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Anyone Get Sick Being In The Sun?


mjan

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I found out from my TESTING that I hardly SWEAT at all !! And to be careful in the sun.. or getting overheated.

I am still learning about this and have not even met again with the Autonomic neuro to find out what I should do etc.

But I have noticed that now that its sunnier..and my symptoms over the years are getting more frequent and worse..that when I am driving and the SUN is beating in.. I feel nauseated..lightheaded..icky and even tachy. I never faint.. just feel like I am losing consciousness...lose muscle tone..unable to remain alert but can HEAR. They thinks its narcolelpsy with Cataplexy initiated by autonomic problems.

What I am asking is WHY the SUN should be so bothersome..its not exactly a heat thing as far as I can tell.

YOU see I do not have terrible POTS most of you do. I get symptoms SITTING.. high BP/HR sudden weakness. I have had 2 postiive TT tests but not as bad as most of you. ONLY my BP skyrockets THEN jumps down to normal range..so in affect I do go up 30 points or son.

BUT was wondering what on earth is happening cuz I am in the sun??

Thanks for responding

Jan

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When there is a hypothalamic issue (I think narcolepsy is one) you can be WAY overly sensitive to bright light. With my sleep disorder (also a hypothalamic issue,) I am hyper-responsive to bright lights, flourescent lights and sunlight are really bad for me! I have the darkest sunglasses that I can get, and don't have bright lights on after dusk. Bright sunlight makes all my ANS symptoms worse (gee summer is coming :P ) The added heat and lack of sweating aren't going to help you any either. That's the only thing I would think would be going on.

Stay inside and become an owl like me. :lol:

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Hi,

I too have problems with the sun. I also no longer sweat in response to being hot, but my reaction to the sun seems independent of just feeling overheated. Even after a couple of minutes in the sun, I begin to feel woozy and unwell. I do not know whether or not it is just a result of the dysautonomia, as I also have various hypothalamic abnormalities. I believe that our abnormal response to heat and sun may just be due to the fact that our bodies cannot process and respond to temperature changes correctly, so they set off inappropriate autonomic symptoms.

~Broken_Shell :rolleyes:

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Yes thank you all for your responses. I always learn something new.

Today it happened again. And just when I was thinking that today was such a good day (symptoms wise)!!

I was finishing work..driving INTO the Sun..rather than on the sides and did NOT feel any heat..which may be the problem. I mean it was cool out..but once the SUN hit the front windshield..ALL the crappy symptoms came on. I was supposed to go straight to my daughters for Easter dinner but HAD to go home first an dlay down. I took my blood pressure and it was the LOWEST I ever remember (for me) 115/57..HR seemed normal. THen it went WAY up high.. and HR started climibing but for the most part stayed normal. It was my blood pressue that went down low then up over 40 pts.

I felt nauseated..lightheaded..and knew I just needed to lay down. After resting for about 2 hours..it was ok..went and had a nice EASTER dinner.

I am now worried that I will always get this way while driving..

I mean I cannot AVOID the Sun or I cannot get home. I put the fan on high and even tho it was cool out.. I lowered 2 windows thinking the cool air would help. IT didnt seem to make much difference...or.. it was too late.

Any more ideas??

Jan

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Yes thank you all for your responses. I always learn something new.

Today it happened again. And just when I was thinking that today was such a good day (symptoms wise)!!

I was finishing work..driving INTO the Sun..rather than on the sides and did NOT feel any heat..which may be the problem. I mean it was cool out..but once the SUN hit the front windshield..ALL the crappy symptoms came on. I was supposed to go straight to my daughters for Easter dinner but HAD to go home first an dlay down. I took my blood pressure and it was the LOWEST I ever remember (for me) 115/57..HR seemed normal. THen it went WAY up high.. and HR started climibing but for the most part stayed normal. It was my blood pressue that went down low then up over 40 pts.

I felt nauseated..lightheaded..and knew I just needed to lay down. After resting for about 2 hours..it was ok..went and had a nice EASTER dinner.

I am now worried that I will always get this way while driving..

I mean I cannot AVOID the Sun or I cannot get home. I put the fan on high and even tho it was cool out.. I lowered 2 windows thinking the cool air would help. IT didnt seem to make much difference...or.. it was too late.

Any more ideas??

Jan

MUCH darker sunglasses! With glare protection if you can stand it (it gives me an odd visual distortion)

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Turn on the A/C. I always have a fan circulating air even in winter. Folks with masto. tend to get more heat build up in head/face. Glad you were able to have a nice meal with your family. M

Hi Miriam,

What is masto? Are you talking about MAD? I have seen people talking about that on the forum and would like to read more about it because the few things I have read seem to pertain to me. Thank you for clarifying!

