bheb: akathisia without dose change

[bheb]

Thank you shep.

 

Yes I got a bit confused because that bit suggests that reinstatement, if it works, could take a while. So updosing mightn't be as necessary as holding. But again, as I get farther out time-wise, updosing will be riskier.

 

I'm not having a bad reaction. Actually, it may already be helping. I haven't had any intense pacing/scratching episodes in a few days.

 

I'll hold at 1.6mg for now and post a symptom pattern in a few days.

[bheb]

11/21 woke up at 8 unsettled but not too bad

9 Burning itch inside my body close to skin starts 

10 chest uneasiness, burning agitation under skin

10:30 able to focus but agitation with me

11:30 vomited after breakfast (?)

agitated but able to distract

5pm nauseous malaise

6pm dinner,  calm and tired

7:30 Prozac

7:40 start to get a tiny bit agitated

8 feeling like people are evil and uncomfortable by the sight of and interactions with anyone. slight terror

9:30 Clonazepam

11 small Inklings of agitation with periods of calmness past two hours in room

1am sleep

---

11/22

7 am disturbed sleep, irritated and a little agitation

fell back asleep

woke at 10, light agitation

 11:30 breakfast, no noticeable agitation

3:30 light physical agitation

4pm itchy agitation under the skin, not awful

5 dinner

5:40 light burning agitation in muscles

6:30 relief

7 creeping up agitation, take prozac

930 clonazepam, pizza, on and off relief but no bad agitation

10:30 lots of energy

1am  sleep

--

11/23

10:40 sitting in class feel maybe a little restlesnnes uneasiness not bad

12:40 lunch

2pm Still relief even sitting in class

in class i couldnt focus mostly because i was having good day dreams, feeling hopeful and excited for life

5:20 back in room after class, light burning agitation under the skin

7 Prozac

7:30 some terror maybe , dread at having to do anything

8 not agitated but feel scared and hopeless after reading too much maybe

9 was very uneasy at dinner, some dp

9:30 clonazepam

10:30 lower intensity agitation /general relief

12:30 just not getting tired. Feel very alert. Same as last night. Tingly buzzing numbness agitation, but not awful

2am sleep

--

11/24

5am anxiety uneasiness in chest

i think back to sleep?

8am continued uneasiness vague restlessness. Irritable. Burning skin

9 nauseous

10 breakfast

12:30 nauseous still. Breathless feeling, choked up chest suffocation

2 still really nauseous

uneasy

2:45  light agitated numbness

4 lunch

4:30 feel “light” in my body. A little uneasiness

5 some terror and skin burning

5:20 increased fear skin burning dread don't want to do anything

 

--

As far as distinguishing benzo vs AD symptoms like you mentioned shep I think the only one I can pin on benzos alone is skin burning and terror. But I'm not so sure because overall destablization I guess

[bheb]

Overall things had been better for about 5 days, but today has been worse.

[Shep]

Two quick questions about the timing of Prozac, since you are taking it at night. Have you always taken Prozac in the evening? And do you find it stimulating? You mention "lots of energy" on 11/22 at night and "feel very alert" on 11/23, also at night - do you think that moving your dose to earlier in the day will help?

 

If so, we generally recommend only moving your dose by one hour a day to give your nervous system time to adjust. 

 

I'm glad to read that overall things are better. 

 

 

[bheb]

Hmm that's a good point. I can't remember really but I think I took at a night at least for some time. At one point, I was also on a divided dose morning an evening. I was having some insomnia a bit before the akathisia hit so maybe it was stimulating then too. I will observe a bit more and then maybe move it earlier. 

[bheb]

I think the terror uptick is probably partially due to the end of a holiday of sorts during which I was able to get away from my room (a place I associate with terror). And also a stressful event.

 

 

 

[Nikki74]

Hi Bheb

 

Just checking in and see you’ve reinstated the Prozac. How are you doing? 

 

My aka is the same though it’s eased off for an hour or so today, lower level. Including the terror which left completely for that time. But I am on my own with very little stimulation. 

 

I hope you see some more general improvements x

[bheb]

Hi Nikki. Thanks for stopping by. These past days haven't been so great. Return of more constant terror and also bubbling itchy agitation in the limbs which is keeping me up right now. I'm starting to wonder if my improvements earlier in the week were due to something else. It seems I always have some level of agitation and I'm not really sure why they trade off -- there's not often a full break but there's also not often a combination. Terror leaves to be replaced with chest anxiety and discomfort which leaves to be replaced with itchy need to pace, etc.

