WiggleIt: Tardive dyskinesia & dystonia from TCAs/nortriptyline/desipramine; rapid taper & benzo trouble, too

[Wildflower0214]

Actually, 3 weeks of a window is pretty significant.

 

I haven't had that much time. I'm 6 months into this and longest I've had is 2.5 days. Before that it was moments, or hours if I was lucky.

 

I'm just trying to encourage you. A 3 week window is a big big deal

[WiggleIt]

REALLY??? Even if it was a window with symptoms? It wasn't a perfect window bc I still had many symptoms, but I referred to it as a window bc I did not have a whole body flop for three weeks, only smaller jerks.

 

Or do windows have to be, like, perfectly clear to be considered windows?

 

I saw tiny, tiny improvements for three weeks. Never perfectly clear, but definite baby steps.

 

It wasn't the type of window where people describe sudden peaks of clarity. I have only had a couple of minutes total of peaks of clarity.

 

But you think my tiny progress still counts as a window?

 

I'm sorry I'm so needy. I feel like everyone here is such a resource, and I'm not a resource for anybody yet, but I do hope to be someday.

[Frustrated]

If you have to be symptom free to count as a window then in the last six months I have had no windows. I am never symptom free. I do have windows hours long when my pain is less or my mental torture is less. Also, my moments of clarity are only about 30 seconds long. It is weird. Like all of a sudden your eyes can see so clearly and your head is unclogged. Would love for that one to last longer.

[Wildflower0214]

REALLY??? Even if it was a window with symptoms? It wasn't a perfect window bc I still had many symptoms, but I referred to it as a window bc I did not have a whole body flop for three weeks, only smaller jerks.

 

Or do windows have to be, like, perfectly clear to be considered windows?

 

I saw tiny, tiny improvements for three weeks. Never perfectly clear, but definite baby steps.

 

It wasn't the type of window where people describe sudden peaks of clarity. I have only had a couple of minutes total of peaks of clarity.

 

But you think my tiny progress still counts as a window?

 

I'm sorry I'm so needy. I feel like everyone here is such a resource, and I'm not a resource for anybody yet, but I do hope to be someday.

No problem. You contribute where and when you can.

 

No, windows can range from improved to totally clear. My windows have never ever been symptom free, just more tolerable. Lol

 

I think you had a BIG window.

[Wildflower0214]

If you have to be symptom free to count as a window then in the last six months I have had no windows. I am never symptom free. I do have windows hours long when my pain is less or my mental torture is less. Also, my moments of clarity are only about 30 seconds long. It is weird. Like all of a sudden your eyes can see so clearly and your head is unclogged. Would love for that one to last longer.

Everytime you post, I just see that cat in your pic. Too funny. Lol makes me giggle.

[LoveandLight]

Totally get the neediness! I think it also part of this..

[Wildflower0214]

Totally get the neediness! I think it also part of this..

Wiggle,

I feel completely needy half the time.

There is a thread over in the benzo section addressing my ativan conundrum. I don't know how anyone put up with me...? lol sad, because the neediness on my part was out of desparation.

 

We are all needy, good thing, not on the same days most of the time!

 

Wiggle, it's ok. It's a scary thing to go through. We all feel vulnerable a lot of the time.

[Frustrated]

JDM I AM GRUMPY CAT! BAHAHAHA!

[Wildflower0214]

JDM I AM GRUMPY CAT! BAHAHAHA!

[WiggleIt]

You are all so lovely and brave. 

[Wildflower0214]

You are all so lovely and brave.

So are you!!

[Cdav]

WiggleIt, I just read your whole thread. Your first post made me cry a lot. I'm in a bad wave today, lots of twitching and depression. I can't even imagine what you're going through must feel like, you must be incredibly brave and strong to endure what you're going through. I really hope you see more windows soon. My windows aren't completely clear either. They're also a period of time where my mood is good and my physical symptoms are not too strong. I've had the complete clarity of mind and emotions too, but they last a few hours. 

 

I get the needy feeling and I get what you mean by having only your parents to take care of you. I do have a bf and he does help me. But there's something about parents' love and caring that cannot be compared to anything else. I also get scared as to what I would do without them. 

