12-24 months and up support group

[[le...]]

Yes, to a call for a sword to slay the benzo dragon that has so many of us in its clutches.  I for one am not enjoying a return to those burning brain headaches which had virtually disappeared.  I fear my path forward is going to be rockier after my antibiotics and foiled surgery.

 

I pray all of us are nearing the end……for those of us who have had windows, it is truly like a nightmare to relive those acute horror days.

 

Love and hugs,

 

GG

 

 

 

 

 

 

 

 

 

I had anti biotics early in withdrawal for throat infection was OK so you maybe fine. Cut down a small conifer and been replacing it with some plants trying to distract. Got a thumping head but mine’s coz 2 hours sleep, tinnitus really bad as well. Really hope it’s blip if goes on much longer be hard not to reach for zopiclone. Think my sword bit blunt at moment.  GG when I kept getting UTI’s took them while to find right anti biotics, I was resistant to quite few of them. Have you had the scan where they inject you with a dye. Can show you if bladder & kidneys working OK.

 

[[Ga...]]

Hi Leann.  No I have not had the dye injected but will see a urologist next Thursday so I imagine she will begin testing me to see what is going on.  I have never had a UTI linger so long.  And, I have no UTI symptoms, just feel awful due to all the meds I have been on and the perforated uterus. 

 

Here’s to much better days!

 

GG

 

 

[[He...]]

Hi all,

 

Just popping by to say I'm thinking of you all.

 

Lady Den, I'm so sorry you are still so wavy.  Please know I'm holding you close.

 

Leann, I hope you'll feel something shift soon. I know you are long overdue.

 

GG!!  I agree with LD. Don't take ownership of a long, drawn out recovery from the ABs and surgery mishap.  You're a healthy woman under all of this!  I'm sorry you got that call today but maybe the PA is correct and the elevated white blood cells are just a sign that your body is still working out the infection stage.  I'll be in touch! 

 

Life Life, any improvement for you? I so hope so.

 

Decatur, I saw that you need prayers. You've got mine! Whatever is going on, I hope it gives you a break very soon.  I'm sorry things are hard.

 

J Ben, always thinking of you.

 

I'm ok...still getting over a cold but not too bad on the WD front at all. I had my yearly physical today and things seem good all around. I'll be having some blood work done on Wed but I don't expect anything too glaring from that.  They did a PCR Covid test on me just to confirm that my THREE at home negative tests were correct.  I guess that's good since I've had cold symptoms.  We had a long weekend at the beach but totally were relaxing as my husband has been much sicker with the cold virus. He's usually super strong but this bug really got him! He's also had 3 negative Covid tests. I was glad to be able to help him a little while were there since he's helped me so much over the years.  The ocean was beautiful and I sent a wish and a prayer to the beautiful sky for all of you. 

 

Helen

[[le...]]

Early evening here hope all of you suffering having a reasonable day. Please say little prayer for me that I sleep for more than 2 hours tonight

Thank you lovely people xx

[[de...]]

Leeann:  Yes, praying for you to get more than two hours sleep.  I am in the same boat.  I know it is tough.  The nights can be very long and lonely while not sleeping.

 

Hope you have had a decent day.

 

Lisa

[[de...]]

Circling back around to my dear benzo buddies today.

 

Helen:  Thanks for the well wishes.  Sounds like you had a lovely time at the beach.    You must be doing very well.  I long for the days when I can go to the beach.  Our family goes to 30A in Florida.  We love it there, but it has gotten very crowded.

 

GG:  OMGoodness!!!  Cannot believe the doctors are still seeing an elevated white count.  Let's hope it is just the residual from last week fighting the UTI.  Not sure what to think anymore.    Have you had a headache today?  Head pressure?

 

LadyDen:  You and I are in the same "boat" so to speak.  Going through some choppy waters.  Cannot wait to get out of this wave and back on solid ground.  I hope you have a good evening.  Two more days until your birthday!!!

 

LiveLife:  How are you doing?  Any break in the fear?  I know you are hanging on for dear life.  So wanting you to get a break. 

