12-24 months and up support group

[[La...]]

Deanna,

 

Your situation is so encouraging!  Thank you for posting and I'll pass on your comments to GG.  I'm sorry you have the lady part thing. I hope that moves on soon.  I really appreciate hearing how well you are doing.  I'll have 14 months on Aug 1 so not too far behind you.  Is that right? You have about 18 months or so?  Please correct me if I'm wrong.

 

Lady Den,

 

Did you have any more spinning last night or this morning? I surely hope not!! 

 

 

As for me, I'm a little better than yesterday. Yesterday was no good  .  My husband and I appear to have colds so I'm thinking that may have thrown me off.  Also, I'm still testing my boundaries to see how much I can or cannot do at this point with walking and yoga, etc.  I'm keeping it pretty minimal and light but happy to be able to do a little more movement. 

 

I hope all of you have a good weekend.

 

Helen

Yes last night once and this morning once.  :'(

I slept well once I drifted off. In a wave now. Rough day so far.

How are you?Plans for today?  It’s good that you’re testing your walking and see what else you can handle. I’m hoping today gets better for me too so I can go for a short walk. Outside would be nice but we have rain forecast for today and maybe tomorrow. But I have the breezeway so we will see. This spinning sucks!

Love and hugs

[[He...]]

Oh LD! I'm so disappointed to hear that the spinning continues and the other wavy symptoms.  It's so wrong!! Maybe just maybe you'll be able to sneak outside today between rain showers if your decent feelings coincide in a timely way.

 

I'm a little better than yesterday but I definitely have a cold.  Hubby brought it home from work. I'm guessing that is what caused me to be so couch bound yesterday.  Not terrible today but not great. Just medium. That's me...medium girl.  Haha. 

 

I want you to be GOOD! It's time.

[[...]]

Nice to meet you medium girl 

 

Gosh LadyD.  Sorry you are struggling with the spinning!

 

So nice to hear from you Sandy!

[[De...]]

Deanna,

 

Your situation is so encouraging!  Thank you for posting and I'll pass on your comments to GG.  I'm sorry you have the lady part thing. I hope that moves on soon.  I really appreciate hearing how well you are doing.  I'll have 14 months on Aug 1 so not too far behind you.  Is that right? You have about 18 months or so?  Please correct me if I'm wrong.

 

Lady Den,

 

Did you have any more spinning last night or this morning? I surely hope not!! 

 

 

As for me, I'm a little better than yesterday. Yesterday was no good  .  My husband and I appear to have colds so I'm thinking that may have thrown me off.  Also, I'm still testing my boundaries to see how much I can or cannot do at this point with walking and yoga, etc.  I'm keeping it pretty minimal and light but happy to be able to do a little more movement. 

 

I hope all of you have a good weekend.

 

Helen

 

Hi Helen - Tomorrow marks 2 YEARS off the poison!  You are not too far behind me indeed.  I can really say that the last 6 months I saw real improvement.  I had a rough go of it around 18months off and then started really paying attention to my gut health.  I have some sort of probiotic food each day, drink plenty of water and eat clean, clean, clean.  No sugar or wheat, whole foods as much as possible. 

 

This experience has really shaken my belief in western medicine.  I've been following Dr. Mark Hyman on podcast and he espouses  the functional medicine approach.  So much good general health promoting benefits in the topics he covers.  I'm now so committed to living the healthiest life I can in my remaining years (LOL)....

 

LadyDen, so interesting that you don't get the spinning every time you lay down - that really speaks to the transient nature of the shifting going on.  I am praying that your spinning resolves as quickly as it did for me. 

 

 

[[Li...]]

Lisa,

I'm so sorry I didn't post yesterday having a horrific day. More of the same today but I thought I would post anyway. I'm glad you had a friend to sit with you, I hope it helped. Hope you are doing better today.

 

LadyDen,

I'm so sorry to hear about your vertigo problem. That really is horrible I have had some bouts of that in the past and I know what it feels like. I sure hope it passes for you soon.

