WinningThrough: Does it get better?

[WinningThrough]

Er, sorry for the somewhat dramatic post above. It was all getting a bit much! Slightly embarrassed about my post.

 

I've just updated my signature to include my propranolol use. It's impossible to know for sure but it's possible it may have contributed to my current wave. I took it for 5 days in a row and I experienced waves and windows during those 5 days, although it definitely helped me. I stopped because of a scary rash and worried about the what that could turn into. After I stopped, I noticed how good it was not to have flushes and sweats. I didn't have them on propranolol or after the first few days off. Then they came back. I got a bad headache that lasted days and horrible adrenaline shooting up my hands. I've had a lot of issues with peeling skin too.

 

I've just been looking in my journal and noticed something interesting. The wave I'm in suddenly deepened the day after I started using bazooka gel on my verruca. I have a verruca on my finger and have been applying the gel to the verruca every night. Is it possible that a topical verruca gel could affect me???? It sounds far fetched but maybe it's possible? I don't know if it gets absorbed into the skin at all. It just occurred to me that it could.

 

Looking through my journal I've also noticed that in the last 3 weeks since this killer wave hit, I've had about 3 weak windows and have managed to go out on those days. Symptoms have been lower on those days.

 

Perhaps this would all have happened anyway, regardless of anything I had or hadn't taken or used. Perhaps it's just the natural pattern of waves and windows. Today I've had a bath and dressed. First time since last Sunday. I may get out of the house today. Perhaps this will be a slight window.

[alex]

Perhaps this would all have happened anyway, regardless of anything I had or hadn't taken or used. Perhaps it's just the natural pattern of waves and windows.

 

ABSOLUTELY.

 

Hugs ALL the way from tiny Costa Rica to mighty UK

[WinningThrough]

Thanks Alex! I hope your window is staying wide open.

[alex]

Thanks Alex! I hope your window is staying wide open.

 

It is!! wide and clear....

[mattinsmom]

Checking in. How are you? Still surfing?

[WinningThrough]

Thanks MM. :-)

 

I'm terrifyingly bad I'm afraid. Sorry that's not a very positive response.

 

How are you now, MM? I hope your doing better. X

[WinningThrough]

Youre

[mattinsmom]

It is an honest response and that is more important. We can't heal if we can't be honest. I am sorry to hear that things are so bad for you and yet you ask about me. I appreciate your kindness. I am in a stable/busy/mostly good space. 

 

Light and love your way. I hope you find your window soon. 

[bubble]

Dear WT, I saw you posts in threads of some other people. Although you are suffering so badly, you still find the strength to reach out to other fellow sufferers. I'm sure this will be returned to you.

 

I don't know if propranolol contributed to the wave as you wonder... I'm currently placing a cause for decrease in my symptoms on weather. It just seems so logical that all teh sudden and natural changes that our planet is experiencing should left us anaffected. I don't know about you but thinking that I know what contributed/cause dto symptoms makes them feel more tolerable. Probably because it puts me in control...

 

big hugs!

 

Bubble

[WinningThrough]

Thanks both for your kind messages. Not up to writing much.

 

This akathisia has got to let up some time, it's just got to. How can it just never leave, ever? So scary.

[LoveandLight]

Hi winning through thinking of you and wishing you healing x

[WinningThrough]

Thanks Joanna. I hope you're coping ok x

[WinningThrough]

Wouldn't it be great if we had a fast forward button and we could just fast forward to a time when the worst of this was over? I wouldnt mind if I had lingering symptoms. I'd just like to not have the unbearable ones. Hell, I wouldn't even mind being housebound if I could just sit comfortably and enjoy reading a book, writing or watching telly or could lie comfortably in my bed, and if I could just distract and forget about all this. That would be absolute heaven for me.

 

I'm aware of how negative my posts are at the moment and it really hacks me off because I'm not normally a negative person. Quite the reverse. This monster wave is a beast. I've been in it about 6 weeks now, I think, and I'm feeling more than a little seasick.

 

I honestly can't say I've ever had a real window because I never don't have akathisia, terror, darkness, doom, anhedonia, etc. I do, however, get variations in the withdrawal symptoms. For example, the horrendous feeling that something is sitting in my head behind my eye has been better for a while now. My hair is starting to feel like hair again rather than a sticky, gloopy, hay like mess with a film on it, so something's happening. My peeling skin is a lot better just now. The brain zaps are still there every morning but on the whole are so much better than they were. I no longer get double vision. My eyes, though far from right, are improving. So I guess if I hadn't had an adverse reaction in the first place, I'd be getting windows from the withdrawal aspect of this. I hope THIS aspect of my post will give people hope. Perhaps those who need hope can ignore my akathisia reaction but look at how my withdrawal symptoms are improving. I imagine that without the reaction, I'd be doing quite well.

