12-24 months and up support group

[[Ga...]]

Thanks, Becks!  I did have some type of rash on my lower left back which my doctor ruled out as shingles, but I don’t think he even considered Lyme.  I had been tested two years ago for Lyme, Rocky Mountain Spotted Fever, and I think one other disease, that starts with a B.

 

I will have a telehealth meeting with the infectious disease doctor on Tuesday at 8:30 a.m.

 

Thanks for your insight!

 

GG

[[Be...]]

Untreated Lyme can have serious health consequences.  It's a simple blood test.

[[le...]]

Just after 5am here another bad night about 2 hours sleep. Normally manage get 4-5 hours, but 2 not enough.Anyone else having sleep problems? Maybe it’s psychological as trying stop the unisom. Might get some melatonin to take some nights. After  43 months this have forgotten what normal feels like What makes it harder is I felt so good on zopiclone, whereas majority people felt bad on meds and they had stopped working for them, but enough moping. I hope  you are all sleeping blissfully over there.This seems never ending cycle at the moment, case of what else can we throw at everybody, especially thinking of you GG. Sending hugs from across the pond❣️

[[Ga...]]

Becks, I am sure I will be tested for Lyme.  Just have to wait until Tuesday when I speak with the infectious disease doctor.

 

Leann, sorry for your up and down sleep issues.  I sometimes take a Benadryl allergy pill when I am having trouble with interrupted sleep.

 

Hello to all, please have the best day you can!

 

Hugs,

 

GG

[[...]]

Did anyone else experience to get balance problem, more than one year off? I am so dizzy, and when I stand, I loose balance for a second...

[[Ga...]]

Many buddies complain of of all forms of dizziness, such as feeling like they are on a rocking boat.  There is a support group for those suffering with this!!!!  Check it out.

 

GG

[[He...]]

Just after 5am here another bad night about 2 hours sleep. Normally manage get 4-5 hours, but 2 not enough.Anyone else having sleep problems? Maybe it’s psychological as trying stop the unisom. Might get some melatonin to take some nights. After  43 months this have forgotten what normal feels like What makes it harder is I felt so good on zopiclone, whereas majority people felt bad on meds and they had stopped working for them, but enough moping. I hope  you are all sleeping blissfully over there.This seems never ending cycle at the moment, case of what else can we throw at everybody, especially thinking of you GG. Sending hugs from across the pond❣️

 

I'm so sorry Leanne,

 

It's really rough when you can't sleep. I'm going through something with my sleep too.  I feel like I sleep better in the fall and winter. Summer is no good for sleep...so much light and heat.  I'm averaging 4-6 hours in the past few months and have big circles under my eyes. It's not bothering me that much but yes, I'm also not sleeping as much.  I hope you can feel a little better soon. I know you've been waiting a long time.

 

Helen

 

[[La...]]

Good morning friends:

 

 

Leeann:  Glad you got some decent sleep last night.  Hopefully that will continue.  Are you having an okay day today?  Glad it rained so you don't have to water your plants.  We are supposed to be getting some rain here this afternoon.  I love a good summer rain. 

 

GG:  I don't know much about Lyme disease.  Will be interested to see what the infectious disease doctor says about that.  Have you been in a place where you could have possibly gotten a tick bite?  Is it a particular kind of tick or just any tick?    I know some people who have had symptoms of Lyme disease, but were never officially diagnosed. 

 

LadyDen:  Row, row, row your boat!  Ha!  This is quite the wave!  As they said in Jaws, "we are going to need a bigger boat".  Every day I think I am about to capsize, but I am able to hang on by the grace of God.  Let's keep rowing and get to the other side.  It has to be soon.

 

I got a decent night's sleep last night.....only woke up two times.  I am so grateful for that gift!!!  Today has been not too bad thus far.  Hopefully it will continue to improve as the day goes on.  I still feel a little under the weather with this bug.  My husband has COVID so he is quarantining at home.  I took a test yesterday and it was negative.    Hopefully, it will stay that way. 

 

To everyone else:  Helen, JBen, Pashu, LiveLife, Sandy....hope you are well.    Thinking of you!

Oh no Lisa! I’m praying that you don’t get COVID from hubby. Very smart to stay separated from him. It’s the last thing you need. Yes we are rowing girl….trying to get to the shore where we can enjoy solid ground. We’re getting there…I can see that shore! Rest up. Stay hydrated. Keep me posted dear friend.

Have an awesome day and sleep well again! Yay!!!,,,yay!!,, sleep fairy was nice! 

Love and hugs 🤗❤️

[[La...]]

Thank you Helen.

I really hope so too. My 14 month mark is on Thursday...

 

Well looks like tomorrow (Thursday) is special day for three of us.

It’s my birthday. I’ll be fabulously 48!

It’s Helen’s 15 month milestone.

It’s our new friend JB42’s 14 month milestone.

Much to celebrate tomorrow! Wooohooo!

