12-24 months and up support group

[[La...]]

LiveLife:

 

Hey there!  Thanks for your encouraging words.  Actually our symptoms sound a lot alike.  I don't have tinnitus or the insense pain on the left side of my body, but about everything else you mentioned.    Today I have had lots of heart palpitations.

 

I am able to distract.  I do lots of stuff around my house and will run an errand or two if my anxiety will allow.  I am on my computer quite a bit.  I do have some support at home.  My daughters are traveling this summer so they are not at home which is probably a good thing.  One is 18 and the other 20,  and it can get a little stressful when they are home.    My husband tries to be supportive, but he is so frustrated with this and doesn't understand why it is taking so long.  He is always telling me things to "do" to help me get better.  That is a little frustrating for me, but I listen. 

 

How long has this wave been going on for you?

Hugs To you. I know you addressed this to Live but I wanted to say that I’m having the same problem with people ( family and friends) who don’t understand this telling me to just do this or that. It’s frustrating as you said to keep trying to explain it to them why I can’t. So I totally get what you’re saying. They think because we look mostly normal on the outside that we can just make up our minds and do whatever then….presto, we are healed! OMG I wish it was that easy, right? I would have done that a LONG time ago and I’m sure all of us would too. I told someone awhile back that I wish I had a magic power of touching my family and friends and they would immediately feel what I feel while being touched. They would automatically understand right then.

Sending you hugs and love ❤️

 

Thanks for this, Lady Den.  It is just so hard when the people who are closest too cannot understand your situation.  Oh well.  That is why I am so thankful we have this forum.  I love what you say about the magic power of touching family and friends and them feeling what we feel.  Wouldn't that be great.  If only for a few minutes.  But, unfortunately, that is not possible.   

 

I hope you are having a decent day today.  Hoping all of us who are in a wave right now will soon be on the other side.

I’m so thankful for this forum too.

And yes touch them just long enough for them to feel the symptoms. And tell them to go do this or that while it’s happening. I bet from that moment on, they’d have a whole different perspective. As well as treat us totally different. Experience is the best teacher, right?

Hope your waves bring you to shore soon too. Big hugs 🤗

[[La...]]

LiveLife:

 

Hey there!  Thanks for your encouraging words.  Actually our symptoms sound a lot alike.  I don't have tinnitus or the insense pain on the left side of my body, but about everything else you mentioned.    Today I have had lots of heart palpitations.

 

I am able to distract.  I do lots of stuff around my house and will run an errand or two if my anxiety will allow.  I am on my computer quite a bit.  I do have some support at home.  My daughters are traveling this summer so they are not at home which is probably a good thing.  One is 18 and the other 20,  and it can get a little stressful when they are home.    My husband tries to be supportive, but he is so frustrated with this and doesn't understand why it is taking so long.  He is always telling me things to "do" to help me get better.  That is a little frustrating for me, but I listen. 

 

How long has this wave been going on for you?

 

Hey Decatur - Just wanted to say that I had such a difficult time with my husband especially in the beginning.  Of course he just couldn't understand what we are going through - we look fine to them.  He is the kind of guy who was brought up to "rub dirt on it" and get on with life.  His theory about my symptoms were that I was making it all worse by focusing on them.  While there is some truth to that - we are flooded with these awful symptoms and it is just not possible sometimes to just "deal with it".  It has really impacted our relationship.  I'm still not myself and the whole experience has been so traumatic that even if every symptom left me tomorrow, I wouldn't be the same person I used to be.  I'm just so much more serious than I used to be and not much fun at all to be with.  I guess I'm in survival mode all the time.

 

Hope things get better for all of us soon!!!

Big hugs Deanna! 🤗 Wow I can relate to this. It does impact everyone. And you’re so right that we are unfortunately forced to focus on our symptoms because they’re sometimes too intense to just simply ignore. Which is why we distract as much as possible. Our families just don’t understand this. And we will not be the same after going through this traumatic experience for as long as we have. We all are in survival mode. Don’t feel bad about that. We have to! But we will be fun again because our symptoms will be gone.   

From other healed buddies….probably more fun than before.

 

That would be a huge gift for us after all this suffering!  Thanks LadyDen...What would we do without this forum?  I don't want to think about it.

