12-24 months and up support group

[[La...]]

Hi Lisa and my other buddies!  I am with Lisa in the frustration of having waves this far out!  I will be at 39 months or June 28th, and still having some headaches.  The up and down of them is disheartening as I have had some great windows from them. 

 

Lisa and I both were ready to write our success stories last May, so good reason to express some doubt in healing.  Not losing hope, though!!!!!!

 

Hardy, wahoo for you!  And, LadyDen, you have shown us how to weather the bad times with infinite grace and positivity.  I am sure your new friend is feeling blessed to have you!

 

Helen, my wrist is locked so tight with yours and we will continue holding each other up til the cows come home….or til Bill Bailey comes home.

 

LiveLife, I am not going anywhere without you!  You have the strength to get through your recovery, and you will not be left behind with so many supporting you!

 

For those buddies still having the awful head pressure, it does get better!  I have had weeks with no head symptoms, so I know the brain can heal.  Mine seem to act up when I stress either physically or mentally.  Keep the faith!

 

JBen, you are in a special class of never give up or give in warriors.  I have also had several setbacks from steroids and antibiotics, and, in fact, my recent uptick in headaches may be the result of having taken an antibiotic in April for ten days! 

 

So here we all are…..good news and some not so good news.  But, we are still here supporting each other, knowing full well that our place in the sun is coming!!!

 

Hugs,

 

GG

GG  thanks so much! Yes sometimes there a step back in this healing dance even far out. Unfortunately it sucks but it is NOT evidence of healing undone. Matter of fact it is some real fine tuning going on. I’ve had those headaches off and on and wow they are in a class of their own. Mine last the entire day. I go to bed and the next morning it’s gone. About once a month this happens.  Crazy symptoms have a mind of their own! It’s like some of these are teasing me saying “ HA! You thought I was gone! “ They pay a short visit then gone for months. BUT good news is we have gotten over the worst of times. We are warriors in our own right! I’m so damn proud of us all.

My love to you always! Keep your head up. ❤️🤗

[[Li...]]

LadyDen,

 

Thank you for your kind words. This vertigo has been really unbearable especially when it wakes me up spinning in the middle of the night and I can't go back to sleep I have to sit in my living room and it's horrible! I wish it would finally pass it's headed towards 6 weeks now. And it makes me very nauseous. I would call it a vertigo wave. And I'm really hoping it's going to end soon.  I have other symptoms that are pretty horrible as well. So I'm hoping I'm nearing a path to windows.

 

I'm so glad to hear you've improved as much as you have and congratulations on your 3 years coming up.

 

Hugs!  LiveLife

[[La...]]

Thank you Live. I appreciate your message. Yes I’ve had the nausea with mine as well. But in time it will settle down. Keep telling yourself that since it started then it will end…the hard part is waiting it out. I do understand how you feel about it because mine was SO bad that it had me bedridden/ housebound for SO long. It was coupled with pulling down sensation. Terrible!  It will make you question if it will ever get better or go away. That’s normal to think because it’s so awful and last a long time for some people. I want you to keep your mindset on me. WHY? Because I want you to see how far I’ve come dealing with that boaty stuff. I want you to know that you won’t be some special rare case that it won’t improve and then go away. It will ! Look at me now….walking outside with no problem, out of bed mostly all day anytime I want, I’ve started driving again, I can take a bath anytime I want, etc. YOU WILL HEAL in your own course. 

I found myself talking to my symptoms so many times when they rev up 😂 you’d think I was crazy! I’d say…

Well, hello you little party crasher! I know you’re here to let me know you’re doing some work but can you bring it down a notch or two! I need to do this or that. Come on now, work with me! Chill out! Stop that! You’re just a symptom. I’m going to ignore you now.”

Then I distract myself with something I enjoy while laying down. These symptoms SUCK! But we have to do what we can to not let them get the best of us to the point of ruining our day or sending us down the depress road. It will ease up then come back to a rougher level then ease up….then gone for good 

Be encouraged my dear!

❤️🤗 love and hugs

[[De...]]

Hi everyone,  these sx are so scary dodr no emotions my head and I doing something wrong.  Will  I be ok I'm scared. It stats this way

[[Ma...]]

