heat

[1eye]

I am going to post the following next to the thermostat in my house. The attic is not well ventilated, though solar panels we are installing may help. Better soffits are coming soon. Please share your comments.

Please read the following.

Notice: a person with MS lives here.

Many accommodations have been made and a lot of time and money has been spent to try to let me (the person with MS) live some semblance of a normal life. I have discovered by trial and error that my heating control systems (thyroid and others) are faulty. This is due to an inability to process and get rid of
internal heat in my body.

The upshot of this is that above an air temperature of 73 degrees F I start to quickly deteriorate in many ways. If a higher air temperature continues, I stiffen and lose much flexibility and soon walk in a very clumsy manner, even with my walker.

The next thing that happens is my hands get hot (they feel as if they are on fire). My core temperature rises and eventually my skeletal temperature follows. I become completely unable to function. I may lose control of my bladder.

Along with the reaction to heat is a complete loss of emotional control. I am liable to start yelling and be unable to stop. Things which should not provoke a reaction at all result in fast breathing and fast heartbeat, which are very dangerous to me due to a heart attack I suffered in 2009. Unfortunately, except for stem cell treatments, heart damage does not heal. I will be in the same danger until I die, exercise notwithstanding. Believe me, I am sorrier than you are about it.

Unfortunately I often do not notice my overheating until it is much too late.

Please do not turn off the air conditioning. Ever. Please do not open doors or windows unless the outside air is noticeably less than 74 degrees F. Ever. Remember that it takes active cooling to overcome the house’s storage and internal radiation of heat, so unless there is a good wind, the air in the house may not cool down.

I wear water-retaining coolers to help with my very limited outside activities. If the heat outside is too great I can’t go out at all.

The house may continue to heat up long after sundown, if the air conditioning is turned off.

[Scott1]

Hi,

I'm very sorry that heat is an issue for you. Despite everything I have dealt with, it is not an issue for me and I find the difference very interesting. Can you share, as clinically as possible, the general presentation of MS symptoms you deal with and how you treat it.
Your heat issues, to my mind, relate to the capacity to vasodilate. Your expression of heat shock proteins must be different to mine. If I have stumbled on something that helps then I should work out what it is. Perhaps we can improve your tolerance of heat.

Regards,

[Leonard]

when it gets too hot, I suffer too.
I never tolerated sauna very well even before diagnosis at 47. which I understand now.

an explanation for the heat effect can be found on http://www.thisisms.com/forum/general-d ... 8-720.html
just let the search function of your browser search for 'temperature effect'.

what I see happen is denial in the medical world.
I guess it is some sort of protective reaction for their own world when they get bad news.
it is a reaction very similar to a patient who is just diagnosed with MS an d goes through a phase of denial.

[Scott1]

Hi,

I also know about heat intolerance but these days I don't have it. Each day I sit in a dry sauna for about 45 mins at 90C+ with no adverse affect. I do it to help get heat into my muscles as I am still a little stiff. Something has changed for me regarding heat. I imagine it will be the sum of all the things I have done rather than a magic bullet but I must be doing something right.

Regards

[Quest56]

The upshot of this is that above an air temperature of 73 degrees F I start to quickly deteriorate in many ways.

I've found my trigger to be 72 degrees, remarkably close to yours.

As the day progresses, I need intermittent cold showers or my trusty ice cooling jacket:
http://www.amazon.com/FlexiFreeze-FF0I ... 70VN09WS88

[1eye]

73 degrees is my trigger air temperature, which is only as accurate as my house thermostat, however that is. When I got a new furnace I specified that my thermostat be in degrees F to allow for finer control. I'm sure 72 would be even better. My symptoms, as I have said, include stiffness, double vision, dizziness, hot sensation in my hands, loss of emotional control, probably loss of cognitive function, sometimes loss of memory, weakness, lethargy, and basically intensification of all my MS problems, seemingly linearly with the air temperature and length of time I spend overheated.

If I have been overheated only a short time my recovery is short and complete, though I am about 6-6.5 on EDSS regardless. If overheating is prolonged, I can take as long as a couple of weeks to recover.

There was a story on here about a girl who ran footraces, who could complete them but would totally shut down immediately after, and be paralyzed until she cooled down. I recognize that as inability to deal with heat, which hit her like a ton of bricks as soon she stopped, when the air around her stopped moving and evaporating sweat off her body.

I believe I am unable to correctly remove heat above my trigger air temperature. Initially it is my skin and surface temperature, but if unchecked it goes deeper, to my core muscles, organs, and I believe to my skeleton. As tissues increase in density they are better able to store heat, and it will take longer to remove it. That is why duration of heat exposure is critical.

When it is not air but water temperature it is equally but perhaps more quickly devastating. I had a bath about 6 years ago which was my last. I have only been able to shower since. I was unable to get up out of the tub, and wrenched my arms trying, on grab bars which had become useless.

If I had the energy and ability to run, I think the internal heat generated would be just as destructive as it was in the runner mentioned above.

If the problem is in my brain and spine, it is undoubtedly a drainage problem in those areas. I believe it is more general, and that my brain and spine are equally vulnerable to overheating as is the rest of my body. Endothelial health, as Joan is fond of saying, would solve these problems. They may be due to changes in my endothelium, but even so may be limited to larger veins. I don't know. One thing I do know is that in suitable wind (generated by riding) I can ride a tricycle in the blazing sun with neck coolers and a wet do-rag on my head.

