BeWell: AD taper

[Altostrata]

I wish more was known about post-acute discontinuation syndrome. There's no clear solution, you'll have to move cautiously and see what helps.

[BeWell]

@Altostrata I agree. It’s just hard to fix broken with broken. And that’s how I feel..so broken..my w/d’s are severe..the lost is endless..but, if meds caused the aka, dystonia, TD, etc...no way of knowing what it would correct....

[BeWell]

@Altostrata or make worse..if I could add a med..no problem..and know I would be ok..I would do it in a heart beat. My Doctor wanted to add a different class of antidepressant - I am scared.

[Altostrata]

Sorry, all I can do is guess. Would you say the diazepam is helping?

[BeWell]

@Altostrata I wish I knew. My friend who I was staying with in the beginning..said it has made me worse. (Prior to starting the Valium). They updosed me, downdosed me (hospital), updosed out of hospital. I am not able to be upright. Unless, I am having an attack..of physical AKA. Or a pain attack.

[BeWell]

@Altostrata Should I take 1/2 Diazepam tablet tonight with 1/2 liquid? And do the same in the am. No nicotine or Aspartame today so far. I have one 2mg tablet left. I never thought I would have to deal with liquid drugs and syringes again. Having horrible PTSD. From gabapentin and Prozac. But, here I am..

[BeWell]

@Shep@Altostrata@Songbird I am crossing over to liquid Valium today. In 45 minutes. How do I take that. Mix with juice? Take directly out of syringe? Chase it with juice? Please advise?

[BeWell]

A typical night notes -

8:30pm 2 mg Valium - on SAD whole time 

11:20pm attempted bed - daughter called twice - now wide awake - panic (hyper-alert) after falling asleep

restless legs, arms, hands, fist clenching, pain limbs, td in right foot, burning, tingling, etc, body twisting, etc

2:15am - woke w/ heart burn more of the same physical symptoms - itchy nose - pick face - bad nervous habit - hair, nose, lips, lick lips, teeth clenching, wake often with hands folded or in fists, racing heart, muscle spasms, and repeat. Muscle weak weakness, fatigue to try to sit upright.

4:50am after several wakes - racing heart- feel tremors- bouncing chest-in back too - maybe muscle spasm-all though legs and arms as well. Got highly agitated. Racing thoughts. Re/ w/d’s dystonia, liquid Valium, joints burn, arms burn, anxiety or muscles, I do not know. Thought of getting up to pace. Fought it out in bed - body constantly has to be moving. Mind racing. As I write now 8:10am trying to sit upright chest is heavy. Pillow between knees to sleep. Always thrashing around in night. Tinnitus. Hyper - alert to sounds, etc. major upset is the inability to hold items, drop them. Sit still. Lay still. Stand still. Arms and legs doing something at all times. Dry mouth. Trouble swallow

ing. Muscle spasms head to toe. Heart racing still -8-15am.

7:50am - wake again - urge to bm - not the greatest - loose bm - belching - heart racing. On feet to let cat on deck - heaviness in chest - feel Panic attack coming - short of breath. Retreat to bedroom - to lay down and go on SAD. Reading threads. Goal today - keep notes - shouldn’t be too hard. In bed all day. Had a lot of nausea yesterday and some dry heaving, extreme lethargy, no motivation, SI, laid in bed all day yesterday battling symptoms. Walking around house and being upright was really hard. I did have one nic gum yesterday w/aspartame. At about 7:15pm last night. I. D.o.n.t know what to do w/out gum. Regular or w/ nicotine? It has aspartame. A lot of licking of lips, biting, etc. Heart still jumping around. Maybe muscle spasm. It is painful though. In w/d’s I have had terrible chest crushing pain. Please forgive me for 1 relapse of gum. I kept it in less than a couple mins. Getting ready to take first liquid Valium. No plans for today. Other than to try and survive.

 

 

 

[Altostrata]

You're taking Valium once a day? Your symptom pattern is worse in the evening, after you take it? Has it gotten worse since your increase to 4mg?

 

If I were you, I'd accomplish the switch by taking half of your 4mg dose in tablet form (2mg) and half in liquid (2mg).