 

Sandy,

Wonderful that you're able to get on vacation with your family but I'm so sorry you had an attack of afib. Hopefully it was just the Heat and overdoing it a bit and that won't happen again.

 

Dea,

So happy to hear you're doing as well as you are. I look forward to that day.

 

Helen,

It sounds like you're hanging in there and that is great. Hope your cold passes soon.

 

Hello to all my benzo Buddies, I am really struggling and hoping for a break soon still barely hanging on.

 

Hugs!

 

LiveLife

[[de...]]

LiveLife:  Gosh, you and I are in the same boat.  Not sure what to say or do.    I just keep thinking we are going to turn the corner.  Has your day today gotten any better?  I have now gotten a group of my friends together who are going to help "care" for me for the next few weeks.  They are going to bring food, text me funny things, call me, and come visit.  I am so very, very blessed to have great friends in my life.  I have lost 10 pounds in the last three weeks, and I really need to up my nutritional game.  My husband is absolutely clueless and every time I go through a big wave, he says that if I would just walk more I would feel better.  He said today that I should get up every morning, get dressed, put make up on, and go somewhere.  That is his answer to this.  Are you kidding me???  People just don't understand.    Anyway, I am praying you have a better day tomorrow. 

 

LadyDen:  Dizziness!!!  That is the worst.  I have not had to deal with dizziness, but I know it can be really hard.  I was reading one of Baylissa's books last night and she had a lot of dizziness during her last wave. 

 

Sandy:  So good to hear from you!  Sorry about the AFib incident.  I bet it is a one off.    Did you say your last wave was 8 months long??  That is a long time.  Are you back in Oklahoma yet?  Where the wind comes sweeping down the plains. 

 

Deanna:  Glad you are doing well!  Keep it up.  Don't be a stranger.  We need your encouragement.

 

Helen:  Hope you are feeling better!  Summer colds are no fun.  They can hang around a while.

 

I am thinking about out dear GG!  Also thinking about Pashu, Foxclover, LeeAnn (where are you?), JBen, Bess, and all the rest of you fellow sufferers.

 

I have an appointment with Chris Paige on Tuesday.  He is an advisor at the Benzodiazepine Information Coalition and a therapist who has gone through this.  It is always good to talk to him.  He is the one who told me it would probably be three years before I was totally healed.  I didn't want to hear that at the time, but he might be right.  He said it would not be horrible the entire three years, just a lot of ups and downs with things calming down quite a bit in the third year.  So far the third year has been a little rough!  Ha!  I am hoping and praying that this wave might be my swan song.  We shall see.

 

What in the world would we do without each other?  I shudder to think! 

 

Hope everyone is able to get some sleep tonight.

 

Lisa 

 

 

[[...]]

Decatur, I will be back in Oklahoma tomorrow. My last wave was intense for about 4 months, but on and off for 8 months.

[[Be...]]

LadyDen, those spinning episodes sound like mini seizures.

[[De...]]

LiveLife:  Gosh, you and I are in the same boat.  Not sure what to say or do.    I just keep thinking we are going to turn the corner.  Has your day today gotten any better?  I have now gotten a group of my friends together who are going to help "care" for me for the next few weeks.  They are going to bring food, text me funny things, call me, and come visit.  I am so very, very blessed to have great friends in my life.  I have lost 10 pounds in the last three weeks, and I really need to up my nutritional game.  My husband is absolutely clueless and every time I go through a big wave, he says that if I would just walk more I would feel better.  He said today that I should get up every morning, get dressed, put make up on, and go somewhere.  That is his answer to this.  Are you kidding me???  People just don't understand.    Anyway, I am praying you have a better day tomorrow. 

 

Lisa

 

 

Lisa - my husband is the EXACT same way!  During this entire experience (going on 4 years now because I was so ill for years before I got off the poison) he would say such things.  I've spent so much time trying to figure him out in that respect and I've come to realize that he is a very (naturally) anxious person.  He worries excessively, and he shows his worry by snapping at others when he impatient with a situation.  When my daughter was growing up and she fell and hurt herself he would actually yell at her!  Until I pointed such behavior out and started yelling back of course.

