WinningThrough: Does it get better?

[mattinsmom]

I'm sorry.

 

I haven't pulled any of my records because I am pretty sure they would say things similar to yours. I wish I had some nugget of advice for you. I follow the mommaP method of only saying what needs to be said and keeping the rest for safer places (ie here).

[WinningThrough]

Wow! Today went better than I could have ever imagined. I saw the new psychiatrist and he was very nice. He believed me!!!! He said he was very sorry for all I'd been through and it sounded like I'd had a terrible time. He thought it was best to leave things as they are and agreed that more medication was not the answer. He said the only thing he would have suggested was benzos but given the fact that ativan was no longer working and he suspected I'd been getting mini withdrawals from it, he didn't think it a good idea.

 

It looks like I could be getting discharged from the crisis team in three months too which really takes the pressure off me. Now I feel I have 'permission' to heal in my own way. I hope all this goes in my notes.

 

MammaP and Mattinsmom, thank you for your messages.

[WinningThrough]

I keep thinking there is something I have to 'do' to get myself well. That I'm somehow causing all of this. I wish that was the case and I could get myself out of it. I can't seem to do positive things to help. I was wanting to meditate and all sorts but it's so hard to do. I find myself on the forums all day when I should be reading books about healing. I should be saying affirmations. My mindset is endlessly negative now. Ruminating all the time. How do I stop myself doing this? I've read just about every article about akathisia and I know doing this won't help me. How do I stop doing it? How do I get into a place where I can believe with conviction that the akathisia will go away. Withdrawal symptoms are dreadful but this akathisia, after 10 months straight is impossible to function through. I know people do heal from it. It always seems to take so long, though.

 

It's a catch 22. If I didn't have the akathisia, I could probably do the things necessary to help with the withdrawal symptoms. If I could just lie still and be able to meditate properly, it would help. If I could sit still to watch a movie properly, that would help. This is the most bizarre condition I've ever come across. Endlessly needing to move to escape tortuous feelings inside. At least I've found a psychiatrist who recognises it.

 

I know I'm not the only one, others have this too and there are no answers. I know there are so many of us desperate to be who we were and frustrated that we can't flick a switch and return to normal.

 

I wish all this was high anxiety and not med induced and I could somehow push myself through and out of it. Lying in bed all day too terrified to get out is ridiculous. I do have anxiety too because I can feel my chest tightening. It's hard not to have anxiety when you have akathisia.

 

I'm in a big wave but even in windows, I still have constant akathisia. I think we all have that one intolerable symptom.

[chicken]

Hi Winning,

I haven't posted in a while because my situation has become worse and I'm on higher doses of benzos to control my debilitating anxiety. As I've said before I've had debiliating as in "I cannot do anything" anxiety even before taking a drug. I may update my thread when I feel necessary.

 

I can relate to you wanting to read everything. When you have anxiety it forms some sort of OCD to read about it. I do it to. I've spend all day reading about these things.

 

Last night I came across a new article July 21, 2014 just posted by Dr. Shipko that I found encouraging about akathesia.

 

http://www.madinamerica.com/2014/07/shooting-odds-revisited/

 

I've read that Dr. Shipko has been considered to some as doom and gloom, but this article raised my hopes for those with akathesia.

 

Read it and see what you think?

[WinningThrough]

Hi chicken. Thanks for your post. I'm sorry you are struggling so much. Are the higher benzo doses helping?

 

I read that article. It scared me that he used the word "sometimes" and a few other things in there freaked me out too. Time for me to stop reading that stuff and concentrate on success stories. I've given that advice out and I need to follow it myself.

 

I wish I could go on a benzo to knock out the akathsia. Ativan worked brilliantly for me until it no longer did. It stopped working when I was in withdrawal. What I should have done (hindsight is a wonderful thing) was to stay on the zoloft and go on a regular dose of ativan so the two could work together, which it think may be why it worked so well before. I could then have titrated very slowly off both to minimise withdrawal. I tried taking one recently and it compounded all my problems.

 

Rhi was right. I should have picked a dose and stuck with it. Instead I rushed off zoloft as I wanted to get rid of the akathisia. Now I have akathisia AND withdrawal. More fool me.

