bheb: akathisia without dose change

[eymen23]

On 2/23/2019 at 6:18 PM, bheb said:

By some miracle I will actually graduating college soon. It’s been almost impossible to do with akathisia and not being able to comfortably sit.

 

I was hoping to take a year off and work in a restaurant or some setting where I wouldn’t have to be at a desk 9-5 combating the agitation, restlessness, tension. But my family disproves. They think this is me giving up on my career but I don’t know how to communicate the severity of this and how much I think it would be healing to do something else.

 

How do others cope with this? Having to work?

 

Congratulations! I know it won’t feel like it at times, but that’s a huge accomplishment given what you’ve been through and are still going through. 

 

In respect of your work plans, I can’t tell you what’s best for you, but I can briefly share my personal experience. 

 

I struggled a lot with emotional symptoms in my final year at University. When it came to getting a job and/or starting a career, I knew deep down that I’d be best served doing something laid back and that I could treat as a job and nothing more. Something where I could make friends and happily walk out the door as my shift ended, to totally forget about it. However, I felt a lot of pressure from parents, friends, even myself, to go out and start a good career.

 

I did just that, and I completed a graduate programme at a very large firm, whilst becoming a chartered accountant. It was gruelling and I thought about quitting hundreds of time in those 3 years. Of course, it’s had some plus points. You know the CV and the half decent pay cheques. However, I’ve had to sacrifice a lot for that achievement. Things that I wish I didn’t sacrifice, like my health and my well being. 

 

It’s natural to feel conflicted at this stage of your life, but I suggest you do what feels right for you. That way at least, you will have no regrets. 

[bheb]

13 minutes ago, eymen23 said:

Congratulations! I know it won’t feel like it at times, but that’s a huge accomplishment given what you’ve been through and are still going through. 

 

Thank you eymen! Yes, at times I wish I could've just had the college experience I see my friends having...but I've got the degree at least. 

 

And thank you for sharing your personal history; it's helpful -- I always wonder how others are keeping themselves afloat during these times. I definitely see the pros and cons to each side, the financial security is definitely a huge plus of "staying on my career track"...getting enough hours at a restaurant, on the other hand, can be unpredictable. I'm leaning towards a year off & working in a restaurant since grad school/career can actually wait a year and I won't be at a disadvantage. I feel most hopeful about my condition when I can get on my feet and escape the akathisia, and we all know hope can be a really good thing for the nervous system.

[bheb]

Think I’m having a bad reaction to melatonin. Akathisia through the roof currently, thrashing around, urge to scratch it out me. Lots of trouble lying down to sleep. Going to stay at 1mg for a couple more days to see if this is due to melatonin or not before discontinuing.

[Carmie]

Hi Bheb, 

 

I’m so sorry the akathisia has flared up. Are you still taking the melatonin? How are you doing now?

 

Sending hugs🤗

[bheb]

20 hours ago, Carmie said:

Hi Bheb, 

 

I’m so sorry the akathisia has flared up. Are you still taking the melatonin? How are you doing now?

 

Sending hugs🤗

 

Thanks Carmie. I'm still taking 1mg every night.

 

Still got constant agitation or akathisia, but that's not new. I'm not sure melatonin caused that reaction because currently I feel like I'm at the baseline I've been at the past two years. Not thrashing around so extreme as last week. 

[Carmie]

Hi Bheb, 

 

I’m glad to hear you’re back at the baseline.💚

[bheb]

Thanks Carmie.

 

A couple nights ago I started p-5-p or B6. Haven't noticed much really but will update if I see something positive. If not, I'll probably discontinue after the weekend.

[bheb]

I did in fact discontinue the p-5-p that weekend. I also discontinued melatonin Tuesday of this week and when I did so my akathisia settled a bit? Still at baseline but stopped having really awful need to pace episodes.

 

I don’t know that much about melatonin but I’m now feeling like I maybe stopped too fast if that’s possible with it? I’ve had some weird new symptoms the past couple of days...heartbeat feels intense and accelerated (almost caffeinated?), headaches and waking a lot regardless of akathisia levels. Usually insomnia directly related to how intense the akathisia is, but now I feel kind of more “wired” in general if that makes sense.

 

Also had a bad pacing episode of akathisia today which I hadn’t had since Tuesday. Not sure if this is just regular variation 

[bheb]

Went back into health records to see that I was also taking Prilosec (omeprazole) at the time of the akathisia onset in December 2016. I stopped that too soon after along with the Prozac; just feel so stuck and don't understand why things didn't improve when I did so. I guess that Prozac updose of 5mg just was incredibly hard on my system after all those med changes in 2016.  

[bheb]

Feeling more settled outside in the sun with a cup of green tea (I've got to have caffeine for a final paper due). 