I don’t want to imagine either! You’re so right. We are blessed! Can you imagine the many people suffering from the drugs that don’t know about this forum or what’s happening to them? Going from doctor to doctor trying to figure it out and prove they’re not crazy? My heart aches for them.

Sending you love and hugs 🤗❤️

[[La...]]

I never thought I would be able to sleep without zopiclone was totally dependent on it. Took a while but do manage sleep without it. I don’t get 7 hours but it’s drug free! It  will come to you , might just take a while. Whine away, I’ve done plenty of it on here😊

Yes sleep will come eventually. And when we get it, it’s more than gold! 😂

And we all have took turns whining on here. But that’s what we’re here for to lend a shoulder. Anyone going through this can’t help but whine.

Good to see you still going Leann. Stay strong! This is our year. 

[[Ga...]]

I have simmered myself down and want to send my supportive thoughts to all who are still waking up to some of the “same old same old” symptoms.  It does get old and the only thing we can do is realize that it is all temporary.  Geez, two weeks ago I was dining lakeside and marveling at how beautiful the world looked.  I hate to admit it, but one day after the lovely lunch with my hubby, I was feeling so well and healthy that I supported my hubby through a three hour ER visit, surrounded by some very ill people, and thinking how lucky I was to be feeling healthy.  Fast forward two weeks, and my husband has shingles and a pinched nerve, so he is not feeling his normal perky self, and I have been treating another UTI.  Today we are looking forward to feeling better again, which we know will come, and which will make another lakeside meal even more “delicious”!  So hang on to tomorrow if today is not promising.

 

Hugs,

 

GG

[[He...]]

LiveLife:

 

Hey there!  Thanks for your encouraging words.  Actually our symptoms sound a lot alike.  I don't have tinnitus or the insense pain on the left side of my body, but about everything else you mentioned.    Today I have had lots of heart palpitations.

 

I am able to distract.  I do lots of stuff around my house and will run an errand or two if my anxiety will allow.  I am on my computer quite a bit.  I do have some support at home.  My daughters are traveling this summer so they are not at home which is probably a good thing.  One is 18 and the other 20,  and it can get a little stressful when they are home.    My husband tries to be supportive, but he is so frustrated with this and doesn't understand why it is taking so long.  He is always telling me things to "do" to help me get better.  That is a little frustrating for me, but I listen. 

 

How long has this wave been going on for you?

 

Hey Decatur - Just wanted to say that I had such a difficult time with my husband especially in the beginning.  Of course he just couldn't understand what we are going through - we look fine to them.  He is the kind of guy who was brought up to "rub dirt on it" and get on with life.  His theory about my symptoms were that I was making it all worse by focusing on them.  While there is some truth to that - we are flooded with these awful symptoms and it is just not possible sometimes to just "deal with it".  It has really impacted our relationship.  I'm still not myself and the whole experience has been so traumatic that even if every symptom left me tomorrow, I wouldn't be the same person I used to be.  I'm just so much more serious than I used to be and not much fun at all to be with.  I guess I'm in survival mode all the time.

 

Hope things get better for all of us soon!!!

Big hugs Deanna! 🤗 Wow I can relate to this. It does impact everyone. And you’re so right that we are unfortunately forced to focus on our symptoms because they’re sometimes too intense to just simply ignore. Which is why we distract as much as possible. Our families just don’t understand this. And we will not be the same after going through this traumatic experience for as long as we have. We all are in survival mode. Don’t feel bad about that. We have to! But we will be fun again because our symptoms will be gone.   

From other healed buddies….probably more fun than before.

 

That would be a huge gift for us after all this suffering!  Thanks LadyDen...What would we do without this forum?  I don't want to think about it.

I don’t want to imagine either! You’re so right. We are blessed! Can you imagine the many people suffering from the drugs that don’t know about this forum or what’s happening to them? Going from doctor to doctor trying to figure it out and prove they’re not crazy? My heart aches for them.

Sending you love and hugs 🤗❤️

 

I have a friend who I suspected for years did not have Chronic Fatigue Syndrome but was suffering from benzo illness. I tried many times to gently let her know it could be the meds.  3 years later and lots of doctor visits under her belt, she finally is getting it. Of course, started off gangbusters (what her doc said would be a "gentle" taper) and now she's sick as all get out.  This forum is so very valuable.  SOOO many people are suffering from meds and chasing other answers and I hate to say it but I feel sort of hopeless for them until they can finally be open to the fact that their docs aren't always right and it's the meds!!!  It's very sad.  I know I tried many different remedies and types of doctors both holistic and western.  I really hope the public is made aware of the truth about this scourge sooner rather than later.

