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Akathisia, inner Parkinsons, RLS
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Thanks for all the recent replies and additional information. There are some things for me to pursue. Some thoughts back to Toni, Jo, Todd and Natasha. Apologies for any typos, one of my special skills.
– I have been on extended release carbi/levo for close to two years, was on Rytary before that (a brand name extended release). For me personally I was finding no difference in benefit between the two (Rytary is way more expensive as you know). Being on extended release of either kind was somewhat helpful over ‘regular’ carbi/levo. Modest change in dosage, more or less, doesn’t seem to affect level or frequency of my akathisia in any case.
– I believe my skin sensitivity to cold (air, water) is part of the overall akathisia condition because it can set off the akathisia; there may be other aspects of PD that cause the skin sensitivity, too, I don’t know
– When I have an akathisia episode, my skin is also uncomfortably sensit0ive to most anything touching it, especially legs but also arms
– Natasha mentioned c/l usage bringing on symptoms; I certainly accept that, although not sure whether akathisia or something else; my neurologists (current and former) say my akathisia is a direct PD symptom, not caused by medications. I tend to believe them, although not totally convinced.
– There’s a wonderful person in my area (southeast NH) who has coordinated a PD group for around ten years. So he is familiar with many others’ PD in all its various manifestations.When I told him about my akathisia he said he had never heard of it before. On the other hand, I came across a study once that said about 30% of people with PD have it to some degree. From which I conclude it’s rather mild, except for a few of us.Keep moving, best,
Gary
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most neuros i have spoken to about akathisia have lumped the symptom with dyskinesia. the xadago seems to help, although, if i get anxious, akathisia can sometimes kick in.
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Hi, Jean,
most neuros i have spoken to about akathisia have lumped the symptom with dyskinesia. the xadago seems to help, although, if i get anxious, akathisia can sometimes kick in.
That’s the same with me with regard to anxiousness and the akathisia. My MDS also seems to think akathisia has something to do with dyskinesia, which everyone in this thread knows it doesn’t. So now, instead of calling it akathisia, I refer to it as “restlessness.” That seems to resonate more clearly with them for some reason and makes it easier for them to understand what I’m experiencing.
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Hi, Gary,
Pardon me for copying/pasting your post, but I wanted to respond to some of the things you said.
– I have been on extended release carbi/levo for close to two years, was on Rytary before that (a brand name extended release). For me personally I was finding no difference in benefit between the two (Rytary is way more expensive as you know). Being on extended release of either kind was somewhat helpful over ‘regular’ carbi/levo. Modest change in dosage, more or less, doesn’t seem to affect level or frequency of my akathisia in any case.
I’ve been on Rytary for several months now (and oh gawd is it expensive now that I’m in/out of the Medicare donut hole). It took a while to get my dosage right, but now that it is, I find it significantly better than C/L extended released because it lasts much longer in my system and my “off” periods with akathisia are fewer. They aren’t gone, though. I still get breakthrough akathisia when the meds are wearing off or haven’t kicked in yet. That makes me think the akathisia is related to the PD, not the meds. The meds only help to keep it at bay.
– I believe my skin sensitivity to cold (air, water) is part of the overall akathisia condition because it can set off the akathisia; there may be other aspects of PD that cause the skin sensitivity, too, I don’t know
I do have an extreme sensitivity to cold (weather, air, water), and the cold can definitely set off my akathisia.
– On the other hand, I came across a study once that said about 30% of people with PD have it to some degree. From which I conclude it’s rather mild, except for a few of us.
Yes, it seems that we are the chosen few. 😉 On the upside, at least we now know that we aren’t alone!
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I am one of those with this PD symptom. It is often part of my worst days. Currently writing a series of column to address this fascinating effect of PD. The series is not labeled as such because we are a news service with restraints on format. So, in such cases I divide the problem onto smaller pieces, each being a part of the whole larger problem. This is done also in the book “Possibilities with Parkinsons” and may I humbly offer it as a foundation to a better understanding not only of restlessness but also what can be done for relief. Reading it will help, I think – hard to tell since I’m the author, to clarify the upcoming columns. The column series already started with my column on seizures. Planning on ten columns, including the seizure one. I have found ways to lessen its impact, not a cure, but it requires a fresh look, a shift in perspective.