Here’s to happy healing for us all.

 

🎉❤️🎉❤️🎉❤️

[[La...]]

Just after 5am here another bad night about 2 hours sleep. Normally manage get 4-5 hours, but 2 not enough.Anyone else having sleep problems? Maybe it’s psychological as trying stop the unisom. Might get some melatonin to take some nights. After  43 months this have forgotten what normal feels like What makes it harder is I felt so good on zopiclone, whereas majority people felt bad on meds and they had stopped working for them, but enough moping. I hope  you are all sleeping blissfully over there.This seems never ending cycle at the moment, case of what else can we throw at everybody, especially thinking of you GG. Sending hugs from across the pond❣️

Hugs across the ponds to you too. I’m looking for the sleep fairy to send her your way, Leann. It will get better. Wait and see. 💗

[[La...]]

Did anyone else experience to get balance problem, more than one year off? I am so dizzy, and when I stand, I loose balance for a second...

Yes it’s been my main symptoms this whole time. And still is. If it wasn’t for these vestibular symptoms then I’d be 90% healed for sure. The good news is they are now improving as the months have stacked up. I’m 26 months now. With time yours will improve too. As GG said, it’s one of the most common symptoms coming off these medications. As mentioned there is a dizziness thread which I’m on as well.

By the way, JB42, I’ve tried vestibular therapy, physical therapy (2 times), special exercises too. Unfortunately NONE of that helps this - atleast not in my case or many other people who tried it. Only time makes it better. Our lovely Helen has had it for a short time off and on. Some people’s have it that way and some like me consistently. But everyone gets better. 

If I had to say what did help a bit is being able to walk daily. This had me completely bedridden for 2 years. Once it healed enough for me to walk, I made bigger strides in my healing. I’m currently trying to walk more and further each day.

[[le...]]

Happy birthday for tomorrow. Have you got any family coming round? I’m not too bad didn’t have meltdown, just mega tired. Husband couldn’t sleep either. Just after years of this , really thought it had improved. Even though took zopiclone fir insomnia, was the one thing wasn’t too bad in withdrawal. It makes the anxiety so much worse. Managed a walk, and lugging umpteen watering cans round garden, just praying that sleep fairy visits tonight. Trying not to be mrs misery again, but just wish I’d get a symptom free day sometime soon☹️

[[La...]]

Leann thank you sweetheart. I bet your garden is so lovely. What do you have planted? Any vegetables?

Maybe sleep fairy will visit you tonight. Since I’ve turned 2 years my sleep has changed…not in a good way. Every other night is a struggle to fall asleep longer than it usually takes. It’s the night waves causing it. But when I do fall asleep it is good sound sleep. Have you tried sleep restriction? It works wonders for me.

It’s pretty simple in that all you do is restrict sleeping to only allowed at bedtime. No naps during the day. You pick a bedtime and strictly stick to it. Mine is 11pm. With eyes closed, comfortable and slightly cooled room I lay there to pray then meditate by taking myself to a nice place ( a rose garden, on a beach, a spa, etc) The rule is I’m not allowed to open my eyes. I use a sleep mask and ear plugs as well to keep the focus. When I’m “ there” in my place, I picture the tiny details of it while mentally saying slowly…” relax, calm, ahhhh and sleep”. Breathing is controlled as if I’m already asleep.

Another thing that has worked for me is the paradoxical response. This is where I prepare myself to sleep as written above BUT instead of mentally repeating “relax calm sleep”, you do the opposite and say “ don’t fall asleep”. In some strange way the brain will fight that because the body is prepared to sleep…so it will put most people to sleep. Isn’t that funny? Just like a kid on Xmas eve wanting to stay awake to see Santa they fight sleeping but it happens anyway.

 

[[le...]]

I tried everything when I had long term insomnia nothing worked apart from zopiclone😀 Don’t worry know they aren’t the answer. Even tried magnet in my knickers at one time was meant to help!Hoping it’s just a blip, I do have routine read for half hour in bed, and have wind down time before bed. Think maybe it’s because I’m trying stop taking unisom, don’t won’t get hooked on them. I’ve got some melatonin J’ll try taking them the odd night. You must be a Virgo? My husband’s birthday next month he’s Virgo.  Explains why you are so patient and compassionate, he has been like a saint with me through this. Think they are generally very calm people. Have a lovely day tomorrow , give yourself some treats, definitely cake😊

[[Li...]]

Hello to all my buddy's,

 

Just a post to let everybody know that I'm sending big hugs and love to all. I'm struggling so much I'm unable to post much. When I get a break I will post haven't even really been able to read. Hoping everyone gets a window soon, me included.

 

LiveLife

[[...]]

Did anyone else experience to get balance problem, more than one year off? I am so dizzy, and when I stand, I loose balance for a second...