[[Ga...]]

I definitely support Helen’s thought about overuse of meds given by doctors and ERs.  It is so difficult to navigate between real medical issues and which symptoms are brought on by the benzos.  I am 75 and, thus, have different health issues than someone younger, so I am sometimes caught between a rock and a hard place.  Even though my primary doctor is Chinese and promotes preventative care, he still will take out the prescription pad if a test result indicates a true medical issue.  He has also promoted meditation, healthy diet and moderate exercise.  Interestingly, he says benzos are not given in China, and says he received very little information about benzos in med school.

 

Now it seems that we have to question what safeguards we need to follow when going for dental appointments, obgyn appointments, gi appoimtments, etc. 

 

Won’t we be relieved when our symptoms disappear and we can get back to a normal way of dealing with muscle aches, headaches, painful gums and teeth, stomach bloating, and on and on and on🙏

 

Hugs,

 

GG

 

 

 

 

[[le...]]

Not so good today mind you it is the 13th. Do those of you who have had windows find you have a few days actually feeling you turned a corner then get a day when all the anxieties come back. Not mega bad, just been to see a friend husband drove me there and back. Was OK going but when came home the intrusive thoughts started again. Whether it’s because haven’t been out in car much plus the intense heat here I don’t know. Please tell me the more optimistic me will return again. I don’t feel dreadful just dispirited  the good feeling didn’t last😒

[[de...]]

Leeann:  Yes, this is the nature of the "beast".  You have a few good days and then you are back in the benzo doldrums.  It really is a roller coaster, and not a fun one either.  I am sorry you are not having a great day!  Better days are ahead.  Now you know that to be true.  You have actually experienced some better days so it makes it a little easier to hold on to when days aren't so good.

 

GG:  Isn't it just like you to get back on and try to encourage everyone when you are going through a tough day.  Thanks, friend!!!  Hopefully your UTI will clear up very soon and you will be dining lakeside!!!

 

To everyone else......Lady Den, Deanna, Stitch, Upper Left, Helen, Pashu......let's keep each other going.  We are all climbing out of this one step at a time.  It isn't easy, but as mentioned before, thank goodness we have this forum and each other. 

[[le...]]

Thanks for that. Doesn’t feel like a wave or anything too awful, just really felt good yesterday like could look forward. But reassuring to know it’s part of the benzo roller coaster ride. Doesn’t help so hot here, feel like a limp lettuce. Going to be 30 degrees plus at weekend. Think that’s over 100 in Fahrenheit. It’s a full moon as well which my husband reckons sends be a bit crazy crazy😱😱😱

[[De...]]

Not so good today mind you it is the 13th. Do those of you who have had windows find you have a few days actually feeling you turned a corner then get a day when all the anxieties come back. Not mega bad, just been to see a friend husband drove me there and back. Was OK going but when came home the intrusive thoughts started again. Whether it’s because haven’t been out in car much plus the intense heat here I don’t know. Please tell me the more optimistic me will return again. I don’t feel dreadful just dispirited  the good feeling didn’t last😒

 

Leanne - socializing is one of those "stresses" that induces waves for me.  It's gotten much better though, but early on I would have to restrict my "face time" with people to minimize the negative after effects.

[[Li...]]

Hello to all my beautiful Buddies. I see there have been many comments since I was last on here. I am having such a hard time. I won't elaborate because I know you all are aware of my struggles. I see that some of you are struggling pretty badly as well. Wishing all of you move through this very very quickly and soon see a beautiful sparkling clear window. I sure wish that for all of us. This misery has got to go! Warm love and healing hugs to all.

 

LiveLife

[[Th...]]

Lean,

Thank you.❤️ Having someone say it is ok to complain, strangely makes me feel a bit better. If it takes a while I suppose that is the fact of things.

A full moon I forgot about they believe that it causes some crazy.

 

Maybe good crazy like we feel better for a bit? I was told the moon had healing properties, it sounds like mumbo jumbo but it would be nice if it were true.