 

Well it's hard to change innate behavior, so I've given up trying, but I had to come to the realization that he wasn't good for me while I was recovering.  I stopped sharing my situation with him, which alleviated me from having to hear those kinds of comments.  Such comments infuriated me    I still get ticked off.  I had to dig deep and find resolve to keep going all by myself.  My sister-in-law was very empathetic toward my issues and always listed with concern and patience.  It made me realize how different people are in situations like these.

 

Anyway I really sympathize with you about the hubby thing.  It really has changed our relationship and I'm not sure how to move past it or improve it.  We probably need couples therapy but I'm not interested in that right now.  I'm just finding my new self after all this mess.  When I get angry at him I go for a short drive and scream like hell in the car.  It helps.

[[De...]]

LadyDen, those spinning episodes sound like mini seizures.

 

Oh geez, I'm not sure I agree with that.  To me the dizziness seems very likely to be a new flavor of the previous vestibular  symptoms. 

 

Are you feeling any better today LadyDen?

[[de...]]

LadyDen:  I am not a doctor, but I am sure your dizzy spells are not mini seizures!  Just changes going on with your vestibular system!  Hoping the dizziness passes soon! 

[[le...]]

3.5 years off zopiclone, and 2 years off AD’s today. Really thought would have recovered by now. Not great but not bad, sort of middling trying get past that poison goblin in my brain stopping full recovery. Think he’s related to that moody window fairy. But compared to some of you struggling, realise could be lot worse🙄

[[He...]]

Deanna,

 

Your situation is so encouraging!  Thank you for posting and I'll pass on your comments to GG.  I'm sorry you have the lady part thing. I hope that moves on soon.  I really appreciate hearing how well you are doing.  I'll have 14 months on Aug 1 so not too far behind you.  Is that right? You have about 18 months or so?  Please correct me if I'm wrong.

 

Lady Den,

 

Did you have any more spinning last night or this morning? I surely hope not!! 

 

 

As for me, I'm a little better than yesterday. Yesterday was no good  .  My husband and I appear to have colds so I'm thinking that may have thrown me off.  Also, I'm still testing my boundaries to see how much I can or cannot do at this point with walking and yoga, etc.  I'm keeping it pretty minimal and light but happy to be able to do a little more movement. 

 

I hope all of you have a good weekend.

 

Helen

 

Hi Helen - Tomorrow marks 2 YEARS off the poison!  You are not too far behind me indeed.  I can really say that the last 6 months I saw real improvement.  I had a rough go of it around 18months off and then started really paying attention to my gut health.  I have some sort of probiotic food each day, drink plenty of water and eat clean, clean, clean.  No sugar or wheat, whole foods as much as possible. 

 

This experience has really shaken my belief in western medicine.  I've been following Dr. Mark Hyman on podcast and he espouses  the functional medicine approach.  So much good general health promoting benefits in the topics he covers.  I'm now so committed to living the healthiest life I can in my remaining years (LOL)....

 

LadyDen, so interesting that you don't get the spinning every time you lay down - that really speaks to the transient nature of the shifting going on.  I am praying that your spinning resolves as quickly as it did for me. 

 

 

 

Good morning Deanna,

 

Thanks for your response.  Congratulations on your 2 year mark today!!! How wonderful.  I'm so grateful to hear you are doing better. It truly gives me hope. I also don't eat gluten and am trying to minimize sugar. I have a pretty specific list of foods I'll eat and won't eat processed food at all.  I figure anything I can do to minimize the strain on my body is a good thing.  Dr. Mark Hyman is very interesting and really on to a lot of good approaches.  I'm going to keep focusing on gut health too thanks to your reminder.  It's our second brain!  Enjoy your 2nd anniversary and thanks again for the encouragement.

 

Helen

[[De...]]

