[Gary Munson]

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

[Gary Munson]

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

[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.