Getting groggy and weak from small amounts of sunshine

[Kes]

Has anybody got any ideas what could be happening here. Things are getting weirder with me. I noticed last summer for the first time that if I had more than one session in the sun of about 20 minutes which would usually be for lunch and / or dinner then I would feel extra tired and drugged later on. So I just tended to stick to one session last summer. I strongly suspect this is related to a bad prolonged reaction to a short course of high dose steroids in November 2019.

Anyway the past few days I made the mistake of going out 3 times one day and twice another but the grogginess is getting worse and after a day skipping the sun, I thought I could try just 10 minutes this evening but have felt awful since then. It feels like I've reached saturation point or something which doesn't make much sense to me as I thought the body self regulates how it uses the sunshine so you can't "overdose".

This happened to anyone else? Anyone got any insights please?

 

[Rufous McKinney]

This happened to anyone else? Anyone got any insights please?

Maybe the Vit D dose switched up your immune system, activating it a bit, which then can led to some herxing or more autoimmune issues maybe?

 

[andyguitar]

It feels like I've reached saturation point or something which doesn't make much sense to me as I thought the body self regulates how it uses the sunshine so you can't "overdose".

This might be caused by the sunlight over stimulating your eyes.

 

[Kes]

Thanks very much to you both for your replies. I'll ponder on them...

 

[PisForPerseverance]

It's a common mcas issue, and could be a mast cell problem even if it's not the full disease. Do you know if you have mast cell issues or been diagnosed with mcas? Mcas can come on slowly with more symptoms overtime so... if you haven't looked into it, would be good to check into it and see if you identify with other symptoms as well (there's a million of them and most can be attributed to other things as well), so maybe just learning about the disease and the most common symptoms is a good way to start.

Heat can be an issue in dysautonomia. Do you have issues with heat or just sun.

 

[Azayliah]

I have this problem. No idea what causes it. Have a vitamin D deficiency, but didn't when the issue first started. I take an antihistamine daily now, it seems to help with this a bit, but I have other reactions to sunlight too--red rashes, a once had a kind of bleaching effect on my skin--so I try not to stay in sunlight too long.

I also have strong heat intolerance. I'll get groggy from a hot shower or a big meal (digestion causes the body to heat up). AC is on almost all year just so I can stay awake. So even if I don't react to the sunlight itself, I still react to the warmth of being in it.

 

[Revel]

Heat can be an issue in dysautonomia

I have ME/POTS and cannot manage more than a few minutes outside in warm weather.

I find anything that draws the blood away from my core towards the outer surface causes issues. So, this includes being outside in sunny weather, hot baths, wearing too many layers of clothing. Also, eating a large meal, which would cause the blood to be drawn to the gut.

I believe this is due in large part to being hypovolaemic.

I much prefer to be cold as I'm less symptomatic - not a problem for most of the year in the UK, but l wish I could enjoy the summer when it makes its brief appearance!

 

[Kes]

Thanks @PisForPerseverance for sharing that. I've not been aware I've had those issues up to now but I will look into it properly. It certainly could explain a few other things too. I seem to tolerate heat pretty well, just the sun that seems to be an issue.

Thanks @Azayliah for sharing your experience. It's good the antihistamine helps. Have you ever looked into MCAS?

Thanks @Revel for sharing that. Yeah that sounds tough. It's a shame you're not able to enjoy the albeit fleeting and unpredictable U.K. summers.

 

[Azayliah]

Thanks @Azayliah for sharing your experience. It's good the antihistamine helps. Have you ever looked into MCAS?

I kind of know what that is but it's not something I've looked into. I got frustrated with the negative test results and useless medical advice a long time ago, and stopped going to doctors to search for more possible causes to all my shifting symptoms. My sensitivities and allergies are a little hard to pin down... ex: I'm allergic to dust (common for people w/asthma) and cats but never have strong reactions to either; took ibuprofen one time and experienced difficulty breathing, but have taken it since and am fine; used a shampoo that once felt like acid on my skin, but it's fine now ...and the inconsistencies have made me wonder if there might be more going on.

 

[Kes]

Oh yeah I can certainly understand you deciding to stop going to doctors. Those shifting symptoms do sound unusual. I have stayed away from doctors for long periods. I'm in the U.K. A few years ago I felt I had to check out if I had orthostatic intolerance / P.O.T.S. as I had some indications in that direction. I'm now under a P.O.T.S. specialist who's been very sympathetic and tried to help but I'm an unusual case and also can't seem to tolerate any meds. However it was a godsend to have the specialist ask my GP to test me for sodium using a 24 hour urine test as I was crashing all the time badly from very minor exertion and was getting really confused and fed up with it. There seems to be a problem with some people retaining salt due to an issue with the renin - aldosterone system. I've heard from other ME folk that getting another diagnosis such as p.o.t.s. has really helped them to get help that has been ultimately beneficial to their M.E.