 

Attention @Shep

[BeWell]

I take my diazepam @ 8:30am & 8:30pm. Since I started. Not sure why..but that is how my dr. set it up. I ran out of 2mg pills. I had to go straight to liquid this am. To be honest..my symptom patterns are the same around the clock. Although pain is usually higher at night. Or afternoon/ evening. I am going to work really hard to put daily notes in @Altostrata. So, we can figure out how to get me some relief.

[BeWell]

@Altostrata@Shep I am not sure if I have gotten worse on 4mg or not. I just see the the decline mentally and physically and emotionally as progressive. Now, it’s hard to know which is from AD withdrawal/ Valium side affect. Etc. I am just so curious if the arm thing is burning anxiety or burning muscle tension. Or cortisol adrenaline.

[Shep]

6 hours ago, BeWell said:

I am crossing over to liquid Valium today. In 45 minutes. How do I take that. Mix with juice? Take directly out of syringe? Chase it with juice? Please advise?

 

From the posts you made after this, it sounds like you already started the liquid Valium.

 

Right now, you only need to follow the directions on the package (or call your pharmacist) in order to get your 2 mg dose. 

 

When you are ready to taper, we'll go through how to dilute the liquid Valium in water so you can make very small reductions. But for now, you can simply follow the directions on the package to get your 2 mg dose. 

 

6 hours ago, BeWell said:

teeth clenching

 

Please see:

 

Face, jaw, tongue muscle tension and pain, bruxism, teeth clenching, tics, TMJ

 

Do you wear a nightguard? You may want to get one either from your dentist or you can get one over-the-counter. 

 

Here is an example of one that's over-the-counter:

 

CVS - nighttime dental guard

 

It may help avoid future dental work, as well as make you more comfortable. 

 

[BeWell]

@Shep I dropped the liquid Valium in a little cranberry juice this am. What do you think? I have tried a cheap mouth guard in the past. It was too uncomfortable. I am not working. And my family is paying my bills. I could try another cheapo though. Concerned about the smoking thing and gum thing though. 4/7 was my last cigarette. Inpatient hospital = nicotine gum and trident. Both have aspartame. I had started the trident some time in March. I have been told no Aspartame or artificial sweeteners. And I really would like to chew some gum. Or smoke a cigarette. But, I really can’t light up another cig..it’s far too addicting. I had one piece of nicotine gum yesterday with aspartame in it. @Altostrata said no more Aspartame or artificial sweeteners. Does this include Stevia? And the sweeteners in Pur gum??? Which says there is no aspartame in it? Could you look up the ingredients in  Pur gum? They sell it on Amazon. So..if I am unable to smoke or chew nicotine gum what is the risk in severe withdrawals? Of the nicotine cold turkey. I am going to attempt to find nicotine gum / with nothing in it - puke. I just want to chew something..and not a straw or a carrot. Ugh.

[Altostrata]

I'm sorry, we don't counsel regarding smoking cessation. I'd get a cheap night guard.

 

Do NOT ingest any more aspartame. Stevia is okay. No, I will not look up ingredients in gum, look it up yourself. Please have respect for my time.

[BeWell]

@Altostrata The only reason I asked about smoking was because Shep told me not to stop in W/D’s. The ingredients are xylitol, gum base, gum Arabic, natural flavors, glycerol, malic acid, citric acid, carnauba wax, tocopherols in the Pur Gum - no asparatame. Do you know anything thing regarding those chemicals?  

 

I apologize for for being insensitive. I didn’t realize I had the empty gum package.

 

Thank you both for your help. And your time. I do appreciate it all. 

[Altostrata]

It sounds like you've been using the gum, etc. to reduce your smoking for some time. If you're part way through going off cigarettes, I'd go off.

 

Please consult Dr. Google for any gum ingredients you don't recognize and read up on adverse effects of artificial sweeteners such as aspartame.

[BeWell]

@Altostrata. Dr. Google is that on this site?

[BeWell]

@Altostrata Thank you!

[Altostrata]

It's Google search on the Internet.