 

Anyway, I'm hoping to still be in an adjustment period and that those early moments of relief return. No terror right now really which is the scariest for me. Glad you got a break from it too. Hope you are sleeping well.

[wantrelief]

Hi bheb,

 

I wanted to check-in on your thread and see if you have noticed any improvement today?  I am hoping you feel a bit better - well, I wish you were feeling a lot better but even a bit would be good if you are in wave.

[bheb]

1 hour ago, wantrelief said:

I wanted to check-in on your thread and see if you have noticed any improvement today?

 

I woke up today with really bad physical agitation. Writhing around in my bed to "get it out of me." Lasts throughout the whole day unfortunately, but I try to keep moving around. That's pretty much normal for me though nowadays. I did have a moment of relief from 8-9:30 where the agitation was subdued to a mere prickly discomfort. Increasing more now, and a bit scared to try to sleep tonight. We'll see.

 

How was your day?

[wantrelief]

Oh, bheb so sorry....that sounds really awful.  Are you able to sleep?  I am really sorry you are going through this.  

[bheb]

13 hours ago, wantrelief said:

Oh, bheb so sorry....that sounds really awful.  Are you able to sleep?  I am really sorry you are going through this.  

 

Thanks, wantrelief. I had a lot of motivation to push through the first 6 or so months (when I thought it would be gone in a year), but I'm really struggling to cope nowadays.  Sorry you're here too. 

 

I am able to sleep actually. Now that I've been tapering off the drugs that helped me sleep earlier on, not as well, but I do sleep. 

[wantrelief]

I am glad you are able to get some sleep to get a bit of a break from your symptoms.  I saw your note in my thread about maybe taking some time off from school....it must be really hard to be coping with everything you are dealing with on top of school so maybe it would be good to take some time out.  I did quit my job - it was never a good fit for me and this just became more apparent as I started to not feel well.  It is hard not having work as a distraction and routine but on the other hand it does take some of the pressure off as my job was very stressful.  I feel fortunate to be able to do that at the moment.  If you can take a break, it might make it easier to find the reserves needed to deal with withdrawal.  You have been doing so well coping with really awful symptoms....you have a lot of strength, bheb.

[bheb]

2 hours ago, wantrelief said:

I saw your note in my thread about maybe taking some time off from school

 

I actually just started the process today of contacting people. I've been delaying it and trudging through my assignments, but it's really not worth it...no use dealing with more stress just to produce mediocre work. 

 

2 hours ago, wantrelief said:

 I did quit my job - it was never a good fit for me and this just became more apparent as I started to not feel well.

 

I'm glad this illness has given you some insight even if it has been miserable. Hope today isn't too bad for you. I also feel fortunate that I can take time off...that I have somewhere to go. Even if it will be stressful trying to convince my family that I am truly sick and not making it up. They're still there.

[wantrelief]

I am so glad you are able to take care of yourself by putting school on hold and that you have somewhere to go.  Perhaps your family could read some information on this website to understand what you are going through.  

 

Yes, it was good for me to finally realize the job was not a good fit.  I should have listened to myself a long time ago about this.  I do have some anxiety about what I'll do next but am trying not to think about it as much as I can and just get through this time.

[Littlegrandma]

Hey bheb 

Oh, the akathasia is hell. I had it for 2 months straight. Day and night with complete insomnia. I am sorry you suffer that. I see a lot of our symptoms are the same. I’ve had pins and needles the whole WD but now 5 mo later, it’s turned into a burn. Couple spots on my leg feel like it’s held to a blow torch. And my left eye went from pressure, to sore, to burn. I’ve been reading today one eyed. 

  I’ve read your thread twice and have many questions for you, but can’t verbalize them right now. Fog, dp/ dr is really bad today. I hope I can make more sense of it tomorrow. 

  Just wanted to say hi. Thanks for stopping by my thread. And sorry you’re caught up in this nightmare too.  Take care, lg xx

[bheb]

4 hours ago, wantrelief said:

I am so glad you are able to take care of yourself by putting school on hold and that you have somewhere to go.  Perhaps your family could read some information on this website to understand what you are going through.  