Is it really dpdr?

 

I am not sure

 

My sisters friend had this after they did surgery on his brain to remove tumor

[[De...]]

Yes I think so. It def fits  the description.  Its so scary

[[Li...]]

LadyDen,

 

Thank you for the words of encouragement. It sounds like you were able to lay down and do something or watch TV. Is that right? That's great if you could. For me I'm actually worse when I lay down my head spins more and I feel like I'm gonna throw up for sure. Although sitting up I can get that way too but the laying down is much worse. I sure wish it would take its leave I've had it throughout the whole process but it's never been this intense. So glad to hear you're able to do as much as you are sounds like you're getting on with life I so look forward to that day.  I'm having other symptoms too lots of tingling on the left side of my body, terrible chest pressure, tinnitus, mental symptoms that are horrible they come and go the fears still with me it comes and goes now but it wakes me in the morning with intensity and sometimes it's there through the night with the vertigo, side pain etc. It's all just been a lot more than ever.  I'm literally in tears right now. It's so scary to think of how much longer this can go. I'm really hoping that this is a good sign and soon I will be turning a corner and getting some relief.  Hugs!  LiveLife

[[de...]]

Checking in!  Hope y'all are hanging on tight.  LiveLife I am especially thinking of you.  Just wanted to run this by everyone.  Right now I am having one good day and then one bad day, repeat.  The good days are like I am almost healed, the bad days are absolutely horrible (much like acute).  I think I have mentioned this, but I am also starting to dream again, my GI symptoms have calmed down.  At 38 months out I am hopeful there is healing going on, but this every other day cycle is brutal.

 

Would love to hear thoughts.

 

Lisa

[[La...]]

LadyDen,

 

Thank you for the words of encouragement. It sounds like you were able to lay down and do something or watch TV. Is that right? That's great if you could. For me I'm actually worse when I lay down my head spins more and I feel like I'm gonna throw up for sure. Although sitting up I can get that way too but the laying down is much worse. I sure wish it would take its leave I've had it throughout the whole process but it's never been this intense. So glad to hear you're able to do as much as you are sounds like you're getting on with life I so look forward to that day.  I'm having other symptoms too lots of tingling on the left side of my body, terrible chest pressure, tinnitus, mental symptoms that are horrible they come and go the fears still with me it comes and goes now but it wakes me in the morning with intensity and sometimes it's there through the night with the vertigo, side pain etc. It's all just been a lot more than ever.  I'm literally in tears right now. It's so scary to think of how much longer this can go. I'm really hoping that this is a good sign and soon I will be turning a corner and getting some relief.  Hugs!  LiveLife

Yes I was able to lay down and it made mine better. So opposite of yours. Yes you’re fine tuning in a more intense way. I see it as a good sign. I recall thinking I’ve gone back to earlier days but time proved I was wrong! It was just intense healing that started rapidly repairing…unfortunately we will feel that. My advice is to just go with the flow of it. If it’s more comfortable sitting up then do that. Make yourself a nest with comfortable bedding and things to keep busy. With all of your intense symptoms something’s going to give real soon. I feel it! Hang in there.

Good news for me, I have driven my car a little further yesterday. My brain immediately reacted increased my boatiness and unbalance. But I went with the flow and gently proceeded. Afterwards I laid down for few hours. I felt so happy that it was successful. So sometimes, we have to do the little things to remind ourselves that we are doing better than we think. It’s like a foggy day in a field of flowers….that fog ( the symptoms) hide the beautiful flowers ( the healed you). But that fog HAS to disappear eventually and then you’ll see all those flowers was there the whole time! 

Live, you are on your way!

[[La...]]

Checking in!  Hope y'all are hanging on tight.  LiveLife I am especially thinking of you.  Just wanted to run this by everyone.  Right now I am having one good day and then one bad day, repeat.  The good days are like I am almost healed, the bad days are absolutely horrible (much like acute).  I think I have mentioned this, but I am also starting to dream again, my GI symptoms have calmed down.  At 38 months out I am hopeful there is healing going on, but this every other day cycle is brutal.

