WinningThrough: Does it get better?

[WinningThrough]

Thanks for your kind words, Joanna. :-)

 

Yes, the lady on the akathisia blog had it for about six months straight, and then some recovery after that.

 

I feel kind of bad about what I just wrote on my thread. I was writing how I was feeling without really thinking. Reading it now, it looks as if I'm having a go at people who have said I'm about the worst they had found and I didn't mean it to come across like that. I'm worried they could read it and be upset. It's just that deep down, I know I'm really very sick indeed and I am very frightened about the severity of it. So people have only said what I already know. They've just stated whats already in my head, and it's made me highly aware of my situation. People have come to me because they are scared and relieved to find someone else like them. They would never have meant to scare me, I know this. They were just reaching out to someone else who was in a similar situation and they were looking for hope. I'm not sure how helpful I am, being as sick as I am! I wish I could turn a corner for others as well as for myself!

 

I'm sure there are many like me (although I hope not for their sake) who either don't post on forums or don't realise it's the drugs making them sick.

[LoveandLight]

You have been a great support to me. Thank you x

[WinningThrough]

And you have to me too :-) x

[Wildflower0214]

Thanks for your kind words, Joanna. :-)

 

Yes, the lady on the akathisia blog had it for about six months straight, and then some recovery after that.

 

I feel kind of bad about what I just wrote on my thread. I was writing how I was feeling without really thinking. Reading it now, it looks as if I'm having a go at people who have said I'm about the worst they had found and I didn't mean it to come across like that. I'm worried they could read it and be upset. It's just that deep down, I know I'm really very sick indeed and I am very frightened about the severity of it. So people have only said what I already know. They've just stated whats already in my head, and it's made me highly aware of my situation. People have come to me because they are scared and relieved to find someone else like them. They would never have meant to scare me, I know this. They were just reaching out to someone else who was in a similar situation and they were looking for hope. I'm not sure how helpful I am, being as sick as I am! I wish I could turn a corner for others as well as for myself!

 

I'm sure there are many like me (although I hope not for their sake) who either don't post on forums or don't realise it's the drugs making them sick.

Hi there,

I just wanted you to know, you are not the worst I've ever heard of. But, you and I do share many similarities. My drug history is different from yours, but I have had askasthia to some which has caused several nights of complete insomnia. I feel your pain. I am five months away from AD WD, I got stuck on a small dose if Ativan, because I was tapering when the disaster happened. Also, like you, my story was going on much before the AD WD, I was destabilized in Feb of this year. I know I'm only 5 months into this, but it would be easier to take if it were only truly 5 months, not 10, and honestly, even longer than that drug was giving me nasty effects.

 

Just wanted to say hi.

I'm sorry you are suffering. I don't really know what to say. But I'm sorry for you. I wish they could have a place for people like us, and we could all just live together in the same place until we got better. Being around healthy people right now is painful. I'm not sure if you ever feel that way.

[WinningThrough]

Thank you JDM :-)

 

Wow, I'm really sorry to hear you are suffering like this, I really am.

 

You sound similar to me..I am also 5 months off, but have had 8 months of acute withdrawal and now almost 15 months of non stop akathisia. Fun, fun, fun!

 

I know what you mean when you say you wish it had only been 5 months! I do too. I wish it had just been 5 months and I hadn't had it all before then.

 

I've thought so many times that I wish there was a place where we could all be to get though this. I wish there was a place where the people who worked there recognised and understood what we were going through. Nothing would be expected of us while we recovered. We would have people looking after us and encouraging us every day. We would be given healthy food. The place would be clean and tidy and we wouldn't have to do any of that stuff. We would have people saying positive affirmations and assuring us that we would heal. The place would be peaceful, light, clean and nothing like a psych hospital. We would be treated with respect and consideration and recognised for the heroes that we are. We wouldn't be expected to do things that we couldn't manage. We wouldn't be force fed drugs. Then when we recovered, we would be heavily compensated for all our losses and apologised to. Our plight would be on the news and then people would believe us and sympathise with us. Doesn't sound like too much to ask, eh???!!! Lol. We should be so lucky.

