bheb: akathisia without dose change

[bheb]

Hey wantrelief. Thanks for checking in. Unfortunately the deep itchy, agitated, unsettled feeling is pretty bad right now and I really cannot stay still. I'm not sure if it's the worst it's ever been...hard for me to compare my notes. But it's pretty agonizing so I just stay as active as possible. 

 

I see you've updated your thread some. Hopefully I'll catch a break here soon and be able to read up. Until then, hope you get some relief.

[wantrelief]

Hi Bheb - It is good to hear from you but I am sorry to hear you are not in a good place at the moment.  What you are experiencing sounds really uncomfortable.  Have you had any breaks from your symptoms or have they been fairly consistent?  You are one strong woman, Bheb!!

[bheb]

Thank you thank you wantrelief. I really appreciate your presence on these forums!

 

Things are pretty constant unfortunately. At least the level of distress is pretty high, even if it manifests differently. I've got two main states:

1) Choked up/acidic-feeling chest tension, sometimes in my throat/neck too.  Vague uneasiness that makes me feel "keyed up" but not exactly panicky. 

2) Deep itchiness in my bones. Ranges from mild tickly to unbearably uncomfortable (usually the latter). This is what prompts me to pace/writhe around/scratch. I'm pretty sure this part is akathisia.

 

I'm in state 1 most of the time. 2 is usually much worse, but when that happens I don't feel the symptoms from state 1. I'm not sure if they actually go away or if worse symptoms "overpower" them in a way." But yeah, no breaks recently. I had a couple in November (for only a couple hours each), but not since then. 

 

I've got other symptoms like dizziness, pressure between my eyes, an inner vibrating feeling, and tinnitus. I get breaks from all of those and they really aren't bad in comparison to the agitating ones. 

 

Oh and I forgot. The terror. That was by far the worst symptom I've ever had. It came on late after all the other ones, but has been the first to leave. I'm thankful. 

 

[wantrelief]

Hi Bheb,

 

Thank you so much for your kind words and for your post on my thread.  I really appreciate your support.

 

I am SO sorry about the symptoms you are experiencing and that they are pretty constant.....that sounds really miserable.  I am hopeful that if the terror symptom left, the others will follow in time.  It just sounds really challenging to deal with in the meantime and I know how hard it is when you haven't really had a real break.  I know I said this in my last post, but you are so strong for pushing through these terrible symptoms everyday.  I so hope you get a break soon, Bheb.  

 

Thinking about you,

Michele

 

 

 

 

 

 

[bheb]

On 1/21/2018 at 7:33 PM, wantrelief said:

I know I said this in my last post, but you are so strong for pushing through these terrible symptoms everyday.  I so hope you get a break soon, Bheb.

 

Thanks Michele. Actually had a decent break today.

 

Feeling positive and empowered recently, even before I had a break of symptoms. Motivated. But also kind of strange in this break -- a tiny bit dysphoric and anxious...like a milder form of the terror. I am okay with this as long as it doesn't escalate. Trying to build up some tools to self-soothe. So far, diffusing lavender oil and using magnesium lotion. This is so strange for me since, in the past, my anxiety was purely related to whether I thought I was going to die or not (typical panic attack stuff). This feels unrelated to anything. 

 

I may start some fish oil and/or NAC soon since I've heard they can help with the terror, and mental symptoms in general. Would love some advice for dealing with these vague feelings of not feeling right in my body.

[wantrelief]

1 hour ago, bheb said:

 

Thanks Michele. Actually had a decent break today.

 

Feeling positive and empowered recently, even before I had a break of symptoms. Motivated. But also kind of strange in this break -- a tiny bit dysphoric and anxious...like a milder form of the terror. I am okay with this as long as it doesn't escalate. Trying to build up some tools to self-soothe. So far, diffusing lavender oil and using magnesium lotion. This is so strange for me since, in the past, my anxiety was purely related to whether I thought I was going to die or not (typical panic attack stuff). This feels unrelated to anything. 

 

I may start some fish oil and/or NAC soon since I've heard they can help with the terror, and mental symptoms in general. Would love some advice for dealing with these vague feelings of not feeling right in my body.

Oh this is great news, Bheb - I am so glad you got a much deserved break today.  And how wonderful you are feeling positive, empowered and motivated...tell me how to get some of that!  

