The Long Hold Support Group

[[St...]]

Glad to hear you are doing well begood l stay with your little village as it is very kind and supportive.l know some are really suffering but they have a safe haven to go to.l think that means everything.You have a good heart begood and that shines through my friend.

    Love and hugs Stut X

[[Ma...]]

Mary l used to like you lol.l know my username is very masculine l don't even know where l picked it up from.Ah well l am stuck with it.Mrs Stut signing out.

    Love Stut X

 

Sooo sorry Mrs.  Stut, I came in on page 1000 on some of these posts and should remember to look at the color, not the name.  Forgive me ❤️ Stut X 

[[St...]]

Your alright Mary sure l did it to Gard lol.l have been called a lot worse l am perfectly sure.l hope you have a good day.

  Love Mrs Stut X

[[be...]]

Glad to hear you are doing well begood l stay with your little village as it is very kind and supportive.l know some are really suffering but they have a safe haven to go to.l think that means everything.You have a good heart begood and that shines through my friend.

    Love and hugs Stut X

 

[[Sc...]]

Thanks Stut & MiYu about your concern about ms. I’m a however unfortunately as positive as one can be with the fact that I have ms. It’s not diagnosed merely by symptoms. I’ve seen 3 nuerologits, the 1st diagnosing one(much general nuro experience), did lumbar puncture, that has o bands,  mris, demylinating lesions on brain, plus symptoms, the second opinion one(very experienced & focused on ms) agreed, & now this final ms specialist Nero whom has spent his entire career in ms, I s ranked in the top ten in the us, who concurs, that I have ms. This started symptom wise in 2016. The medication is only to stop disease progression, it doesn’t make you feel any better. Then there are the Meds for symptoms, like those I spoke of.

I’m so scared to start the med & try to inject myself 3 times a week, keeping track of when, where. Many folk do fine with it. Some can’t stand the skin welts/pain/scarring of the injections. That’s why I said, we will see how med goes.

Cant I’m trying to clarify.

You’ve quit gabapentin? You took it for nerve pain? And it worked  Did it cause withdrawal? Fatigue?

 

You’re still on lyrica & tapering off? It causes you to need to take more? It gives you energy? You used in place of benzo updose? That worked to use inplace of benzo updose for anxiety? Withdrawal sxs?

 

All others, I feel like a jerk for inquiring about coffee & updosing for sleep, especially while all are having sleep problems. I hope you’re all doing well. Apologize if I offended anyone. Things aren’t honky Dory. My mood is very unstable, energy/fatigue is bad & sleep isn’t even great with an updose.

 

Dreaming sounds wonderful. Hope everyone’s sleep & other sxs continue to improve.

 

Thoughts on quitting coffee?

 

MiYu or others that took teva clonazapam, what are your thoughts/experiences going on with that?

Be well SC

 

 

[[Ca...]]

Glad to hear that Cant hopefully C15 will be up and about in no time.Are you feeling any better?

    Love Stut X

Hi Stut,

How are you going??

Im ok, still cycling SX, and feel a bit flu like but no temp... And a good benzo flu is a trade mark of mine.. So just rolling with it all as we do.. Lots of rest...

C15, is doing ok, but his temp is up a bit, so keeping an eye on him...

Thanks..

 

 

[[Ca...]]

Thanks Stut & MiYu about your concern about ms. I’m a however unfortunately as positive as one can be with the fact that I have ms. It’s not diagnosed merely by symptoms. I’ve seen 3 nuerologits, the 1st diagnosing one(much general nuro experience), did lumbar puncture, that has o bands,  mris, demylinating lesions on brain, plus symptoms, the second opinion one(very experienced & focused on ms) agreed, & now this final ms specialist Nero whom has spent his entire career in ms, I s ranked in the top ten in the us, who concurs, that I have ms. This started symptom wise in 2016. The medication is only to stop disease progression, it doesn’t make you feel any better. Then there are the Meds for symptoms, like those I spoke of.

I’m so scared to start the med & try to inject myself 3 times a week, keeping track of when, where. Many folk do fine with it. Some can’t stand the skin welts/pain/scarring of the injections. That’s why I said, we will see how med goes.

Cant I’m trying to clarify.

You’ve quit gabapentin? You took it for nerve pain? And it worked  Did it cause withdrawal? Fatigue?

 

You’re still on lyrica & tapering off? It causes you to need to take more? It gives you energy? You used in place of benzo updose? That worked to use inplace of benzo updose for anxiety? Withdrawal sxs?

 

All others, I feel like a jerk for inquiring about coffee & updosing for sleep, especially while all are having sleep problems. I hope you’re all doing well. Apologize if I offended anyone. Things aren’t honky Dory. My mood is very unstable, energy/fatigue is bad & sleep isn’t even great with an updose.