[chicken]

I'm sorry the article didn't help. I believe he was referring to tardive akathesia though. Since yours was not tardive it looks more promising that it could go away.

 

The higher benzo has helped me a lot but I still have some anxiety. It is knowing that I may not get off the Remeron that keeps my anxiety going.The doc said that he would do whatever I wanted to get off. He said would even put me in the hospital and change the AD. I was looking for one that may be easier to get off of. I told him I would not ever try an SSRI again. Maybe an old trycyclic is easier to get off of.

 

Anyway you are still in my prayers.

[WinningThrough]

Don't worry chicken. Thank u for thinking of me.

 

You're right, mine is not tardive. It started really soon after going on the drugs.

 

I know someone, who isn't on the forums, who got tardive akathisia after a while off her drugs. She was ok on her drugs and not too bad when she came off then got hit later. She tried reinstating which made things worse. She came off the reinstatement. She is now doing a lot better!

 

I have read of lots of people who had it unrelenting like me but it went away.

 

I'm glad you're feeling a lot better. Sounds like getting off the remeron before the benzo is a good idea. I'm glad the benzo helps the anxiety.

[mattinsmom]

If you take eye liner and write on your bathroom mirror, whatever you've written is what you will see 1st thing in the morning, throughout the day, and at bedtime. I put mine off to a side or in a corner. I know it is there so I automatically look, otherwise, its unobtrusive. It rubs off with windex when the time comes to change it.  

[WinningThrough]

If you take eye liner and write on your bathroom mirror, whatever you've written is what you will see 1st thing in the morning, throughout the day, and at bedtime. I put mine off to a side or in a corner. I know it is there so I automatically look, otherwise, its unobtrusive. It rubs off with windex when the time comes to change it.

 

That's a great idea, mattinsmom, thank you!

 

After my negativity, I got dressed and made myself go for a walk then drove to the duck pond. It did help.

[mattinsmom]

Yay for ducks!

[WinningThrough]

I've been putting off posting for fear of upsetting people and because I know no one can do anything to make this go away. I know we are all suffering and I am not unique. I just feel the need to write today.

 

It's almost a year since I took the antibiotics that kicked all this off. I know I can't go back. I just wish I could go back to the day I went to the doctor, knowing then what I know now. I know we all feel this way. I was in agonising pain from interstitial cystitis and vulvodynia. The doctor gave me some antibiotics to try to see if they would help and the rest is history. The pain has gone now but that's immaterial. I would gladly live with that immense physical pain for the rest of my life rather than this. I could live then and function through the pain. I could be happy, I could feel. I had times when I wasn't in pain.

 

The reaction to the antibiotics must have been akathisia. I wish I had known the term then because I could have looked it up and not taken any psychiatric drugs. I know we all feel like that. About an hour or two after taking the antibiotics, suddenly, out of nowhere, I felt this immense NEED to die. I suddenly couldn't bear to be alive. I started pacing the house. It was terrible. I developed the most severe nausea I had ever had in my life and was retching. I was pacing, pacing, pacing. I couldn't sleep. My jugular was beating out my neck & when I tried to sleep, I slept for a minute or two at a time and had the same dream over and over and over. The name of the antibiotic kept repeating in my head. I just felt I had die. I wish the guy at the hospital had given me the term akathisia. That would have saved me. As I began to recover from the reaction, I recovered in the typical windows and waves pattern. I would be really bad then suddenly be back to normal. Completely back to normal. Every morning I was slammed with the nausea, retching and fear but I was making progress. I was functioning. I would have healed. I didn't know what was happening to me. I thought it was anxiety and depression. I was getting bouts of suicidal thoughts before I took psychiatric drugs. I'm certain now it was the antibiotics. But I was healing. After a few weeks, I went to the doctor and left with a prescription for citalopram.

