12-24 months and up support group

[[jo...]]

JBen,

Thank you. It really has been very difficult. I'm sorry to hear that you're struggling so badly. I'm right there with you. Hopefully we're gonna turn the corner soon. I know I keep saying that.  But it's definitely possible because we've been struggling for so long.

 

Jordan,

Welcome to the group. I'm so sorry to hear of your suffering but it does sound like you've been making progress and you're able to work from home and you were able to get out and go to church.  Although, I know it isn't easy from what you were saying you have to have those cold packs close by. Swimming is a great idea.That sounds like some big progress to me. You're definitely moving forward.

 

Hugs!

 

LiveLife

 

LiveLife,

Thank you so much Livelife. You have always been such an encourager with your sweet and kind words.

I’m so sorry to hear of your husband’s health issue and I pray for renewed strength and health, and for the doctors over his care.  You have a lot of love and support here and I’m thinking of you and praying for your healing as well. This journey is so very difficult and when these life stresses come along it can be very difficult to see the other side of the waves. I pray that you will have a sense of peace and calm in the  days ahead. Sending you hugs and love. 🤗💕🙏

 

JBen,

I hope you are feeling better as well. I understand exactly where you are. We have to trust that these waves will subside. We’ve both been hit with the dental issues, with my extraction and your deep cleaning. I pray the burning and anxiety will cease in a mighty way.

Bless you. 💙

[[Li...]]

Jordan,

Thank you so much for your kind words and prayers.  I'm so happy to hear you think I've been encouraging. That makes me feel blessed. I think of you the exact same way. You always have a kind word and something positive to say.

 

Hugs!

 

LiveLife

[[Ga...]]

Hello all!  It is 5:15 a.m. here in the mid-Atlantic and I am wide awake after a miserable night!  I had my flu vaccine on Wednesday and thought I would be ok with it, although I had been having bad headaches since last Sunday……after a good Friday and Saturday.  My headache had lessened yesterday morning, but after lunch I had a sudden increase in head pain with an onset of nausea and chills.  I did not sleep well and woke up this morning in drenched sheets.  I called my neurologist yesterday morning because of the bad headache, and made an appointment for a phone call with him today as my headaches have ramped up recently.  My doctor took blood on Wednesday after my flu vaccine to check for Lyme and MACS.  I should get the results in the next few days.

 

I feel dreadful this morning and am sort of at my wits end, as others of you are.

 

Have a great weekend!

 

Hugs,

 

GG

 

[[...]]

Hey GG.  I am up with you this morning.  Woke up at 4 after a bad night of anxiety.  Ugh.  I know we will all feel better at some point.  Would like that to be sooner than later!!

[[Ga...]]

Yes, JBen, we need sooner than later…NOW!!!!

 

Hugs,

 

GG

[[Ga...]]

My doctor said I am having a reaction to the flu shot!

[[La...]]

Hi Ilona welcome to this thread! Glad to have you join us! Congrats on 1 year! 

 

Yes insomnia seems to be a popular nuisance in this community. I was just messaging another buddy on the zdrug thread who’s dealing with the same thing as you. From what I’ve read on here, it resolves with time just as all the symptoms do.

What have you tried so far to get more sleep? What helped? Are you taking anything?

 

I hope very soon you’ll start getting more sleep. As the brain heals this usually occurs spontaneously off and on. Then it becomes more often sleeping longer. Then a couple of nights in a row, etc. It’s very common. If you’d like to check out what helped others maybe you can read through the zdrug thread or sleep threads.

Best wishes and hope you began soon to get more sleep.

 

Hi LadyDen,

 

I take nothing! Just eat healthy, light exercise, fixed bedtimes. The first 3,5 months in acute was many 0-3 hr nights... Then had a window for sleep, lasted 2,5 months where it was still broken but much better (5 to 7 hrs often) and no hypnic stuff. Then came off birthcontrol pills and thats more than 6 months ago... sleep became bad again, not as bad as in acute, its just all over the place. Usually 2 to 3 ok nights (6ish broken hours) the rest anywhere from bad to real bad. SOmetimes suddenly 7 hour nights too (broken). Hypnic stuff came back aswell. In September I was finally getting a bit of a sleep window again, many nights in a row 6ish, less and more brief wakeups, less real bad nights, still hypnic stuff though. Since 2 weeks its been super bad again. Always had great sleep pre benzo

 

Feels like if Id be sleeping ok I would be pretty much back to normal (with some trauma from this all to process).

