Akathisia, inner Parkinsons, RLS

[Todd Kitten]

I’ve been trying to figure out if akathisia is the name I should give to my most troublesome symptom after reading about it in a book (The New Parkinson’s Disease Treatment Book by Eric Ahlskog). When it’s bad, I feel like I want to crawl out of my skin. Walking or other movement helps only to the extent that it distracts me. And while I would describe it as a psychological or inner discomfort rather than a physical symptom, I seem to feel it in the quads of the leg on my right (PD) side, and rubbing on that leg helps a little. (I realize that seems contradictory, but it’s hard to explain.) It responds to Sinemet, although if I want to avoid it entirely, I have to raise my dose so high that I experience dyskinesia. I have yet to talk to any PD patient who seems to share this symptom. I can’t tell if we’re experiencing the same thing or not. I haven’t tried amantadine yet for this or any other symptom.

[Leslie]

Toni Shapiro, Yes, I take amantadine for dyskinesia. I do think that is a correct diagnosis. But after reading your response I wonder if I have it too.

[Jo S.]

YES!!!!!!!!! I have actually used that term with my MDS, as I came across it a while ago. Some sources say that akathisia is a PD symptom, while others don’t acknowledge it or call it something else (such as “restlessness,” which doesn’t fully cover how truly awful this symptom is). Because akathisia is most often associated with withdrawal from psychotropic medicines, it has gotten less coverage and has been less studied than most other PD symptoms. However, if I were to list my symptoms starting with the worst one, akathisia would be at the top.

Yup, it’s like RLS on steroids. When it occurs, I just want to jump out of my skin! I sway, kick, stand and sway, and do anything I can to move and try to make it stop. Sometimes I will do jumping jacks or go up and down the stairs until my legs are ready to give out, but that doesn’t always work. It can happen during the day or even at bedtime (if it happens while I’m in bed, I’ll do bicycle pumps with my legs in the air). It can even continue while I’m sitting on the toilet to pee — my legs will kick everywhere! I’ve had RLS for many years, so I know what it’s like. Akathisia, on the other hand, is like RLS for the entire body, magnified 1,000 times.

When I tried explaining to my doc what was going on, she didn’t seem to fully understand my use of the term, which was frustrating, especially since some organizations mention it rather explicitly. She kept thinking I was talking about dyskinesias, but I’ve actually never experienced them. After dealing with this for far too long, I have finally gotten it under control. My last appointment (telehealth) resulted in an adjustment of my meds that did the trick. Since I was able to narrow down the general time of day when it happens the most, she recommended adding a C/L ER to my midday dose of regular C/L. I also take a C/L ER around dinnertime and with my bedtime regular C/L. In addition, I take one at 2 a.m. each night. All of this together has helped keep it mostly at bay during the day and usually (though not always) at bedtime.

I’m relieved and encouraged that this simple adjustment has made a huge difference for me and greatly helped my quality of life. Please talk with your doc about a similar adjustment, if that’s feasible for you to do. Also, please know that you are definitely not alone with this. I totally understand what you described and empathize completely!

Oh, I also take amantadine (one cap in the morning). I believe that was added prior to the other med adjustments, though, so I’m not sure whether it has any affect on the akathisia.

[Russell Dean Boyer]

I have had similar but milder symptoms at times. It is hard to describe what I am feeling but you did a good job of putting it in words. In my case it is usually confined to the arms and I find myself kneading them, moving them, wanting to do just about anything to stop that sensation. I have even tried sticking them with a pin as a counterirritant but the problem is the pin pain doesn’t last. This almost always happens at night, as does RLS. Sleepiness seems to trigger it but that is only an impression, I haven’t tracked it closely.

In my case I have had strong side effects from amantadine and can’t take that but luckily pramipexole does the job; I just have to increase the dose.

 

 

[Kate Rodrigues]

Thank you for discussion about akathisia. Since COVID hit my Parky has accelerated with so many new symptoms. Yes it feels like I want to crawl out of my skin! I thought this was an increase in my depression and anxiety. Ending up with crying sessions. I’ll share this with my neurologist.

[Charne Sherman]

I’ve read your replies and some of the descriptions of what you refer to as Akathisia sounds like Levodopa induced Dyskinesia which I have.  I’ve tried Amantadine and Gocovri and they do work on the Dyskinesia but the side effects are so bad that I had to discontinue using them.  As far as I know, there is nothing else right now that helps except take less carbidopa/levodopa and just 1/4 pill less stops the dyskinesia but also increases the tremors.  This does appear in Dr. Ahlskog’s book as well and I’ve worked with my MDS to find the right combination but have not solved the problem.

[Jo S.]

