Heat intolerance extreme

[kittee2015]

Ok so im going to voice this because it's one of my yearly fears and I know that most of you here might understand..

I'm dreading summer.hot sun hot showers hot food anything heat related can make me feel really awful and have what can only be termed is odd seizure like episodes(blurred vision,really bad light headedness ,slurred speech,eyelids that refuse to  open so just flutter, muscle control lapses  you name it ,bottom line is heat bad.

I live in Australia so our summers are really hard to handle with the burning feet and other stuff but the heat intolerance is epic.Because I didnt realise I had to lower my body temp back to normal i used to sleep for hours after one of these episodes and as I slept my body would return to normal temp I guess cause i woke up a bit drained from prololonged heat but more or less normal.

I'm just wondering what the most dangerous outcome might be for someone that couldn't get their heat intolerance under control ? our summers are getting hotter and hotter and I used to love the sun but what can i do to help this heat intolerance ?now i have a name for it ,it's not just a"fainting fit" there must be something I can do to make it less extreme...if its MS is it something my neuro might have an idea about?

Been getting these episodes since yr 4 primary (several years ago) just could never name the buggers so didnt know what to do about them

Like I said just anxious and figured some of you might have this same issue

[kittee2015]

Hi kyle thats actually what Im in the middle of doing ...im being tested for MS among other things starting on sat.EVP,NCS,brain and spine MRI's have been booked and should get results back end of this month/sept

Thankou for the logic though its appreciated

My neuro specialises in MS apparently so hopefully im in good hands or hoping that the tests show uo enough abnormalities that he just has to write up the finding,Must admit I dont hae a lot of faith in medical professionals anymore

[kwarendorf]

Hi Kittee -

As tempting as it may be to focus on the hest symptom, I think it's more important to focus on the cause. I spent 15 years chasing what I thought were unconnected symptoms. All efforts were in vain. It was only after my last relapse that MS connected all the dots.

If you want to rule MS in or out you should find an MS specialist and be evaluated (MRI, blood tests, LP evoked potentials, nerve conduction studies, clinical exam).

Kyle

[kittee2015]

no i haven't actually ,its just one of many confusion symptoms at the moment but when the tests all come back i can talk to the neuro about these sorts of things.

I did try to tell him how much heat affects me but he was kind of like a kid in a candy store and lost in his own world with the bundle of reports he was looking at lol.

[aspen2]

Just a quick comment -- neurosarcoidosis can be a very close ms mimic.  Have you had any tests for sarcoidosis?  

[kittee2015]

It is not only vision which can be affected.  For example, my legs become weak and ataxic when my body becomes overheated.  I become extraordinarily fatigued which affects my physical and cognitive abitilies. - See more at: http://www.*************.com/multiple-sclerosis/c/19065/134863/signs/#sthash.cbGGMikt.dpuf.

Whether its MS or not that is EXACTLY what i experience just the fatigue is much worse . Just thinking out loud though maybe its not the fatigue that lasts maybe its the cognitive issues left behind for a while as a result and it just feels like fatigue I can't shake.The concept of cognitive dificulties is still so foreign for me i dont recognise it from exhaustion,

Really just typing out loud here will keep searching maybe multiple  uhthoffs episodes leave behind damage over many years if they arent picked up and managed making them harder to shake or something,20 years is a long time to not manage something

[kittee2015]

actually very interesting I've decided to search prolonged Uthoffs phenomenon cases(not knowing what else to call them and found this :

"Prolonged Uhthoff phenomenon in sarcoidosis.
Haupert CL1, Newman NJ.
Author information
Abstract
PURPOSE:
To report a patient with sarcoidosis of the anterior visual pathways in whom one of the primary symptoms was visual loss lasting 24 hours after exposure to heat.
METHODS:
Case report and review of the literature.
RESULTS:
The transient visual loss was exquisitely sensitive to intravenous corticosteroids and lasted longer than the typical Uhthoff phenomenon. Serum angiotensin-converting enzyme level was increased, chest x-ray showed hilar adenopathy, gallium scan disclosed bilateral intense tracer uptake in the hila, and transbronchial lung biopsy showed noncaseating granulomas with negative stains for fungi and mycobacteria, consistent with sarcoidosis.
CONCLUSIONS:
Uhthoff phenomenon, typically associated with demyelinating optic neuritis, may occur in an atypical form in patients with sarcoidosis of the optic nerve.