 

Would love to hear thoughts.

 

Lisa

Hello Lisa! I’m sorry to hear about your new pattern. But I will say the word on the street is that is a definite sign of your end of this!  Unpleasant as it is….it’s doing some good healing. I know it sucks! I’ve also had those “ sputters” of symptoms come out of nowhere sometimes. Then back to doing pretty good. Back and forth every few days to a week. So yeah…I understand. 

The brain is going through itself and “ finding” areas that are not up to par enough. So it jumps in strong to work on it….that’s my opinion of what’s going on. Like finding a place and saying that’s not good enough or that’s not how this is supposed to be so let’s fix this! Fine tuning! From what I read it’s usually done in a rapid cycling fashion. Work on it…take a break…repeated in quick more intense spurts. I’ve talked to other BBs who experience this at their end around 3 year milestone. They did say it was AWESOME when it finished cycling. They healed completely or very close to it to the point that the remaining symptoms or waves was just noticeable and annoying…a breeze!

[[de...]]

Thanks, Lady Den.  You are always so encouraging!  You seem to definitely be on the mend.  So glad you are able to drive a little bit!  That is great progress.  I do think there is a lot of fine tuning going on with me.  Also, every year around June/July I have a pretty significant wave.  Isn't that just crazy.  June 2020 is when my symptoms really started (after getting off Ambien March 2020), so it is like on my anniversary month, I experience a tsunami.  What in the world?  Our brains are such a mystery.

 

Hope you are having a decent day.  Thanks for being such a great cheerleader!

 

Lisa

[[De...]]

Hi everyone, 

Is it normal to have dpdr and be numb everywere even your head . Mine seems worse. Im at 20 months my screen on my computer looks fake. Am I doing something wrong. 🥺

[[Pa...]]

Thank you Lisa, LiveLife, LadyDen. Happy to see some of you are experiencing improvement! We gotta keep climbing

[[Ma...]]

Are there people here with severe dystonia ?

 

( all muscles head to toe, tighten up,

My left body is in chronic dystonic state and the muscles feel like concrete and visibly much more developed that the other side.

My arms feel like made of concrete.

My hands are so stiff I cannot botten op , hardly type ,

Mouth open , tongue stiff

Back and shoulders 24/7 concrete feeling.

In month 5 I had small improvements in this and now I am getting worse everyday

 

I am desperate

[[La...]]

Thanks, Lady Den.  You are always so encouraging!  You seem to definitely be on the mend.  So glad you are able to drive a little bit!  That is great progress.  I do think there is a lot of fine tuning going on with me.  Also, every year around June/July I have a pretty significant wave.  Isn't that just crazy.  June 2020 is when my symptoms really started (after getting off Ambien March 2020), so it is like on my anniversary month, I experience a tsunami.  What in the world?  Our brains are such a mystery.

 

Hope you are having a decent day.  Thanks for being such a great cheerleader!

 

Lisa

Every June marks another year for me. In 4 days I’ll be 3 years! Yay! And what a hell of a journey it’s been. So thank you for your congrats. I congratulate you as well. You’ve come a long way too. I get those waves you’re speaking of every month around the 20th which is when I turn another month. Yes it’s crazy! I’m like….how does my brain know I’ve turned another month? 

Just like you I’m saying what in the world! But…good news is that those turn a month waves for me are much milder and so are my remaining symptoms. Girl , I’m really enjoying walking out to my car, cranking it, putting it in drive and go a short distance and back. It is amazingly wonderful after all this time.

And yes we are fine tuning. I say ok so be it since it is necessary 

Enjoy your weekend my friend. Always great to hear from you.

Big hugs 🤗

[[La...]]

Hi everyone, 

Is it normal to have dpdr and be numb everywere even your head . Mine seems worse. Im at 20 months my screen on my computer looks fake. Am I doing something wrong. 🥺

That is a normal symptom. 

 

[[La...]]

Thank you Lisa, LiveLife, LadyDen. Happy to see some of you are experiencing improvement! We gotta keep climbing

yep climb together!