 

[Azayliah]

It's great that your specialist was able to find a way to help even with your med intolerance. Are you retaining too much or too little? I'd guess too little, as I have an impression that I've seen posts from others with ME about that.

Don't know if I have a sodium issue... like my reactions to other things, it's sometimes too little, sometimes too much ...but suggested POTS to my GP in April. I did a poor man's tilt-table test and nearly blacked out; at 5 minutes I had 142 bpm and 160/105 bp, and they both kept climbing. After changing a few variables I tried again, and got less severe but still not great results. Since my bpm skyrockets just before a migraine, my GP thinks the migraines could be causing the heart rate issues and wants to treat those first. I'm not sure it helped my heart rate, but at least my head isn't pounding every day and the light sensitivity went down.

I can't remember if I had the POTS-like symptoms when my sun sensitivity began, so I'm not sure it's linked. But maybe it wouldn't take an allergy or other condition to make sunlight problematic for people with ME. Exposure to sunlight can cause inflammation (from UV/sunburning), initiates production of vitamin D, diverts blood from the brain to the skin (for cooling), and causes dehydration/sweating... so even if you are doing nothing but laying in the sun, your body is exerting itself.

 

[Alvin2]

I overheat easily so sun or sauna or hot car does me in.

 

[Kes]

Hi @Azayliah, yes, I mean it was probably part of his standard protocol but the timing was perfect for me and has helped me massively to not be so sensitive to crashing all the time in that way. Yes retaining too little sodium.

Glad your treatment for migraines has helped somewhat. Good luck with investigating the other stuff. It can be worth, if you do get the go ahead to get a recommendation as some specialists are better / more helpful than others.

Thanks for sharing that @Alvin2

 

[Alvin2]

Thanks for sharing that @Alvin2

For sure. My point is that it might not be the sun but just heat. I am intolerant of high temps no matter the source.
IIRC common in ME patients.

 

[Kes]

Thanks Alvin2, yes, I understand. I had considered that but with me, I appear to tolerate the heat fairly well. It just seems to be the sun that's causing me these issues.

 

[Alvin2]

Thanks Alvin2, yes, I understand. I had considered that but with me, I appear to tolerate the heat fairly well. It just seems to be the sun that's causing me these issues.

You got me on that one.
I wonder if a tanning salon would cause you the same issues, helping pinpoint the cause.

 

[Pyrrhus]

I know that sun exposure triggers increased metabolism in the skin, in order to repair UV damage, synthesize vitamin D, and probably other processes as well.

Perhaps this increased metabolism might count as a form of metabolic "exertion"?

 

[Azayliah]

I've been reading up on periodic paralysis, as there may be a link to some of my symptoms as well as some possible symptoms of it with my mom and her sister. I'm pretty sure I read somewhere that vitamin D causes an increase in potassium levels--and/or that a deficiency causes a deficit--so it sounds like there may be kidney involvement, too.

 

[uglevod]

Immune activation effect - check out for the followup weight loss(like during sleep). Especially effective if you have low levels of D25.

 

[Kadar]

@Kes
@Revel
@Alvin2
I experience that right now. My thyroid seems to be in hyper status - I'm nervous, always POTS, heartbeats, sometimes experience inflammation, can't handle heat, sun, cold. Supplements useful to calm thyroid down - vitamin A, B1, copper.

VITAMIN A very useful! I have good experience with it right now. (I don't recommend synthetic forms because they seem to make it worse, I recommend to use only cod liver oil or retinol direct from fish liver without any acetate/palmitate) . Vitamin A uses zinc up, so I don't forget to include it. Vitamin A also is a synergist to b1 which calm down heartbeat, regulating stress reaction (sunlight and heat are stress too) and sugar, which is a stress too.

Zinc, Molybdenum, Manganese, Copper levels are important to tolerate sun. By the way, they all are used/regulated by vitamin A.

After using lots of A I noticed it stopped working. I stopped A and begun to take molybdenum because molybdenum make vitamin A active. I added zinc because vitamin A needs lots of zinc. I started experience the same effect as if I take A itself. Like molybdenum activated all inactive A. Another A cofactors are b2, b3, b6.

Sorry it's kind of chaotic info I wrote, maybe not very scientific, I'm just happy to share my super positive experience with vitamin A for sun/heat intolerance