 

I got a lot worse. Why didn't I stop them? Because I had already had suicidal ideation before I took them and was already pretty ill. But the point is, before I took the citalopram, it wasn't all the time. I was getting dressed every day. I was healing. I had a clear head. The worst symptoms before I started the drugs were the nausea, retching, anxiety and bouts of suicidal ideation. And I had many times of feeling completely normal! Going on the citalopram pushed it into a 24/7 state with virtually no sleep and new symptoms like jerks, twitches, sweats, shivering, extreme terror, bruising, screaming, adrenaline rushes, jigging my leg up and down constantly, swollen eyelids, inability to feel or connect and wanting to die every second of every day. And then memory problems and cognitive impairment. And then some. Again, why didn't I stop them? Because the doctors said they would kick in. Because I wanted them to kick in. Because I wanted to feel better. I wanted my life back. Because I believed the effects would go away and they would kick in. I was desperate. If only I had just stopped them. If only.

 

Isn't it weird, grieving for one's self? Grieving for the person you were before you 'died'? Grieving for the people who are still in your life because you can't feel any connection to them? Grieving for your memories because you can't reach them properly. The part of your brain that should connect you to the memories isn't working. Every thought is an effort. Nothing means anything. Nothing is funny. Everything is colourless. The only feelings are like those you feel in a nightmare or when waking from a nightmare. And agitation. Intense agitation and dysphoria. It's so frightening.

 

I looked in last year's diary. Just over a year ago, just before the antibiotics, we went to Chester for a long weekend. I was in a lot of physical pain but I had a great weekend and was happy. I remember walking round Chester, having a great time. Going on a river boat. Feeling so much. Loving life. Feeling life. Eating in a lovely restaurant. Watching a band playing in the bandstand. Going to Liverpool on a ferry and marvelling at the Liverpool skyline and the liverbirds. Loving all the history and the museums. Loving the beauty of the city. Feeling immense ohysical pain but loving every minute of my weekend. Feeling so grateful.

 

Yesterday, in contrast, I forced myself to go to oxford with my boyfriend. I walked around with dizziness, blurred vision, the feeling of a hole in my head where my brain should be, mental and physical agitation, greyness everywhere, memories of who I was, memories of past visits to oxford and of how much I always got out of them. Memories of how excited I always was about everything. Yesterday, I felt nothing. Nothing meant anything. Nothing has, since these drugs. I fought hard to appear 'normal' so no one would notice. I sat in a restaurant and fought to keep my legs still so no one would notice. I wanted to be anywhere but there but knew that wherever I was, I would want to be anywhere but there. There is no escape.

 

The previous day, we went to a beach. I felt..maybe a little of something while looking out at the sea. A little. Not sure what exactly. Something approaching calm, maybe, or a connection to how I once would have felt. I managed to get a haircut, the first in months. I walked into a hairdresser and managed to hold it together enough to have a dry cut. Today I have no idea how I did that. I'm glad I had it cut. My hair has been falling out in fistfuls. I only have to run my fingers through it and loads comes out.

 

Was that a window? I suppose it must have been, of sorts. I managed to go out two days running and compose myself. I managed to semi function. But my head symptoms and the agitation wouldn't leave my side. I suppose that was a window, inasmuch as I have them.

 

Today, I'm in a wave. A big one. I'm not getting dressed today or going far from my bed. I don't know how to be positive today. I don't know how to hope today. I don't know how to live today but I know I will.

 

My thoughts return again and again to Tim (Acetyl from this site). That poor, poor young man. He was so brave. He was so scared. He felt so alone. I am glad he has been released from his suffering. Poor, poor Tim.

 

When I first read of what happened to Tim, after the initial shock, my first thought was that I wanted to live. Today..today, I don't. I am sorry. I'm not going to act on this thought. It is what it is. I've felt this way for 11 months straight, both in withdrawal and on the drugs. Will these thoughts ever go away? Will I ever not feel suicidal? Will my mood lighten? Will my head become clearer? Will I be able to think properly? Will I be able to connect? Will I ever not feel agitated? Will I ever be able to sit comfortably again? Do I have what it takes to see this through? I guess I do.

 

I am so scared.

[Muddles]

I'm so sorry WinningThrough. You are so strong...no-one should ever have to suffer like you are, yet you do everyday and it breaks my heart.

 

Winning Through...that's what you will do...win through this horrific ordeal. I know you will and everyone here will be waiting for you at the finishing line.

 

You brave, brave lady.