3.5 years off zopiclone, and 2 years off AD’s today. Really thought would have recovered by now. Not great but not bad, sort of middling trying get past that poison goblin in my brain stopping full recovery. Think he’s related to that moody window fairy. But compared to some of you struggling, realise could be lot worse🙄

 

Wow Leann we have the same "off poison" anniversary.  I still have a ways to go myself Leann but as you say it can be alot worse.

Happy Anniversary :-)

[[De...]]

Deanna,

 

Your situation is so encouraging!  Thank you for posting and I'll pass on your comments to GG.  I'm sorry you have the lady part thing. I hope that moves on soon.  I really appreciate hearing how well you are doing.  I'll have 14 months on Aug 1 so not too far behind you.  Is that right? You have about 18 months or so?  Please correct me if I'm wrong.

 

Lady Den,

 

Did you have any more spinning last night or this morning? I surely hope not!! 

 

 

As for me, I'm a little better than yesterday. Yesterday was no good  .  My husband and I appear to have colds so I'm thinking that may have thrown me off.  Also, I'm still testing my boundaries to see how much I can or cannot do at this point with walking and yoga, etc.  I'm keeping it pretty minimal and light but happy to be able to do a little more movement. 

 

I hope all of you have a good weekend.

 

Helen

 

Hi Helen - Tomorrow marks 2 YEARS off the poison!  You are not too far behind me indeed.  I can really say that the last 6 months I saw real improvement.  I had a rough go of it around 18months off and then started really paying attention to my gut health.  I have some sort of probiotic food each day, drink plenty of water and eat clean, clean, clean.  No sugar or wheat, whole foods as much as possible. 

 

This experience has really shaken my belief in western medicine.  I've been following Dr. Mark Hyman on podcast and he espouses  the functional medicine approach.  So much good general health promoting benefits in the topics he covers.  I'm now so committed to living the healthiest life I can in my remaining years (LOL)....

 

LadyDen, so interesting that you don't get the spinning every time you lay down - that really speaks to the transient nature of the shifting going on.  I am praying that your spinning resolves as quickly as it did for me. 

 

 

 

Good morning Deanna,

 

Thanks for your response.  Congratulations on your 2 year mark today!!! How wonderful.  I'm so grateful to hear you are doing better. It truly gives me hope. I also don't eat gluten and am trying to minimize sugar. I have a pretty specific list of foods I'll eat and won't eat processed food at all.  I figure anything I can do to minimize the strain on my body is a good thing.  Dr. Mark Hyman is very interesting and really on to a lot of good approaches.  I'm going to keep focusing on gut health too thanks to your reminder.  It's our second brain!  Enjoy your 2nd anniversary and thanks again for the encouragement.

 

Helen

 

Thanks so much Helen 

[[Pa...]]

Congrats on the anniversaries, Deanna & leann.

 

Hopefully the spinning gets better soon, LadyDen.

 

I had a week off work and it felt a bit comforting, but tomorrow it's go time again and my anxiety levels are through the roof, and they are whenever I'm on the job. I decided to go for a light run today, and plan to also add meditation into the fold as an attempt to curb my anxiety levels. Running used to be my therapy, calming and soothing me, but it's where I got hit with the head pressure & pain that I still carry to this day and it's of course not very evident when fighting the symptoms we are. But for now, I need to try again and keep the sessions very light. I'm spiraling out of control and this is just about the only thing I realistically can do. My brains such a jumbled mess. Read the forum's repository earlier and that comforted me a little at least, with the GABA & glutamate imbalance causing a lot of what I feel.

[[Li...]]

Dea,

I want to congratulate you on your 2-year mark. And it sounds like you're really moving in the right direction and doing well. Very encouraging.

 

Lisa,

Yes it really does seem like you and I are in the same boat. I am suffering so intensely. This fear is off the charts keeping me awake and terrifying me during the day. Sometimes in the evening I do get some breaks but it's not much. My sleeping has been so disrupted and it's so scary along with the other symptoms. Sure hope this is some deep healing and we are both going to turn a corner soon.