 

But, having a 3 week without the worst symptoms showing up, is a good sign. Hang on to that. I know it's hard in the midst of a wave and suffering that does not seem to end. But we need to hang on to every little window we have, even if it's not a complete clear window. 

 

You wrote earlier that you wrote a poem, did you post it somewhere? I would like to read it if you want to share it. 

[WiggleIt]

Cdav, thank you for writing what you did when you said, "But, having a 3 week without the worst symptoms showing up, is a good sign. Hang on to that. I know it's hard in the midst of a wave and suffering that does not seem to end. But we need to hang on to every little window we have, even if it's not a complete clear window."  I really needed to hear that.

 

I would love to share my poem, but I can't.  I plan to submit it for publication to poetry journals—along with other poems about disability and illness—and the publishing places are SO strict that they won't accept a poem if it has been published anywhere else, even a personal blog.  I once put a poem on my private Facebook page and had to take it down because I found out I was breaking the submission rules!!!  It sucks that they are so strict, because I can't even share poems online with my friends   

[WiggleIt]

Cdav, how are you today?

[WiggleIt]

I have forgotten to thank all you dears for responding to my insane battalion of desperate pleas.

 

And thanks, mamma, for letting me know about moving the thread! Sometimes I can't tell where my posts should go. For example, I will think I'm addressing a topic about a symptom, but then the post will end up being way more of an inadvertent status update about me, so it ends up belonging here.

[WiggleIt]

It must be so difficult to moderate this site! Thanks to all the mods for what you do

[WiggleIt]

Apparently, I am suffering some kind of non-epileptic seizures.  Just learned that on another thread.  They are not picked up on EEG, so makes sense why my EEG cam back normal, yet I come close to passing out when I experience certain things.

So, so awesome.  Great.  I HATE WESTERN MEDICINE.  I HATE PHARMACEUTICAL COMPANIES.  WHY ISN'T ANYBODY GOING AFTER THESE ANIMALS???

[WiggleIt]

I might need to back off this site for a few days. Finding out what's wrong with me and how badly I'm doing isn't helping me. It's cool to know people get better and all, but everyone else is slow tapering or managing or isn't having seizures, and I'm tired of knowing what a disaster I am.

 

Maybe I just need to back away for a day or so, pray, and write in my journal at home.

 

It's not fair. I was never an addict, never depressed, and never understood that my freaking GYNECOLOGIST was giving me psych drugs.

 

I'm too scared to RI, getting too far to RI anyway, and it's not like one stupid, useless doctor I called knows frack all about this in the first place.

 

So I'm just going to keep suffering because I don't have any other choice. Checking out of life is not an option for me because I love my family too much and I am scared to die, and because, maybe, somewhere deep down inside I still might love life. So I guess I'll just sit in my dark room and be a babbling, mentally retarded, seizure-having monster.

[Wildflower0214]

If it makes you feel any better, I have some pretty nasty symptoms, and for the first couple months on here, it really bothered me becasue I didn't seem to be doing well at all compared to others, and honestly, I'm still not.

 

I cannot take supplements that could help me, I could only eat like 14 whole food items for about three months. I've now added two more. I just tried mustard the other day, only a tablespoon and it gave me insomnia, awful nerve burning, and crazy anxiety. This is just one example of MANY! I've been to and from the hospital prob 8 times in the last six months. My bladder quit emptying all the way, I have developed painful cystitis, I had problems swallowing and got things caught in my throat. I could go on and on and on. So I know the feeling of feeling like you are worse off, and you may be... But, I've seen some pretty awful cases turn into recovery stories.

 

I'm sorry you are suffering. I told you all of this, so you don't feel as alone.

[Cdav]

WiggleIt, I haven't been doing so well on the past couple of days. Fatigue, deep depression, headaches, constant muscle spasms, etc… 

 

But I know what you're going through is much much harder and unfair since you were given these meds unnecessarily and had never experienced depression before. I'm really very sorry that you are experiencing this. But the fact that you can write poetry about this, is really good. To be ill and still be able to be creative is of great value! I'm a songwriter, and I haven't been able to write, I just can't right now with all the brain fog and headaches. But I'm hoping I will again. 

