The Long Hold Support Group

[[De...]]

Thanks mm,

 

Also, I dont want ppl saying to me, I told you so, it's not the benzo. This gets severe and its nerves. So you mean  becuz you were in tolerance and me the bad co it effected our muscles that we would have not felt otherwise. It's not like I was out of shape. My xrays aren't even bad. Mild ddd. Just the thought of going to pt and feeling pain they contrive you  understand it awful. I'll keep doing it and I won't get relief. I'm glad you are feeling better. I hope this pain stops. It's not normal. It feels like they cramps and squeeze for no reason. Also, if I get anxious my sx and pain get worse and I feel like my feet and legs to tingle. Like they are hooked up to a tens and the tendons feels tight. I'm going to die.  love you dd ❤❤❤😫

[[De...]]

Also, its eye muscles too. You get those shooting cramps here and there. Sick of ppl telling me I'm overreacting, it's not the benzo, then I start thing it isn't either, and go into denial. It's scary. Sorry, I just hate this having to defend myself with everyone on the outside.

[[Ma...]]

Also, its eye muscles too. You get those shooting cramps here and there. Sick of ppl telling me I'm overreacting, it's not the benzo, then I start thing it isn't either, and go into denial. It's scary. Sorry, I just hate this having to defend myself with everyone on the outside.

 

I know DD.  People would never believe all the issues we have, someone wrote down 150 different symptoms    now most people don't of course, I have probably had like 15 or 20, but mostly eyes and back that have been so annoying and problematic.  You aren't crazy, it's muscles and neurons, and withdrawal and side effects, and all the crap we are dealing with.  You are just fine.  Just remember, aweek or so ago, you were feeling pretty good.  That will come back.  LY girlfriend, MM

♥️❣️💋♥️

[[De...]]

Thanks mm,

I'm not sure how many sx I have.  I'm going to have to figure it out one thing I hate is the inner trembling out of nowhere. Oh, it's a gross sx. Mostly happens in the mornin g or night. So weird. I really wish there was a way to make this stop happening in this world. It makes me so angry. Makes me wonder what else drs. Are wrong about. ❤❤😪😥

[[Ma...]]

Thanks mm,

I'm not sure how many sx I have.  I'm going to have to figure it out one thing I hate is the inner trembling out of nowhere. Oh, it's a gross sx. Mostly happens in the mornin g or night. So weird. I really wish there was a way to make this stop happening in this world. It makes me so angry. Makes me wonder what else drs. Are wrong about. ❤❤😪😥

 

When you have migraines, until just this last year, there was only 1 medicine made specifically for migraines, all the other meds were made for another problem, epilepsy is called migraines sister disease, so they prescribed different epilepsy meds, and hr meds, and anti depressants.  Usually as they prescribed them, they would say " we really don't know how this works, but people get some relief from it"    Then Botox became the next big thing, tried 5 times , never helped me.  But a year ago, they actually made Migraine medication.  I have been afraid to try it because of tapering.

So yes, there are other meds out there they have no idea how they work.  It use to make me so mad,

Migraines cost companies millions a year in employee missed work, people were on disability, and no one was creating an actual migraine med.  I just couldn't understand why.  Big pharm and our medical system is a disaster.  :tickedoff:

[[Gu...]]

I have to comment here cuz it annoys me as well.  Why do doctors PRACTICE medicine?  Why do lawyers PRACTICE law?  Two of the most highly paid professions and they don’t perform their job they practice it.

 

Can teachers practice?  Garbage men?  Secretaries?  I don’t get it.

[[De...]]

I know go so true! I just dont get it! It gets me so mad. Then on top of it the lack of compassion! So so annoying!

[[Gu...]]

Completely agree DD

[[De...]]

  😫😫❤

[[Ma...]]

I have to comment here cuz it annoys me as well.  Why do doctors PRACTICE medicine?  Why do lawyers PRACTICE law?  Two of the most highly paid professions and they don’t perform their job they practice it.

 

Can teachers practice?  Garbage men?  Secretaries?  I don’t get it.

 

Very good point GP.  I had my last neurologist call me at home and say take 400 mgs of magnesium for you migraines without pulling up my history.  So I did, that night and came a few minutes away from ending up in ER.  I have a low heart rate and magnesium lowers it even lower.  My husband was on the phone with her and just as we were about to go to the hospital, my hr stopped dropping.

