The Long Hold Support Group

[[De...]]

H8 Stut!

Thank you. Im trying hard not to beat myself up. I feel like if I don't this will happen again. My life got so bad. I broke up with my bf, relapsed, got sober, now bwd. I def have alot more ferocious anxiety im not sure what is my own or wd. Im feeling a bit better everyday. I def will be holding for sure. Hope you are doing OK and work and family are good. Im trying not to push people away. Love Suzy

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Scaredie I really think you need a long hold to give your cns the time to stabilize before you keep tapering. I wouldn't tell the psych doctor more than you need to keep getting your prescription. Why risk any changes? All you need is your prescription. The hold, the taper and everything else will be planned by you based on your sxs, so I don't know why you'd want to try to convince your p doc of your sxs. He could make unwanted changes. I'd just keep the status quo with him to keep getting your prescription. Then taper at your own pace. That's just my opinion. I hope you find what works for you. I'd hold until you feel real real strong. When I see someone doubting so much about everything, I remember this being a symptom when I tapered myself into hell. It got better with a long hold but it took ages. As long as I keep improving, I'll keep holding. Good luck 🍀

Thanks again vali,

Well pcp wants me to tell p doc now-soon, so I don't think I have a choice. Ugh..

Also, I spoke with PCP again & he said, he meant he wanted me to tell eye doc all my sxs, & not be vague..ugh. So I went & had eye exam & could have said noting, but jotted down a few for visual sxs that were obviously brain related, but didn't mention benzos. Gave my med list. I felt so bad this dc was racking his brain, very concerned,  trying to figure out the cause & thinks it could be my MS. And asked for MS docs location & name.

I have MRI of brain & appointment with MS doc coming up. I'll have to tell him.

That's one of the reasons, I felt pressure to tell pdoc. Cause nuero will ask if I did.

Im really tired, unmotivated, anxious & depressed today-overdid yesterday. So don't think anything will happen today.

Here's what S.O. Suggested as to how to approach pdoc...: Doc I have these visual etc  sxs that I thought might have to do with my MS, that I didn't think to mention to you, until my pcp said that I should. I have my MRIs & Nuerology appointment coming up & am going to ask my nuerologist about it. But wanted make you aware to. Then tell him some visual & DR sxs & play dumb.

Thoughts?? I'm in it now. For all I know eye doc is contacting ms doc...ugh

I get the reasoning of not telling pdoc. I do. But this is scary. I can't even get a therapist if pdoc doesn't know.

What do you think of this approach?. I'm hoping there's not many questions as to when sxs started etc.

Thx

SC

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Oh & I can't tell if it's caffeine withdrawl & or side effects & or hormones & moths of poor sleep, too. I assume it's benzo related. But I absolutely get the out of no where, seeminingly uncontrollable, rage. And also sobbing meltdowns-those usually follow the rage.

It's scary not to be able to trust yourself-it's like random with the rage, but I'm still stabilizing.

Also, I totally went blanks eye doc & couldnt think of my neuros location & name for a minute. Once again makes me think it's the Xanax. I'm trying to take it so scheduled need it or not, so especially with the synthetic caffeine Ups & downs, sometimes I feel very over medicated.

SC

 

Hope all are feeling best you can 𝐓𝐨𝐝𝐚𝐲.

[[De...]]

Hi Scarring,

I get those sx too. My mind feels slow sometimes, like cognitive function 8s off. You should see the way I clean the house, lol. Its so frustrating im doing g everything like I have dementia. I had the rage after I dropped my gabap. Oh it was terrible. I was like an Army Sargeant around here. Even yelling at myself. Its crazy. I bet you don't have ms. I thought I had it too. It sure feels that way in wd. Its always good to get checked. Maybe you shouldn't drink caffeine. It messes me up too. I think that sounds like a good way to tell the docs. I know its uncomfortable,  I have to play dumb and as long as you just get the test and its negative, then im sure it wd. You will do fine. Ma6be you could right down what you think they will ask and put down your answers.  Maybe just tell them when 8m anxious I cant think straight or something. If you get confused in there. You can do this! Hope im making sense i cant think to clear st the moment either!!