[WinningThrough]

Thank you Muddles. Your friendship and support mean so much to me. The same goes for you. You will get there, I know you will.

[Petunia]

WinningThrough, thank you for posting so openly and honestly about what you are going through.  This is your thread for you to get help and support, so don't feel you need to censor yourself for fear of upsetting anyone.  I understand your reluctance though, I often hesitate to write for the same reasons.  But many of us experience extreme symptoms and sometimes reading that someone else has gone through something similar helps us not feel so alone.  Reading about your courage inspires me to keep going too. 

 

I relate to almost everything you wrote, including questioning if the slightly better days are actually windows.  Like you, I have 'normal' withdrawal days when I just feel awful, but manage to do a few things, then waves hit and it becomes about survival and just getting through the next moment, one after another.

 

Its true that we can't make your symptoms go away, but we can remind you that eventually, they will go away.  They will, recovery may be slow, but one day, you will feel excited again about going to Oxford or the beach.  That little positive feeling you had while looking at the sea is a preview of all the recovery which is happening.  They are precious little moments, reminding us that our brain is still capable of normality. I get them sometimes, small flashes of feeling the way I used to, reminding me that I'm still in here somewhere.

 

Someone else has written that its like we are the sun, always there, but sometimes we get covered in clouds, in our case, they are thick, dark, heavy storm clouds, but even storms pass eventually.

 

I know you are strong enough to get through this and we are here for you.  Post whenever you need to, especially if it helps, sometimes we have to say it exactly like it is.... and you did, thank you.

 

You will recover, we all will, if we keep going, taking each moment as it comes.

[mogfish]

Oh winning! I am so sorry to hear that you are going through such a hard time at the moment and are feeling so hopeless.

I wish i could do something for you to make you feel better. what I can do is to tell you that I promise you what you are feeling will pass. it will get easier.

 

When I had moments of despair and hopelessness I kept on telling myself that it will pass. It was horrible to be in the midst of such torment but please keep reminding yourself that it will get easier. I don't know how long it will take you as everyone is different but take solace in the fact that you have had windows however brief and you WILL have more and they will get longer and more frequent.

 

Please hang in there Winning. We are here for you to support you through your darkest moments. xoxo

[WinningThrough]

Petu, thank you for your beautiful post. I've read your thread and know you've been having a similarly awful time. I really like the reference to the sun and clouds. I do hope you get some relief soon.

 

Mogfish, thank you for your lovely supportive message. It's really helped. I'm so glad you are so much better now.

 

I have a new symptom. Intense itching. I was awake a lot if last night with insanely itchy legs. Hey ho.

[mogfish]

ahhhh the itching!! I too had the itching on and off for months but usually intensified with each taper. Mine was in the scalp and shoulders and at times had an associated rash. I was often getting my Mum to check me for Nits (head lice) as it literally felt like somethings crawling around in my scalp. It has gone now but I did find that using natural soaps such as goat soap and natural shampoos or at least shampoos without all the nasties in them to be helpful. Keeping your legs moisturised with something as simple and fairly cheap as organic coconut oil may be beneficial. I actually only cook with refined coconut oil ( being refined it doesn't taste coconutty) and pure butter these days and my food tastes delicious!!

[mattinsmom]

I'm sorry that you are feeling so crappy and that you also felt that you couldn't/shouldn't write. I think that we are all guilty of that to some degree. I think we so desperately want others to be ok, 1 out of care and 2 out of a need for hope. I have no advice and we've already learned there is no magic pill. For what its worth, I believe you'll come out of this better than when you went in (a year ago).

 

Peace

[WinningThrough]

Aw that's lovely MM, thank you!

 

Sorry you had the itching Mogfish. I will try the coconut oil.

[lexicon]

Thinking of you my dear WinningThrough .. I am saddened that you must endure all these symptoms

But they are temporary .. They will abate, and you will feel like your old self again .. You will 

Please believe and trust that this is true .. We all heal in the end ..

 

Look how wonderfully brave, and strong you are .. And how lovely and caring you are to others .. No matter how you feel, you are there encouraging others, myself included ..