 

I have to remind myself that I had a serious reaction to citalopram last year so my recovery was never going to be an easy one. Even if I hadn't taken more meds and caused chaos by jumping off them, I quite possibly would have suffered badly anyway having had such a dreadful reaction. I also have to remind myself that I'm only in month 5 off all meds. If I hadn't already done 9 months in the torture chamber, it wouldn't be so bad!!!

 

I need to get some positivity back. I'm avidly reading success stories just now. I can do this. I can. Others have been where I am and had the strength to make it through so I can too. This will NOT beat me.

[Muddles]

You CAN do this. I have never had any doubt about it. I pray this wave passes and the akathisia lets up. You deserve some relief.

[WinningThrough]

Thank you x

[chicken]

Still praying for you Winning. I'm glad to see Muddles is doing better.

 

I see you took Augmentin from your sig line? I'm not suprised that and antibiotic could cause problems. I've been doing some research on Cipro. I am a firm believer that Cipro messed up my Remeron.

[WinningThrough]

Thanks chicken. Yes, augmentin started all this. Thank you for your prayers. I don't mind admitting that I need them right now. I just don't know what to do with myself.

 

Thank you for your kindness x

[LoveandLight]

Will pray also xx

[WinningThrough]

Thank you Joanna x

[WinningThrough]

I worry that my posts might frighten or upset people. I hold back on posting because of this and because I don't want to sound negative. I was someone who always tried to be positive.

 

This wave won't let up. I don't know whether this is a wave or just my baseline. I've been like this so long now. I had a time where things were still dreadful, just not so dreadful. I still don't think I can really call those times windows as even though they were more bearable and I was more functional, I was just so far from normal and was putting on a huge act.

 

My acute first hit in early march but even then I was feeling tough and strong and felt I could slay the monster. I was hit with withdrawal on top of the akathisia but glad to be off the drugs, as I was reacting to them so very badly, and very determined. After I messed up my reinstatement by accidentally going on a higher dose than I intended and then coming off again, my withdrawal was worse. And that's pretty much been my baseline state since, I think, with some slightly better days. I felt dreadful on my second reinstatement.

 

I'm absolutely certain I have a lot of benzo withdrawal in this. I was on 1mg of ativan (occasional use) and that was quite a high dose. I often think I'd have been best off just going on ativan at that dose and titrating off very slowly. But who knows how that would have gone. With me and my extreme sensitivities, I feel that whatever I did would have been bad.

 

I was awake until 3ish last night feeling like I was coming down with a cold but this morning it's gone. How weird. I woke straight into a crying spell and that's pretty much continued.

 

It's hard to be so early on in my recovery yet already having 14 months of intense suffering behind me. It's hard because I just don't see too many people with the movement version of akathisia. I see people with the mental torture but not the movement bit. The mental torture is beyond horrendous and if that would go, I'm sure the rest would be easier. But this terrible, terrible, relentless, indescribable feeling in my legs is just dreadful. It's unbearable but I have no choice but to bear it. What else can I do? It's so weird having a disorder where the movements aren't involuntary yet they almost are because I just HAVE to move. Not moving is almost impossible. It worries me that this is some form of tardive dyskenesia and will never go.

 

It's so weird that the ativan used to stop it.

 

People say akathisia goes away in time but I'm finding it increasingly hard to believe when it's been going on so long with absolutely no breaks. It feels so permanent. If it would just break up for a short while, I would be able to believe that it would go away.

 

I don't know what more I can do than I'm already doing. I eat a very healthy diet. I say affirmations. I read success stories. I've written imaginary success stories. I've prayed and prayed and prayed. People have been praying for me. I've had healing and absent healing. I force myself to get dressed some days and force myself out of the house for walks. I see friends occasionally but it takes everything for me to get dressed and get the house into reasonable order for them. I play games on my iPad. I have the tv on. I've tried visualisation, meditation and EFT. I call the Samaritans (the suicide hotline in the uk). I try so hard but nothing changes. If anything I feel worse. I keep telling myself that this will get better in time.

 

I just hope I have the strength to make it through this, I really do. Right now I just don't know. It's the now knowing how long this will take that is the hardest part.