Hi, Charne. What I experience is definitely not dyskinesia or related to dyskinesia. These are not uncontrollable movements but deliberate movements, which which those of us who experience akathisia can adjust as necessary to reduce the indescribable sensation of restlessness. There is quite a distinction between dyskinesia (which is caused by levadopa) and akathisia (which is a PD symptom). In fact, only an increase in my C/L has been able to mitigate the akathisia.

[Toni Shapiro]

Hi,

Thank you to everyone who responded to my Akathisia post. Except for the jumping jacks (way to go Jo) and the stairs, (only because I can no longer manage those kinds of movements anymore), I totally relate to Jo’s posting.  She described the symptoms perfectly and in great detail which I very much appreciate.  I agree, I want to jump out of my skin and yes, 100% my movements are purposeful and deliberate.  I will say to myself maybe if I do bicycle pumps, maybe if I stand up and hold on to something and shake my legs, maybe if I squirm and twist my body, maybe if I swing my arms for as long as I can, maybe if I sit down and pound my legs, maybe if I rock back and forth, all of these things I think of first and then execute. Like Russell it mostly happens to me at night.  This can go on for hours.  Long enough for me to worry about my sanity during the longer episodes.  Articles that call what I experience “restlessness “is so off base. I have RLS and it is not what I am talking about.  It’s like calling an ocean a puddle. Thankfully I see my neurologist in a few weeks and will discuss.

[Jo S.]

Hi, Toni. I’m very interested to hear what your neurologist tells you and advises. Best of luck, and hang in there until then! I’ll be thinking of you!

[twok]

Dear Akathisia Sufferers,

Maybe my occasional extreme restlessness is related to this syndrome????But regardless, you folks have suffered a  lot and now you know you are NOT crazy!

You are brave people!

[Toni Shapiro]

Hi Jo,

I sent you a private message.

[Deleted User]

hi all

i  think i now have akathesia.   it is almost like clockwork, about 30-90 minutes before my  3rd and 4th dosages of c/l for the day i start getting ‘ants in my pants’   does anyone have upated info to share?

 

[Toni Shapiro]

Hi Jean, It has been awhile since I have seen a post from you.  I always liked what you had to say.  I am very sorry you think you have Akathisia.  It’s a terrible feeling.  I have been mostly free from that suffering since my neurologist added two more 100/25 Levocarbs at 9pm and two 100/25 Levocarbs CR at 10:30 pm.  My Akathisia would happen at night.  The increase of the Levocarbs and taking the CR’s closer together seemed to do the trick.  I hope you can get some relief soon.

[Deleted User]

Thank you Toni for responding. I stepped down as a forum moderator as I needed to reduce my commitments.  I put a lot of pressure on myself which worked well in my career, but not so much with PD.

I hate the thought of adding meds, but maybe that is what I need.  I will talk to my neuro about what you have tried as that makes sense.  She has me on nourianz and it doesn’t seem to be helping, but may be exacerbating the situation. I had akathisia symptoms prior to nourianz, but not as pronounced or predictable or as frequent.   Could it be disease progression?  I hate the thought of that also.

[Toni Shapiro]

Hi Jean,

I really get it.  It bothered me as well to increase my medication but I would have done anything to make it go away. My Akthisia was unbearable.  I was grateful there was something to relieve it.  Thanks to Jo’s posts and her support I was able to see my way though it.

I also remember how supportive you were to me and others when you were a forum monitor.  You helped me.  Thank you.  I am happy you are giving yourself permission to lighten your load.  Happy Holidays.

Toni

[Deleted User]

Toni

I am so happy that what I said was helpful for you ..  it has always been my mission to share and be open with my life  in an effort to help others. We are not alone in battling this disease and I believe that gives us  us strength and hope.

happy holidays to u as well

[Jo S.]

Hi, Jean and Toni,

Jean, I’m so sorry you’re going through this, too, and that you needed to step down as forum moderator, although I totally get why. I’ve needed to cut back on my commitments as well, and every day I ask myself if I still feel up to working full time. If I stopped, I think I go crazy from boredom, but there comes a point when our executive skills start slipping. When mine begin to slip too far or too often, I’ll know it’s time to quit.

Toni, it’s great that your medication adjustment did the trick for your akathisia! That’s an interesting (and apparently effective!) dosing regimen at bedtime.

Jean, I understand not wanting to add more meds, but that’s the only thing that seems to help the akathisia (at least for Toni and me). My doc put me on rasagiline recently, but I hated the way I felt on it, so she said I could just stop taking it. If you don’t think the nourianz is helping or is making matters worse, perhaps it would be worth talking with your doc about stopping it and possibly increasing your C/L regular and/or ER instead. Although I still have the occasional “breakthrough” akathisia, my current med routine has made a huge difference for me. I hope you’re able to get some relief soon!

With regard to whether it’s the medication or the disease progression, who knows! It’s so strange to have a disease for which the treatment can mimic the symptoms of the disease itself, isn’t it?

Wishing you both a wonderful holiday season!