May you have healing blessings .. I will hold you in my thoughts and prayers, dear, sweet,  WinningThrough

 

Love, Lexi

[WinningThrough]

Ah Lexi, what a lovely message. Thank you. You all give me hope. Thank you.

[mlrp]

Winning Through, just a quick hello and <gentle> hug of support. I read your list of symptoms on another thread (kudos to you for trying to help another keep things in perspective - it helped me!). I can only offer a promise of healing thoughts and prayers sent your way. I do believe with all my heart that you will Win Through. Wishing you increasing courage and strength to endure - and the swift lessening of symptoms.

[WinningThrough]

Hello mlrp. I appreciate your lovely message. I am so glad that message helped you. Thank you. I will visit your thread soon.

[WinningThrough]

I'm sorry that you are feeling so crappy and that you also felt that you couldn't/shouldn't write. I think that we are all guilty of that to some degree. I think we so desperately want others to be ok, 1 out of care and 2 out of a need for hope. I have no advice and we've already learned there is no magic pill. For what its worth, I believe you'll come out of this better than when you went in (a year ago).

 

Peace

MM, I just wanted to say, I love your words "I believe you'll come out of this better than you went in a year ago". I'm writing this down and pinning it on my wall. Thank you.

 

My positive mindset is emerging again!

[Skylarblue75]

Hi winning through, just checking in to see how your feeling, you always say such kind things. Your in my prayers.

 

Hugs

[WinningThrough]

Hi Skylarblue. Thank you for your lovely message :-)

[WinningThrough]

Loud tinnitus in my right ear. Marvellous.

[WinningThrough]

From what date should I count the beginning of my acute withdrawal? It started after I got off zoloft in early march, although I'd started to have symptoms on the way off that and seroquel. But I've been in acute withdrawal since early march.

 

My last tiny drop of zoloft was on 14th June. My last ativan was on 29th June. I hadn't had one for a few weeks and it backfired on me. When it wore off, withdrawal was worse than ever. Really bad.

 

So, do I count acute from 29th June when I took my last ever psych drug even though it started early march? Maybe it doesn't matter but it feels like it does.

[WinningThrough]

Hello. Don't like to post something like this, but ...

 

What do you do when you really can't stand it anymore? I've had extreme non stop suicidal ideation for 11 months and it's not showing any signs of abating.

 

I've had suicidal ideation on the drugs, during reinstatement and now in withdrawal. Do I just wait and wait and wait and wait for it to lift?(will it?) do I go on a low dose of something even though I know I can't take anything because of my akathisia?

 

This is ridiculous. The darkness in my head is unbearable.

 

I'm losing my ability to be positive. I've tried so, so hard for so long.

 

I wish I could distract but nothing distracts me. Nothing. I just wait for bedtime when I can sleep for a little while and escape it. At least I have that.

 

I know it's unfair of me to post this. I know no one has any answers. I've even considered reinstating again to make things a tiny bit more bearable (I was a little more functional on the drugs even though I was suicidal) but I don't know. I wouldn't know what to reinstate or if it would work.

 

I just want some relief, even for an hour.

 

Sorry.

[bubble]

Thank you for posting and reaching out WinningThrough. Please don't feel bad or apologise for sharing your feelings here. As Petu wrote recently, maybe we can't help but we can understand and offer support and it's good to let things out of yourself. 

 

I was just writing to Muddles. You two great beings seem to have hit a similar rough spot at the same time. I hope somebody will have some more ideas on something that could ease things for you. I'm not feeling as bad as you, nowhere near it but I still have such a long way to go on this drug and when they are finally out regardless of how slow I know it will be hard. You don't have them in your body any more but I totally understand how little consolation it brings when you are in total agony.

 

Are you taking any fish oil and magnesium? Taking something and clinging to the hope of healing would hep me pull through. I read your post about your visit to Oxford. Oh I had so many moments which you so beautifully described when I was a dead soul revisiting places I used to feel. I was 19 when it first happened to me. While my friends were enjoying student life I was dead. You mention waiting, and waiting. Yes, it is long but I want to assure you that it happens and it will happen.

 

Sending you strength to endure a bit longer.

 

And please reach out.