 

It's so good you have friends to support you like that. I'm sorry that your husband doesn't understand. My husband is very understanding and supportive and I do appreciate that. He does have his moments where he gets so stressed because he's worried about me. And I really understand that. But he's never told me to snap out of it he understands that this is out of my control. He just wants to fix it but there's no way that he can and that frustrates him. It frustrates me too. And that's putting it mildly.

 

Leann,

Congrats on your anniversary. It seems like you're definitely improving. So happy to hear that. Steady and slow can win the marathon.

 

Pashu,

That's great you were able to take a week off work and it seemed to help you. It's amazing that you're able to work. That's wonderful, hopefully it will serve as a distraction for you from your symptoms.

 

LadyDen,

How are you doing today? Any improvements?

 

Hugs!

 

LiveLife

[[le...]]

You’ll get there live. There is no rhyme nor reason as to why this can take so long. I’m middling, long way off recovered but coping, only way to describe it like my  brain is like a gutter on a house. The water runs so far but then gets stuck by debris in the gutter and can’t progress any further. Just have hope one day I’ll be like a “ normal” person again. I thought I’d be stuck in that black hole forever, it will improve for you. ❣️

[[Pa...]]

Dea,

I want to congratulate you on your 2-year mark. And it sounds like you're really moving in the right direction and doing well. Very encouraging.

 

Lisa,

Yes it really does seem like you and I are in the same boat. I am suffering so intensely. This fear is off the charts keeping me awake and terrifying me during the day. Sometimes in the evening I do get some breaks but it's not much. My sleeping has been so disrupted and it's so scary along with the other symptoms. Sure hope this is some deep healing and we are both going to turn a corner soon.

 

It's so good you have friends to support you like that. I'm sorry that your husband doesn't understand. My husband is very understanding and supportive and I do appreciate that. He does have his moments where he gets so stressed because he's worried about me. And I really understand that. But he's never told me to snap out of it he understands that this is out of my control. He just wants to fix it but there's no way that he can and that frustrates him. It frustrates me too. And that's putting it mildly.

 

Leann,

Congrats on your anniversary. It seems like you're definitely improving. So happy to hear that. Steady and slow can win the marathon.

 

Pashu,

That's great you were able to take a week off work and it seemed to help you. It's amazing that you're able to work. That's wonderful, hopefully it will serve as a distraction for you from your symptoms.

 

LadyDen,

How are you doing today? Any improvements?

 

Hugs!

 

LiveLife

I try, but my current job seems too challenging for me with my current capacities, so I'm just kind of living in fear of getting fired and the job description here just sets off a lot of anxiety for me in my current state. Can't see it ending pretty at the rate I'm going, but I gotta do what I gotta do. Hugs to you too

[[de...]]

LeeAnn:  Congrats on your anniversary!  You've got this.    The next few months I bet you are going to see a lot of healing!  You have been so patient.

 

Deanna:  Congrats on your anniversary!  Two years is a big deal.  So glad you are feeling better these days!  I hope it continues.

 

 

A big shoutout to everyone else on this Sunday!

 

Lisa

[[le...]]

Keep hoping will turn a corner soon and go that final mile.  So sick sport over here at moment. Women’s football of all things on tonight, thank goodness for netflix. Hope our cheerleader ladyden is doing bit  better. Off to bed now😴

[[Be...]]

It would be interesting what a functional MRI would show if it scanned LayDen's brain during one of her spinning episodes to show the activity in her brain?  I used to have those spinning/vertigo episodes too and for me, I was convinced they were mini-seizures each time.  An explosion of activity in the brain is a seizure, IMO.

[[Li...]]

Leann,

Thank you for the reply. I'm happy to hear that you're making progress, even if it is slow. You're definitely moving in the right direction. Before you know it you'll be completely healed.

 

Pashu,

I sure hope that your first day back to work goes well. I'm sure it must not be easy. I had to stop working when I went into withdrawal.

 

Hugs!

 

LiveLife

[[La...]]

