Anyone Know Why I React This Way To Sunlight?

[SoliDeoGloria]

I've had a gradual onset of POTS symptoms over the years, and I believe I may fit into the catagory of hyperPOTS (although untested) based on my bp and hr readings. Along with the POTS symptoms, I've always had a negative reaction to sunlight that has worsened as my POTS symptoms have progressed. For starters, my whole body feels like electricity is running through it as soon as the early morning sunlight comes in my bedroom window. And if I spend any amount of time in direct sunlight during the day, I feel sick, have lots of joint/muscle/bone(?) pain, hr goes way up, bp drops a little, pulse pressure narrows quite a bit.

I'm careful about hydrating, so I don't think that's the issue. And I just barely started taking meds (I'm on propanolol) so it's not a side effect of that.

On rainy/cloudy days I feel much better than on sunny days. My POTS symptoms have always been worse in the spring/summer/fall and waned each winter. Although I can get the same bad reaction if I go out on a very bright,cold winter day with lots of reflection off of the snow. I live in northern new england so it's not too hot here and the sun is not extremely intense; but still the sunlight affects me. At times I have also gotten a violent reflux reaction and hives from being in the sun. Also, my skin feels like it's burning if I'm in the sun for just 10 minutes. I worry about missing out on Vit.D benefits because I'm avoiding the sun most of the time.

Is this a part of POTS or is this something else?

[Katybug]

There was an episode of Mystery Diagnosis where a youn boy would cry and cry when his parents took him to the pool. It spontaneously stoppe then re-occured when he was in grade school. It was a disease that caused him not to be able to be exposed to the sun. I'm sorry but after looking online for a while, I am not able to find the episode, but you may be able to find if you spend some time looking for it. And I can't remember the name of the disease. Your description of your symptoms sounds very similar to what he described (he was a teenager when the episode was filmed.)

[Tachy Phlegming]

Wasn't that a porphyria show? Haven't a lot of people on here been checked for that?

[Chaos]

I have a friend with mastocytosis who can't be out in the sun and has similar reactions to what you're describing. Have you had tryptase levels checked?

[ramakentesh]

many autoimmune disorders are worsened by the sun or sunlight exposure. Also some POTS patients report a daily cycle where POTS kicks in exactly like you describe in the morning.

[LindaJoy]

As I've gotten worse in my diseases (I have Addison's, Dysautonomia and possible mast cell, plus others--see below), I have a terrible reaction to the sun, especially on hot and humid days, and in Ohio, we have quite a few of those in the summer. I have what you describe to start--a feeling of electricity through my body. Then, I feel very anxious. I start to sweat and feel horrible. I have to go inside and cool down. I just started doing this last summer, and that was the first time I got sun poisoning, too. Had no idea what it was. I've been a "sun worshipper" for years, usually sporting a good tan, but last year, my body changed and I cannot tolerate the sun at all.

I don't know what is causing mine, either. My mom is the same way. I have been tested for porphyria a number of times, so it's not that. I have no idea, but I'm sorry you are experiencing it, as well.

If you or anyone else finds out, please post here. I would sure like to know what this could possibly be, as well.

Lindajoy

[POTLUCK]

I am certain that the Sunlight ( directly ) makes my symptoms better. Cloudy days are worse. I think at night after normal sunlight hours I am also better. It may be related to a newly discovered type of photoreceptor in the eye called the ipRGC ( intrinsically photosensitive Receptor Ganglion Cell) - can be found in Wikipedia. This cell is not used for sight for the most part, but picks up light just like the Rods and cones. It controls circadian rythms in the body via a part of the brain in the hypothalmus. ( Superchiasmatic nucleus ) (SCN)

These circadian rythms affect the autonomic nervous system so there is no reason to think a problem with this system could not affect everything affected by the autonomic nervous system ( i.e. those problems seen in POTS ) I do not have a clear paper presenting sunlight as having an effect on POTS. However, they have known about Rods and Cones for hundreds of years but only discovered ipRGC cells in the last 10 so it is not hard to believe they will not clearly establish this connection for years.

I do have papers on the circadian rythms of NE and Epi and on the effects of the sunlight on ipRGC cells on the SCN nucleus and via this on the autonomic nervous system and circadian rythms of every part of the body. ( The SCN is the brains, and thus the bodies, master clock. )

I just mention all of this because I have spent a lot of time trying to understand my own symptoms which are strange to me in that I am helped by sunlight.

The ideas suggested above seem like important things to rule in or out if possible via lab testing etc. through your doctor.

[SoliDeoGloria]

Thanks everyone for all of the thoughts and advice!

No, I have not been checked for porphyria or mastocytosis. I'll certainly be discussing that with my doctor.

I was tested for lupus three years ago. My ana levels were normal. I'm assuming this means I can rule out anything autoimmune, right?

I've been supplementing with Vit. D but I don't know if I'm taking too much or too little, so I guess I should have that checked too.

I've been desperately trying to come up to speed with all of you knowledgeable people. I was a Biology major in college, but that seems like ages ago and my knowledge of physiology is pretty rusty now. I think that Potluck has brought up some interesting points. I have often wondered if the sunlight is triggering a NE response that is antagonizing my situation. I have also wondered about the connection with my eyes. I have transition lenses on my glasses because the light not only bothers my eyes (which are blue and very sensitive), but it also seems to add to my overall symptoms. Also, when I'm having a bad POTS day, the first thing I do is lay down and put a dark towel over my eyes.

