Body Temperature Regulation

[Mondoug]

Apparently 50%+ of PWP have experienced extreme body temperature failure - too hot or too cold! Have many HU members suffered extreme coldness? If so; how did you manage/control it’s initiation and continuance?

[chartist]

Mondoug,

I hadn't heard that symptom mentioned on this forum previously, but as fast as information flows through this forum I could have easily missed it. Apparently it is a definite known symptom of PD and really be a major problem for some PWP's. Interestingly, that is one symptom that can also be used as a confirming factor in the diagnosis of PD compared to other similar neurodegenerative diseases according to the two following abstracts :

ncbi.nlm.nih.gov/pubmed/304...

ncbi.nlm.nih.gov/pubmed/260...

This last full study suggests that there may be a relationship to REM Sleep Behaviour Disorder :

ncbi.nlm.nih.gov/pmc/articl...

Art

[Enidah]

I have the overheated side of that. Right now I’m standing in front of one of my four fans. I don’t know which would be worse, too cold or too hot. I would pick neither if I had a choice. It all is related to the autonomic nervous system which is malfunctioning in PD patients.

[Mondoug in reply to Enidah]

Thank you - I have received MANY replies with helpful info! 5 days since my chilly experience and my wife-carer and I have developed a clothing and heating plan that has made my last 2 nights less traumatic!

[Parkiefighter]

Yes!

[SilentEchoes]

I use a wool blanket with a sheepskin for the bed. This does a good job of keeping me comfortable, otherwise I suffer from night sweats and a drop in blood pressure. In the winter I use 2-3 wool blankets depending on how cold it is. I have developed Raynaud's and have experienced a drop in my core temperature in the winter. (I live in northern MN). Summer heat is easier for me to cope with.

FWIW, autonomic dysfunction can occur in all degenerative neurological disorders-not just PD, despite what Mayo clinic says, so you cannot rule out other diagnoses based on dysautonomia. My mother developed autonomic dysfunction late in her PD, I developed it early and thought I have MSA, my dx was Parkinsonism with tremors, now confirmed to be ALS. It frustrates me to see this type of misinformation come from research institutions like Mayo Clinic.

The hypothalamus is involved in REM sleep too. In my case it's a lack of REM sleep, not sure why this is, insomnia is featured in both. I plan to start l-tryptophan at 4000 mg/day for therapy, and take 15ml GoodSense Milk of Magnesia at bedtime and 200 mg B6 each day.

jneurosci.org/content/39/25...

[Mondoug in reply to SilentEchoes]

Thank you - I have received MANY replies with helpful info! 5 days since my chilly experience and my wife-carer and I have developed a clothing and heating plan that has made my last 2 nights less traumatic!

[mblongdon]

I get hot and cold. Often times one followed by another. Doesn't last too long usually but I always have a sweater around. At night I sleep with a down comforter. I thought for a while that it was actually my menopause hot flashes coming back but now that I look at it I realize it's probably the Parkinson's. My hot flashes had actually gone away. Then I had a major surgery including a hysterectomy and then I started getting what I thought were hot flashes along with cold flashes which I'd never had before. At the time of my surgery the only sign of Parkinson's was a tremor in my index finger. That was five years ago.

[Mondoug in reply to mblongdon]

Thank you - I have received MANY replies with helpful info! 5 days since my chilly experience and my wife-carer and I have developed a clothing and heating plan that has made my last 2 nights less traumatic!

[mblongdon in reply to Mondoug]

That's good to hear.

[mblongdon in reply to mblongdon]

Another thing I use is a hot water bottle. It's really a soothing heat when you're freezing and then when the cold flash goes away you can just set the bottle aside.

[Stockpickerliz]

Hi fellow PWPs... Major problems controlling body temperature were one of my earliest symptoms of Parkinson's, developing somewhere around 10 years prior to my actual diagnosis 3 years ago. This hasn't responded to any medication, but now I understand it, I take action to avoid situations that will make me uncomfortable. I even moved to a cooler climate, to avoid the stress from high summer heat and humidity in Sydney (Australia).

On hot days, I use Evian H2O spray which I keep in the fridge.....a quick spray cools you quickly.

All the best!

[Enidah in reply to Stockpickerliz]

Thank you for the helpful hint. I hadn’t thought about putting the spray bottle in the refrig.

[Mondoug in reply to Stockpickerliz]

Thank you - I have received MANY replies with helpful info! 5 days since my chilly experience and my wife-carer and I have developed a clothing and heating plan that has made my last 2 nights less traumatic!

[jimmydook]

I've had this problem, when weather is cold i am colder than everyone else, i used to love the sun, but can't take it now dygnosed 2yrs

[Maltipom in reply to jimmydook]

EXACTLY the same for me!

[Mondoug]

My body could stand hot & cold temperatures really well! I had a hypothermic experience when body surfing on the Sunshine Coast (in close to freezing temps) 8 years ago, but I have never had such an extremely severe reaction to cold as 2 nights ago (thus my post)! I was diagnosed mid 2012!

[jackedmonston]

I experienced constant hypothermia almost 30 years ago. Reading convinced me that it was a thyroid problem, but docs wouldn’t prescribe thyroid hormone because my

TSHtest was normal. Finally found a holistic doc who gave me thyroid hormone. It worked fairly well (shifting problem to sleep time mostly although I was always the most wrapped up guy in any room), and I’ve been taking it ever since. Six years ago things took a turn for the worse, and I got PD diagnosis. Neurologists never mentioned temperature control, but my PCP treated me for low testosterone and that helped a lot. However, I I can still wake up with a horrible chill that can take hours to get over if I don’t dress like a skier at bedtime.

[ddmagee1]

Unfortunately, I have that problem, too! The neurologist said it is a symptom of PD. I live up North, where the winters are brutal! Last winter was tough, between being too cold, and dealing with peripheral neuropathy.

[Tribselyov]

Yes, hypothermia has been recognized as a function of dysautonomia in PD. In fact, it is alleged that the world’s first described person with PD had severe hypothermia.

For a news break:

youtube.com/watch?v=iWdTghb...(Not working as expected?)

For the most definitive text which includes ancient recommendations that are fully applicable today, go to Amazon or Google and type in Parkinson’s First Hero

For information about other writings related to Club Parkee, see my website:

crvoyles.com

[Hidden]

I have a problem with overheating!

parkinsons.org.uk/sites/def...

[JohnPepper]

I am not sure that I understand what you mean by suffering extreme coldness?

Do you mean that you get cold, but are not aware of being cold? If so, I can confirm that I have that problem. I get up early in the mornings, because I am unable to sleep, and I work on my computer. After a period of time I realize that my hands are freezing cold, but I only become aware of it when I touch my face with my hands.

Likewise, during the summertime, working at my computer during the daytime, I find that I am quite hot, but am not sweating, as I should be.

I sleep during the winter under a sheet, and very occasionally under a light blanket. My wife has to have a duvet on top of the sheet or at least two blankets. I am totally out of sync with 'normal' people.

[mblongdon in reply to JohnPepper]

Well for me I actually feel the cold and the heat. I have to add a sweater or a blanket or a hot water bottle when I'm cold usually what follows that is then a hot flash where it all comes off again lol

[Mondoug in reply to mblongdon]

Thanks for your comment! I am now hoping it was a one off that might start occurring regularly! But my body temp.has moved with my environment heat!

[Hidden]

I bring a sweater with me always, and a blanket to the movies. I haven’t found anything medical that helps.

[Mondoug in reply to Hidden]

Thank you JUDY! Thankfully, my body has returned to “normal” and I, like you, make sure I have warm clothes and wraps nearby!