 

big hugs,

bubble

[WinningThrough]

Bubble, that is such a lovely reply. Thank you so much. In this dark place it does help to receive messages like yours. I'm so sorry for everything you've been through.

 

I'm contemplating pushing myself through the terror of having a shower and getting dressed and then making myself go out for a walk. The head pressure is so great though and I can't see properly. I did somehow manage to go to a large shopping centre over a week ago and walked and walked and walked. We even had a meal out. I don't really know how I do those things but somehow I do, sometimes. It was incredibly tough but after being out for a few hours, it sort of got a bit easier. Perhaps the days I force myself to do things are marginally easier. I don't know.

 

I'm taking magnesium. The jury's out on whether fish oil helps or not. I've tried it a couple of times but it seems to ramp things up for me. I may try it again at some point.

 

I've been using progesterone cream for a week (I'm in the thick of menopause). I was very nervous about using it because I've heard it hits gaba receptors and I'm pretty sure I'm suffering from benzo withdrawal as well as all the other withdrawal. I don't think it's made me any worse. I've noticed some differences. My hot flushes are less intense, I have less agitation with them, I have less sweating with them. I'm not getting as many. So far. And my skin looks a bit younger. I was using it twice a day and it seemed a bit much so I've cut down to once a day. It's so hard to know what to try or use but when you have severe menopause symptoms on top of all this rubbish, sometimes these things need to be tried, I think.

 

I speak to Muddles. I feel so awful that she's going through this nightmare. She is a beautiful person and does not deserve this. I would do anything to take it all away for her.

 

Thanks, bubble.

[bubble]

Glad to hear from you back!

 

Menopause can't be making this any easier! As far as I know, it's quite nasty of its own accord and having withdrawal in combination really sucks...

 

I would definitely say that as I call it gently pushing myself to do something although I don't like doing it in the least bit helps me a lot to recover. I learnt this from my aunt who is a simple country woman battling anxiety and depression on her own. She would tell me staring at the ceiling would do me no go and that I simply have to move. Liek fake it till you make it. Using the body puts mind at ease. She was also the one who introduced me to those healing walks which literally saved me on those occassions I felt beyond repair.

 

There is a difference between going to a shopping centre (can be quite stressful with all the noise, crowds, commotion) and going to a forest. It's even being scientifically confirmed as forest bathing There are so many benefits one is exposed to symultaniously. You don't have to feel like doing it, liking it, feeling anything, even feeling horrible. The only thing you have to do is get going and keep walking.  You can go as slow as you need to but the trick is that it is long. Maybe not initialyl if it's too much but as long as you can. I firmly believe in restorative powers of nature. 

 

I've been through awful places at a very young age: extreme panick attacks, severe anhedonia... BUT IT PASSED. 

 

Now I feel better than ever in my life and more comfortable in my skin than ever. I "just" have to get off the meds...

 

Look forward to hearing from you. I remembered visiting Oxford Never seen that many sheep grazing as on the bus from London to Oxford I bet there's some nice nature around and would like to read its descriptions Looking at how plants and little animals live is also very healing. Nowadays I pick up things like wild flowers, or herbs, hazelnuts, take pictures of flowers

 

here are some ideas for you

[Muddles]

Bless you WT.

[WinningThrough]

Thank u muddles and bubble.

 

Bubble, yes there is lots of lovely countryside around here. I don't think I will get out today but perhaps over the weekend when my boyfriend is here I will try.

[bubble]

that would be really great

 

Andy also mentioned therapy to Muddles which has also been very important for me always. Both to support me in dealing with present issues as well as resolving past trauma (which you don't have). But going through WD and experiencing this loss of oneself is a major trauma and talking to someone who understands psychological functioning is very helpful. It always helped me to keep my head above the water...

 

take care!

[Rhiannon]

WT, for me in those darkest times the only thing that I was able to do was get myself outside and walk and get some sunshine. And it helped, some. You have to just hang in there and keep going, because it is going to get better, you're going to have your life and your joy back, and then you will be SO glad you hung in there. It's going to take a while though.

 

If all you can do is get out and walk around the block, do it. If all you can do is walk a little way up the street and then hurry back home, do that. 

 

And if all you can do is come here and write to us, please, do that.