 

Dreaming sounds wonderful. Hope everyone’s sleep & other sxs continue to improve.

 

Thoughts on quitting coffee?

 

MiYu or others that took teva clonazapam, what are your thoughts/experiences going on with that?

Be well SC

Hi SC,

Sorry to hear your news... You will find the strength to adapt as you need, to do the best you can...

How we do it I dont know, but we do...

 

A very big question you ask, were I to answer it in detail...

Valium is a recent med for me, my most recent...

So I have taken those meds for nerve pain on and off since the accident, at times consistently, and also as needed from days to months apart...

I never had an issue until valium WD was involved...

I then did some trials for myself as a taper aid... and to see what the WD was like short term...

I also had other life events going on...

I resolved the nerve issues, and find no long term use for them that a slower taper or Dose Correction wouldnt fix...

To get the energy boost, and it was significant, I had to increase my lyrica every couple of weeks (otherwise it made me very spaced out and boaty)... I then immediately started tapering it when I could (that was at 300/day)

For me anxiety is a very recent low dose SX... Fatigue is the problem...

 

For severe nerve pain Yes, but other than that im not generally a fan...

But there are always exeptions...

 

Hope that helps...

 

 

[[St...]]

Good Cant keep his temp down if possible that's probably the old fashioned way l have read new reports that say not to do that however l would always be concerned about seizures.l hope he bounces back soon and you don't catch it.

  I am alright still adjusting to life changes but you know what it will be ok.l find the loneliness the hardest but the good thing is my wee girl was building her business so she hasn't been here a lot over the last few months.l will paddle on that's what I do.Just roll with it.

    I hope your withdrawal symptoms ease up you seem to be suffering longer than usual but l could be wrong.

    Love Stut X

[[To...]]

Thanks BG and Stut,

C15 is much better today.. Think he sweated it out...!!

 

Hope Everyone is holding up ok...

 

So glad to hear this Cant - hope C15 continues to improve.

[[To...]]

Olive,Blue,SS,TMB, Trish,Dee, Valley, Laura and everyone l have missed hoping you all have a better day.

    Love Stut X

Thanks, Stut. Sleep continues to get worse and I seem to be backsliding. Trying not to panic into a spiral. My family (minus oldest son) is trying to rally around me. Hard to keep up with posts.

 

Be well....

[[St...]]

TMB please do not panic you are having an increase in symptoms which is very common as you know.l am glad your family are with you sadly not all but you know your children and l think we know who will be there and the ones that won't.l hope with time they will come back to you however it will probably be when things level out a bit.

  I wish l could advise you on sleep however I think it is something which only time can sort out.

  Love Stut X

[[Ca...]]

Thanks BG and Stut,

C15 is much better today.. Think he sweated it out...!!

 

Hope Everyone is holding up ok...

 

So glad to hear this Cant - hope C15 continues to improve.

Thanks TMB...

We are getting there...

Hope things improve for you also...

 

[[Tr...]]

Hey everyone,

Had that psychiatrist appt..well she diagnosed me with PTSD with bouts of depression and anxiety/panic disorder..she said she wants my heart checked as Xanax can have an affect on the heart and I already have arrythmia. She wants to keep me on the 1.5 mgs of Xanax and add lexapro or drug in that class. She said def. Taper off Xanax at a later date. So.. I think I'll just stick with the patient Dr I have now whose not pushing another drug on me at the moment. This is so frustrating..will it ever end 

 

To all my friends having sleep issues still, wishing you all peaceful, restful nights ahead..

Trish

[[Ca...]]

Good Cant keep his temp down if possible that's probably the old fashioned way l have read new reports that say not to do that however l would always be concerned about seizures.l hope he bounces back soon and you don't catch it.

  I am alright still adjusting to life changes but you know what it will be ok.l find the loneliness the hardest but the good thing is my wee girl was building her business so she hasn't been here a lot over the last few months.l will paddle on that's what I do.Just roll with it.

    I hope your withdrawal symptoms ease up you seem to be suffering longer than usual but l could be wrong.

    Love Stut X

Sorry Miss Stut, I missed this...

 

Yes, things are taking longer, and new SX emerging or old ones dropping in...  New territory i guess..

I agree on the temp, short term spiking is a tool, but within reason... Particularly for Flu, but not general infections...

It got to the limits of a high temp, but I did medicate him thank goodness..

 

New things will soon fill your time, your attitude will pull you forwards.. Have you ever wanted to study? -or take a cruise..!! Lol

 

I just spoke of nerve pain from my accident today... Guess what.. - First bout in a year and a half, I think...

Shattering... 10/10 pain...  but its intermittant, thank god...

Shouldnt last too long I hope...

Lol, -this is one thing i will scream about...!!