 

Being around 'normal' people is so hard. If a friend ever comes over, I have to clean and tidy the house and it destroys me. Then I have to bath and dress and make myself look presentable. This also kills me. Then I try to talk about normal stuff and the friend thinks I'm recovered when I'm not. I think about all the things I would have talked to them about if I felt normal and the way I would have responded. I hear about all the things they've been doing and remember when I used to do them too. If I go out of the house, I feel like half of my brain is missing. I'm living without a soul. I think so many of us feel like this.

 

Thank you for your kind words. I wish you didn't have to go through this.

[Wildflower0214]

Thank you JDM :-)

 

Wow, I'm really sorry to hear you are suffering like this, I really am.

 

You sound similar to me..I am also 5 months off, but have had 8 months of acute withdrawal and now almost 15 months of non stop akathisia. Fun, fun, fun!

 

I know what you mean when you say you wish it had only been 5 months! I do too. I wish it had just been 5 months and I hadn't had it all before then.

 

I've thought so many times that I wish there was a place where we could all be to get though this. I wish there was a place where the people who worked there recognised and understood what we were going through. Nothing would be expected of us while we recovered. We would have people looking after us and encouraging us every day. We would be given healthy food. The place would be clean and tidy and we wouldn't have to do any of that stuff. We would have people saying positive affirmations and assuring us that we would heal. The place would be peaceful, light, clean and nothing like a psych hospital. We would be treated with respect and consideration and recognised for the heroes that we are. We wouldn't be expected to do things that we couldn't manage. We wouldn't be force fed drugs. Then when we recovered, we would be heavily compensated for all our losses and apologised to. Our plight would be on the news and then people would believe us and sympathise with us. Doesn't sound like too much to ask, eh???!!! Lol. We should be so lucky.

 

Being around 'normal' people is so hard. If a friend ever comes over, I have to clean and tidy the house and it destroys me. Then I have to bath and dress and make myself look presentable. This also kills me. Then I try to talk about normal stuff and the friend thinks I'm recovered when I'm not. I think about all the things I would have talked to them about if I felt normal and the way I would have responded. I hear about all the things they've been doing and remember when I used to do them too. If I go out of the house, I feel like half of my brain is missing. I'm living without a soul. I think so many of us feel like this.

 

Thank you for your kind words. I wish you didn't have to go through this.

Me too. I actually had a decent nights sleep night before last, but discovered I had a cavity, from the months of being too anxious and depressed to even brush my teeth. So I had to get it filled and they had to numb me. And I spent all night rolling around and tossing in bed. I think I got 1 hour maybe.

 

So, who knows how long it will take this to clear up. I like your description of the place we could all be together. I want to go now.

 

How is your sleep? How many hours do you get?

[WinningThrough]

Gosh, I don't clean my teeth a lot either! I only do them at night now. My gums bleed like crazy so I need to look after them better because getting to the dentist and sitting still in the dentists chair would be a nightmare. I'm sorry about your tooth. :-(

 

I feel really bad saying this but I do actually sleep. I feel really guilty about that because you don't sleep, nor do so many others. I've sort of taught myself to do it, somehow. I know that sounds weird. I wake a few times in the night and it takes me a while to get back to sleep. I quite often wake at 4 or 5 and stay awake for a couple of hours. Then sleep some more. The last couple of weeks or so, I've been going back to sleep after my boyfriend leaves, about 8.15, and sleeping until 10.15. I don't know how long that will last.

[Wildflower0214]

Well, you are fortunate indeed. I've had nights of complete insomnia. It is very very difficult to be up in the middle of the night like that alone.

 

The thing is, my nerves sometimes are so sensitive that when my body begins to settle, and an arm hair brushes my sheet, it jolts me awake. And my body feels floaty, like its never heavy enough to go to sleep. It was getting better, but the trip to the dentist set me back.

 

I can sit still if my mind is occupied. Maybe that's not even akathasia. I don't know what it is, restlessness, but it is not fun. I get crawly sensations on my skin, and it burns on my thights and back of my arms.

 

I pray for God to settle my body, and I know He has helped me. I wish He would take this burden.