 

I look back to my earlier posts when I first came here and I was so much more positive then.

 

I'm sorry if my posts upset anyone. I really don't want to frighten or upset anyone. It worries me that someone new might read this thread and be terrified. I really don't want people to be terrified by it. We are all unique and this is my unique story. I just sometimes need to vent here. I don't know what else to do.

[WinningThrough]

Should I go on benzos or is that a really stupid idea?

[Rhiannon]

WT, this is your thread, and you can use it to tell your truth whenever you want. This is how it is for you. You're not making stuff up to scare people. It's okay to say it how it is for you.  I'm sorry it's so awful and so unrelenting.

 

Please do keep that daily journal, even though things are so bad. I promise you will be glad later that you did. Just rank your daily symptoms on a scale of 1 to 5, and make a note of any special events or activities or changes in meds or anything else. 

 

I'm sorry, I don't feel confident enough in my experience to say at this point if taking another medication would be a good idea for you or a bad one. Other than the usual advice on reinstatement from the forum, I don't recommend specific meds to people.

 

What I do feel I can confidently say is, if you do decide to try something, start at a very low dose, lower than the "therapeutic" dose, and stay with that for a while unless you have an obvious immediate dangerous reaction to it.  You are probably extra sensitive to psych meds so more is definitely not always better. And benzos are tricky and dangerous. (The latest thing they've found is an association between benzo use and Alzheimer's.) And you will have to taper slowly off that one eventually.

 

So if you do try something, go into it with your eyes open, go with the smallest dose you can manage (like maybe no more than half of the smallest tablet they make, to start with) and keep careful notes of your response to it. Oh, and Ativan or Xanax have to be taken multiple times per day to maintain stability, so be aware of that too.

[chicken]

Winning,

I would agree with Rhi, if you do start something do it with a very very small dose. My doc gave me tranxene. It is one of the weakest benzos. Doctors usually want to hit people with potent ones like ativan and klonopin. I can tell you that after trying klonopin one time, it is very potent. My pdoc does not believe in giving high doses of potent drugs and he knows my fear of drugs so he gave me tranxene. I have been able to taper it without problems because it has a long half life.

 

I'm not trying to push a particular drug but I think if you did try a benzo the least potent one may be best.

I've had anxiety so bad that I paced the floors all night long. Tranxene helped. I never would allow myself to go up to too high of a dose of it though and I never had any interdose anxiety. I think one can take up to 4 pills a day of tranxene but I never got up to that amount. Right now I am at 1/2 a pill and still slowly tapering. I'm having no problems with my taper of it.

 

My pdoc is very reluctant to prescribe benzos because he says many people abuse them. He trusts me with because he know I will not keep upping the dose. If you've had trouble with them in the past in may not be a good idea. I say this because I've never had problems coming off benzos but I know some people do. I don't know if you are one of them that would have problems or not. It may be risky but if you are at an unbearable level of anxiety as I have in the past maybe a small amount may at least give you some quality of life until this lets up.

 

I speak only for myself here. I don't fear a small amount of benzos, it the antidepressants that scare me the most because my trouble has always been with them. However, those who've had trouble with benzos may say the opposite.  Either way I would just like for you to have some relief from all this.

 

Pray for wisdom from the Lord before making a decision. I chose to take a low dose of benzo. That was my choice for my situation. Your situation and body is entirely different from mine so it is hard for me to say what another person should do. My heart goes out to you. I'm still praying for you and I sense that you will make the right decision. You have  all the knowlege that is on this board so I know you will be very careful.

[WinningThrough]

Thank you Rhi and chicken for being there for me when I was flipping out. Yesterday was one of my worst ever. I think my own anxiety was playing into it as well.

 

I was thinking of benzos yesterday in absolute desperation but today I'm thinking more clearly. Given my history I think it's a bad idea. If I ever did, it would be tranxene as you suggested, chicken. But knowing how badly ativan hit me yesterday and given the terrible withdrawal when it wore off, going on a benzo doesn't look good for me, especially with 5 months healing under my belt. So I'm going to keep toughing it out, knowing tranxene is an option if I get to a dangerous point.

 

Today is a better day. I feel better than I have for a while.

 

Thank you for helping me through.

[chicken]

Winning,

I'm glad you are feeling better today. At least you tried to the benzo and now know that it will not work. Have you checked your blood pressure? I had a dull pain in my legs and a weird feeling in my head that I attributed to anxiety and meds but it turned out to be high blood pressure.