 

 

Deanna

Is that so, meditation and laughter. Well I will try to give that a go. I wonder if meditation youtube videos would work. Thank you for the reassurance and the insight!

 

LadyDen

Yes, it sucks! Thank you for joining me in my complaining. Sometimes I just need a pity party, but I got to use them sparingly. I'm sorry its been affecting your teeth as well. Right now I just got the nerve pain in my mouth and strangely on the tip of my nose.I will see if I can get someone to draw with me. That is not a half bad idea to try.

I feel your frustration and can't wait for the moment you can drive. Isn't the hair lose just the icing on the cake? Thank you for the hugs, lots of love to you.

 

LiveLife

I hope good days come to you soon. Its good to see you post. hang in there. That window has to come soon.❤️

[[Pa...]]

Much strength to everyone. My symptoms have been unbearable the last few weeks and I see a few of you are really struggling too. We got this! One day at a time.

[[Th...]]

Your right Pashu, We got this! But man is it a pain. Glad to see you post. Hang in there, there are better days ahead.

[[Pa...]]

Your right Pashu, We got this! But man is it a pain. Glad to see you post. Hang in there, there are better days ahead.

 

It is a pain indeed. Juggling this hell with every day life is proving to be an insane challenge. I've always enjoyed a challenge but these past 17 months have been much. Keep your head up, eyes forward. At the end of this ride, we'll be all the more grateful for the time without pain we have ahead of us.

[[le...]]

Lean,

Thank you.❤️ Having someone say it is ok to complain, strangely makes me feel a bit better. If it takes a while I suppose that is the fact of things.

A full moon I forgot about they believe that it causes some crazy.

 

Maybe good crazy like we feel better for a bit? I was told the moon had healing properties, it sounds like mumbo jumbo but it would be nice if it were true.

 

 

Deanna

Is that so, meditation and laughter. Well I will try to give that a go. I wonder if meditation youtube videos would work. Thank you for the reassurance and the insight!

 

LadyDen

Yes, it sucks! Thank you for joining me in my complaining. Sometimes I just need a pity party, but I got to use them sparingly. I'm sorry its been affecting your teeth as well. Right now I just got the nerve pain in my mouth and strangely on the tip of my nose.I will see if I can get someone to draw with me. That is not a half bad idea to try.

I feel your frustration and can't wait for the moment you can drive. Isn't the hair lose just the icing on the cake? Thank you for the hugs, lots of love to you.

 

LiveLife

I hope good days come to you soon. Its good to see you post. hang in there. That window has to come soon.❤️

 

 

 

 

 

 

 

 

This is the place to come to moan, I’m the world champion. The people in this group are so supportive. Taken me a long time to feel anywhere near a bit better. That’s not to say you will take this long, more a case can take a while for some of us, but hopefully we all get there in the end. Going through this is probably worst thing most of us have had to deal with, so everyone moans from time to time.😊

[[La...]]

I have simmered myself down and want to send my supportive thoughts to all who are still waking up to some of the “same old same old” symptoms.  It does get old and the only thing we can do is realize that it is all temporary.  Geez, two weeks ago I was dining lakeside and marveling at how beautiful the world looked.  I hate to admit it, but one day after the lovely lunch with my hubby, I was feeling so well and healthy that I supported my hubby through a three hour ER visit, surrounded by some very ill people, and thinking how lucky I was to be feeling healthy.  Fast forward two weeks, and my husband has shingles and a pinched nerve, so he is not feeling his normal perky self, and I have been treating another UTI.  Today we are looking forward to feeling better again, which we know will come, and which will make another lakeside meal even more “delicious”!  So hang on to tomorrow if today is not promising.

 

Hugs,

 

GG

You are so right, GG! I was thinking the same thing. A week ago I was making good walking progress and was about to start walking further away from my apartment door on the sidewalks. Then BAM! I’m slammed in a wave. This is so crazy. But as you said we know it will get better again.

Love and hugs 🤗

[[Up...]]