 

But, ya, our time spent in this state is very similar, I couldn't believe it.

 

 

I thought I could never sit at the dentist, but I had no choice. I had to. You could to if you had to. But, brush your teeth. so you don't have to go. Lol I was completely out of it when I didn't, I went for days, it was awful.

 

Be grateful you sleep, I'm telling you, if I could count on it, I would go outside and kiss the pavement. I'm glad u get that relief at least.

 

I haven't gone back to the beginning of your thread, but didn't you feel relatively good about two months ago...? I think it was you I was reading....I remember the propanol rash.

[WinningThrough]

I am lucky to sleep. I know this. I'm sorry. I wish you could sleep. I couldn't on citalopram. I slept 2 hours a night. I feel for you, I really do. I don't really know how I sleep. I fall asleep jiggling my legs around sometimes. I think it's the relief that it's night time so nothing's expected of me. I also think the eruptive crying spells make me sleep. I had a major crying fit last night then fell asleep.

 

Yes, I did feel a little better at one stage. When we feel this bad we forget times that were a little more bearable. I felt far from ok and it was far from acceptable but it was better than now. I think I had a better few days at the end of august and then at the end of September. In October the proverbial hit the fan. I guess Ive had sort of kind of windows. I had a slightly better day a couple of weeks ago where I went food shopping.

 

You're right, I could go to the dentist if I had to. I used to have to go to see the psychiatric team and somehow did it so I could go to the dentist. I had better clean my teeth more often!

 

We have to remind ourselves that major healing is happening and we will emerge in a window. I'm rooting for you.

[Wildflower0214]

Thank you.

 

I hope u are well.

[WinningThrough]

Er, I'd like to answer that with yes I am well, but ... I'm not.

 

No change to report.

[Wildflower0214]

My sensations, burning crawly on my legs and arms suck. I've had two nights out of three with no sleep. Slept last night for 8 hours. Now, today, nothing. It has to be the dentist. Who knows how long this will go on. No telling.

[Wildflower0214]

Er, I'd like to answer that with yes I am well, but ... I'm not.

 

No change to report.

I'm sorry! I'm sorry for us all. but, u are sleeping! So that's good!

[WinningThrough]

Yes, thank goodness I am sleeping. Because this is what I deal with every day: (triggering, so please look away now if it's too much!)

 

These are the symptoms I got from my reaction to citalopram. I have them from the moment I wake in the morning until the moment I go to sleep at night with no breaks:

 

Unbearable relentless depression, severe suicidal ideation, feeling like I want to scream all day every day, feelings of horrific doom and darkness, absolute terror for no reason whatsoever, feeling like I'm carrying hell inside my body, nightmarish stomach churning feelings when I look at things that are meant to be nice, inability to sit or lie still - constantly have to move my legs and toes and shake my hands, inability to sit or lie comfortably EVER - standing and walking are horrible, horrendous body terror and adrenaline rushes, internal shaking, internal rigidity in my legs, feeling drugged, horrific inner agitation every single time I wake up, loss of all good emotions, no connection to people, inability to feel love, no connection to memories, complete loss of creativity (I was highly creative), memory problems, cognitive impairment, loss of EVERYTHING that made me me, inability to function - simple tasks like walking across the room are terrifying, disabled, racing thoughts, finding every single minute of every day utter torture, feeling like I will never heal

 

Oh the joys of akathisia!

 

These are the my withdrawal symptoms. Some of these wax and wane at different times, unlike the akathisia:

 

major chemical crying spells sometimes lasting all day, brain zaps (these were initially every few seconds but are now improving), dizziness, flushes and all over sweats with major agitation, extreme thirst, twitches, tight chest, severe pressure behind my eye and in my nose (this is improving a lot), severe headaches (improving), feelings of my brain shaking in my skull, feeling like my head is about to explode, blurred vision, problems focusing my eyes, problems moving my eyes, eye muscle problems, almost psychedelic vision at times - everything is overbright, hair loss, red, peeling skin on my face, ears, eyelids and legs, itchy skin, disgusting taste in my mouth, gland pains

 

Given all the above, I think I deserve some sleep! It's all I have.