 

I think it's a good idea that you listen to your body and if you feel you need to limit your internet exposure, it's good. Whatever makes you feel a little bit more at peace. I also get the thoughts of "checking out of life" but I also love my family too much, and now that I've had a few windows I know that life can be great.

 

I also had seizure like movements when I was in acute WD from Pristiq. This was 3 years ago, and happened when I was asleep. I don't know if it's similar to what you experience. But my point is, it will go away. It's been a very very short time since you've been in WD. And what I've learned from all of this is to try to be more patient. It's hard. But we need to practice patience, since our Nervous Systems are recovering, but VERY slowly. Please, hang in there it's worth it. Remember, you started Wd practically in November, it's only been a very short time. 

 

Best wishes and keep writing! I hope I can read it once it's published  

[WiggleIt]

If it makes you feel any better, I have some pretty nasty symptoms, and for the first couple months on here, it really bothered me becasue I didn't seem to be doing well at all compared to others, and honestly, I'm still not.

 

I cannot take supplements that could help me, I could only eat like 14 whole food items for about three months. I've now added two more. I just tried mustard the other day, only a tablespoon and it gave me insomnia, awful nerve burning, and crazy anxiety. This is just one example of MANY! I've been to and from the hospital prob 8 times in the last six months. My bladder quit emptying all the way, I have developed painful cystitis, I had problems swallowing and got things caught in my throat. I could go on and on and on. So I know the feeling of feeling like you are worse off, and you may be... But, I've seen some pretty awful cases turn into recovery stories.

 

I'm sorry you are suffering. I told you all of this, so you don't feel as alone.

JDM, 

 

Your post breaks my heart.  I'm not a "misery loves company" type of person, so I'm not happy that we are in the same boat, but it warms my heart so deeply and I thank you so much that you went out of your way to admit to me all of your symptoms in order for me not to feel so sad or alone.  It must have been very painful for you to admit all of that, and it says so much about your kind heart that you would make yourself so vulnerable just to make a stranger feel better.  Wow.  Truly amazing.

 

I am sorry that you are also not doing well compared to others here, but you are better, right?  Even if it is just a little, that HAS to be a sign of hope.  You said you have been able to add two foods.  That sounds like a big deal to me!  My meals are still coming through a straw 98% of the time.

 

Your bladder troubles especially resonate with me because I was originally put on these meds for bladder troubles!  This might give you some hope: there are bladder troubles that CAN be helped with pelvic floor physical therapy.  I go to pelvic floor physical therapy for my bladder problems and when it started to help my bladder, that is when I realized that the doctors put me on meds for no reason.  I was told by doctors that I had an incurable bladder disease called Interstitial Cystitis, even though there was never any evidence present of the disease inside my bladder.  Turns out what I had was pelvic floor dysfunction, a muscle problem in the bladder and pelvic area, a muscle problem that ONLY needs PT, not meds.

 

You said you have developed chronic cystitis.  Do you have bacteria in your urine, or are you using the word "cystitis" to describe the urinary pain and trouble you are having?  If there is no bacteria in your urine, then it could be that the problem is in your pelvic muscles, especially since the meds we have been on affect muscle control.  After all, the bladder IS a muscle and it is SURROUNDED by pelvic muscles. Soooo… as painful as things are for you now, maybe pelvic floor physical therapy is something that could help manage at least this one symptom.  I'm no doctor, but maybe pelvic physical therapy is something natural you could look into to help you with the bladder troubles.  

 

Every week, I put on sunglasses, put in earplugs, and my parents drive me to my pelvic physical therapist so that I don't keep suffering with bladder pain, pelvic pain, or frequent urination.  It's helping.  Even in withdrawal, it's helping, and I KNOW that withdrawal is messing with my bladder, too, because my bladder was bad before meds, but it was never THIS bad before meds.   