 

Yes, it was good for me to finally realize the job was not a good fit.  I should have listened to myself a long time ago about this.  I do have some anxiety about what I'll do next but am trying not to think about it as much as I can and just get through this time.

 

Yes, I'm gradually introducing them to these online resources. Of course they are skeptical of anything online. And I guess I should rephrase. They don't exactly think I'm faking...I think they're just dumbfounded that something like this isn't medically recognized. I don't think they've quite accepted that I'm in an unlucky minority (though maybe not as small as we think) and there is no treatment. Heck, it's hard for me to accept myself. They disbelieve out of concern, I guess. 

 

Do you have a support system while you're at home?

 

[bheb]

28 minutes ago, Littlegrandma said:

Hey bheb 

Oh, the akathasia is hell. I had it for 2 months straight. Day and night with complete insomnia. I am sorry you suffer that. I see a lot of our symptoms are the same. I’ve had pins and needles the whole WD but now 5 mo later, it’s turned into a burn. Couple spots on my leg feel like it’s held to a blow torch. And my left eye went from pressure, to sore, to burn. I’ve been reading today one eyed. 

  I’ve read your thread twice and have many questions for you, but can’t verbalize them right now. Fog, dp/ dr is really bad today. I hope I can make more sense of it tomorrow. 

  Just wanted to say hi. Thanks for stopping by my thread. And sorry you’re caught up in this nightmare too.  Take care, lg xx

 

Hi lg. Real sorry you've experienced this, but thrilled it's gone! Not to minimize your ongoing concerns, but being on the other side of akathisia is huge. I'm lucky that mine is mild enough that I do get some asleep. Just can't understand why it hasn't improved much since a year ago. 

 

Feel free to ask questions when you remember/feel better. I thankfully don't have much cog fog...hope some sleep helps you tonight.

[wantrelief]

4 hours ago, bheb said:

 

Yes, I'm gradually introducing them to these online resources. Of course they are skeptical of anything online. And I guess I should rephrase. They don't exactly think I'm faking...I think they're just dumbfounded that something like this isn't medically recognized. I don't think they've quite accepted that I'm in an unlucky minority (though maybe not as small as we think) and there is no treatment. Heck, it's hard for me to accept myself. They disbelieve out of concern, I guess. 

 

Do you have a support system while you're at home?

 

I am glad your family is open to learning about all of this awfulness.  You are so right, it is hard for us to understand how we ended up here, let alone explain it to other people!  So true as well that this is a weird condition in that there isn't any treatment - nothing about it is straightforward.

 

I am lucky in terms of my support system.  I have a wonderful husband, my sister and brother-in-law, as well as friends - although it is harder to keep up friendships.  I also worry a lot about my sister (she is actually my twin sister) because she is on medication too.  She is doing well but I always worry about her.  In fact, she did go through some problems a few years ago with her medication and I knew exactly how she was feeling.  I had been trying to taper Zoloft at the time and ended up completely crashing - that is when I ended up on Klonopin.  Sorry - don't know why I just divulged all of that but it seemed pertinent for some reason.  I guess you are easy to talk to!

 

When are you planning to leave school?

 

 

[bheb]

13 hours ago, wantrelief said:

Sorry - don't know why I just divulged all of that but it seemed pertinent for some reason.

 

Please! Don't worry about it. Share as much or as little as you'd like.

 

13 hours ago, wantrelief said:

 I have a wonderful husband, my sister and brother-in-law, as well as friends - although it is harder to keep up friendships.  I also worry a lot about my sister (she is actually my twin sister) because she is on medication too.  She is doing well but I always worry about her.  In fact, she did go through some problems a few years ago with her medication and I knew exactly how she was feeling.

 

That is so good to hear. So I'm guessing your sister understands, more than others, how strange the symptoms can be even if they fortunately didn't last for her?

 

13 hours ago, wantrelief said:

When are you planning to leave school?

 

I'm not sure yet. The end of the year is near anyway, but I still think I want to withdraw within the next week or so. 

[wantrelief]

Thanks, bheb.  I am so glad you are taking this break from school and am hopeful the reduced pressure will help you in your recovery.

[bheb]

Me too, wantrelief.

