kclynn Posted June 28, 2011 Report Share Posted June 28, 2011 My son has been having a great summer, symptoms are way down, BUT he has been waking up a lot lately with those excessive sweats and total body fatigue/exhaustion and now you can add muscle pain to it. His muscles in his body and his arms hurt and ache! Then 10 minutes later he gets very nauseous/stomach upset. Anyone know what is happening with his body that causes this symptom? Any meds that can help to ask the Dr. about? I hesitate to add meds when everything else is going good but the episodes are increasing right now. If this keeps up he will start getting anxiety over going to sleep (it has happened before). Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted June 28, 2011 Report Share Posted June 28, 2011 I had severe, soaking night sweats in 2008-9. I have read this is a symptoms of MCAS. I don't have them right now (no idea why, they stopped even before I started on MCAS meds) but I have read that taking ibuprofen before bed helps some people with this. It might be worth a try, anyway. Quote Link to comment Share on other sites More sharing options...
kclynn Posted June 28, 2011 Author Report Share Posted June 28, 2011 I should add, I believe his BP drops during these episodes. I caught a couple of low readings (79/34, 75,39 and several just a little higher 70's over 40's) last fall. I haven't been able to take his BP because it causes him pain and distress and it doesn't really matter now that I know that is a probability. I had taken his BP many times previously and not gotten those readings so I think it is a brief occurance then raises back up. Quote Link to comment Share on other sites More sharing options...
Godsgal Posted June 29, 2011 Report Share Posted June 29, 2011 I was wondering about the mcad/mcas thing as well because I have gotten that as well. And then I saw Sarah4's post. Does he have any flushing? Any hives, rashes? I have some serious muscle pain and it seems to have gotten much better since starting the mast cell meds. I'm starting to believe that mast cell activation occurring with POTS is not as rare as doctors think it is. Myself and 4 other women I have met on here that I know personally outside of dinet all have it and that's not a coincidence. I have heard that histamine levels are at their highest in the middle of the night...around 2 or 3 a.m. That's what they say on the mast cell forum. I will tell you that long before any doctor had an inkling that I had mast cell issues I started the low histamine diet and that helped me a lot. I struggle a lot with low blood pressure so I know it's miserable. I wish I could tell you more. I don't have any clue what meds he is taking but perhaps he could take an antihistamine at night before he goes to bed that would not interact the others just to see if he got any relief???Hope he feels better soon.... Quote Link to comment Share on other sites More sharing options...
kclynn Posted June 29, 2011 Author Report Share Posted June 29, 2011 He does get flushing, rashes, hives, sometimes a lot, then he won't have any for awhile. He does take a clariton in the morning. Maybe he should take it at night? His arms were sore the next day, even. He has started exercising and lifting weights before bed (doesn't work for everyone but he likes it). He did NOT exercise the last two nights when he had the sweat episodes. I think there are times he did exercise and had them though, so don't know if there is anything with that or not. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 29, 2011 Report Share Posted June 29, 2011 I have this problem too. I'm one of those people that swing go up hyper/tachy on standing and go down hypo/brady at rest. It got was when they had me on atenolol to lower bp during the day. It lasted to long and caused ever lower BP. When I would drop that low I'd wake up sweating, I think it's the bodies attempt to keep your blood moving because I would be rigid as a board all muscles contracted. Since then I get them when I have an underlying infection going on. I have small fiber autonomic neuropathy and a primary immune deficiency. Does he ever feel like he has the flu or stomach bug or fighting something off but no real fever? I also think (N sweats) this can happen if glucose is dropping or rising during sleep. My glucose though normal goes up during sleep, the opposite of what it is supposed to do. So a few things for you to ponder, mast cell with the flushing and hives and such could be it too. Quote Link to comment Share on other sites More sharing options...
Godsgal Posted June 30, 2011 Report Share Posted June 30, 2011 Hi KCmom, I'm concerned for your boy with the symptoms he has and another condition that is causing his POTS. Potentially a mast cell activation problem. Finding the root cause of our POTS symptoms is such a wonderful thing because then we can try to treat whatever that is and get relief hopefully. If he has a mast cell problem one claritin will not touch the symptoms. In fact, he would need two a day.....one in the a.m. and one in the p.m. PLUS an H2 blocker twice a day and potentially others. But I'm not a doctor and I'm just telling you what a person with a mast cell problem would need. Are you able to pursue some testing for him? I'll tell you don't listen to doctors because I have had at least 10 tell me I didn't have it when I did. It's very hard to get a diagnosis but it is possible. And there is a link between POTS and MCA and within my own personal POTS circle that I have met locally I can't believe how many of us have it. I think it's a lot more common than doctors think and missed very often in the diagnostic process. Prayers and thinking of your son today,Jared Quote Link to comment Share on other sites More sharing options...
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