Ok. Yes many people said that when they’re sleep returns they feel so much better. With more time things will improve. A strict sleep routine is ideal. I also do a strict sleep and wake schedule. Best wishes!

[[La...]]

Good morning Yearlings! Hope everyone slept well. Big hugs!

 

I’d like to welcome Jordan to our group! Jordan, grab some hugs support and get some laughs as you tackle your healing journey with us! Glad to have you!

 

JBen I’m doing ok. Some days tougher than others. My new sound sensitivity is sometimes more intense than other days. My boatiness and ataxia are improving. I take each day as it is and do all I can to get through by way of my Heavenly Father. Thank you for asking how I’m doing. How have you been? Good to hear from you as well. Hugs

 

Live it’s sweet of you to check on everyone when you’re struggling. Are you feeling any better? Sending you big hugs and love.

 

GG you’re a warrior in this! I’m cheering you on to have good results and put your mind at ease. I know today is a little tough for you. So just rest today. I’m sure you need the extra relaxation. Love you bunches!

 

Helen I hope you’re still doing well. I hope today you can enjoy a nice walk with a smile on your face in the sunshine. Lots of love big hugs !

 

Becks hugs hugs hugs. Hope something makes you smile today.

 

Sandy, Lisa, Leann, Pashu, Jb…..thinking of you all. Sending love and hugs!

[[He...]]

Greetings to this lovely group.  I'm sorry to read of so much struggle for so many of us.  J Ben, GG, Lady Den, Live Life, Decatur, Heyllona, JordanJack, Becks, Leann, Fire, Jb and Deanna, I'm thinking of each one of you.  Decatur, I hope the hospital has released you and you are getting some relief and good guidance for your daughter.  GG, SOON you are going to settle from all the ABs and the flu shot and the infections.  I'm always cheering for you! J Ben, your continued suffering makes me sad for you. You're suffering just about the worst symptoms imaginable in my book.  Big hugs for you.  LiveLife, I know you are carrying you own heavy load and struggling and I have you in my heart.  ALL of you matter.

 

I'm doing reasonably well.  My 4 1/2 "good day" stretch ended but I'm still ok despite super loud tinnitus and a headache today.  I think the changes in weather probably contributed to it and am able to get on with things despite the pain which is a major step up for me.  I'm going to be leaving for the beach again tomorrow for about 8 days so I will likely not be on the board as much but wanted you all to know I'm holding you close and wishing for the best for all of us. 

 

Helen

[[La...]]

Greetings to this lovely group.  I'm sorry to read of so much struggle for so many of us.  J Ben, GG, Lady Den, Live Life, Decatur, Heyllona, JordanJack, Becks, Leann, Fire, Jb and Deanna, I'm thinking of each one of you.  Decatur, I hope the hospital has released you and you are getting some relief and good guidance for your daughter.  GG, SOON you are going to settle from all the ABs and the flu shot and the infections.  I'm always cheering for you! J Ben, your continued suffering makes me sad for you. You're suffering just about the worst symptoms imaginable in my book.  Big hugs for you.  LiveLife, I know you are carrying you own heavy load and struggling and I have you in my heart.  ALL of you matter.

 

I'm doing reasonably well.  My 4 1/2 "good day" stretch ended but I'm still ok despite super loud tinnitus and a headache today.  I think the changes in weather probably contributed to it and am able to get on with things despite the pain which is a major step up for me.  I'm going to be leaving for the beach again tomorrow for about 8 days so I will likely not be on the board as much but wanted you all to know I'm holding you close and wishing for the best for all of us. 

 

Helen

Helen I’m so jealous! Take me with you! 

Enjoy your beach trip my dear. You will be missed until you return.

[[He...]]

Greetings to this lovely group.  I'm sorry to read of so much struggle for so many of us.  J Ben, GG, Lady Den, Live Life, Decatur, Heyllona, JordanJack, Becks, Leann, Fire, Jb and Deanna, I'm thinking of each one of you.  Decatur, I hope the hospital has released you and you are getting some relief and good guidance for your daughter.  GG, SOON you are going to settle from all the ABs and the flu shot and the infections.  I'm always cheering for you! J Ben, your continued suffering makes me sad for you. You're suffering just about the worst symptoms imaginable in my book.  Big hugs for you.  LiveLife, I know you are carrying you own heavy load and struggling and I have you in my heart.  ALL of you matter.