 

Im out...

 

Take care Stut...

 

[[ga...]]

Hey everyone,

Had that psychiatrist appt..well she diagnosed me with PTSD with bouts of depression and anxiety/panic disorder..she said she wants my heart checked as Xanax can have an affect on the heart and I already have arrythmia. She wants to keep me on the 1.5 mgs of Xanax and add lexapro or drug in that class. She said def. Taper off Xanax at a later date. So.. I think I'll just stick with the patient Dr I have now whose not pushing another drug on me at the moment. This is so frustrating..will it ever end 

 

To all my friends having sleep issues still, wishing you all peaceful, restful nights ahead..

Trish

 

I'm so sorry about the psychiatrist, Trish. I'd like to give my opinion: You are unlikely to get an accurate psych diagnosis when you are withdrawing from a benzo. A diagnosis may be correct. A diagnosis could disappear after you are healed from the effects of the Xanax. So take those diagnoses with a grain of salt.

 

I think your choice not to add more drugs is a good one. It could potentially destabilize you even more. Potentially, but I think you're right to be cautious.

 

It's good to stay with a doctor who will write your scripts and give you all the time you need to stabilize and taper. If you have that, then you have the most important thing.

 

Yes, it will end. I had to hold for a year when I was destabilized from cutting too fast. It was so hard but it was the right thing. I could tell when I was stable. I waited a bit longer to make sure. Now I'm tapering again and not in agony every day any more. You'll get there, too.

 

Gard

 

edit: fixing typos

[[fr...]]

  So sorry about the nerve pain, it’s awful isn’t it?  This is my main problem among so many others and if I could get this under control I wouldn’t feel so hopeless.  Feel better.

[[Ca...]]

  So sorry about the nerve pain, it’s awful isn’t it?  This is my main problem among so many others and if I could get this under control I wouldn’t feel so hopeless.  Feel better.

Thanks Free..

Yes, I did think of you, -inbetween screams... C15 is on a bed by the fire and woke up with a WTF..!!

Sun is up... So Good morning..!!

-Hang in there dear Free...

[[St...]]

Awe mate that is hideous Cant l think you are my hero .l swear you are one of the bravest men l think l have met.Now you can take that as a compliment but l have met some twats over the years lol.Seriously you keep on battling and that is amazing.Nerve pain is horrendous but l don't doubt you will keep fighting.l hope you have a better day tomorrow.

  Love Stut X

[[St...]]

Hi free l wish you could have a break for at least one day.l do believe you will get through this please do not lose hope.l always read begood's blog and my heart goes out to you.Sending you a hug.

  Love Stut X

[[St...]]

Hi Trish totally agree with Gard on that one.You seem to have your head screwed on so trust your gut and do what is best for you.

    Hi Gard

    Love Stut X

[[bl...]]

NJ: thanks for kind words re award. It was sweet. These little moments do matter.

 

Heath: glad you slept. I was at a loss with the insomnia until I started the lexapro. Not proud that I had to add another drug during taper but it’s just something I’ll have to taper after this taper. It’s ok. Slow and steady. Whatever it takes for us

 

Stut; how you doing? Feeling ok?

[[Tr...]]

Thank you Gard and Stut,

 

I feel much better about my decision now after hearing from both of you. I appreciate your advice and opinions always!! Sending you both lots of HUGS!!

 

I hope you're both doing ok?? Stut I hope the loneliness is letting up for you, I know it's been rough 

 

Gard, I hope everything is well with you..I have to catch up on the posts to see how everyone has been doing..it goes fast around here, have to do some back tracking.

 

Thanks again ladies, and to all others who have reached out to this"newbie" you're all a blessing.

 

Trish

 

 

[[be...]]

Cant, I am so sorry to hear you are battling nerve pain, I have never had this, but I know Free struggles with this and others here. Seems so unfair with all you have been through. I agree with Stut and you already know this...You are My Hero, I think I told you this many moons ago. I hope that the discomfort is easing up...scream all you want, release the pain. You are in my thoughts My Dear Friend. Stay Strong and Stand Tall. 💖 Peace and Healing Hugs.

[[ga...]]

I'm so sorry to hear your nerve pain is back, Cant. I pray you are able to sleep. Chronic pain can be so exhausting. I pray this flare will let up for you soon.

 

Gard

[[Ca...]]

  So sorry about the nerve pain, it’s awful isn’t it?  This is my main problem among so many others and if I could get this under control I wouldn’t feel so hopeless.  Feel better.

Nerve pain was hell for me - couldn't sleep, eat, get away from it, control it - it totally took over my consciousness. Gabapentin saved me - now years later I'm trying to get out from under it - but the nerve pain is usually gone. Replaced by other fun things, but gone. Free and Cant yours will go to.