Hi all

 

What I know today.  I can not focus on worrying about this crap anymore.  I have a life that needs me and I accept the way I feel and will continue to do my life.  it’s my life and I have all I need.  I can’t focus on the constant suffering of others and myself too.  I am at a point where things are not perfect but I accept it.  I am moving on.  I hope you all get to a point and take back yours too.  Life goes on.  Seize the day!  I hope in the future it will end for me.  But I will take what I get and will update when I can.  Take care distract and do your life.  Laying around and waiting for a miracle was not the answer for me.  Many people I know have serious medical issues and they get up every day and do life.  I am Grateful to be alive! 

 

U

[[Ga...]]

Good Morning All🙏😻.  I finally have some good news to report after an on and off rough three weeks.  As you may know, I was diagnosed with a bad UTU, much like the one I had in January when I got to ride in an ambulance in a major snowstorm to the ER.  After both an initial urine culture in my doctor’s office and subsequent culture done in a lab, I had no choice but to take an antibiotic….instant fear and panic!  The one time I didn’t take an antibiotic soon enough was back in 2018, and I ended up with a kidney infection that put me in the hospital for three days.  So, I took a couple of different antibiotics trying to find one that didn’t make me deathly sick while it worked to cure me.  It was probably the five day course of Ceftin that ultimately did the trick, as the added on Macrobid did nothing but give me insomnia and an awful flu like feeling.

 

This past Tuesday I had a cbc, another in office urine culture, and additional blood work to determine if my long ago EBV had been reactivated.  The urine was clear, and was then sent out to the lab along with the blood work. The doctor’s PA just called and said my blood work was all good, the UTI is gone, and the EBV markers showed no reactivation.  Plus, I was tested for a yeast infection which is so common after a course of antibiotics, and it showed I had a yeast infection.  So, I took one Diflucan yesterday at 1:00 p.m., and woke up this morning with no itching, pain or burning.

 

So, I am relieved, but also somewhat surprised that neither the antibiotics or the Diflucan seem to have set me back in anyway.  I am almost 28 months post Valium taper, so maybe my body can withstand more medicines that I previously could not tolerate.

 

I am now going to pay more attention to my female health, and have taken the suggestion from our dear Helen, and use a yogurt/probiotic (more probiotic than yogurt) on a regular basis.  It is called Coconut Cult and can be bought at Whole Foods, Amazon I believe, or through the Coconut Cult website.  I got the plain flavor to start with, but today I am going to order the mango and the chocolate.  I have started with just a teaspoon twice a day to prevent a bout of diarrhea. A slower start is recommended as the yogurt has 25 billion probiotics per serving.  You may want to check it out, as so many of us have major gut issues, or IBS like me.

 

So today is a brighter day and I hope you are waking up to a brighter day yourself.  I will now make the appointment for my uterine biopsy, but I am pretty positive that the results will be negative for anything serious!

 

Much love and hugs,

 

GG

[[Ga...]]

UL, I send you nothing but good wishes for a life that will bring you to a place of peace.  You have found your way to acceptance and that will bode well for you.  You are a very strong woman who has had many mountains to climb, and, hopefully, now your path will be a more level one to good health!

 

Hugs,

 

GG

[[Up...]]

Gg

 

The biggest thing for me is my family loves and wants me in it irregardless of the way I feel.  I accept them and they accept me.  I will not lose any more to this. Peace and prayers

 

U

[[Ga...]]

The love of family is major and I, also, feel blessed to have my loved ones around me.  My husband is 83 and has been by my side every step of the way.  I am blessed.

 

Hugs,

 

GG

[[He...]]

GG,

 

I'm so very glad to hear your good news!!  Thanks for sharing that. You're on your way back to good health again. Watch the sugars too to prevent infection. An infection LOVES sugar.  You've got this!! 

 

UpperLeft,

 

You are strong and smart and I love your attitude. I agree that we just have to keep living and deal with things as they are....too much life to be lived outside of being ill.  I wish you all the best. 

 

[[La...]]

LiveLife:

 

Hey there!  Thanks for your encouraging words.  Actually our symptoms sound a lot alike.  I don't have tinnitus or the insense pain on the left side of my body, but about everything else you mentioned.    Today I have had lots of heart palpitations.

 

I am able to distract.  I do lots of stuff around my house and will run an errand or two if my anxiety will allow.  I am on my computer quite a bit.  I do have some support at home.  My daughters are traveling this summer so they are not at home which is probably a good thing.  One is 18 and the other 20,  and it can get a little stressful when they are home.    My husband tries to be supportive, but he is so frustrated with this and doesn't understand why it is taking so long.  He is always telling me things to "do" to help me get better.  That is a little frustrating for me, but I listen. 