 

I'm doing reasonably well.  My 4 1/2 "good day" stretch ended but I'm still ok despite super loud tinnitus and a headache today.  I think the changes in weather probably contributed to it and am able to get on with things despite the pain which is a major step up for me.  I'm going to be leaving for the beach again tomorrow for about 8 days so I will likely not be on the board as much but wanted you all to know I'm holding you close and wishing for the best for all of us. 

 

Helen

Helen I’m so jealous! Take me with you! 

Enjoy your beach trip my dear. You will be missed until you return.

 

Lady Den, if I could come and get you, I would!! I'm sure I'll be checking in from there but maybe not posting quite as much. I intend to limit my screen time.  HUGS to you friend.

[[Ga...]]

So scared as my head pain and burning is off the charts.  Jaws and teeth burning, too! 

[[...]]

GG - I also suffer so much from head pain and burning all over, inside and outside. It's torture, but we have to believe that it will go away again with time and that our brains are healing.

Lots of hugs, Jørgen

 

[[Ga...]]

Bless you, Jorgen , for your kind words!  I keep telling myself that but when the pain is so intense I can’t function at all!  I am a very active person and hate being bedbound!

 

How long do your head symptoms go on for at a time.  Mine started last Sunday and is still killing me!

 

GG

[[Ga...]]

OMYgosh, I just watched Kanoba on YouTube on the Benzo Coalition…..don’t remember the rest of it, but type in Benzo Coalition and she is the first video at the top!

 

She was great!

 

Gg

[[...]]

Hello to everyone!

 

I’m just checking in to see how my Buddies are doing. I’m sorry to read about all of the different challenges some are experiencing. I’m happy to read about those who are making progress in their recovery. What a journey this is for all of us.

 

I’m doing pretty good. I’m challenged almost daily with symptoms that are now tolerable. Some are physical and some mental. I had my 74th birthday last Saturday and I’m truly grateful to be alive and functioning well. It was questionable for a while!

 

Sending blessings of comfort, healing and love.🥰

 

Sandy

[[Ga...]]

Hi Sandy and a very Happy Birthday to You :happybday:  I am relieved to hear that you are up and about for the most part…oh how you and I have so longed for a return to a normal life!

 

I am a little down now with a bad headache, but am holding on for the day when they will disappear forever. 

 

Hugs and Love,

 

GG

 

 

[[Li...]]

LadyDen,

Glad to hear that you're having improvements. As for me I'm doing about the same. Still waiting to turn that corner or ride the wave to shore.

 

GG,

I'm so sorry that you're still suffering with those headaches and pain. Hopefully once you get a little more time passed since you got your vaccine and all the other treatments you're going to start feeling better.

 

I found the video of kanoba and she was great!

 

Sandy,

It's so good to hear from you. Sounds like you're doing so much better. I'm looking forward to that day myself.

 

Sending big hugs to all!

LiveLife

 

[[...]]

Bless you, Jorgen , for your kind words!  I keep telling myself that but when the pain is so intense I can’t function at all!  I am a very active person and hate being bedbound!

 

How long do your head symptoms go on for at a time.  Mine started last Sunday and is still killing me!

 

GG

 

Dear GG

Unfortunately, my head symptoms are constant and severe. Seldom, I get a little window of a few hours. My head is very bad, when I wake up - with nervepain in my body as well. I am 15 months off, but I hope it will get better at some point. Did you feel an improvement of your symptoms over time? I can see that you qre around one year ahead of me.

All the best, Jørgen

[[La...]]

OMYgosh, I just watched Kanoba on YouTube on the Benzo Coalition…..don’t remember the rest of it, but type in Benzo Coalition and she is the first video at the top!

 

She was great!

 

Gg

Wow I’ll check it out. Thanks!

I hope you get relief today my dear friend.

 

:smitten:

[[La...]]

Hello to everyone!

 

I’m just checking in to see how my Buddies are doing. I’m sorry to read about all of the different challenges some are experiencing. I’m happy to read about those who are making progress in their recovery. What a journey this is for all of us.

 

I’m doing pretty good. I’m challenged almost daily with symptoms that are now tolerable. Some are physical and some mental. I had my 74th birthday last Saturday and I’m truly grateful to be alive and functioning well. It was questionable for a while!