[Carmie]

12 hours ago, bheb said:

Feeling more settled outside in the sun with a cup of green tea (I've got to have caffeine for a final paper due). 

 

Glad you had some time feeling settled bheb, 

 

It’s a great feeling, isn’t it? I’m sorry you suffer from akathisia so much, I only have a bit here and there at the moment. Since my last drop a couple of weeks ago I’ve had it twice. 

 

Wishing you more days of feeling settled.💚

 

 

[Rosetta]

HI Bheb,. 

Im glad you are feeling better.  Good luck with your paper. -R

[bheb]

Thank you both! It's a brief, brief moment, but always welcome and uplifting.

[eymen23]

7 minutes ago, bheb said:

Thank you both! It's a brief, brief moment, but always welcome and uplifting.

 

Absolutely. I said to Chessie last night that a window or a reduction in symptoms, is as welcomed as a cold glass of water on a very hot day. 

 

Let’s hope it continues. 

[bheb]

Yes, me too. I’m not being too good to my body right now so I’m adjusting my expectations accordingly ...stress and caffeine to get through my last semester. I’m hoping things will really improve in my year off.

 

I was reflecting on whether I’ve experience any sensation like this before in my life before drugs and it occurs to me that I have. Very very briefly though and not even close to this severity.

 

I used to get really excited in conversation at times, kind of on the edge of my seat and it was something like an inner tension and restlessness. But I would always “come down.” What I have now (agitation, tension, restlessness, akathisia) is kind of like being wound up but getting stuck this way. Whereas before if I found myself “agitated” I could mentally calm myself down, but it doesn’t work so much for this. I still practice meditation occasionally for sleep, but it never really seems to dull the itchy tension; it mostly works by a function of putting me to sleep. Which is still good I know. It is very good to sleep.

 

The user NobodySpecial, I think, shared with me an acceptance technique for the choked up tension feeling (seemed to work better for that aspect of restlessness than it did for the deep itchiness); I’m going to continue to work on it and see if it helps.

[bheb]

I'm making a note to myself to eventually try cutting out my mouth sore supplements, lysine (for cold sores and acne) and methylfolate (for canker sores) and see if akathisia lessens. I don't know what it is (well I guess I do now), but I am especially prone to canker sores. I started taking methylfolate last christmas and it was a pretty immediate change -- suddenly no canker sores (and I had been getting them almost every other week). Man, those things are painful. So I was so relieved to be able to eat and talk normally with the folate supplementation (causes of canker sores aren't clear but there's speculation about nutritional deficiencies).

 

As for the lysine, I haven't had a cold sore since I started it...maybe a year ago. It also works to keep my acne at bay somehow. 

 

I actually experimented recently and stopped taking folate for two days...in two days I already had my first canker sore in four months. So I can pretty safely say that my canker sores are caused by folate deficiency. I didn't take good notes about whether it lessened akathisia, nor did I stop long enough to get a good sense anyway. I need to be able to speak though lol (mine always end up super massive and painful) until I graduate, so I'm hopping back on the folate. In summer I'll try toughing it out though to see.

[bheb]

I’d also like to recommend an app to anyone who might see my posts. Someone else here or in akathisia support group recommended Daylio. I use this to track my symptom patterns as it automatically will attach time. I changed the labels (that are usually happy to sad) to be degrees of akathisia (severe/awful to manageable). There’s a description space for each entry that I use to mark what I’ve eaten or what med/supplement I’ve taken. It also gives you a rough graph for every month and you can get an idea of days and weeks that have been worse than others. 

[bheb]

I want to note another symptom I have because I realize I haven’t mentioned it. I get twitching in my face. Mostly around my mouth. It doesn’t bother me at all, but not sure if it’s important to track. I definitely didn’t have this in the early days, but I have no idea when it started since I pay little attention to it.

[bheb]

Today was very strange. I had the worst five minutes of akathisia I think I've ever experienced. It was like the voltage turned up way high and like the itchy acidic electricity sensation was literally going to burst from the seams of my skin. Some SI. Holy heck. It passed though. I can't imagine living with that degree of akathisia constantly.

 

And then, now. I feel calm. Much calmer than I ever get. Dare I say a window. This is becoming quite a rollercoaster, but I'm taking the rapid cycling as a good sign. 

[eymen23]

@bheb

 

This is a very common pattern for me too. Although I don’t experience akathisia, I may have a symptom such as increased anxiety for 2-3 days and then suddenly it will ramp up for 20-30 minutes to the point of being almost intolerable, and then completely back off for several days. 

 

It sounds like you’re experiencing the ‘windows and waves’ pattern we frequently refer to here. I hope it starts to become a more regular occurance for you (the calm windows). 