The advent and worsening of all these problems may have been due to damage caused by overheating, which in my belief may be the single and only "cause" of my MS. All of my attacks (when I still had them) may have involved oveheating.

[pawel96]

I think heat/light sensitivity = inflammation going on.
Whenever I take sufficient antioxidants (magnesium, selenium, vit E) and flax oil my sensitivity is significantly lower, this summer I could tolerate ca 93 deg F. Which wasn't pleasant but not pain.

P.

[1eye]

I just know I have to keep the air <= 73. I don't think I have nearly as much if any inflammation going on at that temp. What I am concerned about is that I should be able to function when it's hot. I remember my very first attack came in 1982 when I was working at a place that had no air condiiioning. I was slaving over a hot lab bench, trying unsucessfully to draw straight lines, and the sun had no mercy. There was the usual developer hell (stress). I could not get any doctors to recognize any symptoms, because by the time I saw them I had cooled down in an air-conditioned waiting room. All the xrays and scans I had were in air-conditioned facilities. Probably a lot more diagnosis of MS would happen, and sooner. if patients were not routinely cooled down before examination.

I think that first neurologist just gave up, after 6 months my symptoms were gone (neural plasticity), and they didn't return for 7 years.

Inflammation is exacerbated by heat. The word implies burning. Chemical and biochemical reactions are sped up. I think if there is something pathological happening, it may cross over into lasting damage when heat is applied.

I think MS damage is cumulative, and at least at first, reversible.

[Scott1]

Hi 1eye,

What medications do you take? I'm suggesting you change anything but I'd like to compare them with what I do to look at the differences.

Regards

[1eye]

Hi 1eye,

What medications do you take? I'm suggesting you change anything but I'd like to compare them with what I do to look at the differences.

Regards

Every day I take 300mg wellbutrin, 200 mg modafinil, 80mg lipitor, 4000 iu vitamin d, 2mg ramipril, one multivitamin with no iron.

Most nights I take 1/4 tab of seraquil. Other occasional sleeping meds are sativex, baclofen, benadryl, acetaminophen, motrin, aleve, tylenol with codeine #3 with no caffeine.

Last couple of nights were miraculous: I dreamt, both nights. When I can't sleep (most nights) it is most times because my legs are twitching. Heat is directly related to this.

Today it was 79F. I rode recumbent tricycle about 15km in hot air with coolers on my neck and head. Now I am very tired but OK in my 73F house. My sit-to-stand exercises are helping. I can get down and up onto my trike without help. I used to have a trapeze-like thing on a rope from my garage ceiling; don't need it now.

[NHE]

Inflammation is exacerbated by heat. The word implies burning. Chemical and biochemical reactions are sped up. I think if there is something pathological happening, it may cross over into lasting damage when heat is applied.

Heat also impedes nerve conduction velocity.

[1eye]

Inflammation is exacerbated by heat. The word implies burning. Chemical and biochemical reactions are sped up. I think if there is something pathological happening, it may cross over into lasting damage when heat is applied.

Heat also impedes nerve conduction velocity.

From Wikipedia:

In general, the conduction velocities of most motor and sensory nerves are positively and linearly associated with body temperature (low temperatures slow nerve conduction velocity and higher temperatures increase conduction velocity).[1]

Conduction velocities in the Sural nerve seem to exhibit an especially strong correlation with the local temperature of the nerve.[5]

[Scott1]

Hi 1eye,

If that protocol works for you then that's fine. I would have baulked at most of it as it doesn't sit well with my view of the world.
As I believe in a viral trigger. I take Valacyclovir.
As I believe we make ADMA I use Arginine to offset it.
As I believe the peroxynitrite impairs how cells respire, I take large doses of Q10 and acetyl-L-Carnitine,
As I try to limit inflammation I limit my intake of Dairy, Gluten and Pulses. I also take curcumin.
As I have some spasticity I take 5mg of Baclofen before bed.
I refuse all painkillers and things that influence my mood.
I exercise using Pilates .

So we are very different in our approach. If something might make a difference it might be the Q10.

Regards

[NHE]

http://www.nationalmssociety.org/Living ... ensitivity

An elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.

[1eye]

http://www.nationalmssociety.org/Living ... ensitivity

An elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.

Guess I won't know until I am dead which of my nerves is demyelinated. What you're saying is that because of demyelination my conduction is impaired and therefore these nerves are different from the other nerves in my body/brain. Conduction, in these supposedly demyelinated central and peripheral nerves, but only in the demyelinated ones, instead of having the normal heat response of speeding up, slows down. I find all that hard to swallow. If the myelin paradigm of insulation on a wire is accurate, the wire itself (not the insulation) is what responds linearly and posiitively to temperature. I don't think even that paradigm really holds. If someone can explain the actual effect of heat on my nerves, that might help. But I think it has not been explained except in the usual hand-waving manner.

As far as my drugs go, I can't just start on any drug I want to. If I want a drug to be paid for, it has to have a physician/neurologist's blessing. I can't afford to buy antivirals or even expensive supplements myself, without prescription. I bought biotin in bulk while the price was still low. My atitude is, there's nothing like painkillers when you are in pain.