Yes it’s been my main symptoms this whole time. And still is. If it wasn’t for these vestibular symptoms then I’d be 90% healed for sure. The good news is they are now improving as the months have stacked up. I’m 26 months now. With time yours will improve too. As GG said, it’s one of the most common symptoms coming off these medications. As mentioned there is a dizziness thread which I’m on as well.

By the way, JB42, I’ve tried vestibular therapy, physical therapy (2 times), special exercises too. Unfortunately NONE of that helps this - atleast not in my case or many other people who tried it. Only time makes it better. Our lovely Helen has had it for a short time off and on. Some people’s have it that way and some like me consistently. But everyone gets better. 

If I had to say what did help a bit is being able to walk daily. This had me completely bedridden for 2 years. Once it healed enough for me to walk, I made bigger strides in my healing. I’m currently trying to walk more and further each day.

 

Thank you. I just hot worried, because the extreme dizziness snd imbalance is a new symptom that initiated after 12 months and now it's really bad. I do try to walk every day, as that is the only thing I feel I can do. But it's hard with the dizziness and balance problems

[[le...]]

HAPPY BIRTHDAY LADY DEN 😊😊😊😊

[[Ga...]]

HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY, DEAR LADY DEN, HAPPY BIRTHDAY TO YOU :happybday:

 

NOW, PLEASE GO HAVE YOUR CAKE AND EAT IT, TOO🎉💐🙏😍💐♥️

 

Hugs,

 

GG

[[Be...]]

Happy birthday dearest Lady Den....I pray this new age comes with immense health and wholeness....

Spirit, soul and body.... 💕

[[de...]]

Happy Birthday!!!!!  Hope you are able to celebrate!  Thanks for all you do for this group!!!

 

Lisa

[[La...]]

Super big THANK YOUto all my beautiful friend/ benzo family! You all are some of the most awesomeness people on the planet! I’m feeling rough so far BUT I’m going to do my best to enjoy my day even if I’m in bed today. As Bexlan said I’m looking forward to my healing this year so this time next year I’ll be at a resort celebrating my birthday like a normal person. And yes I’ll be crying…..tears of joy to finally be free of this. It warmed my heart to receive such lovely birthday wishes from you all. I’m in my morning dread/wave ( rough one today) but you all have me smiling! I love you all very much.

Come on healing for us all! We are ready!!!!,

 

:smitten: :smitten: :smitten: :smitten: :smitten:

 

[[de...]]

LiveLife:  I am so, so sorry you are still struggling so much.  This has been going on so long!  I am thinking things will settle down for you very soon. 

 

Leeann:  How was your sleep last night?  I have had two bad nights in a row.  Yuck.

 

Just wanted to pass this along.    I have really not paid too close attention to what I eat through this experience.  I try to eat healthy, but I pretty much eat what ever I want within the healthy realm.  Last night I had tomato pie for dinner and ate quite a bit of it.  Today, I am feeling wretched.  Just now discovered that tomatoes are full of glutamate.  I am wondering if that is why I am feeling rotten today.  I am very anxious, sweaty, etc.    Does anyone know about the tomato glutamate connection?    I also read that Green Tea is really good for balancing your glutamate/gaba.    I was told my someone on this forum just the opposite; that green tea was full of glutamate, but apparently that is not true.  Would love to hear your thoughts.

 

I hope everyone is having a decent day.  It is hot here in the south, but the humidity has died down.  It is really nice.  I am going to go for a drive and run some errands.

 

Thinking about everyone!      Jb42, Bexlan, Helen, GG, Pashu, JBen, Becks, LadyDen (birthday girl),

[[le...]]

Hi Decateur, sleep OK last night. I took half a unisom. I am trying to stop it so don’t get dependent. Only every get about 4-5 hours, but the 2 hours can’t cope with. Seems alternate nights don’t sleep so see what tonight brings. Am trying to do more. Went out in car to nearby town today, sometimes have to make my husband go back, but least going out in car more. Figure if never try will never improve. Not heard that about tomatoes, don’t eat lot of them, as avoid anything too acidic, as got IBS and had lot UTI’s in past. Tried  green tea but tastes vile,I’m lucky food doesn’t affect me, so probably not lot help. For me supplements are a no no, everything I’ve tried revs me up. Hope you soon feel better, and sleep bit better tonight. Have had periods crappy sleep before so hopefully blip.

 

Lady D hope you are managing to have a nice birthday however you feel. Husband and I got  big one this year but not up to having proper celebrations. Hopefully next year☹️

[[Ga...]]

Lisa, oh my gosh tomatoes upset me to the point that I had to give up my love of tomato sandwiches this summer!  It is the high glutamate and I have read of other buddies being affected negatively by them.  Plus, as Leann mentioned, they are acidic and can burn the urethras. 

 

What a shame so many of the foods we love and have never had issues with, turn their backs on us in BWD.  Supposedly when we are through this mess, we can go back to eating and drinking as we did in our normal lives…..except alcohol!

 

Hugs,

 

GG

[[Pa...]]

Happy birthday LadyDen!