 

The only thing I've found useful for the not feeling right in my body (and mind) feeling is mindfulness, like feeling my hands on the steering wheel of the car, or my feet on the ground....stuff like that.  Hopefully others will have some ideas.  

 

I hope tomorrow is another good one for you.

 

[Downbutnotout]

23 hours ago, wantrelief said:

Oh this is great news, Bheb - I am so glad you got a much deserved break today.  And how wonderful you are feeling positive, empowered and motivated...tell me how to get some of that!  

 

The only thing I've found useful for the not feeling right in my body (and mind) feeling is mindfulness, like feeling my hands on the steering wheel of the car, or my feet on the ground....stuff like that.  Hopefully others will have some ideas.  

 

I hope tomorrow is another good one for you.

 

Whoops wrong thread. Hi want relief. 

[Downbutnotout]

On 2/6/2018 at 9:27 PM, bheb said:

 

Thanks Michele. Actually had a decent break today.

 

Feeling positive and empowered recently, even before I had a break of symptoms. Motivated. But also kind of strange in this break -- a tiny bit dysphoric and anxious...like a milder form of the terror. I am okay with this as long as it doesn't escalate. Trying to build up some tools to self-soothe. So far, diffusing lavender oil and using magnesium lotion. This is so strange for me since, in the past, my anxiety was purely related to whether I thought I was going to die or not (typical panic attack stuff). This feels unrelated to anything. 

 

I may start some fish oil and/or NAC soon since I've heard they can help with the terror, and mental symptoms in general. Would love some advice for dealing with these vague feelings of not feeling right in my body.

Oh my. Another kind brave soul fighting against terrible symptoms. Anxiety and depression are a walk in the park compared to this. I’m sincerely glad your feeling better. I was going to try diffusing some oils. Does it really work? 

[bheb]

9 hours ago, Downbutnotout said:

Oh my. Another kind brave soul fighting against terrible symptoms. Anxiety and depression are a walk in the park compared to this. I’m sincerely glad your feeling better. I was going to try diffusing some oils. Does it really work? 

 

Yes fingers crossed it sticks -- nothing in life prepares you for that strange, intense agitation. At least not personally; just had to keep as active as possible to pass the days quickly. 

 

About the oils, I'm not really sure! At the very least it could be a good ritual of distraction; if you do it enough, your body might come to subconsciously associate lavender with bed time and begin to relax on its own. I think that's how it's helping me. 

[bheb]

Got a new strange symptom. I believe it's what people call burning mouth/tongue on here. There's one spot on my tongue that burns/tastes bitter/acidic no matter what I'm eating. 

 

I had an acupuncture session months ago that caused numbness on my left side that resolved, but came back a couple days ago as well. Mostly in my face, left arm and hand (the vein in my left palm bulges and hurts as well). I wonder if this burning tongue is related to return of numbness. I did exercise more rigorously recently, and the weather has gotten warmer. Those are the only triggers I've been able to pinpoint in my journal.

[bheb]

Recently I've been able to tolerate the deep itchiness agitation if I'm sitting up, but lying down is still very uncomfortable.

 

Allergies are bad right now so I wonder how that interacts. When I first had agitated/akathisia-like symptoms I was taking zyrtec and doxylamine. I wonder if those had any part in stressing my nervous system and setting myself up for sensitivities.. 

[bheb]

Struggling quite a bit recently. Deep itchiness in my bones makes me want to walk and run around but if I do too much it backfires. 

 

Really wish i could exercise more with this and that's what most people in my life advise me to do. But I really do think it revs up my symptoms.

[wantrelief]

9 hours ago, bheb said:

Struggling quite a bit recently. Deep itchiness in my bones makes me want to walk and run around but if I do too much it backfires. 

I am saddened to read this update, bheb...the last time we were in touch it sounded like you were feeling better.  It is hopeful that your symptoms did get better there for awhile so they will again - I hope soon!  I am thinking about you - WR

[bheb]

Hey WR, thanks so much for that. Yeah this setback is really bumming me out, to put it simply. 

 

How have you been this week? Anything new going on?

[wantrelief]

2 hours ago, bheb said:

Hey WR, thanks so much for that. Yeah this setback is really bumming me out, to put it simply. 