 

[Deleted User]

jo, thnx for piping in.   i need to find a new neuro.  the one i am seeing now has thrown her hands up with me and doesnt know what to do for me anymore and has referred me to a psychiatrist.  (more drugs).  she says i do well on all of her tests and she says i look good, however, i feel like crap; a lot of my issues are non motor (akathesia is a new motor one) such as fatigue, apathy, dysphagia, speech issues etc.

 

[Dave Kean]

My 80 something year old parent has Akathisia. Inbrija inhaler definitely helped for a couple years but that is losing its effect.

[Deleted User]

Dave, thnx for ur input.   As I understand it, Inbrija is used for ‘off’ time.      I am still trying to get to the bottom of my issue, to see if adjusting dose and timings of existing meds can be tweaked.  I would struggle with an inhaler and go into a coughing  fit LOL

[Gary Munson]

I just came across this forum and thread today. I have PD and akathisia in spades. The posting of Toni and Jo here are the first that I have come across in tons of internet searching that describe someone else having it as badly as I do. My current and prior neurologists at Beth Israel in Boston have both said it’s akathisia, not something else. Thank you for the postings. I have had it for many years; in the last two to three years the episodes have become hellish. Usually worst in the legs, but can run from feet to scalp. Some observations from my experience
a) It’s an actual physical discomfort.
b) A lot of continuous physical movement can relieve the discomfort when occurring, or defer its onset. That is the one saving grace in my experience.
c) It comes on after periods of physical inactivity. Maybe soon, maybe hours later. It tends to come on most frequently and severekt for me late evening or in bed (although I have given up on regular nighttime sleeping hours).
d) Muscle use sets it off, the more strenuous and non-routine the muscle use, the worse the episode will be. This is the one firm cause and effect relationship I’m observing. Not diet, not other meds, my iron-rich city water, …
e) Under doctor supervision I have tried propranolol, gabapentin and pregabalin. Even at mild doses they have so severly aggravated my other PD symptoms that I quit taking them. And the bad effects would last for weeks. I would rather try to endure episodes of torment than be in a chronic invalid condition.
f) Have self-experimented with increased Vitamin B6, magnesium, iron, CBD. At the levels I tried, no effects.
g) I am convinced through many experiences that airplane vibrations and car vibrations accelerate the onset of an episode and prolong it and worsen the sensation. Not all planes and vehicles are alike. Re airplanes, Boeing 737s are especially bad.
h) Akathisia started out as a muscular discomfort. I.e., internal. Over the last couple years it has evolved to also be a skin sensation in addition to muscles. My skin has also become much more sensitive to increased cold (air, water) and I suspect this is also an aspect of the akathisia, or at least can help set it off.
i) I have gotten some mild relief by taking dyphenhydramine (e.g., Benadryl). No bad last side effects for me. In theory it may interfere with the uptake of Carbi/Levo, but infrequent use doesn’t seem to be a problem. Takes an hour or two to kick in, and only partially helps. Won’t help at all if you’re having a bad episode while riding a 737.

I am still searching for a significantly helpful solution. Maybe, per Jo, I need to revisit increasing my C/L ER dosage. Tried that earlier to a modest extent, but didn’t help the akathisia and aggravated the tardive dyskinesia.

After horrible episodes on two recent long flights I told my wife I’m not sure I can fly any more. Literally on the edge of going berserk, and that could be a really bad scene for me, my wife, the flight attendants and other passengers.

[Toni Shapiro]

Hi Gary, Oh No…I just wrote piles of text in answer to your post. I am very appreciative of it and had lots to say. It looks like it didn’t go through on the thread and I can’t find it anywhere else YIKES!!! I will have to do it over but can’t do it righ now as it takes me a long while. Thank you for the post and I think you may find my similarities interesting once I get them in print again. Take care Toni

[Tina]

Same thing happened to me. Too much typing!

[Deleted User]

hi gary, i am shocked that there is so l ittle written about akathisia.  i believe it is associated more with antipyschotic drug side effects.  the only thing i could find online was this :  https://pubmed.ncbi.nlm.nih.gov/3822142/#:~:text=Akathisia%20is%20a%20little%2Dstudied,as%20parkinsonism%20and%20sensory%20complaints.

 

there also are some articles if you search on akathisia in scholar.google.com

my neuro is fmailiar with it.  i currently am on (1.5) 25/100 c/l at 7am, 10 am, 1pm, 4pm,7pm  (1) 25/100 c/l.  neuro added xadaago to 7am dosw and it seems to help akathisia more than selegeline and rasagaline.  Before, my c/l doses were every 4 hours and akathisia would kick in about an hour before my next c/l dose.   now, akathisia  some times  comes on 15 min-20 min before my next c/l

[Jo S.]