 

I won't lie: pelvic floor physical therapy can be uncomfortable and it can be painful while it is being performed, but I always feel better afterward.  It helps my bladder pain and helps me urinate more easily.  If you decide to look for a pelvic muscle physical therapist, you should find one who will massage your muscles internally, NOT someone who makes you strengthen your pelvic muscles.  For people who have pain and retention, they need their muscles to be relaxed.  For people who leak, they need muscles to be strengthened.  If you have retention and pain, maybe this could help you.  Anyway, it's something to look into and to consider. 

 

JDM, you are an incredibly positive person.  I see your posts to me and to others and you are never short of expressing hope.   

[WiggleIt]

WiggleIt, I haven't been doing so well on the past couple of days. Fatigue, deep depression, headaches, constant muscle spasms, etc… 

 

But I know what you're going through is much much harder and unfair since you were given these meds unnecessarily and had never experienced depression before. I'm really very sorry that you are experiencing this. But the fact that you can write poetry about this, is really good. To be ill and still be able to be creative is of great value! I'm a songwriter, and I haven't been able to write, I just can't right now with all the brain fog and headaches. But I'm hoping I will again. 

 

I think it's a good idea that you listen to your body and if you feel you need to limit your internet exposure, it's good. Whatever makes you feel a little bit more at peace. I also get the thoughts of "checking out of life" but I also love my family too much, and now that I've had a few windows I know that life can be great.

 

I also had seizure like movements when I was in acute WD from Pristiq. This was 3 years ago, and happened when I was asleep. I don't know if it's similar to what you experience. But my point is, it will go away. It's been a very very short time since you've been in WD. And what I've learned from all of this is to try to be more patient. It's hard. But we need to practice patience, since our Nervous Systems are recovering, but VERY slowly. Please, hang in there it's worth it. Remember, you started Wd practically in November, it's only been a very short time. 

 

Best wishes and keep writing! I hope I can read it once it's published

 

Cdav, 

 

I so wish you get better and have a window again soon.  I'm sorry to hear about the fatigue, depression, and muscle spasms.

 

I feel bad about what I said about it "not being fair" that I was going through all this because it might have sounded like I was pooh-poohing the experiences of people who do/did have addiction and/or depression.  I was trying to express my anger about my misdiagnosis, but I was in such a state of fury and sadness that I worded myself thoughtlessly in regards to other people's situations.  Please don't think me cruel!  

 

My poems right now aren't good, but I'm still plugging away at them.  Have you tried writing bad songs, like, on purpose, just to entertain yourself?  I wrote a bad poem on purpose last week because I knew I couldn't write a good one, but I wanted to write so badly that I did it anyway.  Do you think it would lift your spirits at all if you tried to write a bad, silly song on purpose, just to entertain yourself?  I am willing to bet that it just might make you feel better.

 

When I was in grad school, a friend of mine told me about how it took forever for him to get his PhD because he just kept putting off his dissertation.  Putting it off and putting it off.  For years!  One day, he looked in the mirror and he said to himself, "I'm going to do it.  I'm going to write the worst dissertation in the history of dissertations."  So he sat down, totally committed to writing an utter pile of sh** for his paper and he FINISHED IT.  And it was not great, but he passed.  He gave himself permission to do a bad job and managed to jump over the last hurdle standing between him and his PhD.

 

So what if you give yourself permission to create, but remove the pressure of creating well?  It might just open the door you need opened...  

[WiggleIt]

JDM, one more thing to give you hope about your bladder: there is a woman named Alessandra Rain who is the founder of a non-profit organization called Point of Return, and she was on multiple psych drugs for years.  She developed bladder problems in protected, cold-turkey withdrawal and they eventually went away.  Point of Return helps people taper off psych meds using a supplement program, but supplements don't do well for all bodies, so I cannot say whether anybody should use them or not.  

 

I think on another thread here on survivingantidepressants, I saw where someone says the Point of Return supplements are overpriced, but I don't recall if anyone has said anything anywhere on this site about the efficacy or trustworthiness of the Point of Return program.  I ordered their supplements, but did not ever start them because I am scared of everything right now that's not food and water.

 

Anyway, the point is that Alessandra was in protracted withdrawal, but her bladder problems did eventually go away.  Please hold onto that hope.    