[[Sc...]]

Hi Scarring,

I get those sx too. My mind feels slow sometimes, like cognitive function 8s off. You should see the way I clean the house, lol. Its so frustrating im doing g everything like I have dementia. I had the rage after I dropped my gabap. Oh it was terrible. I was like an Army Sargeant around here. Even yelling at myself. Its crazy. I bet you don't have ms. I thought I had it too. It sure feels that way in wd. Its always good to get checked. Maybe you shouldn't drink caffeine. It messes me up too. I think that sounds like a good way to tell the docs. I know its uncomfortable,  I have to play dumb and as long as you just get the test and its negative, then im sure it wd. You will do fine. Ma6be you could right down what you think they will ask and put down your answers.  Maybe just tell them when 8m anxious I cant think straight or something. If you get confused in there. You can do this! Hope im making sense i cant think to clear st the moment either!!

Thx so much for the support. Sorry short reply. To clarify. Unfortunately, I definitely already have coNfirmed MS. I'm just talking about a follow up appointment coming up ASAP that I felt it important to tell nuero & nuero will ask if I've told p doc. Thx for the e that that's a good way to tell pdoc.

I know I need to get off Caffeine but it's sorta my antidepressant & cognition etc helper right now.

I'll come back. Read this again. So tired cog fogged today,

Appreciate the feedback & spport much

SC

[[Tr...]]

Today has been calmer... Bipolar much!? I feel unstable. I can’t help obsess about how I was on these meds short term for a mild sleep issue that I had only for 2 weeks because of overworking. I should have never gone to that damn Dr. Now I’m experiencing things I never even knew were possible. The rage ladies... The rage inside that I never knew was possible... I guess the next two weeks will be rough and I just must hang tight. Thanks Trina.

[[De...]]

Sorry scardie! 

[[ki...]]

Trying, I can only imagine how frustrating it must be. I’ve been trying to taper/tapering since I got on these meds almost 3 years ago and it’s beyond irritating dealing with the ups and downs. I had an awful day yesterday too and today I’m mostly fine. I envy men not having to deal with this aspect of withdrawal.

[[ki...]]

Scaredie, is it possible to just limit your caffeine intake some? I know there are people who can’t have any in WD, but if it helps you and allows you maintain any sense of normalcy, it might be worth it to just reduce the amount you consume. I drink mostly decaf with a smidge of regular and I’m ok, I just can’t drink full caffeine coffee.

[[Gi...]]

Hello everyone,

 

I'm sorry so many of us are suffering, including myself.  The anxiety and chest pain were so bad on Monday I went to urgent care.  They sent me to ER.  I waited in line 20 minutes to get to the check in desk.  This, even though the doctor at urgent care called to let them know I needed to be seen immediately.

 

Once checked in I waited in a crowded waiting room until I was called to a window for vital signs.  More waiting then an EGG, back to waiting room.  Later called for chest x-ray then back to waiting room.  Another twenty minutes then called for blood draw, back to an even more crowded waiting room.  Not everyone was wearing a mask.  I waited another two hours and then left.  I felt like if I was going to die, I'd rather be home.

 

At home I tried various remedies and got the chest pain under control.  The anxiety was through the roof, so because I had an early appt with my cardiologist in the morning, I took a rescue dose of Ativan.  Then three hours later I took another.  I fell asleep and slept all night.  No pounding heart, blood pressure normal, no GI sx.  I was tired.  This lasted until 2 am yesterday then woke at two as usual.

 

My heart is fine, one very minimal change in echo and he wants to do another in a year.  It was caused by the high BP.  He said it was a benzo sx, took me off Clonidine and put me on Carvedilol.  Today my BP is normal, I  hope it works for the pounding heart, he thinks it will.

 

Monday I see my primary about this digestive issue.  In the meantime it is soft, small bland meals eaten very slowly.  I'm losing weight everyday.  My size 8 jeans which got covid snug are now loose having lost 13 lbs so far.