 

Sending blessings of comfort, healing and love.🥰

 

Sandy

Happy 74th birthday Sandy! 🎂🎈🎉❤️

 

So glad to see you’re feeling better with milder symptoms and start enjoying your life again. Yay! Also it’s always a pleasure to see you pop in to say hello and so sweet to check on us. Love you! ❤️

[[La...]]

LadyDen,

Glad to hear that you're having improvements. As for me I'm doing about the same. Still waiting to turn that corner or ride the wave to shore.

 

GG,

I'm so sorry that you're still suffering with those headaches and pain. Hopefully once you get a little more time passed since you got your vaccine and all the other treatments you're going to start feeling better.

 

I found the video of kanoba and she was great!

 

Sandy,

It's so good to hear from you. Sounds like you're doing so much better. I'm looking forward to that day myself.

 

Sending big hugs to all!

LiveLife

Live  You hang in there sweetheart. That corner is coming! Thank you. I’m not doing great but it’s improvements that are small but noticeable. My new sound sensitive is by no means fun. I just want so much for all of us to feel better and STAY that way!

I was thinking yesterday how far God has brought me. It’s amazing to look back to see the healing even though I’m not back to normal yet. I think of you very often. Lots of love to you! 🌹

[[jo...]]

Hi everyone,

I'm in yet another terrible wave with so much burning nerve pain on my head, shoulders and legs. It truly feels like a thousand fireants are biting me. Absolute torture and pain.

How can this be, that some days are somewhat less burning, and then the next day, the gates of the pain and relentless burning consume me? It makes no sense. I am broken with this insurmountable pain and torment.

Today starts month number 11, and I am so very discouraged.  I pray for mercy so many times, and yet, the suffering continues.  I pray we all find total restoration and healing soon.

I must expect a miracle. It's my only hope. Lord, please heal us all.

 

LadyDen

Your messages are always so kind and uplifting.  I  hope that you continue to feel much better, and that all the goodness that you offer us, comes back to you today 10 fold.

 

LifeLife

I hope you are having a good day today and that your fears are subsiding and that your dear husband is doing better as well. I am praying for both of you.

 

Sandy

Happy Birthday!! Bless you in your new year. Thank you as always for your continued support and light to all of us. You bring us hope for healing when moments show us otherwise. Bless you.

 

JB,

I am so sorry for that you are having the burning too.  It is inconceivable pain, with no escape. I understand the immense suffering that this horrible symptom brings.

I just don't understand why it is hanging on for so long. I am sending you healing thoughts and that the pain would cease.

 

GG,

I hope that the headache and pain is subsiding for you.  I am so terribly sorry for the suffering you too are having to bear.  This is so very hard, but yet you still come here to life us up. I pray you have a good day today and that the headache turns into a soft fluffy cloud.

 

Helen,

I hope you are enjoying the beach and the peace that the majestic waters bring.  I pray your wave gets pushed out to sea.  To think of God and his beautiful creation, we must trust that he will turn it around for each of us.

 

JBen,

I hope that you are feeling peace and comfort today. I am so very sorry for the recent waves and pain. I pray that your anxiety and fears lift and that peace and relief fill your being and that any discomfort would be released.

 

Bless everyone today.. may you feel my hugs and thoughts of goodness from afar. 

 

 

[[...]]

Jordanjack

Thank you for your kind words.

I am sorry to hear you also suffers from the burning. It's a horrible, horrible symptom. I have burning all over at the moment. Inside, outside and brain. It is my worst symptom besides headache, and what I feel as a broken brain. I surely hope for a miracle as well. Please, let us heal🙏

[[Li...]]

LadyDen,

Thank you so much for your kind words. I sure should be turning a corner soon.. It's just so hard to hang on and it is such a difficult road to travel. I'm sorry about your sound sensitivity I know exactly how that is.. I've had that on many occasions. I might be doing somewhat ok and then a sound can just set off my nervous system.

 

Jordan,

I'm so sorry that you're burning so much today and suffering. I know exactly what you mean one day it might seem like it's going to get a little bit better and then the next day is just worse than ever. It's so cruel. I'm suffering quite a bit today myself the fear is off the charts and I have a headache as well as a lot of side pain. Here's hoping we both start feeling better very soon. I want to congratulate you on your 11 month anniversary. That's definitely an accomplishment.  Thank you for the encouraging words and prayers.

 

JB,

I'm so sorry to hear about your suffering as well. I know that burning is just miserable. I sure hope you get a break soon.

 

Sending warm love and healing hugs to all,

 

LiveLife