Good morning Yearlings/ dear friends! Firstly, I’d like to wish you all happy healing and a better day than yesterday. You’re all in my thoughts and I wish us all to be healed so we can put this finally behind us. Our new lives are waiting for us. Secondly, please don’t let the symptoms and waves start a root of doubt of your healing. This advice is also to myself! I’ve been slammed pretty hard with symptoms old, new and increase in intensity of the ones I already had. I honestly believe this is just a part of my process although it sucks! So, Deanna and Lisa I agree that this is what’s happening. Becks, I don’t think they’re seizures. It’s definitely vertigo episodes. Especially in my timeframe of 2 years off, Many BBs before me has gone through this rough patch before they went on to heal. I’m crossing my fingers, toes and whatever else I can cross in hopes that will be the same fate for me. And you all too! Let me pause and say this…..

 

Congrats Deanna on 2 years! you have been a pillar of strength through this. May you go on to heal completely. I love you! ❤️

 

Secondly, I appreciate ALL of you for your support as well as your insight on what I’m going through. Your love is gratefully noted and equally returned. I do believe this is just a shift in my vestibular symptoms trying to return me back to normal. Although it is very scary, I’m fighting the fear with calming breathing and mental affirmations that I’m alright ( when they happen). So far, I’ve had one every night at bedtime seemingly tied in to my night wave and one nearly every morning during my morning dread. I’ve been keeping track of them and so far this is the pattern. The intensity of them varies on a scale of 1-10 anywhere from 3 to 8. They last only a few seconds. So yes, I’m still having them. I have a neurologist ( virtual appointment) in the morning. I was debating on whether to tel him about this new shift because he will want me to come in for many tests and scans but I can’t. Also he will try to give me medications like he offered the last time. He offered them even after his wife who was assisting my appointment told him there was NOTHING but time that will heal me. She is a psychologist specialist that prescribes these medications all the time. She has other patients who are dealing with the same thing as me that was on Ambien and benzos. She said that is why she shies away from prescribing them. It’s like playing Russian roulette in the brain! So, I think I will mention it to him that I’ve had a shift keeping in mind that he’s ignorant of benzo and zdrug injury. But I’m happy that I will be reporting that I have improved with time as he said but not as much as he predicted 6 months ago.

Thirdly, I’m so sorry to read that all of you are still suffering too. It breaks my heart! I thought that the worst was over for me until this slam happened. Being this far out, when we are hit again it’s so easy to lose hope. But in spite of it all - the ups and downs, pains, symptoms, waves and windows- we must not lose hope. I think a roller coaster is the best description of this. The thought crossed my mind this morning that the roller coaster is on a track. It can’t go anywhere except within the limits of the tracks. It has a destination….to come to an end. And it will. Anybody ever seen a forever running roller coaster that never ends the ride? Nope!

Lastly, Becks it would be nice to have a brain scan to see what’s happening during certain symptoms. Maybe it would shed some light for all of us. I agree with you on that idea. But, unfortunately that can’t be done. They’re have to have a patient scanned all day and night every day. Because it would have to be perfect timing to catch the unpredictable symptoms. There’s nobody in a 24/7 scanner. And I’m sure the exposure for that long would be very harmful to a human body. I remain hopeful that someday someone will have the heart to pick up where Dr Ashton left off to really dig deep to find out what’s what and possibly have a treatment to assist with symptoms. All this technology advances, can’t somebody invent a wave stopper!? Attach it to people and push a button to stop them in their tracks.  I know…..pipe dream, right?

Anyway, may we all get a visit from the window fairy today or very soon.

Warm hugs to….

Helen, Pashu, Sandy, Lisa, Becks, Leann, Deanna, GG, Live, JBen, Stitch and whoever I missed.

Also our friends who can’t posts…Sage, Wild and those lurking in the background.

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

[[De...]]

LadyDen from your description is sounds so logical that the new shift in your symptoms is a final step in the road to healing.  The fact that they only last a few seconds shows that the brain is compensating pretty quickly when they come on.  And that you have them in a pattern along with your established waves also.  I think you should welcome them with open arms and say "Heal Brain Heal!!!"

 

Always thinking of you and the rest of our buddies....Thanks for the congrats my dear.  Have a very good day today!!!!