 

I am still fighting my way through this wave.  Have some kind of virus that is going around.    I think being sick always makes symptoms worse.  Just what I needed!!! 

 

To everyone else.....keep soldiering on!  I will as well.    I just so much want more of us to break out of the pack and be done with this.  Much love to everyone!

 

 

 

 

 

[[Be...]]

GG, maybe it would help if you drank a big glass of pure cranberry juice everyday to make sure you don't get anymore UTI's?  I remember when I had a bad UTI decades ago, I drank a bunch of pure cranberry juice and when I got to the ER for them to check my urine, I only had white cells left when they looked at my urine under a microscope.  Cranberry juice kills the micro-organisms that cause a UTI.  I used to drink that all the time when I felt a UTI coming on.

[[le...]]

Managed to sleep last night, hope anyone else struggling done the same. It doesn’t make anxiety improve when I sleep, but definitely find lack sleep makes the symptoms helluva lot worse. Did  take 1/2 unison, trying stop them, but maybe will do it gradually. Plus had some drizzle here this morning so won’t have water garden. Hope you all have a stress free day😊

[[La...]]

Hi LadyDen.  Well, now I am really concerned as my doctor’s office just called and said my most recent urine tests still shows some bacteria, but they have to wait to get the full report later today to decide what to do???!!!!  This has gone on so long, that I have now been referred to an infectious disease specialist…..I have a telehealth call with him next Tuesday and then an appointment with a urologist next Friday.

 

I am beyond scared that there is something else going on that has not been found.  However, I am reassured that all my blood work and my pelvic/abdominal scans taken during my recent stay in the hospital for three days showed everything all normal!  Actually the PA female in my doctor’s office just called and said not to worry as I may just be harboring some white cells without having a true UTI…I have none of the traditional symptoms of one.  She also said that they know I am suffering from too many antibiotics and it is showing up in my wave like pattern of late.  Thank goodness that they understand what I am going through!

 

It will be interesting what can be gleaned from a phone call with an infectious disease doctor! 

 

So there you have it in a nutshell!

 

Hoping all are feeling better than me!!!!!

 

Hugs,

 

GG

You know GG that report isn’t bad at all. Yay!

Some people do have some bacteria that hangs around for a bit. I think that tests are coming back normal is a good thing! Especially after all you’ve been through. Until they do find something then push the concerns away my dear. At the end of the day, I honestly just think you have what other elderly ladies have. It is very common to get frequent UTI or bladder issues as people age especially ladies. So let’s see what the infectious disease doctor says and go from there. For now, you are basically in the clear which is what we want. 

Wishing you big hugs and love. Perhaps a lovely walk in the garden and a nice cup of tea would do well today. Sip and sunshine! But don’t get too hot. 🤗🌹

[[La...]]

Hi all,

 

Just popping by to say I'm thinking of you all.

 

Lady Den, I'm so sorry you are still so wavy.  Please know I'm holding you close.

 

Leann, I hope you'll feel something shift soon. I know you are long overdue.

 

GG!!  I agree with LD. Don't take ownership of a long, drawn out recovery from the ABs and surgery mishap.  You're a healthy woman under all of this!  I'm sorry you got that call today but maybe the PA is correct and the elevated white blood cells are just a sign that your body is still working out the infection stage.  I'll be in touch! 

 

Life Life, any improvement for you? I so hope so.

 

Decatur, I saw that you need prayers. You've got mine! Whatever is going on, I hope it gives you a break very soon.  I'm sorry things are hard.

 

J Ben, always thinking of you.

 

I'm ok...still getting over a cold but not too bad on the WD front at all. I had my yearly physical today and things seem good all around. I'll be having some blood work done on Wed but I don't expect anything too glaring from that.  They did a PCR Covid test on me just to confirm that my THREE at home negative tests were correct.  I guess that's good since I've had cold symptoms.  We had a long weekend at the beach but totally were relaxing as my husband has been much sicker with the cold virus. He's usually super strong but this bug really got him! He's also had 3 negative Covid tests. I was glad to be able to help him a little while were there since he's helped me so much over the years.  The ocean was beautiful and I sent a wish and a prayer to the beautiful sky for all of you. 