[Wildflower0214]

Yes. U do. If I listed all my symptoms I would probably begin to cry. How long have your been going on again? Has it been that bad the whole time?

[WinningThrough]

The top list has been going on for 14.5 months. I was on drugs a lot of that time though. Had I stopped the citalopram last year and not gone on anything after that, today I could be telling a different story.

 

Before I went Into withdrawal, I used to force myself to get dressed and get out of the house. I took all the feelings with me but I still did it. Many times I couldn't, though. Lorazepam (ativan) helped me massively so on the days I took it and it worked, it was amazing! I felt great! I think some of its effect carried on until the next day so I could cope a little better. But it turned on me so quickly and now I can't take it. So in those 14.5 months I had a few good days when I took lorazepam. I had a few days here and there in the last few months where I've been more functional. Semi windows, I guess. At one stage I thought I might be getting a bit better. Lorazepam was my lifeline. I knew that I could take it sometimes for relief and that kept me going. Now I don't have that.

 

The withdrawal symptoms have been going on since early march..about 9 months. I started to get some symptoms in January/February but withdrawal hit fully when I stopped the zoloft. It was pretty much instant.

 

I've only been drug free for 5 months. Not long. It's bad but it's kind of expected at this stage. Others with severe akathisia, with the same symptoms as me, got better. There is hope. It's just making it through in the best way possible until things change. No doubt it will be a wavy ocean. But there will be life when the boat trip ends. Sometimes storms will hit and create huge waves. Sometimes there will be calm in the storm. As the boat gets closer to shore, the waves will get less bumpy. The ocean will be quieter. Then one day, I will step off the boat. We will all step off the boat. We may feel a little battered, a little disorientated, but we will be on safe land. We will be there and life will start.

[Skylarblue75]

Hi WT, stopped by to see how you are.

Hugs

[WinningThrough]

No change I'm afraid SB. Hugs

[WinningThrough]

Well, with all the talk about sleep, last night I didn't get any sleep. Zero. Absolutely none. Great.

[Wildflower0214]

Well, with all the talk about sleep, last night I didn't get any sleep. Zero. Absolutely none. Great.

 

I'm sorry,

Sorry if the talk introduced the idea.

That's what is difficult about WD and forums.

We need information, because there is so little advice from doctors, but too much information, especially negative makes it worse.

 

It's like when I was healthy, I could just dismiss things, but now it's like they get stuck in my nervous system or something, it's like dropping water on a dry sponge... It just expands. And for whatever reason it only does it with scary things. I'm sure that's part of WD.

 

Anyways, I wish there were someone each of us had that knew all of the possibilities in WD, that we could go to when we are scared, and they could say "yes, that's part of it, it's ok, it's normal", instead we have to sift through things on the Internet and we end up exposed to every possible negative symptom, story, scenario etc.

 

I know that this forum has assured me I wasn't losing my mind, and the support has been priceless, but I've also had situations introduced to worry about that I wish I had remained ignorant of, because in WD, at least for me it's hard to just dismiss and not worry about the possibility of the next shoe dropping. You see it dropping on other people, or just one person with a difficult situation, and think "I wonder when my shoe will drop?". At least I do this.

 

Anyways, I'm sorry if the discussion of my situation negatively impacted yours. I hope you rest. I'm sure you will.

[WinningThrough]

Er, sorry JDM. My message about sleep was a bit grumpy. Sorry. I was feeling bad that I could sleep when others couldn't!

 

I hope you got some sleep last night.

 

Yes WD forums are brilliant because we find out what's happening to us but as you say, scary too! We can feed our anxiety.

 

Sorry again.

[Wildflower0214]

Er, sorry JDM. My message about sleep was a bit grumpy. Sorry. I was feeling bad that I could sleep when others couldn't!

 

I hope you got some sleep last night.

 

Yes WD forums are brilliant because we find out what's happening to us but as you say, scary too! We can feed our anxiety.

 

Sorry again.

No problem. I don't think you were grumpy.

 

Hope u sleep tonight.

[Wildflower0214]

Did u sleep? I'm hoping so!