She didn't even read my records or know magnesium drops your hr.  That's one reason when I answer a question on here, I always bring magnesium dropping your hr, so many people and DR's , don't know.

It's amazing how we survive dealing with Dr,    Now, I truly believe most really care, they are just too busy to do the job the way it needs to be done.   

 

[[Gu...]]

Oh good heavens, you poor thing. That must have been terrifying!  I agree doctors are too overworked to pay close attention.  Unfortunately so are pharmacists.  I’ve caught medicine 3 different times that didn’t look the same, so I’ve taken it back and questioned them.  Only to find they grabbed a medicine next to what should have been given.  Maybe a weather forecaster can get away with 50/50 but not medicine!

[[Ma...]]

Espy, my cousin, would really like to hear from you.  I hope your symptoms haven't gotten terrible again.  We miss you my friend, Stut asks about you all the time.  Please post if you are up to it.

Love you, Your hillbilly cousin Mary  :smitten:

[[De...]]

That's awful mm! They leave out details, they dont have time. You hardly get a chance to talk and their out the door. It's not good health care. Maybe holistic or functional med is better. Idk.  Is your hr ok. Do you know what happened.  My God I never even check mine.  :-[

[[Ma...]]

That's awful mm! They leave out details, they dont have time. You hardly get a chance to talk and their out the door. It's not good health care. Maybe holistic or functional med is better. Idk.  Is your hr ok. Do you know what happened.  My God I never even check mine.  :-[

 

I don't check mine anymore because when I first started cutting, I became obsessed with it.  I was taking it every hour or more, but then it settled to what it had been for years, low 50's.  I swore I wouldn't check it unless either I couldn't breath well or was very fatigued per my heart Dr.  I haven't felt those things, maybe should have taken it once or twice, but didn't want to risk becoming obsessed again.  That was awful.  Heart Dr says call if it drops into the 40's.  So that's my rule, am I having trouble breathing, fatigued or hr in the 40's.    .    I now check all meds before taking to see if they lower hr, if it does, I don't have it filled. 

[[De...]]

That's good mm.  Checking it all the time and worrying is awful. I am getting better control over that myself.  Being in a constant state of anxiety is not helpful for anyone. It makes everything worse. I still do it here and there. You are going to be just fine! Stay calm,,breath.,relax ❤❤

[[Ma...]]

That's good mm.  Checking it all the time and worrying is awful. I am getting better control over that myself.  Being in a constant state of anxiety is not helpful for anyone. It makes everything worse. I still do it here and there. You are going to be just fine! Stay calm,,breath.,relax ❤❤

 

Look at top of this page, Colin has posted CV info for us, at very top in red, then hit the green

[[Ol...]]

Aw Suzy I'm sorry to hear about your back. I hope you start to feel better soon.

[[Tr...]]

I'm sad.. I'm very sad. I'm so close to the cluster in NY. Schools are closing down in my State, not all but a couple so far and it's just a matter of time before more do. It's very difficult to cope when you have very little in the way of a healthy nervous system. It's a struggle when your benzo compromised. I'm trying to get enough beta blocker to last 3 months in case we get locked down like new Rochelle in NY. Uhggg.. I don't want to bring everyone down here but man this is a real bitch. 🤦‍♀️😷

[[Ol...]]

Trishy (and everyone) can you get your rx by mail? I recently had mine switched over to Postal Prescriptions, it is working very well.

Sorry you are close to the cluster. Keep practicing good hygiene and social distancing.

Love to all of you.

 

[[Fi...]]

I'm sad too Trishy.

 

On top of trying to get off these benzos, we have the stress of this virus.

 

I have to hold onto the faith that we will get through this time. 

 

 

[[St...]]

Good morning LHSG hoping everyone has a better day.