 

Helen

You’re such a big sweetheart! How thoughtful of you to say a prayer on the beach for us. I’m tears eyed reading this! 🌹🌹🌹🌹🌹

I’m so very happy you and hubby’s results were negative. Whatever bug you both got was a ugly little knucklehead to make you both so sick at your anniversary. I’m glad you still got to enjoy yourselves. I think as your bodies continue to fight the bug you’ll go back to feeling like you did last week. I’m praying for you and everyone too. We are all warriors!

Love you bunches 💗❤️

[[La...]]

Circling back around to my dear benzo buddies today.

 

Helen:  Thanks for the well wishes.  Sounds like you had a lovely time at the beach.    You must be doing very well.  I long for the days when I can go to the beach.  Our family goes to 30A in Florida.  We love it there, but it has gotten very crowded.

 

GG:  OMGoodness!!!  Cannot believe the doctors are still seeing an elevated white count.  Let's hope it is just the residual from last week fighting the UTI.  Not sure what to think anymore.    Have you had a headache today?  Head pressure?

 

LadyDen:  You and I are in the same "boat" so to speak.  Going through some choppy waters.  Cannot wait to get out of this wave and back on solid ground.  I hope you have a good evening.  Two more days until your birthday!!!

 

LiveLife:  How are you doing?  Any break in the fear?  I know you are hanging on for dear life.  So wanting you to get a break. 

 

I am still fighting my way through this wave.  Have some kind of virus that is going around.    I think being sick always makes symptoms worse.  Just what I needed!!! 

 

To everyone else.....keep soldiering on!  I will as well.    I just so much want more of us to break out of the pack and be done with this.  Much love to everyone!

Lisa we are on our way out of this thick forest of suffering. I’m sorry that you have a bug too. As you said it’s the last thing you need. Oh no!!!  :'(

Just know I’m here for you too. How did you sleep last night?

We’re on this boat together right now. Time to row real hard to get to the shore for a nice window. Prayerfully the permanent one, right?

Love hugs and feel better wishes ❤️🤗

[[La...]]

Managed to sleep last night, hope anyone else struggling done the same. It doesn’t make anxiety improve when I sleep, but definitely find lack sleep makes the symptoms helluva lot worse. Did  take 1/2 unison, trying stop them, but maybe will do it gradually. Plus had some drizzle here this morning so won’t have water garden. Hope you all have a stress free day😊

Yay so happy that the sleep fairy found you! 

I love the morning rains.

Love and hugs enjoy your day.

Remember to speak positive, be positive and do positive things.

[[...]]

Hello everybody

Just popping in here. I’m 14 months of, so seems to be a group for me. One question - are there many as me, who still didn’t get a decent window after so long?

Bless you all🙏

[[Ga...]]

Good morning lady and gent buddies😍

 

I will be short on conversation as I am still waking up feeling awful!  Now, I have turned my thoughts and fears to Lyme disease, which does mimic bwd!  I did have that strange rash in July, and shingles was ruled out.  Now I wonder if it was a tick bite even though the rash was not a bulls eye type of rash.  The infectious doctor will probably test me for that according to my PA.  It is scary to read how the symptoms of Lyme mimic those of BWD….especially the bad headaches, which I now have again.  Of course antibiotics can cause bad headaches so maybe that is why my headaches have been constant for about a week.

 

Has anyone here ever had Lyme disease?  Or know of a buddy who had Lyme while going through the bwd nightmare?

 

My heart feels loving, but not so much my head!!!

 

Hugs, love and more😍😍😍😍😍😍

 

GG

[[La...]]

Hello everybody

Just popping in here. I’m 14 months of, so seems to be a group for me. One question - are there many as me, who still didn’t get a decent window after so long?