~ Broken_Shell :)

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Yes thank you all for your responses. I always learn something new.

Today it happened again. And just when I was thinking that today was such a good day (symptoms wise)!!

I was finishing work..driving INTO the Sun..rather than on the sides and did NOT feel any heat..which may be the problem. I mean it was cool out..but once the SUN hit the front windshield..ALL the crappy symptoms came on. I was supposed to go straight to my daughters for Easter dinner but HAD to go home first an dlay down. I took my blood pressure and it was the LOWEST I ever remember (for me) 115/57..HR seemed normal. THen it went WAY up high.. and HR started climibing but for the most part stayed normal. It was my blood pressue that went down low then up over 40 pts.

I felt nauseated..lightheaded..and knew I just needed to lay down. After resting for about 2 hours..it was ok..went and had a nice EASTER dinner.

I am now worried that I will always get this way while driving..

I mean I cannot AVOID the Sun or I cannot get home. I put the fan on high and even tho it was cool out.. I lowered 2 windows thinking the cool air would help. IT didnt seem to make much difference...or.. it was too late.

Any more ideas??

Jan

Hi Jan,

If I go in the car when it is warm or sunny, I take ice packs or cool wash clothes with me that I put on the back of my neck and my face. I hope that might help you some too.

~ Broken_Shell :)

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Good topic.

Heat makes MOST POTS patients worse, but for me it makes me feel better - as does the sun.

As someone else here has said, if you have blood pooling in your legs and hands you are basically suffering from excessive vasodilation and heat will only make your symptoms worse.

On the other hand, patients that suffer from excessive vasoconstriction as a cause of POTS - such as those labelled Low Flow POTS or Hyperadrenergic POTS shoukd find that heat would in theory be beneficial for POTS patients.

Heat is definately not a problem for me - the cold on the other hand can make my symptoms worse at times, although probably only the raynauds symptom i get.

Another point to raise here is that people with M. Gravis suffer from relapses when they get too much sun - its a major trigger. The peripheral dysautomia version of POTS is caused by a slightly similar autoimmune attack on ganglionic receptors as that which causes M gravis, so it may not be surprising that in these patients it triggers a relapse of POTS symptoms.

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Jan, I live in Portland, Oregon, and have been revelling in our usually cloudy weather. We've recently had a string of sunny days, and I've been taking walks and doing some yardwork only to find that I feel so ill starting an hour or 2 after I've come indoors. I wear very dark prescription sunglasses (otherwise I get strong headaches, dizziness, nausea). I also have small fiber neuropathy which worsens my burning skin pain in heat. However, I sweat normally but still deal with easily getting dehydrated like most on this forum due to pooling/overheating. The ill feeling after being in the sun manifests as a headache, whole body aches, horribly fatigued, like I have a mild fever. Sometimes taking tylenol actually makes me feel better.

I have very fair skin that burns easily. Our skin is the largest organ in our body and a sunburn is basically an inflammatory response in our skin. Also people with lupus or other AI (autoimmune) disorders get fevers and other AI reactions with sun exposure. I believe there is an autoimmune component to my neuropathic POTS.

I go for walks twice a day to help prevent deconditioning, and I'm going to try to walk in the morning and at dusk in order to avoid the sun. Our house also has lots of eaves and awnings so that not much sun comes in through the windows. I hate to be such a vampire... so much for getting a little color this summer!

I wish I had some suggestions to help you drive in the sun. For me, the sun glinting off the moving cars around me also makes things worse. I try to avoid the freeways because of this, and stick to less-trafficked side roads. I also try not to drive on sunny days. I can feel relatively fine, and then yesterday I was driving on a sunny day and it felt all of a sudden like I was spinning. It only lasted 1-2 seconds, but it scares me. I try not to drive on sunny days.

Safe driving, Janie

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Jan, I live in Portland, Oregon, and have been revelling in our usually cloudy weather. We've recently had a string of sunny days, and I've been taking walks and doing some yardwork only to find that I feel so ill starting an hour or 2 after I've come indoors. I wear very dark prescription sunglasses (otherwise I get strong headaches, dizziness, nausea). I also have small fiber neuropathy which worsens my burning skin pain in heat. However, I sweat normally but still deal with easily getting dehydrated like most on this forum due to pooling/overheating. The ill feeling after being in the sun manifests as a headache, whole body aches, horribly fatigued, like I have a mild fever. Sometimes taking tylenol actually makes me feel better.