[BeWell]

5/11

8:30pm  took 2nd dose liquid Valium 2mg

headache - sensitivity to light - poor short term memory - time losses

10:30pm - 8:30am in bed - up several times in night w/pain, restlessness

5/12

5:30 am - 8:30 am anxiety ramping up - dark thoughts, thoughts in a loop, repetitive, intrusive thoughts, mind racing, severe pain in neck - shoulders - back. Severe Depression. D/R, D/P, etc. Had hallucination dreams one has before falling asleep. Felt drugged beyond belief when transferring beds in the night. Extremely restless. RLS - arms - legs - hands clenching - body twisting. AKA TD - right foot. Muscle spasms entire body. Right eye twitching all day yesterday. Extremely nervous yesterday. Extreme. On feet much more. But, inability to sit/ stand / lay still. Blurry vision. 

11am - nausea off and on all am. Noticed this about three days ago. Fatigue. Foot burning. Lower back - hormonal issues. I have not been out of bed yet..other than to take meds. Brain fog/ memory issues - daily. Feeling hopeless. I am on my phone 11 hours a day. Now..I am just “blah anxious” ....like a nervous zombie laying here in physical and mental pain. I have major OCD as well. Jelly legs or lead legs. Muscle weakness. Now arms hurt really bad. Feel very drowsy. But, too much pain to close my eyes. Ear issues. Hard to make a symptom list - when too many debilitating symptoms at play. 

. 

 

[BeWell]

Has anyone out there re-instated at nearly 5 months off of multiple years of prescribed drugs? With body movement issues? Toes and foot cramping on own. Dystonia? And AKA - mental and physical? We added Valium about a month and a half ago. I have severe w/d’s. Are these permanent? The movement disorders? I have atleast 30 other severe symtoms. Feeling desperate? I want to know if anyone has had success with re-instating with movement disorders? I have severe depression and anxiety and panic as well as the flat emotion. And strong SI. If this was purely mental..I would re-instate in a heartbeat..

[BeWell]

As well as physical pain..

[Shep]

17 hours ago, BeWell said:

I am on my phone 11 hours a day.

 

BeWell, are you spending 11 hours a day reading the online withdrawal forums on your phone? Or are you doing research? Research is good, but please be mindful of your time spent with too much technology. 

 

Just the act of being on your phone all day can cause a lot of problems, including physical pain because you are hunched over your phone. 

 

You may want to limit yourself to just an hour or two a day and try to bring in some healthier distractions. 

 

The Beyond Meds website is written by someone on this forum (GiaK) who came off a large drug cocktail. She describes the toolkit she set up that helped her with her recovery.

 

Beyond Meds - Toolbox

 

You may want to set up your own toolbox of gentle yoga stretches, guided meditations, walks outside, etc. Here is some information to get you started.

 

Gentle yoga: 

 

12 Minute Yoga in Bed to Unwind video 

 

10 Minute Gentle Yoga in Bed Sequence video

 

Breathing exercises:

 

The Breathing Space by Jon Kabat Zinn video (4 minutes)

 

4-7-8 Breathing Exercise by GoZen video (3.5 minutes)

 

With nothing else works, distraction is key. Here are some ideas:

 

"Change the channel" -- dealing with cognitive symptoms

 

Some ideas for distraction include jigsaw puzzles and adult coloring books (you can order them online on Amazon and other retailers). 

 

You may want to try the breathing space video and one of the yoga-in-bed videos when you take your morning dose and when you take the evening dose. This will keep your muscles stretched with the yoga and the breathing space video will help settle the mind, as much as possible. 

 

And then see if you can find some distractions during the day that take you away from your phone. 

 

Keep in mind that benzos are muscle relaxers, so when we come off them, our muscles tighten up. So the last thing you want to do is spend all day hunched over a cell phone. 

 

Try setting up your own toolbox of distractions and healthy activities and see how you feel over the coming days. 