[Wildflower0214]

 

 

If it makes you feel any better, I have some pretty nasty symptoms, and for the first couple months on here, it really bothered me becasue I didn't seem to be doing well at all compared to others, and honestly, I'm still not.

 

I cannot take supplements that could help me, I could only eat like 14 whole food items for about three months. I've now added two more. I just tried mustard the other day, only a tablespoon and it gave me insomnia, awful nerve burning, and crazy anxiety. This is just one example of MANY! I've been to and from the hospital prob 8 times in the last six months. My bladder quit emptying all the way, I have developed painful cystitis, I had problems swallowing and got things caught in my throat. I could go on and on and on. So I know the feeling of feeling like you are worse off, and you may be... But, I've seen some pretty awful cases turn into recovery stories.

 

I'm sorry you are suffering. I told you all of this, so you don't feel as alone.

JDM,

 

Your post breaks my heart. I'm not a "misery loves company" type of person, so I'm not happy that we are in the same boat, but it warms my heart so deeply and I thank you so much that you went out of your way to admit to me all of your symptoms in order for me not to feel so sad or alone. It must have been very painful for you to admit all of that, and it says so much about your kind heart that you would make yourself so vulnerable just to make a stranger feel better. Wow. Truly amazing.

 

I am sorry that you are also not doing well compared to others here, but you are better, right? Even if it is just a little, that HAS to be a sign of hope. You said you have been able to add two foods. That sounds like a big deal to me! My meals are still coming through a straw 98% of the time.

 

Your bladder troubles especially resonate with me because I was originally put on these meds for bladder troubles! This might give you some hope: there are bladder troubles that CAN be helped with pelvic floor physical therapy. I go to pelvic floor physical therapy for my bladder problems and when it started to help my bladder, that is when I realized that the doctors put me on meds for no reason. I was told by doctors that I had an incurable bladder disease called Interstitial Cystitis, even though there was never any evidence present of the disease inside my bladder. Turns out what I had was pelvic floor dysfunction, a muscle problem in the bladder and pelvic area, a muscle problem that ONLY needs PT, not meds.

 

You said you have developed chronic cystitis. Do you have bacteria in your urine, or are you using the word "cystitis" to describe the urinary pain and trouble you are having? If there is no bacteria in your urine, then it could be that the problem is in your pelvic muscles, especially since the meds we have been on affect muscle control. After all, the bladder IS a muscle and it is SURROUNDED by pelvic muscles. Soooo… as painful as things are for you now, maybe pelvic floor physical therapy is something that could help manage at least this one symptom. I'm no doctor, but maybe pelvic physical therapy is something natural you could look into to help you with the bladder troubles.

 

Every week, I put on sunglasses, put in earplugs, and my parents drive me to my pelvic physical therapist so that I don't keep suffering with bladder pain, pelvic pain, or frequent urination. It's helping. Even in withdrawal, it's helping, and I KNOW that withdrawal is messing with my bladder, too, because my bladder was bad before meds, but it was never THIS bad before meds.

 

I won't lie: pelvic floor physical therapy can be uncomfortable and it can be painful while it is being performed, but I always feel better afterward. It helps my bladder pain and helps me urinate more easily. If you decide to look for a pelvic muscle physical therapist, you should find one who will massage your muscles internally, NOT someone who makes you strengthen your pelvic muscles. For people who have pain and retention, they need their muscles to be relaxed. For people who leak, they need muscles to be strengthened. If you have retention and pain, maybe this could help you. Anyway, it's something to look into and to consider.

 

JDM, you are an incredibly positive person. I see your posts to me and to others and you are never short of expressing hope.

Hey there.

 

I just read your response on my thread. Thank you very much for the compliments that you have given me. They have really encouraged my heart. I try to help others, I hate to see them in pain. Your story has made me so sad. But, I am so very happy your parents are supoortive of you. Thank you for your compassion about my family life. It has been very difficult, and something I will have to work out when I get well enough. But, I'm grateful they love me and are trying to help.