 

I've been up since 1 am. 

JWL, so sorry about the rage issue, how awful that must have been.  I have not had that but have had severe annoyance, lack of sleep for months really takes it's toll.

 

Stut your memory amazes me, I wish mine were even 50% of yours.  Covid increasing here too.  My daughter works in a school.  Her district has ordered all students return to class full time.  Masks and distancing are not required, staff not allowed to remind these children to wash their hands.  My daughter said two staff members have now been diagnosed with Covid.  She is terrified.  All you parents know how stressful it is when one of your children is under so much pressure and stress.

 

Scardie I can so relate to the cog fog.  My brain is like oatmeal.

 

Sorry this is so lengthy.  Trishy and I are distracting by watching Hallmark Christmas movies. 

 

I love you all and pray that things will settle down soon for you.  Ginger

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I sometimes wonder if rage is a reaction to depression. To me it's like my mind is fighting the downward spiral of hopelessness with anger. Like I'm saying, "i refuse to succumb to it and I'm going to fight it". IDK just a thought.

 

Scardie, From what I understand MS is a inflammatory condition. Look into Low Dose Naltrexone. A good book: The LDN Book.

[[...]]

Thanks Ginger. Man, what an ordeal. I'm glad you got your BP under control. I think it's criminal that they would force teachers (and students) to be in that environment.

 

I just noticed that you've been tapering about as long as I have. We're just chugging along, little by little, bit by bit, we'll make it to the finish line.

[[Ma...]]

I sometimes wonder if rage is a reaction to depression. To me it's like my mind is fighting the downward spiral of hopelessness with anger. Like I'm saying, "i refuse to succumb to it and I'm going to fight it". IDK just a thought.

 

Scardie, From what I understand MS is a inflammatory condition. Look into Low Dose Naltrexone. A good book: The LDN Book.

 

Jwl, I have always read, depression is anger turned inward.  But we are also in wd, so throw that in there and the shape of our country, it's hard not to be angry.    .  We all know , you are not an angry person at all.  You are very caring and we are glad to have you here.  Mary 🙋🏼

[[Ma...]]

GM, what a horrible time you had.  I am so so sorry.  Rescue doses are needed sometimes, but you went through hell for a couple of days.  Really glad the new med is working better.  I am not sure I could have stayed at that hospital as long as you did.  I just had an echo, mine was fine, I was at my heart Dr.  The room was very small, me, my husband and the guy that did it, were all in there.  I felt like I could hardly breathe.  Because my arm was behind my head , my mask kept creeping up until the mask was in my left eye. Horrible experience.  I thought I might run out of the room .  What we go through between wd and this damn virus.  Thinking about you my friend.  Glad things have calmed down some.  LY, Mary 🙋🏼😘♥️😷

[[De...]]

Omg gm,

I am so sorry for what you went through. Ive had those scary visits to the er several times. Glad you are home. I know 8ts not easy but try not to castrophize. I do it all the time ,but I've been catching myself before I go down the rabbit hole. Most the anxiety is chemical, remember 5he coping skills you used to help you relax. Thats crazy about the school, I really can't wait till this virus is gone. Love you dd

[[va...]]

VNM, I agree it’s a symptom, I just meant that WD (at least for me) causes depression and the rage is a symptom of that. Of course there’s no one-size-fits all in this process. ❤️

 

I should add that when I mentioned benzo rage as a separate symptom unrelated to depression, my therapist actually accepted that as a possibility.

 

Hi kitsune 💚💚💚. Yes everything's possible in benzo land 😭😂

 

I couldn't catch up lately but I hope everyone sees a better day tomorrow.

 

Sending you strength to gingermint.

[[Sc...]]

Deh2- that's ok.