Hi, Gary! Welcome to the club no one wants to belong to! 🙂

I switched to Rytary a few months ago, and that seems to have helped quite a bit, as off times are far less frequent. I also started on gabapentin to help prevent breakthroughs with the akathisia (my doctor calls it “restlessness,” but you and I know it’s far worse than that). The gabapentin helps some, but, like you, if I’ve been sitting too long or if I’ve had a large meal (even though I really don’t eat very much) and the meds have trouble working their way through my gut, the akathisia can start up. It’s a shame you haven’t had any luck with any of the meds you’ve tried for this.

Physical activity helps me as well. When the akathisia starts, I often find myself running in place or up and down the stairs or doing some other type of exercise until my muscles are exhausted. The worst is when the akathisia starts at bedtime or an hour or two later. Grrrrr!!!

[Jo S.]

Oh, Gary, I forgot to address a few other things you mentioned. I, too, am extremely sensitive to cold. I find it difficult to even get undressed for a shower, as I shiver while waiting for the water to get hot, and even once I’m in the shower and the water is hot, I have to move back and forth for a very long time before my body settles down.

I don’t fly anymore — or travel more than a half hour or so in the car. The combination of restlessness and needing to find a bathroom are just too challenging.

I supplement with vitamin B12 and D and just started taking MagTein, a special type of magnesium that can get through the blood/brain barrier. It is supposed to help cognition for people with PD. I don’t know if any of these are helping, but I like to think they are. 🙂

I’m going for an MRI next week and am concerned about having to stay still for 30-45 minutes. I was prescribed a short-acting valium to help me relax and get through it. Nevertheless, wish me luck! 🙂

[Todd Kitten]

Gary and Jo,

The more I read about your symptoms, the more I think I may have the same thing. Starting this past winter, I would often have the sensation that cold wind was blowing across my lower legs, from about my ankles to mid-calves. I could be wearing pants over thermal underwear over socks inside a warm house and it wouldn’t make a difference. I had never felt anything like that. At around the same time, the skin on the underside of my legs became sensitive to touch, enough so that I bought a device that would allow me to switch my desk to a standing desk. (Now I switch it back and forth.) Does that sound familiar or no? I’ve had the akathisia or whatever it is for almost as long as I’ve known I had PD, but this cold sensation has been relatively new, so I hadn’t connected the two. The main thing they have in common is that I never find anyone else who experiences either sensation. Unlike the akathisia, I can’t tell if my C/L helps at all with it, nor have I found anything else that does.

[Jo S.]

Hi, Todd! My experience is a little different from yours. I do feel odd sensations occasionally — for example, it feels like there are cobwebs on my face or arms, or it feels like an insect is crawling up my arm. I try to swat these things away, and must look like a maniac, but there’s usually nothing there. I’m much more intolerant of the cold, but that could be because I’m incredibly thin (I’ve lost a lot of weight since my diagnosis, and I wasn’t very big to begin with), although cold has always bothered me. Although I haven’t experience what you described, I do know that PWPs can have “tactile hallucinations,” so it’s possible your experiences (and mine) fall into that category.

[Toni Shapiro]

Hi Gary,
This is my fourth attempt to answer your post. I hope it goes through. I was very interested in what you had to say about flying and how after flights your Akathisia would be much worse. I know that you read my previous posts describing how horrific my symptoms were and much like yous. I have had almost a year of being Akathisia free after my neuro increased my levo/carb. However, I started flying again recently and now my Akathisia is back in full force, leaving my nights with little to no sleep and me moving most all of myself around and round and feeling like I am losing my mind. Your post was the first time I made a connection between flying and my symptoms. Yes, I was fully aware that it was symptoms intense during the actual flights but didn’t realize my symptoms would continue after. Thank you for your post. Like you I have physical and mental pain,have tried everything from diet to vitamins to new medications, and most of the rest. I also have skin issues with the cold as well as having the creepy crawlies all over my body. You mentioned Benadryl. I realized that during the time I was not flying I was taking antihistamine. I stopped it about the time I started flying again. I have a neuro appointment next month and will ask about increasing my levo/carb, as much as I hate to do it I am desperate. One bit of relief I get is Ativan but I take it maybe only once a month as as to avoid dependence. All the best to you Gary. I hope you get relief soon.

[Natasha Christl]

OMG, I deal with this several times a day! I thought I was going crazy because I can’t find a doctor who can help me with this. But I know it’s from the c/l because when I was in the hospital a few months ago, I didn’t take any PD meds and it didn’t happen at all (on my last day there, I took a c/l tablet and I started thrashing again…they thought I was having a seizure). My new neuro put me on amantadine recently but that’s not helping me at all. The thrashing seems to get worse when I try to exercise and whenever I eat anything with sugar in it or when I’m super stressed. I’ve been dealing with this nightmare everyday for about a year and I really hope I can find a doctor who will help me. Thanks so much for posting this!