 

How have you been this week? Anything new going on?

Very understandable you are bummed by this setback, it must be beyond frustrating after experiencing improvements.  Hang in there, bheb....better days will come.

 

Thank you for asking about how I've been, that is very sweet.  Nothing new with me....I am the same. I just made another cut so will have to see how it plays out but hopefully will go ok.

[Carmie]

I was just reading some of your post. Last year I had burning mouth syndrome and thought it would last forever. I didn’t realize it was withdrawals. It did go away after a month or more. This year I got ear pain and tooth pain n thought I had infections but didn’t. Boy, we get all sort of weird symptoms. We just have to keep remembering they are withdrawals and will subside eventually. 

 

Im so sorry you are going what you’re going through. I’m sorry you have deep itchiness now, I hope it subsides soon

[bheb]

Yeah those are strange symptoms -- the burning mouth has already left thankfully. 

 

Thanks for your post. I'm sorry to read on your thread that you also have bouts of akathisia. It seems like a good sign that yours pops up only with tapers, so hopefully it settles soon

 

and thanks wantrelief -- I'm holding tight 

[bheb]

Should I taper the Prozac? It's difficult because I never seemed to reach any sort of stability with the reinstatement.

 

I can't figure out whether my body wants more or less Prozac

[Rosetta]

HI Bheb, 

I'm sorry you are struggling.  I expect the Mods advice to be to continue holding, but I'm not sure.  I hope your symptoms lessen soon, of course.  Have you had any Windows?

[bheb]

On 4/18/2018 at 3:22 PM, Rosetta said:

HI Bheb, 

I'm sorry you are struggling.  I expect the Mods advice to be to continue holding, but I'm not sure.  I hope your symptoms lessen soon, of course.  Have you had any Windows?

 

Hey Rosetta. Thanks so much for stopping by.

 

Yes I automatically assume holding is better, but my reinstatement was so late and didn't have a clear effect so I wonder if it's not doing anything. My problems started when I first began changing the dose from the original 20mg. There certainly was and is withdrawal but there's also some hypersensitive reactions to updosing in my history. Particularly the worst of it started a month after I increased 5mg after a previous decrease. Not sure exactly what that all means for my current reinstatement.

 

I haven't gotten a window in a while, but I have had them. One in August (before reinstatement) and one in February (after reinstatement). 

 

 

 

[bheb]

Trying to pinpoint why I had a break in February but then shortly after had a huge setback.

 

Right now I have canker sores and acne break outs (in my early 20s) -- I wonder if there's some kind of general stress to my body (hormonal, allergies, nutritional deficiency, etc.) that is worsening thing for me.

 

I had quit Zyrtec (antihistamine) a while ago because I wasn't sure what drugs were causing my agitation at the time. I may reintroduce it (for allergies) to see if it helps. I'm a little hesitant because I tried benadryl for akathisia and it only made me drowsy and increased my need to pace

 

--

Note to myself: severe tension that is almost painful today, really hard to stay still (was able to in the past) even if I can sit up and bounce my leg, itchy irritated feeling deep in my bones

[bheb]

Actually, I will probably try some other ways of managing allergies before I introduce a drug that affects CNS (as I think zyrtec does?). Maybe neti pots or Quercetin.

 

I also mentioned on my benzo thread about how I have low progesterone (basically 0) for my age. Shep mentioned that these drugs and withdrawal can cause hormonal issues. So I didn't really want to take progesterone and just add more supplement/medication as a bandaid on top of a drug issue. 

 

However, I still wonder whether there are things to be fixed in my general health that can make recovery from Prozac a little easier.  There's no way to know if I had low progesterone before since I had the blood test after this all started.

 

Like the allergies, perhaps I can manage these stresses more "naturally" and see if it has a trickle down effect on my drug wd/reactions. I've read that spearmint tea can help balance hormones. May give it a try.

--

On my agenda: look more into alternative treatments of allergies and hormonal issues. Find types of exercise that don't exacerbate the agitation. 

 

 

[bheb]

I sometimes wonder why I only have one main symptom from this whole mess (variations of restlessness, agitation and akathisia). I had mental terror last fall, but that's about it. Does anyone else have a similar experience?