 

I have what I believe to be IC, which started when I was on Lexepro. I thought it was an infection. A few months ago, it was like my bladder wouldn't empty all the way, like The muscle that was supposed to do it, just would not work. It was very frightening. I do not have an infection, but do have blood in my urine (not visible), it shows up in the test.

 

It comes and goes in intensity. I'm sorry you have had to deal with this also. I have heard about PT for this, and I was thinking of looking into it of this persists. Since mine started as a side effect from a drug, and now has been exaggerated by WD, I will probably wait it out to see if it resolves itself. But, when I went to the urologist about it a couple months ago, they were very quick to push drugs and I thought, ummmmm NO!!!!!

 

I hope your not wiggling too much. :(I think it is endearing you call it Big Wiggle. It makes me smile. Not your experience, of course, but your choice of label.

 

Just hold on, you'll come through this. Just hold on.

[Wildflower0214]

JDM, one more thing to give you hope about your bladder: there is a woman named Alessandra Rain who is the founder of a non-profit organization called Point of Return, and she was on multiple psych drugs for years. She developed bladder problems in protected, cold-turkey withdrawal and they eventually went away. Point of Return helps people taper off psych meds using a supplement program, but supplements don't do well for all bodies, so I cannot say whether anybody should use them or not.

 

I think on another thread here on survivingantidepressants, I saw where someone says the Point of Return supplements are overpriced, but I don't recall if anyone has said anything anywhere on this site about the efficacy or trustworthiness of the Point of Return program. I ordered their supplements, but did not ever start them because I am scared of everything right now that's not food and water.

 

Anyway, the point is that Alessandra was in protracted withdrawal, but her bladder problems did eventually go away. Please hold onto that hope.

 

I will hold on to hope, it's all I have. And, I am like you, staying away from anything that isn't food and water! Supplements scare the poo out of me. I had a couple of run-ins with them in early WD, not good... Wow. Not good at all, very very scary. Lol

 

Thx for the hope Wiggle...

[WiggleIt]

I didn't know it was possible to hate myself this much, or the people around me.

 

Myoclonic jerks all the time, accompanied by sudden facial scrunch, facial tic, TD, whatever ya wanna call.

 

So tired of trying to exude all this fake hope. Movement disorder success stories are just urban legends. Everyone knows a guy who knows a guy.

 

Maybe if my cognition comes back, I won't care if I can't walk or control my arms. If I could think, talk, and write good poetry again, think abstractly and analytically... then maybe I could learn to live with physical handicap.

 

I am so lonely. I hate myself. I'm a monster. I'm a babbling, jerking monster. Even my parents can't stand me anymore.

[WiggleIt]

I never had thoughts like this before meds. Is this how torturous it is to suffer depression? I am so sorry for all who do. I had no idea about the anguish and twisted thinking. How brave all those are who have battled depression their whole lives.

 

I hope God will see fit to heal me while I am still on this earth to enjoy it.

 

Something is wrong in my head. I've lost the ability to be invested in my meditation anymore and have not done it in weeks. My despair is worse. Which cane first? The despair or the lack of meditation?

 

Dear God, please don't abandon this lowly sinner clinging to your feet.

[WiggleIt]

I'm so ashamed of my behavior, thoughts, and things I say to those around me.

[Wildflower0214]

I'm so ashamed of my behavior, thoughts, and things I say to those around me.

So am I sweetheart. So am I. I'm so sorry for you. Just keep talking, and keep writing, and keep doing whatever gets you through. Just keep breathing. One step at a time, one moment at a time, just keep on, hanging on.

[Cdav]

WiggleIt, 

 

I'm sorry you're experiencing those thoughts and feelings and the lack of clear cognition. I can relate to all of that. And I'm in a dark place right now where recovery seems impossible and completely unattainable for me. But I try to remember the times I feel a little bit better and my whole perspective changes, and I do believe I will recover. Try to give it more time. 