Bless you all🙏

 

Welcome, JB42! so happy to have you join us! Make yourself comfy and get all the support you need here.

I’m sure some of these other yearlings will chime in on your question….but I do know some don’t get many windows until they heal awhile. Afterwards, they get many of them or get the permanent one ( completely healed). I’ll also add that windows can be misleading to identify especially when you feel bad all the time. So to help determine what one is…..

A window is simply a break from your symptoms and not necessarily completely gone. They can be decent, very small, semi- window or a good one ( symptoms disappear totally or nearly gone). Me personally, mine vary a lot. Sometimes I get a real short small one with just enough relief to take care of something. Others are longer, clearer and allows me to have hours of enjoyment.

I hope you start getting nice ones real soon.

[[La...]]

Good morning lady and gent buddies😍

 

I will be short on conversation as I am still waking up feeling awful!  Now, I have turned my thoughts and fears to Lyme disease, which does mimic bwd!  I did have that strange rash in July, and shingles was ruled out.  Now I wonder if it was a tick bite even though the rash was not a bulls eye type of rash.  The infectious doctor will probably test me for that according to my PA.  It is scary to read how the symptoms of Lyme mimic those of BWD….especially the bad headaches, which I now have again.  Of course antibiotics can cause bad headaches so maybe that is why my headaches have been constant for about a week.

 

Has anyone here ever had Lyme disease?  Or know of a buddy who had Lyme while going through the bwd nightmare?

 

My heart feels loving, but not so much my head!!!

 

Hugs, love and more😍😍😍😍😍😍

 

GG

GG my bet is that you don’t have Lyme. 

Be careful with the health anxiety kicking up. Please don’t start stressing out over things like that. WD does mimic many other disorders. But, my dear sweet friend, you know how this goes…..benzo bully whispering lies to incite fears. My advice, quickly dismiss the whispers with the facts. You didn’t have the tell tell bullseye rash? Then HIGHLY unlikely it’s Lyme. So, don’t give that spark any mental gas…..get my meaning?

If you do, it can become a raging flame.

Time to distress those health concerns. 

[[...]]

Hello everybody

Just popping in here. I’m 14 months of, so seems to be a group for me. One question - are there many as me, who still didn’t get a decent window after so long?

Bless you all🙏

 

Welcome, JB42! so happy to have you join us! Make yourself comfy and get all the support you need here.

I’m sure some of these other yearlings will chime in on your question….but I do know some don’t get many windows until they heal awhile. Afterwards, they get many of them or get the permanent one ( completely healed). I’ll also add that windows can be misleading to identify especially when you feel bad all the time. So to help determine what one is…..

A window is simply a break from your symptoms and not necessarily completely gone. They can be decent, very small, semi- window or a good one ( symptoms disappear totally or nearly gone). Me personally, mine vary a lot. Sometimes I get a real short small one with just enough relief to take care of something. Others are longer, clearer and allows me to have hours of enjoyment.

I hope you start getting nice ones real soon.

 

Thank you LadyDen

I do feel bad all the time, I must say. I really try to be optimistic and see if there is any time where I just feel a little better. There are, but they are very seldom. There might be a few hours every month, where I feel a little bit better and where there is a little relief. But it not much. I would love to have days of windows or just hours where I could feel like my old self, since it would tell me clearly that I am surely healing. But I didn’t have that yet.

[[Ga...]]

Thanks so much, LadyDen.  What is adding to my fear is that my most recent urine culture still shows infection!  My doctor’s PA, who is female, says that because I am asymptomatic they are not going to put me on any other antibiotic, but will now put my case in the hands of the infectious disease specialist who I will have a telehealth call with next Tuesday.  My headaches are now constant like they were in my acute stage which really breaks my heart as I suffered with them for so long.  I just feel as though poison is circulating throughout my entire body!

