This is driving me nuts! I have wild temperature fluctuations, one minute I am paralysed by cold, even though my house is a constant 21c, next minute I am raving hot and standing outside in the frost, I frequently have to wash my bedding as it’s soaked in the morning.
Anyone else having this problem?
Hi @Bandit1250
I’m sorry to hear you’re having these uncomfortable temperature fluctuations.
Since the nervous system controls body temperature, it’s common for people with Parkinson’s to experience difficulty adapting to heat or cold. While you’re waiting to hear from your helpful fellow members, you can read some coping techniques here.
Don’t forget our helpline and Parkinson’s local advisers are also here to answer any questions you have about temperature fluctuations. Feel free to give us a call on 0808 800 0303.
Best wishes,
Janice
Forum Moderation Team
Yep! Nothing helps for me. It just happens and when it does I shed clothes or pile them on. Sometimes I go outside and stand in the cold. It’s one of the more annoying symptoms of this disease.
I first noted “profuse sweating” in August 2003, a little over a year after my first Parkinsonian symptoms began to appear. I remember mentioning it to the neurologist’s young assistant and she just dismissed it as being due to my excessive movements. It was embarrassing. There were dark patches on my trousers. I’ve still got some photos from a friend’s house, everyone else is wearing jumpers and I’m in a sleeveless t-shirt with big sweat patches. I do move a lot and it is a struggle to sit still (I have akathisia too).
I would keep thinking it was the heating coming on – put my hand out to feel the heater and it’s not on at all. I got in the habit of having a woollen waistcoat on the back of my chair and I was always putting it on, taking it off. One summer I was really uncomfortable in London in the heatwave so the next year I was very pleased with myself when I went up to Scotland in the heatwave & enjoyed fantastic sunshine without overheating.
I’ve never taken levodopa. Don’t get drenched at night thankfully. Not bothered by cold really. These daYS it’s just that feeling the heating is on/I’ve got to take a layer of clothing off. I just looked up the drugs I was taking when I first noted the sweating – Baclofen then Lofepramine. Both list sweating/hyperhidrosis as a side effect
SINEMET Last reviewed on RxList: 3/16/2020 Generic Name: carbidopa-levodopa
SIDE EFFECTS [include]: Skin… increased sweating
Drenching sweats as an off phenomenon in Parkinson’s disease: treatment and relation to plasma levodopa profile J I Sage , M H Mark Ann Neurol. 1995 Jan;37(1):120-2.
Drenching sweats should be considered part of the spectrum of off-period levodopa-related fluctuations in Parkinson’s disease.
Sweating abnormalities have been noted in patients with Parkinson’s Disease (PD) since the early descriptions of Gowers and Charcot. After levodopa came into widespread use to treat PD, profuse sweating was noted in fluctuating patients.
Classification of fluctuations in patients with Parkinson’s disease Niall P. Quinn August 01, 1998; 51 (2 Suppl 2)
Patients with Parkinson’s disease (PD) are subject to a wide range of fluctuations in their clinical state, most of them treatment-related but some more disease-related… Medium-duration fluctuations associated with chronic L-dopa treatment include wearing-off and “on-off” responses, which can involve (a) return of parkinsonism, (b) dyskinesias, and© non-motor fluctuations. …The “off” state is not the same as untreated PD, and may represent rebound worsening after the beneficial effect of L-dopa has worn off. Sometimes there is also transient worsening at the onset of effect of a dose.
“Off” period dyskinesias tend to be relatively fixed, painful, and dystonic…Other parameters that may vary between the “on” and “off” states include urinary and bowel dysfunction, blood pressure, respiratory function, and sweating attacks.
Most Antidepressants Increase the Risk of Hyperhidrosis Ann Paterson, May 08, 2018
The authors cite findings that approximately 5% to 14% of patients taking antidepressants develop hyperhidrosis, although older studies found slightly higher percentages…In addition, hyperhidrosis may be underreported, the authors say, because patients are embarrassed to discuss it or because they don’t realize that it could be caused by the medication.
Nonmotor Symptoms in Parkinson’s Disease in 2012: Relevant Clinical Aspects Anne Marie Bonnet, Marie France Jutras,
V. Czernecki, Jean Christophe Corvol, and M.Vidailhet Parkinson’s Disease Vol. 2012, Article ID 198316
Nonmotor symptoms (NMSs) of Parkinson’s disease (PD) are common, but they are often underrecognized in clinical practice, because of the lack of spontaneous complaints by the patients, and partly because of the absence of systematic questioning by the consulting physician…The most frequent NMF is anxiety (66%), then drenching sweats (64%), slowness of thinking (58%), fatigue (56%), akathisia (54%), irritability (52%), and hallucinations (49%). (Witjas 2002)
Thermoregulation in Parkinson disease. Coon, E., & Low, P. A. (2018). In Handbook of Clinical Neurology (pp. 715-725). (Handbook of Clinical Neurology; Vol. 157). Elsevier
@Bandit1250 I totally understand and know how you feel. All I can suggest is as others have said wear multi layers so you can strip off or put on as required. The worst I find is the cold, I can go from a comfortable temperature to being completely frozen very quickly and always take a long time to warm up again.
If you are not already also get yourself with your utilities supplier to get registered as a vulnerable priority, because if your heating fails you will get prioritised for a call out. More importantly where they can you will get advance warning when their is going to be a disruption to your heating. Stay safe, stay well John 