 

Thank you for the advice about writing. It's great that you're writing. For the last couple of days, I've been too low to even sit by my piano or focus on anything. I struggle while writing this as well. I think it's the cold and rainy weather, I' not used to it. But I hope I do get a little mini window and I'll try what you suggested, just writing  whatever comes out without judging it, without comparing it to songs I've written when all my senses and my heart were fine. Maybe I'll try to write about what I'm going through right now, even if I can't choose the best words to create. But, yes, what we need now is no pressure, no stress, no self-judgement. 

 

Don't be ashamed of your behavior, it's normal in your situation or our situation. I also feel like my parents sometimes can't stand me. Just yesterday my mom, who is always by my side had enough of my screaming and crying and said she would come back later when I "calmed down". So did my boyfriend last night, he went to his home and said I should better just "sleep it off". I know this is not the person I really am, this rage and depression take over me, and I feel strange to myself. I had never been like this pre-meds, even if I did suffer from depression, but never this. However today, my parents were with me again, taking care of me. I'm sure your parents will be there for you. It doesn't matter if you become a "monster", they love you, of course they're worried and take it personally or just don't know what to do exactly. But you'll be back to being your old self even if it is during windows, and you'll remember that you're a great person. Don't forget it, beneath all this movement disorder symptoms, you're still you. 

[Cdav]

I wanted to add, have you tried a high dose of Vitamin E? It's supposed to help TD. I think I had mentioned this before on another thread. My mom is on Antipsychotics and suffers from TD because of this. Her doctor recommended to take Vit E, when she takes it for some time, the lip smacking seems to subside. Maybe you could give it a try if you feel like it and if you can tolerate it. Supposedly it has to be a high dose, 2000 UI, so that would mean several capsules, depending… 

[WiggleIt]

Wow, I wish I could delete those threads.  Something bad was happening to my thinking for many, many hours, since last night.

 

Cdav, you are right: my mom and dad were right by side again today, and forgave me for all the verbal venom I spewed at them.  I just… can't believe everything I have thought and felt in the last 24 hours.  I am soooo scared of supplements right now, but I will give a try to eating more foods that naturally contain vitamin E.  I'm so sorry that you and your mom both deal with medication troubles.  It's so unfair.

 

JDM, I have managed to cling on today somehow.  I don't know how, but my thinking has changed.  I don't know if it is anything I did, or if it just happened, but I am grateful nonetheless.

 

Since I am unable to do any house chores at all and all of my clothes have been stacking up in piles in my room, my mom is washing and cleaning them all and putting them away for me.  She has been working on this while my dad took me to church to ask the priest to give me a blessing for healing.  While we were at church, a kind elderly lady who was there with her granddaughter saw me walk by, limping and wiggling with one hand on my cane and the other hand on my dad's arm, and she reached out and touched my arm and whispered, "God bless you."  It was so lovely and gentle and kind.  My dad lit a candle for me and I knelt in front of the baby Jesus and tried to form a coherent thought to pray.  I can't remember if I did or not, or what I ended up asking for, but I hope God knows my thoughts and heart.

[Wildflower0214]

God does know your thoughts and your heart. He is with you, I know you can't feel it. He is there. He never leaves you. He is always always with you. (hug) xo

 

Prayers for peace and healing.

[WiggleIt]

I did EVERYTHING wrong by accident and I feel like I will never get better.

 

All the success stories involve slow tapers, and circumstance and fear simply did not allow me that chance. I can't find any success stories with anywhere near my situation. I know I'm not supposed to look for something identical, but I can't even find something remotely similar.

[WiggleIt]

Today has not sucked.  I remembered a funny anecdote from junior high when I stood up to a kid who bullied me, plus I practiced putting on mascara and didn't poke my eye out, despite my troubles with fine motor control on my right hand!

[luv2knit]

WI, have only been following bits and pieces of your thread, but wanted to stop by and lend my support. It doesn't matter whether you were able to form a coherent thought to pray. God knows the need, and he knows your heart. Try to hang in there and believe He will see you through. I saw where you had a three week window. That is wonderful--and no, my windows are not clear either. I have managed to have a couple of partial days that are relatively clear, and I am grateful for them. The partial windows are still improvement, and they are all I had until very recently. I've also had some pretty bad waves, but I believe I've read there is healing going on even during the waves...? Praying for you, WI. Hang in there!