 

I am so sorry that I can’t be more of a positive Paula, but these past three months have really worn me down.  What is so perplexing is that I felt really well in the hospital and the day after.  Then came the antibiotic injections……four of them over two days…and it has all been downhill since then.  I did have a partial window two nights ago from 6 p.m. until I turned out the light at 10 p.m.  The headache had gone away, and I enjoyed every minute of feeling good.  Now I wake up with the trembling hands, ear and head pressure, and that darn benzo fluish feeling.  At 30 months I do wonder if something else is going on?

 

Welcome JB42!  You have now joined a group of buddies who will support you, be kind and caring of you, and see you through to the end of your bwd journey.

 

Waves and windows vary greatly for all of us…some never have a window and just reach full recovery out of the blue.  Others like me experience windows and waves of varying lengths and symptoms,  sort of like a roller coaster ride.  We all get to the big and lasting window eventually!

 

Hugs,

 

GG

 

 

 

 

[[de...]]

Welcome JB42:  Glad you joined our group!!!  You will find lots of good support here and hopefully some answers to your questions.    At 14 months off it is very normal not to have any/many windows.  As someone else mentioned, windows are not where you feel 100% well, but your symptoms are less intense.    One of our friends here, Leeann, has not had many windows in her journey.  You will find that things begin to wax and wane and some sort of pattern will develop.    Looking forward to "getting to know you" through this forum.    Quite a few of us are beyond the two year mark, so we have been where you are and understand. 

 

Hope you have a decent day today.

 

[[de...]]

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!

 

[[He...]]

Decatur,

 

I'm glad to hear you are feeling a little better. I had a bug too but I'm also coming out of it.  The worst part of the bug for me wasn't the sore throat and such...it was that it kicked up my WD symptoms.  I can handle a virus after all this BWD stuff! It's what it does to my nervous system that gets me. I wonder if you're the same?  Sorry your hubby has Covid.  We tested multiple times last week and all negative.  I'm definitely feeling much better now. 

 

GG,

 

Gosh, so many different theories have been thrown your way over the past 3 months. It truly is no wonder you've felt stressed. Your headaches sound miserable and I'm sad to hear that you have them.  It does seem like all the infections and the ABs have irritated your system something terrible. Shaking hands and all of that sound like a confused nervous system to me.  I hope you'll get some good answers soon friend.

 

Jb4, 

 

Welcome to our group! I'll have 15 months on Thursday.  I started feeling a bit better shortly after the 14 month mark. I've still got a long way to go but I'm feeling some relief.  I will be sending you hope that this may happen for you. I hope it does! 

 

Life Life, Leann, J Ben, Pashu, Fire and all...I hope today brings goodness your way. 

 

Helen

[[...]]

Thank you Helen.

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

[[Pa...]]

Hello everybody

Just popping in here. I’m 14 months of, so seems to be a group for me. One question - are there many as me, who still didn’t get a decent window after so long?

Bless you all🙏

I'm 9 months off, symptomatic for 18 months. No windows really.

[[le...]]

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!

 

 

 

 

 

 

 

 

 

 

Glad you had a good night as well. Had reasonable day, went out in the car to a nature reserve and went fir a walk round. I’m realising being able to sleep makes such difference to symptoms. Sinus headache been quite bad but can put up with that. I do miss that feeling of taking a zopiclone knowing it will knock you out, but not going back there,  but hopefully not to many more nights of 2 hours sleep. Think being able to cope with symptoms is my version of having a window😊. Hope everyone on here had a reasonable day off to watch TV now and relax xx

[[Be...]]

GG, I had Lyme disease when I was about two years off benzo's.  I had the bull's eye rash on my left shoulder and it caused a lot of pain in my left arm and shoulder and also an irritable bladder and cognitive problems, etc.  The rash doesn't always present itself as a bull's eye either.  I just looked at pics of people with Lyme disease and some of them have rashes all over their bodies.  Also Lyme disease can cause UTI's too.  Here's a link to Lyme-associated UTI's.  The Lyme spirochete can invade the urinary tract.  I think being tested for Lyme disease would be a very good thing.  Not everything is benzo-related and people need to stop saying that. 

 

https://pubmed.ncbi.nlm.nih.gov/8417211/