[LoveandLight]

So pleased to hear your feeling better xx

[WinningThrough]

Just realised I said I tried the benzo yesterday! That was a big typo!!! I didn't try it yesterday, I meant I took one at the end of June and it backfired!!! I haven't had one since.

 

I haven't checked my blood pressure, chicken.

 

Thanks Joanna.

[chicken]

Winning you really should check your blood pressure. Anxiety can increase your heart rate and pressure and the reverse is true that HBP can cause anxiety. I know a lot of people who said they've felt weird with HBP. A friend of mine says he has a buzzing in his head when his BP gets high.

[WinningThrough]

Thanks chicken. I will see if I can get hold of a blood pressure monitor.

[chicken]

Winning,

Were you able to find out your blood pressure reading?

 

The pamelor that I'm taking has raised my blood pressure. The doc cut the pamelor down and my blood pressure dropped to near normal but was still a little high. I'm on a very small amount of blood pressure medicine and it makes me feel a whole lot better. Once I'm off the pamelor, I'm sure my pressure will return to normal.

[WinningThrough]

I haven't yet checked my blood pressure, chicken. I'm definitely not going to the doctor to do it because that's way too much for me. So that means going to the shop to get a blood pressure monitor which is a massive feat for me. And then all the working out how to use it is massive as well. Sometimes I force myself out so if I get a day when I can do that I can get one. Otherwise it means my poor boyfriend has to do it and I feel so bad that he has to do so much for me. I was such an independent person and I never asked people for help.

 

My blood pressure has always tended to be more on the low side. I don't know what it is now. I don't have a fast heart rate.

 

I'm glad you're feeling a bit better.

[mattinsmom]

Hi

 

I see that you had an exceptionally rough go of it a few days ago. Is today any better? Is there even a gleam of not as bad?

 

As for the benzos - not a fan and I take them. I do get some help from them, I think, but mostly I believe I still take them simply to avoid w/d. I will say that they work very well in stopping a panic attack but the left-over crap when they wear off is rarely worth it. And, to be honest, at that point I am usually turning to them because they are easier than dealing with what is going on.

 

I know that what you are experiencing with the constant need to move is a very different scenario and I give you credit for being able to function on any level. I am quite sure I would have completely lost it if I were in your situation. 

 

Have you tried magnesium? I'm not sure why that is popping through my head as a possible help except that it does help me to relax. 

 

I hope that you are able to find something to slow that need for movement down. I've had short periods of it, it is beyond miserable, and as I said I don't think I would make it through what you are. Wishing you calm and peace.

[WinningThrough]

Thanks for your lovely post MM. I appreciate your kind words.

 

I'm a tiny bit better than I was the other day. Varying degrees of awful, really!

 

I take magnesium. I also take vitamin c. The akathisia forum recommends vitamin c. It helps with my digestion. Those are all I take.

 

I'm reminding myself that others who recovered from akathisia said it was best to take no pills at all and wait for it to fade in time.

[mattinsmom]

glad to hear that today is a little bit better. Every little breath.

[WinningThrough]

Another negative post from the voice of doom!

 

I've had people say they've looked for others who were similar to them and I was the closest match as I was the worst they could find. This has me so frightened. If people see me as one of the worst cases, if not THE worst case, what hope is there? I know I'm very ill but I'm trying so hard to believe I can heal. I don't want to see myself as one of the worst ever. It makes me feel like a freak who has no chance.

 

I've come to realise that severe akathisia really is rare because I just don't read about it very often. I really don't. I come across some people with the mental symptoms but not with the movement part as well.

 

Please tell me there is hope for me.

[LoveandLight]

I believe there is hope for you. Even although it might seem like a lifetime you've been suffering so badly, in the scheme of things many people on here have long histories..from your sig it doesn't seem that long for you - I know it might not seem it.

 

And you've talked about how good life was before, even although it might seem like a distant memory..there will be things to go back to when your well.

 

And your really very strong - able to support people even when struggling yourself. And you have talked about how happy you were before, I believe this is also in your favour, as withdrawal seems to reinforce trauma issues already there...

 

It might not seem it, but maybe there is a very well person underneath all this, if 'this' could just lift a little.

 

Who on earth is telling you things like that? What a cheek!

 

I think on the akathisia blog the founder said 6 months she experienced it, I think? That was when she was med free, so it may not be as long as you think.

 

Wishing you much healing. Hugs xxxx