Morning GP how are you doing?Are you recovering after your cut?l know you will probably be feeling flat after being away however l hope you are holding your own.love you.X

. Morning Trish chin up girl.We are living in uncertain times however it will pass.l know you are scared honey we all are however we will survive this.The good news is it doesn't seem to be as hard on kids so that is a bonus.Did Rich get his results yet?Hang in there.love you my lST X

Morning Suzy that is a good one l must say.lf l were you l would wait and see where this goes.lf your symptoms don't settle down then perhaps there is some truth in the diagnosis.Anyway physiotherapy will help withdrawal symptoms.love you.X

Morning Final l really hope the group is successful.You have a good understanding of withdrawal and l hope you get through to people that one size does not fit all.let us know how it goes.love to you.X

Morning Olive how are you doing?Are you still managing to get out and about?l hope your mom is well? love you.X

Morning Troch how did you sleep last night?l would suggest you use sparingly l am not anti drugs however l am not a fan of the widespread use of antipsychotics.They do appear to be the flavour of the month.love you.X

Morning lady Mary is the play date still on?l hope so l think Sly will be grand.You seem to be doing ok thus far long may it continue.Sis is doing ok and went to see auntie yesterday she was ok also.Still in the wave so hanging in there.Have appointments tomorrow so probably won't be on.Hopefully back on Friday.My girls send their love.Speak soon Hen.love you my lady Mary HenX

. Morning NJ l agree the market will bounce back.We just have to hold our nerve.As for your son he will do what he wants he does seem a very sensible boy so l don't think he will take any unnecessary risks.love to you.X

Morning Intend Gilly Valley Free Bill Miyu Meems Esperanza Janice and everyone here sending you my love.X

[[Ol...]]

Hi Stut,

Thanks for the sweet words. I’m sorry you are still in a wave, that feels so unfair. You do always seem to roll with the punches though. I am still awake in the middle of the night, I’m not doing too bad, I just watched tv for too long tonight. Oops. Also spending too much time on social media worrying about the virus. I stayed  away from social media for a week but tonight I binged in it. Not good for calming the nerves!

So many things are being cancelled right now, it feels pretty scary. But I know they are canceling them for preventative measures so that is a good thing. It is certainly alarming though.

[[St...]]

Hi Stut,

Thanks for the sweet words. I’m sorry you are still in a wave, that feels so unfair. You do always seem to roll with the punches though. I am still awake in the middle of the night, I’m not doing too bad, I just watched tv for too long tonight. Oops. Also spending too much time on social media worrying about the virus. I stayed  away from social media for a week but tonight I binged in it. Not good for calming the nerves!

So many things are being cancelled right now, it feels pretty scary. But I know they are canceling them for preventative measures so that is a good thing. It is certainly alarming though.

Awe Olive nooooo 😕. Don't do that my love stay away from the scare mongering.l know we are all scared l have to say l am more worried for my relatives however if it spreads which it will we have to delay the spread as long as possible so keep doing what you are doing and try not to panic.Honestly l am more shocked at people's reaction 😵.Try to get some sleep honey and stay away from social media 😉.X

[[Tr...]]

Hi Stut,

 

My psychologist wants me to take  the Seroquel for a week to see how it goes.

I 'd rather have another kind of  sleep tablet. But am going to please her this time.

She wants me to reduce my visits to BB to 15 minutes once a week.

So this is it for now.

 

Hope to be back next week

 

Take care everyone.

[[Ma...]]

I'm sad.. I'm very sad. I'm so close to the cluster in NY. Schools are closing down in my State, not all but a couple so far and it's just a matter of time before more do. It's very difficult to cope when you have very little in the way of a healthy nervous system. It's a struggle when your benzo compromised. I'm trying to get enough beta blocker to last 3 months in case we get locked down like new Rochelle in NY. Uhggg.. I don't want to bring everyone down here but man this is a real bitch. 🤦‍♀️😷

 

Sorry Trishy, I was just shutting down when you posted last night. Try not to be sad, just be as proactive as possible.  I am sure your Dr will give you 90 days on the beta blocker, no reason not too.

All my meds are 90 days except a couple.  You can't let this take over your days, it could go on for awhile.  You could do the mail delivery or most pharmacies here deliver.  I don't want to sign up fo that yet, because I want to pick up my benzo's and estrogen patches.  If things get worse, I will think about it.  It's a scary situation, no doubt about it, but you can't let it rule your life.  We just got our first plane load from the cruise ship and expecting another one today.  While the last cruise ship, those people are being released.  Sitting home by yourself, which so many of us do, it's easy to let the thoughts start looping.  Nobody can control your thoughts or how you choose to handle this but you.

We are going through withdrawal, that's effecting me now.  The CV is an issue, but there is a very good chance, you nor Rich will get it.  I love you, hate to think you are just sitting there scaring yourself.  Mary 💜💜💜💜💜