Sorry u had to deal with that it stinks.

[WinningThrough]

I did, thank you. I hope you managed to get some sleep.

[WinningThrough]

Positive update alert ...

 

The last few days I've been a bit better and today has been one of my best, if not the best I've felt.

 

A couple of things I've done which may or may not have brought about this change ...

 

1. On Wednesday I started using a hormone cream. It's a bio identical one with 20 parts progesterone to 1 part oestrogen. Whether or not I should be messing around with hormone cream, I don't know, but I'm in menopause and felt my body needed some help.

2. On Friday morning I had a reiki treatment.

 

Because I knew I was having a reiki treatment on Friday, Thursday night I forced myself to do the housework and tidy up, sweating and shaking my way through it. I also washed my hair. I was pleased to have achieved those things.

 

During the reiki, I was able to lie on the couch. I could really feel the energy. I could feel it doing something. Afterwards, I actually stretched. I can never do that normally. The only other time I've been able to stretch was the last time I had a reiki treatment.

 

Later that afternoon, I walked into town and picked up a couple of things from the shops.

 

Saturday, my boyfriend took me to a large shopping centre and we walked round for hours. Quite a good thing to do when you have akathisia. We even ate in a steak restaurant. It was quite dark in there so I could hide! None of this was easy but I coped and it helped a little.

 

Yesterday, we went out to a local shopping centre for a while.

 

Today, I woke straight up into crying and thought "uh oh, I've crashed again!" I was going to stay in bed and give into it all but then I thought, no, I'm not having this. I'd been able to get through having a bath the last few days so I made myself have a bath and dress. I called a friend and she invited me over for lunch. I was scared stiff but said yes. I'm so glad I went. We had a lovely lunch and I was able to talk about normal things some of the time. After that I went into a local town and actually got my hair cut. It's gone from long to a short bob. I'm not sure my boyfriend's too keen! But I figured if it was quite shortish, it would have a lot of leeway to grow so if I couldn't handle having it cut for a while, it wouldn't get too overlong. I managed to keep quite still at the hairdressers and didn't even feel the need to move around much. I didn't feel adrenaline rushing around.

 

I'm so glad I pushed myself today. It paid off.

 

I've just remembered another new thing I've done..I've been drinking chamomile tea recently. That may be helping..it's hard to say.

[Muddles]

Yay!! Go Winning! Xx

[WinningThrough]

Thanks lovely Muddles! X

[LoveandLight]

[mammaP]

Dead chuffed for you Winning, thank you for sharing your experience with us, you made me smile tonight

[chicken]

Winning,

I am happy for you. I've tried chamomile tea, it is very calming.

[WinningThrough]

Thanks Joanna, Mamma and Chicken x

[WinningThrough]

My post today isn't about me. It's more of an observation.

 

I've been here since about march, I think, and in that time, I've seen people improving over time. I've followed threads and can see people gradually getting better. They still have waves but there is improvement. This is so great to see. I'm so glad for them and it shows that people do recover from this. People do get better.

[Wildflower0214]

I'm glad you have gotten a break. That is very very good. I have actually heard that progesterone is supposed to help with the akathisia. I am too sensitive, but should have mentioned it to you!

 

And the pattern is there, people do seem to improve, even with lingering issues, better than they were.

[Petunia]

Its great to read about how you are doing better WT, I'm so happy for you.  I used to have reiki treatments and always found them to be a positive experience.

[simon]

Yes its great to hear success stories and its true there are some amidst all the pain.

Glad to hear you battled through in spite of your symptoms. It must be very rewarding for you.

Simon

[WinningThrough]

Thanks JDM, Petu and Simon. Well, after my 'window' (which wasn't really a proper window, it was just better somehow ... definitely better), I crashed again. I guess that was only to be expected. 2 steps forward, 5 back, etc etc. I started to crash last Monday night.

 

Looking back, I had a bunch of better days at the end of august, a run of better days at the end of September and a run of better days earlier this month. I guess these are my 'windows'. A real window would be lovely. Maybe one day ...

 

Maybe one day I will get long windows with a run of wave days.