Potluck, could you post the link to the article you mentioned?

[Christy_D]

Direct sunlight also makes my son feel sick. In a car he moves around in the back seat to the shady side to avoid getting sick. He has MCAS and POTS. Too much heat and sunlight has also always made me feel unwell and gives me terrible headaches.

Before this whole thing started for my son, he played soccer year round and baseball. It got to the point where he could only play in games that were scheduled in the evening after 7:00 or he would get sick during a game. Of course, he can no longer play anything now since he is so sick.

Christy

[issie]

I thought I might be right about this and did a search. It appears that UV light can cause a mast cell degranulation. May explain alot for us MCAS people. I've never done well in the sun either - it makes me feel sick. But, I need the sunshine and the light - for emotional well being - but, sitting or lying in the sun is not something I've ever wanted to do - even as a child and growing up on and around the beach. I love the water - but, I'm not a sun worshiper - I don't "bask in the sun".

http://www.ncbi.nlm..../pubmed/7356907

I found a lot of blogs and masto web sites that people were talking about the sun causing them issues with degranulation of mast cells. So, guess it's a problem with a lot of people with MCAS. Didn't find a whole lot of studies on it, however.

Issie

[Frugalmama]

I am also been worked up and treated for mast cell disease, and I can't handle direct sunlight at all. I live in Winnipeg, and even in the dead of winter when it's -30 and there is direct sunlight on me, I become extremely symptomatic. I also have a huge problem with my eyes and sunlight, but I'm not sure if it's part of MCAS, POTS, or migraines

[blueskies]

i don't like the sun. I try to avoid it at all times. I just feel this avoidance thing that has to do with my skin. When I go out and am in sun I wear hat, sunglasses and long sleeves. When I get hot, in summer,and have to strip down to a t-shirt and I'm in the sun I just don't feel well. Can't explain it very well. Plus with my migraines I'm intolerant to bright lights. I wear my sunglasses whenever I go out. But that means I'll have them on inside a mall too for example. Anywhere there is too much lighting.

I wasn't like this with avoiding sunlight when I was young. I used to love it.

It's winter in Australia now and I'm so relieved.

I'm really not sure if it's just the sun or too much light generally. I usually have the shades down at home, even when windows are open. And don't use overhead lights at night. Only soft lamp light.

[lissy]

I was able to sun-bathe, tanning bed and enjoy the sun like most, until I got sick I began getting a itchy rash from the tanning bed and thought it must be chemical related...And after that I was too ill to think about being outside, last summer I was able to sit out in the sun even got a nice tan but this year I got that itchy rash again that lasted a few days and it hasn't happened again yet. So I looked possibilities up and found Polymorphous light eruption for the itchiness and it seemed to fit my case.

Now with the general unwell feeling from sunlight absolutely!!! I can't go out with sunglasses or I will battle a migraine, I also get a unreal feeling like depersonalization but its induced by outside especially when the sun is bright?.....And it goes away once I come back inside.

Another thing when I became so ill I kept telling doctors "The SUN makes me so sick" Like its draining the life out of me and it was similar to menses....the exact same feelings.They just looked at me crazy!

[POTLUCK]

SoliDeoGloria

I am sorry I missed the question earlier.

I am not sure which article it was. I will post these 3.

http://www.ncbi.nlm.nih.gov/pubmed/3666056

http://www.ncbi.nlm.nih.gov/pubmed/465621

http://eurheartj.oxfordjournals.org/content/early/2010/03/09/eurheartj.ehq069.full

Well this Melatonin one is interesting and relates too

http://www.ncbi.nlm.nih.gov/pubmed/16682846

I have a MAJOR interest in this subject as sunlight relieves my symptoms better than anything and no doctor even tries to explain this except for this Seasonal Energy Syndrome/Temporal Lobe Epilepsy diagnosis I recieved.

[SoliDeoGloria]

Thanks for the links, Potluck. The third article is particularly interesting -- validates one of my husband's theories. Can't wait to see his face when I show him the article : )

Lindajoy, ChristyD, Issie, Frugalmama, blue, and lissy, I'm so glad to know that I'm not the only one experiencing this reaction to sunlight. I'm going to be pursuing this with my neurologist and cardiologist, so I'll let you know if anything comes of it.

Best wishes all!

[POTLUCK]

The third article presents a different way that sunlight could additionally be affecting POTS in that it affects nitric oxide. There have been many discussions on Dinet forum about nitric oxide and the effect on POTS. I found this very interesting.

The sun could easily have a reverse effect on a person depending on whether increasing the NE and Epi makes them feel better or worse. Thus it could make one person feel better and another worse.

I do not notice environmental effects much on my illness. The sunlight is one very clear cut effect. ( This is why I chose my picture ICON ) I always feel better in the sun and worse in a very cloudy period, and it is a very rapid change. Hours, even minutes, not days.

[issie]

I scanned that quickly - but, from what I remember - melatonin lowers NO. That would explain why I have such a horrible reaction to melatonin. I tried 1/2 of my dads recently - (it helps him a whole lot) - and was up all night nervous as a cat and hoping it would hurry up and get out of my system. It was awful. Same thing happened when I tried one of my friends about 8 years ago - same reaction. So, that's not for me. Nice to be able to know why.

Issie