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I’ll try typing this again. I’ve had Raynaud’s disease longer than I’ve had PD symptoms, over 30 years. I was tested for cold sensitivity and it came up positive. I didn’t need a test to tell me my fingers, nose and ears turned blue in the cold. The pain is so extreme every day no matter what the temperature—I’ve always lived in the south. I’ve been on Gabapentin for the pain in my extremities from neuropathy for 6 years. Without it it’s like being hit with a hammer repeating the throbbing is so bad. I was diagnosed with small vessel disease 5 years ago and been on seizure meds for 5 types of excruciating headaches and seizures. I was finally diagnosed 3 years with PD and MG for both kinds of tremors I’ve had for over 30 years. It just takes the right doctor. I have these phantom insects on my legs and also auditory and visual hallucinations when my meds get off because I don’t take them on time, don’t eat, lack of sleep or get upset etc. I only take Ropinerole for PD now because it seems to control symptoms. My point is that it’s either a nerve or blood vessel thing going on with the brain miscommunication in PD. Taking something that will deal with neuropathy and/or problems with constricting blood vessels may help in addition to PD meds. It’s helped me. Another thing I’ve noticed is when I don’t get enough fluids the leg “insects” start their thing again. It’s really hard to ignore them as it gets maddening and I figure if it becomes a daily problem I’ll have to complain to my neuro. But so far controlling everything else I’ve mentioned along with taking the meds on time has worked
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Everyone talks about cold intolerance. I have cold intolerance but also heat tolerance. Does anyone have both? The heat intolerance is probably because i don’t sweat any longer.
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Hi Margie,
My sensitivity is cold (and touch) and not heat. Of if I do have a sensitivy to heat as well, then it so mild it doens’t really regisiter given all my other sensations.
Some updates from me for other readers as well. I am still experiencing daily/nightly periods of extreme physical discomfort – nothing has changed there.
a) I tried lorazepam late last year to see if it would help lessen the discomfort/so-called akathisia. Answer: No. It, like three other meds I had tried earlier all had neglibile effect in improvement and bad side effects of worsening other typical PD symptoms such as balance, fine motor skill, muscle strength.
b) I am currently on an explore to see whether acupunture will aleviate the discomfort. So, I am seeing a holistic Chinese medicine doctor while taking my PD meds per my neurologits. With the Chinies medicine doctor, the first order of business what to generally examine me, and address things that appeared weak. So I am on a no-gluten, no sugar, no dairy, no fresh vegteables or fruit diet for a while and taking some supplements that are intended to be Yin and Yang-affecting. Also three treatmments of acupuncture so, out of a series of 12. The change in diet has improved my constipation situation and has let me sleep just a little longer in any given 24 hour cycle, and I feel like I have a bit more energy. So far I’m not feeling any added benefit from the acupuncture.
c) I still queston whether what I have is akathisia, because the only clear cause/effect is muscle use, the only way I can alleviate it is muscle use (a Catch-22), it involves both muscle and skin discomfort (orignally just muscle), and the skin sensitivty is to both touch and cold (e.g., air or water). Severity of muscle use translates to severity of the discomfort. Some vibrations aggravate the sensations.
d) Talking with my youngest brother just yesterday he told me has had a very similar feeling of sensation for years. It is fairly low level, but he still needs to be able to move to keep it from being a torment. But in his case the level never changes (no discernable cause/effect) and it is exclusively on his left side! And he has also found nothing to alleviate it other than moving around. So do he and I have fundamentally the same thing? I have no idea. He does not have PD.
Best,
Gary
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Hi folks,
New to this forum. PD for six years. Left side is my PD side. DBS a year ago. Rytary for the last year or year-and-a-half 95 mg dose; three hours apart and still have off symptoms – downward toe curling in my right foot and upward toe curling in my left foot along with pins and needles.
While watching TV at night in a recliner, left quad muscles start contracting (involuntarily, I think), then I can induce a voluntary response to make them relax; but it doesn’t last. Next cycle starts immediately.
Then when I go to bed, as soon as I get horizontal, RLS takes over in about ten minutes. The RLS could be mild or intense. When I can’t stand it anymore, I swing my legs over the edge of the bed or get up and the RLS stops immediately. Unfortunately, that involves trips to the kitchen and some weight gain.
I take 2 g of Pramipexole before bed for the RLS, but that’s not keeping it at bay. The toe curling has been creeping back in so I increased my overnight dose of Sinemet 50/200 ER to a whole tablet and if needed, a half tablet around four in the morning.
Later in the night, the RLS creeps up into the gut – R-Gut-S for a name. Getting some relief from that with Probiotics. Gut position is not constant, can be different locations. Also, a one ounce swig of apple cider vinegar with another once of water for a chaser (the theory-more acid to aid in digestion).
Other useful hints that may or may not work. Laying on the hard floor. Hot shower, hand held shower adjusted to two strong jets on the quad muscles and the back of the neck to sooth the spinal column. Sitting at the kitchen table with a small pillow for your head, kitchen towel for the drool. While in bed trying to sleep, try lying on your back.
As for akathisia, I find that minimizing eating before bedtime helps (2-3 hours). I know this is a forum for akathisia, but reading these accounts reminded me of my sleep deprivation issues. Thanks for listening.
John *
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