we're doing, we're in recovery and I think it's a more positive way to view it.

 

Helen,

Sounds like you had a wonderful week and it's off to a good finish. I'm so happy for you. So looking forward to better times.

 

Sending big hugs and love to all,

 

LiveLife

[[...]]

Thank you LiveLife

Yeah, I also thought that gaving a little wine now and then would be ok. You only know after, whether you healed fast or not, and what you could do or not do - right?

Healing Hugs, Jørgen

[[Li...]]

Jorgen,

Yes. That is true. I drank occassionally for the 1st few months very lightly and didn't think it had made a difference one way or the other. I just decided to stop drinking to see if it could help me to heal any quicker but I really didn't see a change. Hugs!

 

LiveLife

[[Fo...]]

Jorgen, this is why I don't post here. Lol

[[Li...]]

Fox,

I do break out in a sweat when I have panic attacks. As a matter of fact in the middle of the night last night I had one and I was drenched.  I don't think it's unusual to have that happen this far out. I also still get headaches.

 

Hugs!

 

LiveLife

[[He...]]

Anyone sweating at this far out? Feeling like the neck, scalp, hands and feet, behind the knees. Headaches.

 

FoxClover,

 

I'm not sweating too much anymore.  I did sweat quite a bit earlier on.  Headaches are less for me but still occasional. Hope you get some relief soon. 

 

Helen

 

[[ka...]]

💕💕gg.

[[jo...]]

Hello everyone,

I like to think of this now as “recovery” too.

But oh how I wish I could feel somewhat bit of recovery.

Last week was so very difficult with the tooth extraction site pain that is still ongoing, along with the continuing burning brain, burning scalp, shoulders and lower legs. I’ve had a lot of stress at work all year with demanding ongoing programming projects with tight development turnaround times.

 

I’ve had terrible crazy shaking going on the past few weeks, where my body and especially my legs just  shake and tremble like a seizure or something. Maybe it’s panic attacks? My anxiety is so ramped up.

 

My CNS is screaming at me for something. This burning is not right. My body must be telling me something? I don’t know what it needs. I’ve spent so much money on labs, most recently a month ago, yet it comes back normal.  I feel like a freak with a broken processor.

I’m growing so discouraged. I’m scared because I’ve had this burning for 16 months, which includes  my failed taper attempt of 4 months.

 

At this point, I’m wondering if it isn’t something else or if it’s permanent. My CNS is not right and it doesn’t appear to be getting any better. Is it possible that I wouid burn for so long?? I get a few windows for an hour or so on some days, but not one day has gone by that the burning isn’t there.

 

It truly feels like I’m greased up and put in a deep fryer. How can this be after so many months?

I’ve been on my knees praying for mercy for so long. I don’t know what else to do. I’ve really tried to endure, but I’m feeling such despair in that perhaps this is not going to lift.

Are there any stories of people that have had this for this long?

 

I read the entries here of such great courage and compassion; and strength! I’m so sorry for those of us that are still in the battle.

 

GG, LadyDen, Jorgen, LifeLife, Helen, JBen, JB, Becks, Fox, Decatur, Sandy and others,

Your great courage and compassion are a strength and light for us. Amidst your journey, you emit great strength and endurance. I draw from this and am so grateful for this place where we can share our needs and hopes. GG, JBen, I’m sending you good thoughts for your upcoming appointments.

I pray that today is a good day for each of you and that beautiful peace would enfold you. I’m going to try to go to church this morning, my head is on fire, but I’m gonna try; maybe my miracle is waiting. Lord, have mercy!

 

Bless you all.

JordanJ 

 

[[La...]]

LasyDen,

Yes, I also wonder if I need to reset my clock of healing. A little depressing, but could explain why I feel more in acute state now.

I was not drinking much at all - just a glass now and then. But I now feel that that might have postponed my healing - or maybe that was my taper off...

I did consider talking to Jenn - but I don't think I am ready for that yet. Did you use her?

Healing Hugs🙏

I’m going to speak to her soon.

Healing hugs 🤗

[[La...]]

Helen 

Big hugs to you! What are you doing today?

 

Hi LD,

 

First of all today, I'm hoping for my buddies to feel better!  Next, this is our last day at the beach and we are doing some housework (closet cleaning out, etc). Later, we'll TRY to hit a few tennis balls for maybe 15 minutes.  I haven't hit in about 2 1/2 years due to my physical debilitation but this court is just outside our door so it seems a shame not to walk out on it at least while we are here. I hope your day goes as well as possible and that whatever you do is healing.

 

Love,

Helen

I pray you all have a safe trip home. I know the trip was therapeutic. I’m interested in knowing how you did with the tennis. Please don’t over do it. I hope you are feeling well today.

Sending you love ❤️

 

thanks LD. We aren't heading home until tomorrow. I just meant today was our last full day.  Well, we went out to the court and hit a few balls for about half an hour.  We laughed and laughed at how bad we were.  I really just want to stand on the court and see how it felt. I was a little boaty and my back was already sore so we really just messed around a little.  It went a WHOLE lot worse the last time I tried on Easter Day 2020 so I count this as progress. I definitely did not overdo it. I just listened to the ocean and tried to look at the ball! 

 

Hugs LD.

😂 it sounded such fun no matter how it went. I’m so glad you compared to last time and see your healing clearly. That is sooooooo rewarding. Well done my twin!

Safe return home to you.

🌹❤️🌹❤️🌹