[bheb]

2 minutes ago, eymen23 said:

I may have a symptom such as increased anxiety for 2-3 days and then suddenly it will ramp up for 20-30 minutes to the point of being almost intolerable, and then completely back off for several days. 

 

Yes, this is exactly what happened. Except on a smaller scale, in minutes and hours. Thanks, yeah I hope it starts to extend into days. 

[eymen23]

1 minute ago, bheb said:

 Thanks, yeah I hope it starts to extend into days. 

 

Slowly but surely. This process can be frustratingly slow and gradual, but it is all steps in the right direction. 

[wantrelief]

2 hours ago, bheb said:

Much calmer than I ever get. Dare I say a window

This sounds like some deeper healing is happening, bheb!  

[bheb]

Thanks for dropping by WR. I also slept well too, without the aid of melatonin or anything. Just put on yoga nidra/meditation and slept for 7 hours. 

 

The itchiness/agitation definitely came back to baseline strength, but I was able to intervene with meditation and fall asleep before it got too unbearable. 

[bheb]

Very strange, the day I had that break I had also had caffeine. I haven't had any caffeine the past few days now and akathisia is back up to extreme levels.

 

I know it's best to avoid caffeine so I'm off it again, since I finished what I needed to. 

[eymen23]

20 minutes ago, bheb said:

I know it's best to avoid caffeine so I'm off it again, since I finished what I needed to. 

 

Even though it is best to avoid caffeine, stopping it can actually ramp up symptoms in my experience. Although it is a very mild withdrawal compared to SSRI’s or benzos, it does still disturb the nervous system. I have found that when stopping coffee, I sleep worse and feel much more sad/tearful.

[bheb]

I see, that's a very good point. So it may be best to just ease off it?

[eymen23]

I would suggest slowly tapering it down. I tend to drop about 25% of the max daily dose every 3-7 days and it works quite nicely to limit any withdrawal symptoms. 

Edited April 7, 2019 by eymen23

[bheb]

Okay. I didn't drink it regularly for too long, so I think that guideline should work.

[bheb]

Some new patterns.

 

Fatigued, sleeping decently. Very very hungry at times. 

 

Still agitated, but there is less “itchiness.” It is more of a painful tension, as pug described: “insides clamped up.” I’ve had both variations all throughout but the itchiness had been the most prominent the past year, and probably past two years. 

 

Cant say I feel good at all but this change (even to another kind of “awful”) is giving me hope.

[bheb]

Today seems to mark a transition back to usual itchiness. I noticed myself fidgeting more. Felt the itchiness bubbling, and suddenly it increased with a squeezing tension, almost explosive. Had to jolt from my seat.

 

As a side note, I always find it tricky to navigate how much I should stay integrated with the world. I do what I have to, but I have no desire to do “fun” things simply because nothing is fun in this state.  I usually find it best to isolate so that I am not putting extra stress on myself to pretend and smile through it.

 

But it also seems that isolation, and with it, a loss of purpose, can take a toll on one’s mental state, perhaps affecting one’s ability to heal from even more physical symptoms.

 

This isn’t really one coherent thought or question. Just a reflection — in two years, I still haven’t mastered being unwell like this. I haven’t figured out how to return to the world without feeling completely out of place and overlooked (the shock in my friends’ voices when I say no, the reason I’m not going to grad school is because the akathisia and agitation is too much. I’m not taking time off to “find myself” or travel). But I guess there is no mastering this. Only coping.

 

Sometimes, it really strikes me how much my world experience is funneled through a primary state of agitation. I have to work really hard, as well all do, to think about anything else. And not, when can I release the itchy tension, when I can I move, etc. 

 

There was one moment, and hour or so,  a couple weeks ago where I felt like I was simply existing. The agitation released me for a minute to breathe and actually witness the world. Hanging on for more of those tiny moments.

[bheb]

Don't know about anyone else but the pollen where I live has been really whack. I mean, phone screen covered in yellow dust just moments after stepping outside. 

 

Very hard but trying to resist the use of any antihistamines since I'm never sure how they affect me. I'm also wondering if allergies themselves have any effect on symptoms. 

 

I had been on Zyrtec since I was maybe five years old. Quit it about five months after the akathisia started, and I've been faring okay without it except for when my town turns into a pollen bowl. Should be over soon though. 

 

Edit: Oh, and I just saw the dumbest positivity mantra of sorts circulating on the web. Meant to be supportive re: mental health: "If you can't make your own serotonin, store-bought is fine." Christ. People out here really believing their brains don't make any serotonin? Yes we should break down mental health stigma, yes we should normalize it etc. etc...but a gross oversimplification of brain chemistry? This ain't it. 