[BeWell]

Thank you for your reply. I am curled up in bed “moving” all day with my phone. Due to the severity of the movement disorders/ aka - physical and mental - TD - dystonia. I have a hard time sitting anywhere, standing anywhere, all tasks. I am unable to sit up in bed either or stop moving. I am unable to go outside. Or bathe. I wish I could articulate better what is going on with me. Yes, I am reading on the forums. Not much research because I don’t like what I see. I am trapped in hell w/ debilitating movement disorders, severe depression, SI, agitation, monophobia,  The list is endless. I was having the body pain, etc., aka - physical and mental, TD, dystonia..prior to starting the benzo. I was a fast taper and severe from the beginning. I am feeling very ashamed, frightful and suicidal. I am going mad. Because I live in my bed feeling very physically and mentally disabled. Even if someone is talking to me..I can not relax or concentrate on what they are saying. And have to be moving or looking at phone. It’s like this terrible high w/out the high.

 

[BeWell]

4:30am wake - several wake ups between 12:30 - 4 Twist and turn until 6:30am.

 

6:30am-8:30am - Pain, racing thoughts, extreme anxiety, heart beating out of chest. Some nausea. D/R, D/P,  Fog. Body pain - TD, Dystonia, Etc. Itch nose, pick face, woke to mouth wide open. Top teeth on lip. Hands going into fists. Under head. All twisted around. Constant twisting in bed. 

 

8:30am took .4ml Diazepam. Ate banana laying down. Water.

 

10am trying to sit up. Nausea.

 

In bed - not able to distract except with phone. 

 

Passed out for awhile - woke at 1:30pm. Loud sound outside during nap. Ears hurt. Legs hurt. Right foot TD. Hurts. Some Jaw pain. Feeling as if dying..

 

2:30pm - body hurts so bad. Legs. Tons of muscle spasms. Back. Arms.

 

Strong SI all day.

 

I notice when the Valium wears off..everything increases by 1000. It’s like I come alive in not a good way.

 

5pm - this is when it happened today. I start to panic. Get highly agitated, anxious, SI, AKA - mental and try to hide it in my bed. Crawling out of skin. Not safe to be alone. I need relief. I appreciate all the coping threads..but since I’ve come..I’ve been to unwell to try. Hands are burning right now. I am doing my weird breathing thing. I want my suffering to end. My dad running out for a a little bit. I hope I can behave. The agitation and AKA is too much for me. Counting down the time until 8:30pm. When I take med. Having big gaps in memory. Days, weeks, months. D/P. D/R. Disassociated. Anxiety. Panic. Physical Pain. Psychosis I am afraid. OCD. I think I repeat myself often. Intrusive thoughts. I. D.o.n.t know what my next move should be..this is too much..I have not been ok since I don’t know when..maybe truly August..really bad..starting in Jan. Jumped off two SSRI’s..back to back. I hate waking up knowing and feeling that physical pain and movement disorders...caused by a lifetime meds. I can not accept this.

 

 

 

 

 

[BeWell]

Scratch that..took Valium @ 8:30..there has been no relief. That was 2 hours ago.

[BeWell]

@shep @Altostrata..I wish there was something to help me. Increasing Severity if AD withdrawals. A CT or two basically. Years and years of meds. Added a baby dose of Valium awhile back - hospitak reduced it 25%. We increased it 25% out of hospital. The physical pain has been through the roof lately. The worst pain you could possibly imagine. And now..I will never know what is causing what. I could barely walk today - stiffness, pain and jello legs at the same time and dystonia? Although it hurts just as bad to sit or lay. The question is..is this my increasing pain from Nasty AD withdrawal or a reaction from the benzo? My body want more? Or still screaming w/d’s from almost 5 months ago?????!!!!!!! And distraction? That doesn’t work when pain level is so high. It’s like telling a lady having natural child birth to color a pic. What is going on? I need a break!!!!!!!  I screwed up..my dr screwed up. Why did he think a baby dose of Valium would help my severe A/D withdrawals three months out or whatever it was. I will be at 5 months in 10 days. It just keeps getting worse and worse....why can’t anyone help me????? A symptom chart..what is that going to show???? I have been in severe AD w/d’s since December....getting worse each month....Please I need some help!!!

[Altostrata]

On 5/13/2019 at 6:16 PM, BeWell said:

I notice when the Valium wears off..everything increases by 1000. It’s like I come alive in not a good way.