 

Kit-thank you, yes, I am trying to limit the caffeine. It's been hard to gage its effects & ()in what I'm drinking because I can't drink anything acidic, so I Reli ing on synthetic caffeine water-its very diffierent than coffee or tea.  I'm trying to figure it out. I thought I was getting it down better. I measure it.  I did however mess up yesterday, trying to get too much done in a day & had some extra & later(I had more than one appointment & went to lunch with S.O. Between them & started crying & fatigue after lunch after a pretty good mood motivation all morning,) so since I had to go to eye doc I risked sipping more caffeine water & sure enough my mood & fatigue lifted again & I was able to make it through that appointment, ok. So I think I was having caffeine withdrawl around noon.[i realize this isn't a healthy nor sustainable way to function-just trying to figure out one day @ a time till things settle down] (Caffeine water has much less caffeine than a cup of coffee, but synthetic so tricky)think I'm paying for it today. Goal is to wean off, but many doc appointments coming up & yes, trying to stay semi functional. This stuff is tricky-can be fine at certain amount one day & push into panic or irritability the next.

 

Yes I'm tired & no perk, but the overwhelming hopelessness, sobbing, & anxiety is freaking me out a bit today. And my vision is more off. I know I need to get a handle on this. I'm typically not out that long & just let myself get sad & or tired at home. Does anyone get these bouts of absolute hopeless despair? Like a day after overdoing it? Other thing could be impacting is a steroid injection into a joint n Monday. But today's meltdowns have to be from too much caffeine yesterday. Sooo scary.

 

GM, I'm sorry to hear all you went through. I'm not up on everyone's story yet & my brain isn't taking things in today, so please pardon. I wish you well & thanks for saying hi.

 

Does anyone ever get just so frustrated, scared & distraught, you want to cry to your mommy?

I get so down & frghtened. I don't know if the DR makes it worse.

 

Healing thoughts to all, with your individual issues.

 

P.S. I made a pdoc appointment for next week. So plan is to say I was going to tell my MS doc about these sxs & was talking to PCP & he mentioned that I should let you know too. And just tell him my sxs & see what he says, I guess.?.? Thoughts?.?

 

Everything is such a chore like this. I'll have to make notes & read sxs & not say wrong thing etc.

 

I'm feeling so frightened & stuck today, guys. Sorry.

 

SC❤️

 

 

[[Sc...]]

I sometimes wonder if rage is a reaction to depression. To me it's like my mind is fighting the downward spiral of hopelessness with anger. Like I'm saying, "i refuse to succumb to it and I'm going to fight it". IDK just a thought.

 

Scardie, From what I understand MS is a inflammatory condition. Look into Low Dose Naltrexone. A good book: The LDN Book.

Jwl, how thoughtful. Thank you. Yes it is. I tried LDN a couple of years ago & did not react well. I could maybe circle  back around to it again sometime.

 

RE - rage- depression has so many symptoms. I can understand what your saying about fighting it with rage,  maybe on a subconscious auto response reaction.

Hope you feel better.

SC

[[Sc...]]

Hi Scarring,

I get those sx too. My mind feels slow sometimes, like cognitive function 8s off. You should see the way I clean the house, lol. Its so frustrating im doing g everything like I have dementia. I had the rage after I dropped my gabap. Oh it was terrible. I was like an Army Sargeant around here. Even yelling at myself. Its crazy. I bet you don't have ms. I thought I had it too. It sure feels that way in wd. Its always good to get checked. Maybe you shouldn't drink caffeine. It messes me up too. I think that sounds like a good way to tell the docs. I know its uncomfortable,  I have to play dumb and as long as you just get the test and its negative, then im sure it wd. You will do fine. Ma6be you could right down what you think they will ask and put down your answers.  Maybe just tell them when 8m anxious I cant think straight or something. If you get confused in there. You can do this! Hope im making sense i cant think to clear st the moment either!!

What a supportive, thoughtful reply. Thx. Sorry you have the cog fog, too. Yes, housecleaning is a good example-I'll sometimes walk in there to change ir start a load of laundry, then get side tracked off to doing something else, then come back & realize I put clothes in but didn't start the washer! Like that? Lol yes, yelling at self or the walls...truly awful. Thanks for the appointment ideas. Not sure I could think out their questions...but I think I can remember to say, that when I'm anxious, I can't think straight. I'll def have to make notes of my sxs. I simply cannot think on my feet...or don't trust self too..haha Hears to clarity!