[Carmie]

What a silly positivity quote Bheb,

 

I’m with you there!🙄 I’m sure whoever wrote that has never been through withdrawals. I’m so sorry that you continue to suffer from akathisia. I still get it here and there. As long as I don’t taper too quickly ( I’m doing under 4% now) I can manage the akathisia okay. I t isn’t there all the time, and I can keep the intensity lower. If I taper too quickly I feel like I’m being electrocuted. You would know exactly what I’m talking about. 

 

Intothewoods has had chronic akathisia for a long time now, she’s bunkered down in survival mode a lot of the time. I feel so much for anyone who has it chronically as I’ve definitely been there, and I don’t think there is anything worse. I had it chronically, day in and day out, but it did eventually go away. I don’t know how, as that part of my life is all a big blur. I was put on and off so many meds. I don’t even remember what all the meds were. 

 

Here’s to totally being free from all symptoms one of these days.

 

Sending hugs to you, you brave warrior🤗

[bheb]

10 hours ago, Carmie said:

Intothewoods has had chronic akathisia for a long time now, she’s bunkered down in survival mode a lot of the time. I feel so much for anyone who has it chronically as I’ve definitely been there, and I don’t think there is anything worse. I had it chronically, day in and day out, but it did eventually go away. I don’t know how, as that part of my life is all a big blur. I was put on and off so many meds. I don’t even remember what all the meds were. 

 

Thanks, I’ll go over and follow their thread. Yes it’s truly the hardest thing I’ve ever had to cope with. Akathisia even for a second is too much. I’m so glad you are free from it chronically and that you can keep it at bay through careful tapering.

 

I hope one day I’ll say the same .. no idea when or how it went but it’s gone .. I get quite obsessive trying to track it and soothe it but I need to realize it’s a beast of its own that will leave when it wants (so long as I don’t do anything stupid drug wise).

 

Also glad to hear you had a nice time at the wedding but sorry your CFS is flaring up. 

[bheb]

Posting my daily patterns here because a doctor asked me if I noticed a pattern and I said no. I take notes every day and I never see correlation with specific things I eat, or specific times of the day it's worse. I feel like there has to be a pattern?

 

(average is in comparison to awful which is the highest level for me, needing to pace)

4/17

9:30am awful inner itchiness, have oatmeal

12pm awful inner itchiness driving

4pm chicken and green beans, average akathisia (down from awful), oolong milk tea

6PM still average level tension, less itchiness

7pm klonopin

11pm choked up tension increases, but still no more itchiness

1am very fatigued, sleep

 

4/18

9:30 AM sleep well, wake up and can pause a moment

10:30am inner itchiness felt on the way to class

12:30 half chicken salad sandwich, few sweet potato fries/some anxiety about other stuff, akathisia still at average level 

4pm tension in class and some itchiness walking home, oolong tea

5pm leftover lunch

7pm klonopin

akathisia at average level all day

 

4/19

9:30 am wake up itchy

10 tuna salad sandwich with kale

2pm half caf coffee, drank 2/3 cup (weaning off)

4pm cookies 

5 i almost forget about akathisia as I get sucked into my computer, there's itchiness close to the surface but i can focus on other things

5:30 need to peel skin off awful itchiness

7pm klonopin dose/tension

8:30 pm at desk urge to bounce leg, itchiness and uneasiness

9pm feels like it's speeding up, itchiness growing more intense

10:30 pm very sleepy but itchiness remains, have a cookie, fall asleep

 

4/20

9am lay in bed for an hour after waking. Itchiness quite low (this is very common for mornings, I often wake  up feeling semi normal then it sets in later... but this time I was able to lay there even longer)

11:30 tuna salad sandwich and kale

1pm try to sit in coffee shop, able to sit but have average burning itchiness and tension, order black tea with lots of milk

6pm chicken and brussel sprouts and half sweet potato and cookie, itchiness is mild, mood low

7pm klonopin dose

8pm get emotionally upset about other stuff, average inner itchiness increases and my tolerance for it seems to go down

9:30 chickpea pasta and butternut squash, average akathisia

10pm speeds up, awful itchiness

10:15 have some version of rice krispie treat, itchiness settles a little back down to average levels

12am average burning itchiness close to surface, fall asleep

 

It's no lie that I use sugar to cope. I've reduced my consumption somewhat but this is still bad I know. It's quite hard because I use eating to distract from the agitation sometimes.

 

The caffeine too. I'm going to be completely weaned off right after graduation. It seems to have a weird effect if any. It doesn't seem to immediately bother me (unless I really over do it) but maybe shows signs of increasing symptoms later in the day as it wears off?

 

Can anyone notice anything else I should change/be aware of?

 

 

 

[herod]

How is your memory, concentration, etc.?