Temperature spikes: Hi Does anyone else who... - PSP Association

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Temperature spikes

Spiralsparkle profile image
24 Replies

Hi

Does anyone else who you care for have episodes of temperature spiking and then going back to normal?

Mum hasnt been well for a number of weeks with UTi & bugs. Before this though she would get a random temperature and/or get too hot and vomit. Then be ok.

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Spiralsparkle profile image
Spiralsparkle
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24 Replies
Kevin_1 profile image
Kevin_1

Hi S Sparkle.

Liz used to suffer from night time sweats. I never measured her temperature. Night time sweats and feeling very hot goes along with a lot of serious illnesses not just the fever related ones.

She would also feel the cold badly and we had to keep the house very warm.

Sorry not very helpful.

Warmly

Kevin

Spiralsparkle profile image
Spiralsparkle in reply to Kevin_1

Yes also same with cold but doesn't really know when she is too hot. We have the heating on all the time apart from some hours during the night.

Kevin_1 profile image
Kevin_1 in reply to Spiralsparkle

Yes, getting hot and cold seems to be all over the place some days.

easterncedar profile image
easterncedar

Yes. My guy had three or so random episodes of spike of temp, confusion, sweating, and rigidity that would pass in less than an hour, leaving him weak but otherwise okay.

Satt2015 profile image
Satt2015

Hi Spiralsparkle

My Dads first symptoms of this nightmare were passing out, being sick and feeling very very hot

currently he regularly sweats far too much and this is most uncharacteristic for my dad

I wonder is it the fentanyl patches or just bloody Psp?

I’ll be interested to read the other replies x

Spiralsparkle profile image
Spiralsparkle

Mum has always had sweating phases but now it is this shooting up in temp then back down again. I think she is having mini seizures more often too...Not had a big one since November. Probably jinxed it by typing that now..Her behaviour and moods have changed alot too so I guess all part of the downward slide

NannaB profile image
NannaB

Colin’s temperature was often sky high and then back to normal by the time the GP came. The GP told me it was part of PSP, his brain could not regulate his temperature, like a young baby can’t regulate theirs. That part of the brain was damaged. I would put a fan on him and cool him down when it happened.

When Colin put himself in danger regularly, climbing on chairs, ladders etc, I was told the part of the brain that was underdeveloped in teens and 20s, making them not aware of danger and seeking excitement, was damaged in Colin making him act irresponsibly. As different parts of the brain are effected, so new symptoms appear.

XxxX

Satt2015 profile image
Satt2015 in reply to NannaB

Oh yes I remember that’s been said before Bev, tbh I’d forgotten that, thanks for the reminder!! X

Spiralsparkle profile image
Spiralsparkle in reply to NannaB

Yes for sure and well explained.

Mum keeps asking me why does it keep happening , she vomits like a baby when it happens. As she is so confused now and no memory recall it is hard for her to grasp.

We've just had a long chat as she has been vile again this evening to me. Whether she remembers it though is another matter. She said she knows everything is getting worse and nothing makes sense to her anymore.

These conditions are so evil...

Hugs x

Satt2015 profile image
Satt2015 in reply to Spiralsparkle

Bless you both, so completely unfair x

Robbo1 profile image
Robbo1 in reply to NannaB

Just the same with us, Nanna B. Very traumatic as it was difficult to understand how someone who had been so reliable and sensible could behave so irrationally. Very scary to see and very risky for our beloved with the usual injuries. The worst B had was crushed vertebrae when he fell backwards onto the sharp corner of a coffee table.

Re: temperature, B had spikes all the time in the last few weeks. They had to keep a fan on , window open ( December) and light clothing. X

abirke profile image
abirke

Bruce began not being able to control body temp. he'd be hot!!! and then come back down with no other side effects...I think it was NannaB that first discussed this as a condition in the latter part of the illness...

Spiralsparkle profile image
Spiralsparkle in reply to abirke

Thanks. Yes think we have defo moved into the latter stage symptoms with less of the mid stage ones over lapping now as regularly.

abirke profile image
abirke

The part of the brain that regulates the body temp is the hypothalamus deep inside the midbrain ....

ketchupman profile image
ketchupman

My wife had this going on during her last 8-10 months of life. I didn’t know if it was a sign of another UTI (she had numerous) or another bout with aspiration pneumonia (also numerous). Her neurologist told me it was a sign of her body shutting down, as the brain could not regulate body functions. I would monitor her temp and also her oxygen levels and heart rate. All of those would go crazy high/low. And they are good indicators when major issues are taking place.

Ketchupman.

Spiralsparkle profile image
Spiralsparkle in reply to ketchupman

Thank you. I do the same also with monitoring. It had happened every so often but now becoming regular and wondering if UTI's but can't get a sample to send off for cultures. She is being treated as if UTi present with antibiotics for last 3 weeks.

Would your wife also vomit with the temperature spikes?

ketchupman profile image
ketchupman in reply to Spiralsparkle

Never did vomit.

I kept her on a lose dose of nitrofurintonin to try to keep the UTI’s at bay. I bought my own urine test strips and collection jars. If it showed signs of infection, I would take the sample to her primary care doctor for him to order a culture. They could then determine the best drug to put her on, as some were resistant.

Spiralsparkle profile image
Spiralsparkle in reply to ketchupman

We are struggling to get a sample this week. She is resistant to quite a few antibiotics now.

ketchupman profile image
ketchupman

I had to catherize my wife 5-7 times a day, so it was easy to get a specimen. It was much easier to drop a sample of at the doctors office than arranging for an appointment. Probably 75% of the time I tested it, the urine wasn’t that high in Nitrites that I needed to take a sample over. So it prevented a lot of false alarms. I found the test strips on the web and they were about $60 for 100. The specimen cups were really cheap, about $20 for 100. I got those on Amazon. Even when she was on hospice, it took a lot of effort to get the nurse to have a culture ordered, as they had to get a doctor’s order and then have someone else come to the house to draw the urine. My doctor charges about $12 for the culture, which our insurance also covered.

Spiralsparkle profile image
Spiralsparkle

I have strips at home also. We are in UK so don't have to pay for the tests but they haven't suggested to catherise for urine as yet. Will be back into Drs on Monday.

Jaeffbee profile image
Jaeffbee

My mom has been having episodes of ‘night sweats’ and her head getting hot for several months. Our Dr says it’s from the brain no longer regulating body temperature. Her episodes last usually all night, along with extreme cervical dystonia. We have been putting migraine gel pads on her forehead ( they’re called BeKoool pads, we keep in fridge, but I put it on my forearm first to take initial coolness away so they aren’t too cold) and have been using cold packs weapped in cloth under the back of her head. Dr advised us to do what we could to counter the body heat. She does not show fever during these episodes, her head just gets reLly hot and she’s usually drenched in sweat. I check for fever in case she has underlying infection. Hope this helps.

Spiralsparkle profile image
Spiralsparkle

Thanks for reply.

It is interesting what you say about the cervical dystonia as Mums leaning to her side has also now increased and more regular.

Cuttercat profile image
Cuttercat

Yes, Charles gets hot and cold but mostly hot and clammy. It's part of the disease process. What is interesting is that his upper body is hot and his feet are cold!!

Hope this helps.

Cuttercat

Spiralsparkle profile image
Spiralsparkle

Ditto freezing feet!

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