 

I've updated my signature but just want to make a post here as well. My doctor dug up some past history that I hadn't recalled. Apparently I had more dose changes that I didn't remember, and also more periods of restlessness even if they didn't last as long as now.

 

December 2015 at 20mg, I had an acute episode of akathisia after being on Prozac for 4 months. Probably brought on by a stressful event. Cleared up in a day. Doctor reduced my dose to 15mg.

 

February 2016 back up to 20mg.

 

May 2016 back down to 15mg.

 

June 2016 down to 10mg.

 

August 2016 no Prozac changes, but I did take phenergan, promethazine, and prednisone for a week or so. Had about a few weeks of agitation and a little akathisia probably. 

 

October 2016 back up to 15mg. Restless feelings. 

 

December 2016 High akathisia/agitation, at the level I feel it now, arises

 

So it turns out the title of my thread is inaccurate. Hmph. No immediate dose change, but of course I know now effects can be delayed. 

 

 

[bheb]

I titrated up to 3mg of Prozac. I've been on this dose for about two weeks now. I can't say that I've noticed a pattern, good or bad. 

 

I think I want to either hold this dose or begin tapering, based on how attached my body has become to the drug. Though I can't tell. It's been a month since I've reinstated prozac so that makes me think long enough to be bound by the normal tapering rules, but I was on a very small dose at the beginning. 

 

Do I need to taper off this reinstated dose by 10%?

[bheb]

Any advice before I take my dose today?

[Nikki74]

Hope you get some feedback soon . I know you’re keen to stop the Prozac x

[bheb]

Thanks Nikki. 

[Nikki74]

How are you doing Bheb? X

[bheb]

Hi Nikki. Haven't heard back so I still don't know what to do about the Prozac. I might just reduce by cutting .1mL a week (I'm at .8 which is 3.2mg)? I don't know.

 

Everything is about the same. But I've started to have this new neck sensitivity. Nowhere near as bad as akathisia of course. It's strange though. Since Friday, all of the sudden I can't wear scarves or turtlenecks. It's a tickly uncomfortable feeling. Strange and don't know why it's happening now. I started magnesium about a week ago...I wonder if that's to blame?

 

Howre you?

[Nikki74]

I’m sorry you’ve not heard back. I think your plan sounds perfectly good. You don’t want to stay on it.

 

I’ve heard of that kind of sensitivity you’re describing Bheb. I can’t think what it’s called. I have CFS and I’m sure I’ve read people having sensitivity to clothing on their skin on some part of their body. I’ll look it up. 

 

Oh it could be the magnesium! 

 

I get a tingly thing in my feet and need to remove my socks/ slippers. I’m not on magnesium and I put it down to the akathisia.

 

I’m doing a bit better with other symptoms but the akathisia is with me always and depression every morning in particular.

 

 

[bheb]

Ah yeah. I know it's very common for clothing to be irritating for akathisia, I just hadn't experience it before.

 

I'm glad your other symptoms are letting up for you, but still so sorry about the akathisia. It's so persistent i can't understand why. And I think the most challenging thing is that it shows very little progress. I've had it a year at pretty much the same level (with some very short windows sprinkled about that I think are mostly due to environmental circumstance). Thankful it's not as bad as some, but I really can't look back and say the physical agitation has improved. I take pretty detailed daily notes, and I'm thinking they're useless because akathisia experiences are so hard to compare. The only thing that serves as an objective measure for me is if I label it as "awful" versus "able to distract from." But it's tricky when you've got mostly "awful" labels...because that adds an emotional component when you really want to be able to rate/describe the experience in a way that lets you chart change. Akathisia is just so bizarre!

 

I guess I say that because I know you're not seeing much change in the akathisia either and it makes you hopeless. But we have to remember that people start improving after years of this. It's just hard to hold onto that when you want some tangible improvement month to month. 

 

Hope you get get some real rest this holiday. 

[bubble]

Hello Bheb. I've read through your thread here and noticed that its titled needs to be changed as you wrote yourself. In retrospect there had been changes and it seems that updosing in particular was too activating and caused symptoms of overstimulation which you call akathisia.

 

One month after reinstatemeny following 8 months off is actually a very short period. As with many of us what reads through some of your latests posts it is impatience, battle fatigue and the need to do something.

 

It's hard if not impossible to tell what to do but my personal choice would be to continue to hold and see what happens.