 

How can you tell when the Valium wears off? Does this happen at the same time each day?

 

Did your stiffness increase when you increased Valium?

 

Daily symptom notes are the only way we can tell what the drug may be doing. If you don't want to keep notes to answer questions about your symptom pattern, you don't need to, but without that information, we can't do much.

 

Doctors in general are very poor at addressing adverse effects from drugs, I'm sorry.

[BeWell]

I do not think I can tell if the Valium wears off. Because the post after that said there was no relief.

 

8:30am took 2mg or Valium.

 

11:00am - stayed in bed 12 hours - hundreds of wake ups. No desire to open eyes, be awake or be alive. I have lost all hope. Severe depression and body pain. Currently in front shoulders. Burning hands. Wake with repeating words, phrases in head. Usually dark. Tried to counter w/ light. String SI, thoughts, feelings. Depression and feelings of “nothingness” worsen every minute. Nightmares, vivid dreaming..take anyday over the reality of w/d’s and my non-existent life. Nausea, dry mouth, dry lips. I can feel the Dystonia/TD going crazy in my foot. Spasms. Cramping. Toes moving up and under and all directions. Painful. Woke with mouth doing weird things. Hands still clenching and body twisting and turning all night. Extreme leg pain before bed. Extreme. Leg pain - and severe mental and physical aka all day yesterday. Unable to cry to release pain unless someone is with me. Severe neck and shoulder pain in night or early am. Painful ears. Mouth. Head in night.

 

11:40am trying to sit upright. Upper back and neck extreme pain. Ate some sandwhich - in bed. Helium head. Ears full. Laid back down. Weird electrical currents in left foot.

 

Hurts to walk due to tension in legs? And weakness all together and dystonia? Trying to stay off feet.

 

12:20pm ate some more sandwich -in bed. Freezing. Kid popped by. 

 

12:30pm - excruciating upper back pain.

 

Got extremely drowsy - took 1/2 asleep toxic nap. Extremely intrusive thoughts which creared head to toe burning, Ears and face burning. Extreme heat, flushing, insides hurt. Woke 2:40pm from this.

 

Disconnected, disassociated, d/p, d/r..world is getting darker by the moment. 

 

Isolation growing. There is 0 functioning. There is 0 feeling. Other than pain. I live in my bed suffering. I don’t bathe. Or get dressed. I feel sorry for myself. And hate myself and the drugs. I wish I would have just left them where they were. I got sober 9 years ago for this???? Are you kidding me???? I spent 4.5 years in therapy for this??? And I think about not being here 24/7. 

 

Muscle spasms 24/7/ Rib pain/ body tenderness.

 

I will continue this note a little later.  

 

4:50pm - need to figure out how to get the help I need because this is not working.

 

 

 

 

 

 

 

 

 

 

 

[BeWell]

So this site is for getting off drugs? Or adverse reactions? Or re-instating if it’s not too late. So..that leaves me with 0 help.I have 0 options.

[Songbird]

You always have options.  One of the things that helped me most when I was in the worst state was realising that I wasn't helpless, that I could try things to help myself.  What helped me the most was doing relaxation exercises several times a day.  I've mentioned this a couple of times, but you haven't said whether you've tried them.

[BeWell]

@Songbird Thank you for your response. I am not there.. Feeling very helpless and hopeless. I have TD and the other movement disorder..the name has escaped me. I have not accepted these handicaps. I would have re-instated in a heartbeat if it was just a mental game w/aches and pains. I doubt relieving my anxiety is going to cure my movement disorders. Or the SI. Or the AKA - mental and physical. Or my attitude. What’s the point. And..now stuck on a benzo..I had hope back in Dec..that my body was going to heal..and I basically put a nail in my coffin. And then it all started..and continues to worsen...

[BeWell]

5/15 notes continued - 

 

8:30 pm - took 2mg of Valium.