 

This is one reason it's been so hard to see how my body reacts to reinstatements and tapers. When I cold turkeyed the Prozac the first time I did notice head pressure and headaches immediately (which should have informed me to go back on). And the terror creeped up maybe a month or so after rapid benzo taper. Still holding on that dose and the terror is much improved. But this itchy, restless feeling deep in my bones has been so consistent and confusing. So as far as how Prozac has been affecting me recently, I just can't tell. Will continue to hold because there's nothing to lose by giving my brain more stability. 

[bheb]

Interesting/maybe positive note:

 

Today I found that I could sit still with great ease and comfort for a couple hours. However, this meant literally just sitting down, not lying down. Able to do lots of reading at my desk. What's weird is that the moment I prop my legs up, or lie down in bed the deep itchy restless feeling appears and accelerates (with respect to how long I'm laying down).

 

Any thoughts on why this may be?

 

Even if I don't figure out why, it seems the key will be avoiding lying down until I am absolutely sure I will knock out. Keeps me from having to endure the worse of agitation for too long.

[Carmie]

4 minutes ago, bheb said:

Interesting/maybe positive note:

 

Today I found that I could sit still with great ease and comfort for a couple hours. However, this meant literally just sitting down, not lying down. Able to do lots of reading at my desk. What's weird is that the moment I prop my legs up, or lie down in bed the deep itchy restless feeling appears and accelerates (with respect to how long I'm laying down).

 

Any thoughts on why this may be?

 

Even if I don't figure out why, it seems the key will be avoiding lying down until I am absolutely sure I will knock out. Keeps me from having to endure the worse of agitation for too long.

 

Hi bheb, 

 

I don’t know the answer to your question but i just wanted to say I’m so glad you got a bit of relief today.

 

Akathisia is a horrible symptom and it made me happy to see you got a bit of relief from it. 

 

Sending hugs🤗

[bheb]

1 minute ago, Carmie said:

 

Hi bheb, 

 

I don’t know the answer to your question but i just wanted to say I’m so glad you got a bit of relief today.

 

Akathisia is a horrible symptom and it made me happy to see you got a bit of relief from it. 

 

Sending hugs🤗

 

Thank you! Yes, that relief seemed like a miracle! Gosh, I almost forgot what it felt like to be comfortably still. A luxury I always took for granted!

 

Just checked in on your thread -- I'm sorry you had rough night, but glad your wave is letting up a bit right now. And that you've got a positive cap on! I relate to that so much...when you're in the thick of it your mood can really take a toll. But I felt so grateful and immediately happy when I had this bit of relief...I almost cried from joy and started dancing around the house. It's wild how much your outlook/mood improves when physical discomfort eases up a bit. 

 

[wantrelief]

38 minutes ago, bheb said:

Interesting/maybe positive note:

 

Today I found that I could sit still with great ease and comfort for a couple hours. However, this meant literally just sitting down, not lying down. Able to do lots of reading at my desk. What's weird is that the moment I prop my legs up, or lie down in bed the deep itchy restless feeling appears and accelerates (with respect to how long I'm laying down).

 

Any thoughts on why this may be?

 

Even if I don't figure out why, it seems the key will be avoiding lying down until I am absolutely sure I will knock out. Keeps me from having to endure the worse of agitation for too long.

Oh this is great news, bheb!!  I am so happy for you!  I don't understand why the restlessness occurs when your legs are propped up or with lying down but not sitting up.  I am just so glad you were able to experience sitting in comfort, that must have been pure joy after everything you have been through.

[bheb]

11 minutes ago, wantrelief said:

Oh this is great news, bheb!!  I am so happy for you!  I don't understand why the restlessness occurs when your legs are propped up or with lying down but not sitting up.  I am just so glad you were able to experience sitting in comfort, that must have been pure joy after everything you have been through.

 

Thank you WR!! How was your day?

[bheb]

MRI Question:

 

So I'm still having numbness/pins and needles from an unfortunate acupuncture session I had a few months ago. Saw a neurologist who thought it was probably nothing too bad but still wanted me to get a MRI. I was considering ditching the MRI, but numbness continues to persist and spread, so I think it's probably wise.