 

You sleep (which is a very big thing!), you go to classes and although you struggle a lot you remain to be fairly functional. There is this other way of looking at our experiences: sometimes a 'window' is not only improvement but the fact that things are not getting any worse. Periods of less intense symptoms (which seem to be regular and frequent) are your windows.

 

As you keep your doses stable it is expected that symptoms will become less and less intense and those moments of awful also less awful. And gradually over a few months you will realise there has been an overall improvement.

 

In one of the posts you report on the lot of ping pong from 20 mg to 15 to 10 and up to 15 and back down and a very destabilising every other day almost CT...then  a benzo, then tapering benzo, then reintroducing Prozac - only a month ago.

 

In the light of all that I really think your brain would appreciate stability and I'm not at all surprised that it is taking so long. And given all the circumstances you are not doing so bad.

 

But the battle fatigue is understandable...I hope you can in some way at least a bit shift your focus from drugs and tapering and let it slide to the background of your life by focusing more on things which are still good. When I feel horrible I might see it as a success that I even made it to work, or if I didn't make it that I had enough presence to take care of myself and so on. A lot of positive reframing and belief that although things wouldn't clear within a year as expected they will for sure.

 

Once we stop expecting so intensely things happen faster...

[bheb]

Thank you very much for the detailed reply.

 

Yes I do need to focus on the positives. I really am grateful that I can control my movements. Sometimes it's really hard to keep myself from digging at my skin or running sprints in the backyard, but I do it. I can lie down which is very good. 

 

Yes, expectations are hard. I think particularly now it was difficult since my second lap just started. A year was really the only psychological time stamp I had before, so I think I will be able to get back into the rhythm of waiting very soon. 

 

I actually haven't been keeping up with classes anymore. And will most likely be taking time off. However, I'm trying not to see this as a decline because in the beginning I had a benzo as a crutch. So I wasn't really coping in the same way that I am now.

 

Just to clarify, I should stick with reinstatement even if I haven't noticed an improvement with it? I am okay to hold on, I just worry that the drug might be adding its own activation symptoms since I did struggle in the past with increases

 

Edit: the reason I worry about that is because I have been having nausea and other digestive issues since I reinstated. In addition to a caffeinated hyperactive feeling from time to time. Both are mansegeable. I just mention them in case they are a sign my body isn't liking this reinstatement. 

[bubble]

My take is your body doesn't like changes and destabilisation either. Since you took the course of reinstating and it didn't make you feel worse I would keep the course even if you don't see improvements.

 

Stability is what heals. So far you have been very focused on managing your symptoms by tweaking your drugs. You could try focusing more on coping skills which I see you are already practicing. Instead of wait for a particular outcome you could reframe your expectations into something like: let's see what happens over the next month! I will deal with whatever comes.

 

We can always reassess and start tapering. But if you start tapering now you will never know if stability would help.

[Altostrata]

bheb, what times of day are you taking your drugs? Is there any daily pattern with the symptoms?

 

Do you have a skin rash? Why did you take prednisone?

 

On 11/29/2017 at 11:53 AM, bheb said:

August 2016 no Prozac changes, but I did take phenergan, promethazine, and prednisone for a week or so. Had about a few weeks of agitation and a little akathisia probably. 

 

[bheb]

Got it bubble, sounds good to me.

 

Alto, no I didn't have a skin rash. I don't really know why my doctor put me on it honestly. I was having what she called paresthesias and I think it was maybe for that. Also that should read promethazine, methocarbamol, and prednisone. I'm pretty sure that methocarbamol was for the paresthesias as well. I now realize I was having some strange neurological symptoms that included weird skin sensations and sensitivities that may or may not have had something to do with Prozac. 

 

I take my Prozac at noon, and Klonopin at 5:30pm. I just switched timezones, so before I was taking them at 5pm and 9:30pm. As far as a pattern, I really can't discern anything. My symptoms do vary a lot during the day, but not in the same way. Sometimes mornings are better, sometimes nights are. Sometimes exercise makes my body more restless right after, and sometimes more relaxed. And so on. However, I do think having Prozac earlier in the day now is helping with sleep.

 

Thank you

[wantrelief]

Hi Bheb,

 

I haven't seen you around lately and wanted to check-in and see how you are doing.  Hope you are doing ok.