Big hugs to you my dear. These are symptoms….they’re not the real us! The real us is emerging from its cocoon. Then we’ll be the most beautiful butterfly. Free to reach heights we’ve never been 

We are getting wings!

[[La...]]

Are there people here with severe dystonia ?

 

( all muscles head to toe, tighten up,

My left body is in chronic dystonic state and the muscles feel like concrete and visibly much more developed that the other side.

My arms feel like made of concrete.

My hands are so stiff I cannot botten op , hardly type ,

Mouth open , tongue stiff

Back and shoulders 24/7 concrete feeling.

In month 5 I had small improvements in this and now I am getting worse everyday

 

I am desperate

Am so sorry sweetheart. Let time do repairs. Until then you have our love and support. Hugs 🤗

[[Ma...]]

Thanks you lady den❤️

 

I just read your private message

Thank you so much for your encouraging words

 

I am too much in hell atm to write long message back but I wanted to thank you for reply xx

[[Li...]]

LadyDen,

 

Thank you so much for your encouraging words. I sure hope that what's going on is very significant.  It has definitely been more intense with all the symptoms. So I'm hoping to see some changes coming soon. Trying so hard to be positive and hang on. So good to hear that you're able to get out and walk and do some driving and that your life is coming back to you. Very encouraging! I'm so looking forward to that day. For now I'm just trying to make the most of getting through an hour at a time because it's been so hard. Thank you again. Sending you big hugs!  LiveLife

[[jo...]]

Hi everyone,

 

I hit month 18 this week.    and to think that I was disillusioned to think I would heal in 6 months.

 

My symptoms continue to surge with the very painful burning brain and body. New symptoms are terrible muscle pain like knives twisting my tissue, bad hip pain and bone pain in several places that’s making me think I have fibromyalgia or RA since I’m older, along with awful chemical anxiety and fear. The shower still feels like needles hitting my skin.  :'(

 

I went to a neurologist this week just to make sure nothing else is going on. He performed basic coordination and reflex tests and said everything is solid. I will be getting a nerve conduction test with him in two weeks.

 

My CNS is like a symphony that is so out of tune, lost in the composition and dissonant, with a conductor that can’t even read a music score.

 

I’m hypersensitive to most everything and thinking about starting to work again after being severenced in December brings me great stress. I’ve lost all confidence in myself both personally and professionally. 

 

In thinking about doing my job again terrifies me! How am I going to get it together so I can work? I’m just overwhelmed with the awful chemical anxiety and fear. I read a job description yesterday and panicked thinking how overwhelming it all was, and so scared that I won’t be able to work again at the same capacity before BWD.

 

I have meltdowns thinking I’m never going to heal because I’ve never had a window, not one day without the intense burning, and seem to be worsening. Everyday is a battle. How is it possible to be burning this badly and getting new painful symptoms so far out? I try to speak positively over myself but my amygdala just rolls it’s eyes. I don’t want to be left behind. I’m alone so it makes all this so difficult and feeling so alone. I’m so grateful for my friends here that encourage me.

 

I really need this intense anxiety, fear and pain to leave.  I’m praying daily that my miracle will come, oh may relief come soon.

 

LadyDen, Helen, GG, Pashu, JBen, Decatur, Jorgen, FeelingFire, Hardy, Dehytq, LiveLife, Jorgen, Matcha, and others I am thinking of you.

 

I’m happy for those that are doing much better. So wonderful! For those of you still in the tulmultous waves and mountainous journey, I pray relief, peace  and healing will be yours soon.

 

I’m sending everyone big hugs and warm thoughts. 🤗❤️

[[De...]]

Thank you ladyden znd everyone here.  This one freaks me out I had a meltdown . You czn hardly manage these sx.

 

I'm sorry Jordan jack you will be ok. You are going to heal. We all think we arent but we will. It just takes time. The wd just does this it can feel worse but still healing. I'm 20 months and I say those same things. Your not alone we are hesr for you. I always try to think tomorrow will be better.  Sending you hugs and healing energy. 🤗

[[La...]]

Hi everyone,

 

I hit month 18 this week.    and to think that I was disillusioned to think I would heal in 6 months.