[[Sh...]]

Last 2 cycles I have been completely smashed with waves so brutal I’ve been non functional for a few days. I guess I’m in good company! I’ve just come out of a 3 day wave on day 3 of period. I’ve read on here some peoples colour change mine is only red for 1 day (tmi) feeling for us all x

[[tr...]]

Today has been calmer... Bipolar much!? I feel unstable. I can’t help obsess about how I was on these meds short term for a mild sleep issue that I had only for 2 weeks because of overworking. I should have never gone to that damn Dr. Now I’m experiencing things I never even knew were possible. The rage ladies... The rage inside that I never knew was possible... I guess the next two weeks will be rough and I just must hang tight. Thanks Trina.

 

"bipolar much"..lol - at least you've kept your sarcasm   But seriously I think we've all had the rage. I remember screaming in my car over all of this - more than once...

 

Kits: I give you long taper ppl credit..its def a long haul journey. I had no option but a rapid taper. But remember you're being kinder to your body. As fro men - rthey may not be dealing with the menstrual waves - but I'm sure problems with performance and being flaccid have got to be crushing..

 

Shayna: I feel you..I've def been non-functional at that "time". I specifically remember being way back on our property sobbing laying on the ground, gripping the tall grass as I felt I was losing my mind. Sorry I know thats a vivid description..but this literally brings us to our knees in desperation.

 

hugs my ladies! We will heal..

[[Sh...]]

Today has been calmer... Bipolar much!? I feel unstable. I can’t help obsess about how I was on these meds short term for a mild sleep issue that I had only for 2 weeks because of overworking. I should have never gone to that damn Dr. Now I’m experiencing things I never even knew were possible. The rage ladies... The rage inside that I never knew was possible... I guess the next two weeks will be rough and I just must hang tight. Thanks Trina.

 

"bipolar much"..lol - at least you've kept your sarcasm   But seriously I think we've all had the rage. I remember screaming in my car over all of this - more than once...

 

Kits: I give you long taper ppl credit..its def a long haul journey. I had no option but a rapid taper. But remember you're being kinder to your body. As fro men - rthey may not be dealing with the menstrual waves - but I'm sure problems with performance and being flaccid have got to be crushing..

 

Shayna: I feel you..I've def been non-functional at that "time". I specifically remember being way back on our property sobbing laying on the ground, gripping the tall grass as I felt I was losing my mind. Sorry I know thats a vivid description..but this literally brings us to our knees in desperation.

 

hugs my ladies! We will heal..

 

Wow trina x I wish I could have been there to give u a big cuddle. It’s hard enough without periods on top. I sobbed all day yesterday, thank god for rom coms else I think I might have gone crazy. Guess that’s why a lot of us ladies end up on these drugs to begin with.... hormones!

[[va...]]

Stut, I'm sorry to read the news and see that cases are also rising so high in your area. I'm afraid of the stress this can mean to you working in the hospital. I hope things don't get too out of hand. I hope your brain is healing from the cuts. I hope your daughter is well and happy and healthy, and I'm sending a big hug to you, daisy and muffins.

[[ja...]]

Hi guys,

Sorry I couldn't read everyone posts.

I was so bad for almost a week. Then I started having my periods yesterday and the same day I was able to get out of bed, mow the lawn and rake the leaves. Sleep returned to 8 hours. The importance of the hormonal balance blows my mind. Now trying not to do too much when I feel good.

[[Sc...]]

Hi I'm old new here. Glad your doing better. 💕

That's something I was just wondering, it's blowing my mind.

I don't know if it's different since I have DR & visual distortions, MS, & am trying to wean caffeine, but

Was wondering, do other people have like one relatively good functional day, then get 2 or more barely functional, completely fatigued, extra cog fogged, depressed, can't push through it, need to rest in bed days?

Even in a hold?

Hope all are well

XX

SC