Shall keep researcing but that confirms what I suspected, Uthoffs can be caused by other things and last a lot longer

[kittee2015]

yes apparently my heat episodes dont resemble those of MS patients, which i've learnt in recent weeks is called "uhthoffs".

Its interesting though because the MS heat episodes produce symptoms wise exactly as mine do in the moment mine just last a hell of a lot longer. Mine send me to sleep after but there again for years I had no idea what they were/are so when one hit i would drink cold water and lie down and wait for it to pass, therefore not lowering my body temp back to normal straight away.

whenever I mentioned the episodes to a doctor which is only in the last few years(kept quiet up till then) they were never looked into ,i have no idea what the buggers are but they floor me completely afterwards and they need to stop.

If they aren't "uhthoffs" then i'm completely ok with that cause that means its most likely not MS.

[kittee2015]

thank you those suggestions are great

"avoid heat like the plague " tick *smile*

[Katya4]

I share your distress over heat. I'm sorry you have those troubles.

I have issues with heat as well, but I guess more so along the lines of 'typical' MS heat issues, but whether or not MS is the cause remains to be seen. Never the less, heat kills me. A day at 60 degrees I am on top of the world, very few sx, can do darn near anything I want to, but the next with 72+ and sunny, my day is shot before I can get out of the bed. My symptoms are really tied to heat.

I have found that getting into a hot car in the parking lot, can render me nearly unable to operate the vehicle.
Also making sure I am cool at night during sleep has really helped my mornings, and my sleep.

My advice is as others state, Avoid the heat like the plague, park in the shade, stay in AC, do any exercise in the AC or at night/morning when it is cool. Don't go out when its hot, no hot showers, sleep with a fan and lose any extra blanketing.

I'm not sure in AU if you have any option to move to a cooler climate. But it's a thought if your summers are prolonged and hot. I'm extremely happy that I already live in a northern most climate.

[supermum_ms]

Just a thought but if these seizure like episode ("blurred vision,really bad light headedness ,slurred speech,eyelids that refuse to  open so just flutter, muscle control lapses  you name it") have been happening to you for almost 2 decades, since you were a young child (8-10yrs) when exposed to hot weather or heat.

It's highly unlikely that what you experience could be the same thing as MS Uhthoff's, because Uhthoff's actually causes the temporary return or worsening of an MSers pre-existing symptomatic MS issues. The MSer's will recover back to their normal, after their core temp has cooled enough and they have rested if that's also needed.  

EG. Jane was recently dx with MS and has fully recovered from her last relapse, her MS symptoms are unilateral Optic Neuritis, unilateral paresthesia and Uhthoff's. Now when ever her core temperature raises eg hot weather, baths/showers, infections, menstrual cycle, exercising, house work etc by as little as 1 degree or more, she experiences the temporary return of her specific MS issues and it feels like she's experiencing another relapse.

Uhthoff's may feel like a relapse because her MS symptoms have returned but unlike a relapse, she will shortly bounce back to her normal as soon as she's cooled down and no longer dealing with the effects heat now has on her faulty CNS.  

What I understand you are saying, is that you have been experiencing these seizure like episodes, decades 'before' the symptoms which are now being considered as possibly MS, actually developed or first presented which honestly does't sound right or what would be consistent if MS Uhthoff's was causing you to experience these seizure like episodes imho...

Cheers......JJ

  

[essdipity]

Many MSers suffer pseudoexacerbations of their symptoms in hot weather, though I haven't heard of actual fainting spells.The only thing to do is avoid heat like the pllague. Stay in air conditioning as much as possible, and when outdoors, use a cooling hat, neck band or vest made specially for the piurpose. There are various types available. Google will provide some help, and you can always contact your local MS society for suggestions.

ess