Anyone have an increased sensitivity to temperature?

Types of Avm's Brain DAVF
1

Either prior to surgery or after…

I used to love the heat but now have a huge sensitivity to heat after embolisation but looking back it started maybe 5 years ago but much worse since the embolisation

It’s a little hard to explain but I can do physical work etc but I used to like the heat, now it drains me fast like my head is overheating and I feel like passing out. Need a lot of short breaks and water to cool down…I’m fine but uncomfortable

Also I can’t get cold enough to sleep. Air con on coldest setting with fan on me and I’m still hot! I should be shivering in ice but I feel hot

I used to hate the cold! Now I hate the heat

Just curious if it’s brain related or my body naturally evolving to something else

2

Ohh yea, very much so. My temperature control is a mess.
Prior to a diagnosis it was all written off as psychosomatic, I was imagining it all seemingly, so I ignored it.
I could be working away fine and then suddenly, like a wave washing over me, I was boiling. Post craniotomy I was working in an office, 90% of co workers were ‘older’ females, going through menopause and they would talk about ‘hot sweats’. Here I was (a much younger male) going through the same sorts of thing.

I’m in Australia and it gets rather warm here…understatement… it gets bloody HOT up to 48C last year and that was in the shade. I had to be under airconditioning at all times. If I went outside I need to throw cold water over my arms to cool down. The water stung as it went on, like alcohol on a cut.

At night I’d sweat, I’d sweat so much 1/2 way through the night I’d have to get a towel and dry myself, changing my bedclothes as they were saturated. My wife and I have a woollen underlay on the bed. On my side of the bed the underlay was decomposing underneath me due to sweat. One of my surgeries was the insertion of a shunt, a plastic tube that was placed down through the area of the hypothalamus (which plays a large role in temperature regulation). I queried the neurosurgeon if this may have damaged the hypothalamus. He was NOT happy about me asking such questions. He thought I was going to sue, that I was looking for money. I was looking for answers, not money. I had nor have no intention of suing. In my view if they didn’t operate I’d be dead. But still I didn’t get any answers.

So, I ignored it all again. Learnt to cope with it. Carried a can of deodorant (and a clean shirt) everywhere I went. Then years later the shunt broke, so they operated again, and again… …and again, all in 2013. Since then it’s not just the heat that kicks it out of me, but the cold too. Now, when it’s cold I sweat, making me more cold, and the heat hammers me something horrible. I have to keep myself within a temperature range or my symptoms can get chronic bad.

The neuros still don’t have any great answers, but I must admit I haven’t quizzed them too much for fear of getting a similar reaction as the former surgeon gave. I have gone investigating myself, trying to find a clue and I keep coming back to the hypothalamus theory as a cause. When I’ve put that to any dr’s the best answer I’ve gotten has been “Well, it could be…” It could be what??? Still no answers.

Could it be “…my body naturally evolving to something else…”? Well, yes, it could be.
But by the same accord ‘Could it be brain related’. Well, yes it could be.
And that’s about as clear an answer as I got.

Merl from the Modsupport Team

2 Likes
3

I still do, but not bad at the moment

For instance, it’ll get just a tad cold & I’ll get the shivers for no reason

I can’t comment much on the heat, since we haven’t hit our highs here since last fall. But, from extreme cold I don’t get any pain either. But, seem to handle it poorly - I seriously almost get the shakes at times, almost randomly until I adjust - even then, they seem to come & go

Last summer I had a real bad incident from being in the heat - but, that was less than three months past my embolization

I am really just trying my best to follow my body. Temperature definitely has a new feel, but nothing drastic yet.

But, I seem to like the ice cold feeling on my head since it still feels like it’s throbbing at times - nothing major at all & I don’t need pain meds for it.

I also seem to do actually better with elevation changes. Before, when going into the high country I would get terrible ear popping - now, I don’t

I’m still thinking of when I will dare to go for a flight. . . I’m kinda glad things are the way they are right now. Otherwise I’d have to be on a flight every few months.

2 Likes
4

Ahh, yes, flights.
The wife and I flew from Australia to the UK for a British TV show. The long haul flights were OK, I didn’t have an issue. But whilst we were there we went to mainland Europe, we took a ferry to Amsterdam, then a train to Paris and all was fine. Then we flew from Paris to London and OHH BOY did I have a headache, the sudden change in pressure was a killer. I believe that on the long haul flights my body had time to adjust to the pressure change, but with the short flights that flight pressure was only about an hour, not enough time for my body to acclimatise and I paid for that in agony. The intense agony didn’t last long, but for the rest of the day I had a lingering headache.

My first neurosurgery was 1996, the last major neurosurgeries were in 2013 and I still have temperature issues today. I know I get these issues, so I just have to be prepared to manage it all. It’s just one of those things that get added to my management list.

Merl from the Modsupport Team

2 Likes
5

Today seems to be a good example of what rapid barometric pressure feels like - temperature swings here have been huge also.

I’m just watching these clouds roll in & my left temple just started pounding. . . Nothing too alarming by any means. But, boy it’s noticeable. . . The temp rapidly dropped also. But, I seem to not get the throbbing until the cloud formations came in.

2 Likes