 

With that said, is there anything withdrawal-concerned, I should be careful about? I've heard things about dyes for fMRIs but wasn't sure.

 

Has anyone here had a MRI or fMRI whilst their CNS was in this sensitive state?

[Rosetta]

LexAnger had a problem with an MRI.  I had an MRI after I started getting pins and needles.  I don't know if it made WD worse or not.  WD got much worse for me afterward, but I don't know if that was because of the MRI.  I would definitely avoid drinking any contrast liquid.  I was not offered any myself.

 

Edit:. She posted just today.  So, it will be easy to find her thread.  I think she had the fairly MRI recently, too

[bheb]

1 hour ago, Rosetta said:

LexAnger had a problem with an MRI.  I had an MRI after I started getting pins and needles.  I don't know if it made WD worse or not.  WD got much worse for me afterward, but I don't know if that was because of the MRI.  I would definitely avoid drinking any contrast liquid.  I was not offered any myself.

 

Edit:. She posted just today.  So, it will be easy to find her thread.  I think she had the fairly MRI recently, too

 

Gotcha, thanks for letting me know. Was your pins and needles WD related?

[Rosetta]

43 minutes ago, bheb said:

 

Gotcha, thanks for letting me know. Was your pins and needles WD related?

 

Oh, yes.  At the time I had the MRI I didn't know I was suffering from WD.  It's almost gone unless I do something to aggravate it -- like read or write.

[Carmie]

On 5/4/2018 at 2:31 PM, bheb said:

 

Thank you! Yes, that relief seemed like a miracle! Gosh, I almost forgot what it felt like to be comfortably still. A luxury I always took for granted!

 

Just checked in on your thread -- I'm sorry you had rough night, but glad your wave is letting up a bit right now. And that you've got a positive cap on! I relate to that so much...when you're in the thick of it your mood can really take a toll. But I felt so grateful and immediately happy when I had this bit of relief...I almost cried from joy and started dancing around the house. It's wild how much your outlook/mood improves when physical discomfort eases up a bit. 

 

 

Thank you for your kind words bheb, 

 

I’m finally recovering slowly from my last taper two months ago. Yes, I’m with you there, you do want to dance around the room.

 

What do you reckon, do you think we need to crank up Funky Town by Pseudo Echo and dance around our loungeroom every time we get some windows😄. Actually I danced to funky town on Saturday at a bbq. I’ve seen Pseudo Echo in concert twice. Love my concerts and music. 

 

Here’s to many more windows in our recovery.

 

Sending hugs🤗

[bheb]

15 hours ago, Carmie said:

 

Thank you for your kind words bheb, 

 

I’m finally recovering slowly from my last taper two months ago. Yes, I’m with you there, you do want to dance around the room.

 

What do you reckon, do you think we need to crank up Funky Town by Pseudo Echo and dance around our loungeroom every time we get some windows😄. Actually I danced to funky town on Saturday at a bbq. I’ve seen Pseudo Echo in concert twice. Love my concerts and music. 

 

Here’s to many more windows in our recovery.

 

Sending hugs🤗

 

Yes! Funky town is a JAM. 

 

I used to restrain myself and tell myself "don't celebrate, it will get worse again, don't get false hope." But I've gotten better at ignoring those negative thoughts. Who knows when things will worsen, and yes hesitation is a natural reaction when you're dealing with something unpredictable. But there's also no logic in denying myself a good mood if I can help it!

 

[bheb]

On 5/5/2018 at 10:36 PM, Rosetta said:

 

Oh, yes.  At the time I had the MRI I didn't know I was suffering from WD.  It's almost gone unless I do something to aggravate it -- like read or write.

 

Oh I'm glad it's gone for you. Yes hmm it's probably the case that wd made me more sensitive to the acupuncture. Hopefully that means it'll ease soon, but it's not too bad anyway.

[bheb]

I'm trying to practice an acceptance technique I learned from NobodySpecial. It is very effective with chest uneasiness but doesn't seem to help too much with the deep itchiness in my bones. That sensation (what I've referred to ask akathisia)  commands me to move which adds to the distress. I'm still noticing that lying down is the worst position for it. I had that "sitting window" in which the itchiness was at bay while sitting but not lying down. I'm not sure if it was because I could bounce my legs or what.