 

My symptoms continue to surge with the very painful burning brain and body. New symptoms are terrible muscle pain like knives twisting my tissue, bad hip pain and bone pain in several places that’s making me think I have fibromyalgia or RA since I’m older, along with awful chemical anxiety and fear. The shower still feels like needles hitting my skin.  :'(

 

I went to a neurologist this week just to make sure nothing else is going on. He performed basic coordination and reflex tests and said everything is solid. I will be getting a nerve conduction test with him in two weeks.

 

My CNS is like a symphony that is so out of tune, lost in the composition and dissonant, with a conductor that can’t even read a music score.

 

I’m hypersensitive to most everything and thinking about starting to work again after being severenced in December brings me great stress. I’ve lost all confidence in myself both personally and professionally. 

 

In thinking about doing my job again terrifies me! How am I going to get it together so I can work? I’m just overwhelmed with the awful chemical anxiety and fear. I read a job description yesterday and panicked thinking how overwhelming it all was, and so scared that I won’t be able to work again at the same capacity before BWD.

 

I have meltdowns thinking I’m never going to heal because I’ve never had a window, not one day without the intense burning, and seem to be worsening. Everyday is a battle. How is it possible to be burning this badly and getting new painful symptoms so far out? I try to speak positively over myself but my amygdala just rolls it’s eyes. I don’t want to be left behind. I’m alone so it makes all this so difficult and feeling so alone. I’m so grateful for my friends here that encourage me.

 

I really need this intense anxiety, fear and pain to leave.  I’m praying daily that my miracle will come, oh may relief come soon.

 

LadyDen, Helen, GG, Pashu, JBen, Decatur, Jorgen, FeelingFire, Hardy, Dehytq, LiveLife, Jorgen, Matcha, and others I am thinking of you.

 

I’m happy for those that are doing much better. So wonderful! For those of you still in the tulmultous waves and mountainous journey, I pray relief, peace  and healing will be yours soon.

 

I’m sending everyone big hugs and warm thoughts. 🤗❤️

:hug: :hug: Jordan I just had to hug you dear sweetheart! I’m so sorry that your mountain you are climbing is so steep and high up. But you keep going because there is a plateau half way up there and it’s a beautiful relief. Once you reach it, the rest of the way to the top is so much easier. At month 18, I think you right at it 

Congratulations on making it 18 months. Yay!

You and those in rougher waves please hold on to your healing. It’s in the making so there’s no way around feeling like crap. Say it to yourself everyday…it’s temporary and I’m healing! Because you are and it is!

I know it’s so hard to get up everyday feeling like crap warmed over. There’s no way through except to go through. We love and support each other with wrists locked! 🤝

You are a warrior! You are strong! You will make it!

[[La...]]

Thank you ladyden znd everyone here.  This one freaks me out I had a meltdown . You czn hardly manage these sx.

 

I'm sorry Jordan jack you will be ok. You are going to heal. We all think we arent but we will. It just takes time. The wd just does this it can feel worse but still healing. I'm 20 months and I say those same things. Your not alone we are hesr for you. I always try to think tomorrow will be better.  Sending you hugs and healing energy. 🤗

I love what you said….attitude can go along way in this.

Tomorrow might be the day you get better. Turning that corner! 

That’s the way to think. Stay positive although as you said it’s hard to do.

Sending love and healing wishes.

[[La...]]

LadyDen,

 

Thank you so much for your encouraging words. I sure hope that what's going on is very significant.  It has definitely been more intense with all the symptoms. So I'm hoping to see some changes coming soon. Trying so hard to be positive and hang on. So good to hear that you're able to get out and walk and do some driving and that your life is coming back to you. Very encouraging! I'm so looking forward to that day. For now I'm just trying to make the most of getting through an hour at a time because it's been so hard. Thank you again. Sending you big hugs!  LiveLife

I think of you and all here very often. I know you’re tired of this. I am too! If I could,I’d wave a magic wand and just heal ALL of you! Starting with myself. You are so kind and I DO believe that you will break through soon. You hold on to us others that have made it to the less dense forest. We are waiting on you to join us.

I’m the one yelling loud in the distance “ Come on Live! You can do this! Keep coming forward!”