 

How long has this wave been going on for you?

 

Hey Decatur - Just wanted to say that I had such a difficult time with my husband especially in the beginning.  Of course he just couldn't understand what we are going through - we look fine to them.  He is the kind of guy who was brought up to "rub dirt on it" and get on with life.  His theory about my symptoms were that I was making it all worse by focusing on them.  While there is some truth to that - we are flooded with these awful symptoms and it is just not possible sometimes to just "deal with it".  It has really impacted our relationship.  I'm still not myself and the whole experience has been so traumatic that even if every symptom left me tomorrow, I wouldn't be the same person I used to be.  I'm just so much more serious than I used to be and not much fun at all to be with.  I guess I'm in survival mode all the time.

 

Hope things get better for all of us soon!!!

Big hugs Deanna! 🤗 Wow I can relate to this. It does impact everyone. And you’re so right that we are unfortunately forced to focus on our symptoms because they’re sometimes too intense to just simply ignore. Which is why we distract as much as possible. Our families just don’t understand this. And we will not be the same after going through this traumatic experience for as long as we have. We all are in survival mode. Don’t feel bad about that. We have to! But we will be fun again because our symptoms will be gone.   

From other healed buddies….probably more fun than before.

 

That would be a huge gift for us after all this suffering!  Thanks LadyDen...What would we do without this forum?  I don't want to think about it.

I don’t want to imagine either! You’re so right. We are blessed! Can you imagine the many people suffering from the drugs that don’t know about this forum or what’s happening to them? Going from doctor to doctor trying to figure it out and prove they’re not crazy? My heart aches for them.

Sending you love and hugs 🤗❤️

 

I have a friend who I suspected for years did not have Chronic Fatigue Syndrome but was suffering from benzo illness. I tried many times to gently let her know it could be the meds.  3 years later and lots of doctor visits under her belt, she finally is getting it. Of course, started off gangbusters (what her doc said would be a "gentle" taper) and now she's sick as all get out.  This forum is so very valuable.  SOOO many people are suffering from meds and chasing other answers and I hate to say it but I feel sort of hopeless for them until they can finally be open to the fact that their docs aren't always right and it's the meds!!!  It's very sad.  I know I tried many different remedies and types of doctors both holistic and western.  I really hope the public is made aware of the truth about this scourge sooner rather than later.

Girl well said! I wish to God I could turn back the hands of time. I wish I knew it was Ambien that was making me sick too. But it is what it is now. I’m off of it 2 years and about 3 weeks so all I can do is look forward to healing and let it be a permanent lesson learned to never trust wholeheartedly a doctor. Research, check out what he’s saying and be my own advocate. Because at the end of the day I will be the one suffering for it. As I am now! As we are now! I’m sorry but these doctors are playing God in many instances. We were simply doing what the doctor told us. That’s NOT our fault. I also sympathize with people that have no idea what is really happening to their brains on these so called “ safe” pills. We are so blessed to have stumbled by the grace of god on this site that has opened our eyes to why we were so sick. It is sad that so many will not even know to look. Your friend better take this serious. It’s brain damage! Thanks to God in majority of cases not permanent. But wow it robs us of years that we can’t get back. And robs us of so much more as in my case ( everything! And still taking more). I wish they give these doctors benzos/zdrugs  for a month and snatch it away suddenly so they will KNOW personally what it does to their patients. Perhaps then they would think more than twice about prescribing it like candy. It’s used as a go to for everything! As in my case, I didn’t have anxiety. I had insomnia due to back to back trauma. I should not have been given that poison. Especially for as long as I was and especially not at such high doses being a female. No wonder I’m still so sick and debilitated. Every time I think about it, I get readied eyed angry. I apologize to my brain because I didn’t know! I was following the doctor’s orders by taking a “ safe” helper to sleep.

[[La...]]

Gg

 

The biggest thing for me is my family loves and wants me in it irregardless of the way I feel.  I accept them and they accept me.  I will not lose any more to this. Peace and prayers

 

U

Well said Upper! Wow I’ve lost so much and still is! You are blessed to have family that hasn’t abandoned you. I’m happy for you.

Hugs 🤗