 

5pm to 11pm - brain fog, some food, tried to read some success stories online. Very negative. Nose itching and face. Right foot throbbing like it’s being crushed to death. And toes moving. Feel hot. Left calf spasms. Tried to stay off legs today to see if that decreased leg pain. Ribs hurt. And hands. I have a lot of outside issues, stressors, losses. I would cry..but, the Valium has numbd me or it was going to be there anyway...from the “feelings of no feelings”..from the drugs..and tapering the wrong way...

 

Thoughts and feelings of SI with me always 24/7. No reason for this. I have two beautiful daughters and a father. And none of that matters in drug withdrawals. What the heck is wrong with me??? I also have a mother in late stage Alzheimer’s and an ill kitty. It’s too much..all of it..no spouse..nothing..I used to have a boyfriend, meetings, work, purpose, drive my car, shopped, cooked, love to sunbathe, read, watch movies, baked, helped others, walked, cleaned, organized...now there is just nothingness..I can’t handle anythng. I live with my father..who is happy and well..and highly functioning..it wasn’t suppose to be this way. I moved in here to help him..and that has not been the case. I feel terrible for about the three people that love me...just watching me decline more and more on a daily basis...

[Songbird]

4 hours ago, BeWell said:

Or the AKA - mental and physical. 

 

Actually the relaxation exercises did relieve my akathisia.

[Altostrata]

My guess is that you have very tight muscles from multiple drug withdrawal. This is causing foot spasms.

 

Acupuncture can help. Some acupuncturists will do home visits.

 

Also suggest that you do what you can to stretch your legs, particularly your calf muscles. The modified downward dog is good for this, you lean on a chair.

 

This is a gentle stretch for your back, too. When you become a little more flexible, you can lean on the chair seat rather than the back.

 

It sounds like you are beating yourself up with self-blame and regret, moving on to extreme thoughts such as suicide. This is helping to keep your nervous system in an uproar. Strongly recommend that you change the channel when you start to do this, think of kittens or puppies, watch animal videos instead.

 

Did you ever discuss reinstating a bit of SSRI, such as Prozac, with your doctor? Why did you switch from Prozac to Zoloft?

 

You will get through this, you will need to be patient and take care of yourself instead of punishing yourself. This is a life skill you will find valuable after recovery.

[BeWell]

@Altostrata The mental hospital CT’d me off my Prozac. And added 25mg of Zoloft and then updosed me to 50mg of Zoloft days later. I was already in W/D’s from TMS and Prozac. But, I didn’t understand it. Because my drops at 4mg of Prozac were minute. I think the TMS exasperated the Prozac w/d’s. The cramping and moving and curling of the toes seems to be TD. What about the cramping of hands? Back, neck? Heart muscles? Shoulders to ears? Always. Physical and mental AKA. I tried to lay with my arms by my side this am. It is impossible. The pain. They are constantly needing to be twisted. If the SSRI’s caused the movement disorders? Wouldn’t that be dangerous to re-instate? I had no choice on the Zoloft thing. I thought if I could get on a therapeutic dose I would be okay. The body pain..burning in feet, muscle tension, weird stances, muscle spasms proved to be too much. And for some reason (w/d brain)..we thought we could beat the w/d’s and things would be  on the upswing after about a month. I stand on my tippy toes sometimes. Extreme tightness and/or jelly legs. Run into things. Drop things. I stand with my legs far apart. I have to always be moving. My hands and arms in bed are constantly needing to be twisted under my head, etc. Extreme Upper Back pain, joints by shoulders. Noticed back in Dec/Jan..have to sit or lay in hands and feet. Almost called 911 this am. Plus my heart area had so much tension in it. Neck pain, etc. Extreme Pain. So..you think this is more muscle tension vs dystonia/TD. Hands are always folding over - burning - painful - and have to clap on to something. My dr. went through his own benzo w/d..but nothing like this. He is clueless. He thinks we could just add another class of drug. Still progressively getting worse. Head to toe muscle spasms. Painful cramping. And AKA - physical and mental. There has got to be something that can help me. Something to try. RLS, pain, moving, cramping toes, hands, arms...last Prozac was Oct or end of Sept. On Zoloft maybe 8 weeks. Did not have movement issues until off. Pain. But, no movement issues.