I have very fair skin that burns easily. Our skin is the largest organ in our body and a sunburn is basically an inflammatory response in our skin. Also people with lupus or other AI (autoimmune) disorders get fevers and other AI reactions with sun exposure. I believe there is an autoimmune component to my neuropathic POTS.

I go for walks twice a day to help prevent deconditioning, and I'm going to try to walk in the morning and at dusk in order to avoid the sun. Our house also has lots of eaves and awnings so that not much sun comes in through the windows. I hate to be such a vampire... so much for getting a little color this summer!

I wish I had some suggestions to help you drive in the sun. For me, the sun glinting off the moving cars around me also makes things worse. I try to avoid the freeways because of this, and stick to less-trafficked side roads. I also try not to drive on sunny days. I can feel relatively fine, and then yesterday I was driving on a sunny day and it felt all of a sudden like I was spinning. It only lasted 1-2 seconds, but it scares me. I try not to drive on sunny days.

Safe driving, Janie

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Hi,

I am incredibly heat intolerant. I too have had times where it seems too much sun, for whatever reason (heat or not) makes me feel quite sick. I actually seem to get "sun stroke" or whatever the right term is quite easily. Not sure if it is the same reaction with us, but only magnified compared to "normal" people?

But, as an idea... do you think getting the plastic that you can put on your car windows to tint them would help? If it happens a lot in the car dark tinted windows might be an idea. :blink:

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I have alway been sun intolerant. It has been a lifelong issue, long before my HPOTS diagnosis. When I was younger they called it sunstroke. I burn, get incredibly sweaty and hot, pass out, etc. my doc said that was fairly typical of my diagnosis. I stayed in Miami during the summer for several years, and it was darn near impossible to go outside without getting really sick. Air conditioning is crucial! Shade and hats and keeping hydrated are essential too.

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Hi Everyone!

Well, the joke's on me. I lived in Iowa most of my life and was extremely sensitive to the cold. I longed for the day I could move to a warmer climate. Five years ago I got a job in Tucson, AZ, and now I am incredibly sensitive to the heat and sun. I tried to go for a 20 min walk a few days ago, in the morning, with a temp of 78 degrees, and almost couldn't make it back home. I got short of breath, was trembling, and almost passed out. So much for being active outdoors during the day!

Best wishes to all & Cheers,

potsgirl

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Hi,

I also have the SUN problem and I don't drive but a few blocks away anymore . I have to wear sunglasses and if temp is above say 75 I get in and out of the sun as quick as I can, I keep the blinds closed on sunny days and keep a fan going most of the time. Getting the windows tinted is a MUST if you have to travel and you can't be fortunate enough to work around the sun. It a big adjustment I was a Floridan for about 7 years and tanned regularly and went in the tanning bed , now theres no way!!!!! Its one thing I miss the most one of those things people that don't have an illness like this take for granted everyday. Just to get ready and leave the house and not have to worry about is it TOO SUNNY is an miserable feeling, a big difference from waking up in the morning and looking forward to having a bright warm day to tan. On top of all the other bizarre symptoms this is probally my biggest one that affects me . The sun drains the life out of me and you know how many doctors I told that to???? about 24 and they looked at me so crazy like thats not possible, and they say what do I mean sunshine is healthy for you .... But as the majority of us know thats not the truth.

Mae

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I'm just weird when it comes to the sun or snow :P:(:lol:

If I go out in the sun I have problems getting breath and cannot stay out more than 30 mins at a time , if I'm lucky .And as for sweat , well I have no proper control over my body temperature at all and boy oh boy can my body tell me when its not happy .

I also have raynaud's which is not nice , I've been in Jamaica before and its been so hot at night that people have been falling down with the heat but me ????? nope, I went into hyperthermia and had to have hot water bottles and a fur coat on as my body temperature went below 80 degrees and I was so cold my teeth chattered and I was turning blue/grey , which had me ending up in hospital on my holiday ...........bit then I can be out in the winter in the freezing cold and start to heat up and I'm so hot I feel sick and dizzy and have to almost strip everything off ( well not everything :) )

I dread the summer as I seem to spend 90% of the nice days stuck in my bedroom with the curtains drawn , TV on and laying almost flat with just a kaftan for decency in an effort to literally survive this time of the year and OMG if I do to much in the sun ..............well what comes around goes around and I'm so ill the next day or two/three days afterwards , so I've learnt the hard way that summertime is no friend of mine ..................here isn't that a song ?????????

Ami xxxxxxxxxx

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