jillmae

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On 11/21/2021 at 6:35 PM, sunbun said:

Jillmae, I find that any time my body is fighting an infection, or I start taking antibiotics, it can trigger a POTS flare, which is why I take a boatload of probiotics and cranberry juice and try to avoid antibiotics like the plague unless necessary. I also suspect Candida plays a part too. Have you taken any antibiotics recently? I got palpitations and heavy sweating after taking just one dose of trimethroprim, made my gastritis flare up too. And it’s considered one of the more being antibiotics too.

I wasn't before I found out about the UTI, but I am on antibiotics now. Definitely doing better than I was, but always feel that POTS type of wonderful - still waking up from sweats, etc. But definitely less insomnia. 

Funny that you ask. I found out that I had a severe UTI last Thursday. 

I am extremely parched lately. I just tested positive for an ANA that includes Sojourns. I get my more specific ANA testing done in a couple weeks, but I am starting to suspect I might have the syndrome or disease.

I am getting the extreme twitching. It's driving me mad and interrupting my sleep. It's getting worse every day. It's mostly when I am laying down, and goes crazy as I try to sleep or am coming out of sleep.

Stopped the modafanil and still losing my d*** mind. POTS is the worst. 

I've heard a lot about the positive prognosis for those who get POTS as teens/younger adults or from viral sources. What is the average prognosis for someone whose POTS became more severe older in life 35+ and is attributed to being secondary to something like hEDS/mixed tissue disease/Sojourn's?  Still undergoing testing to confirm my potential cause(s), but I'd love to have some sort of idea of what I am up against as I get older and if this is something that continues when you are elderly.

I've started to suspect it might be being increased by the recent addition of Modafinil to the mix (been on it about a month). I am stopping it for a couple weeks to see if I improve any.

I'm losing my mind. How do you go weeks on end without sleeping well?

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Not sure who you are quoting. Personally i do shift from hot to cold. The memory foam willow helps with the hot flashes gives some relief. as far as i have seen it does not induce me getting too cold. When that happens i will just move the pillow. Yes this does interrupt my sleep. Like @Pistolmentioned a cooling fan can help during the day especially during the hot summer months. Like you this summer i went very symptomatic. Only advice is to take things one day at a time. 

Thank you so much! That was the answer I was looking for. And thank you, I am trying really hard, but this year has been one of the worst I have ever had. I I got sick suddenly overnight in Feb and learned I was going to lose my job while on FMLA (I honestly believe my illness had something to do with it). Then my disability insurance from my employer declined me (after initially approving me) and I had to hire a lawyer for the appeal, which is still ongoing. A NURSE figured out the POTS after two doctors didn't (one medicated me for an ear infection), and the cardiologisist who diagnosed me recommended a Vitamin D test (where I had a level of 10) as my primary care provider had not done one.  Turns out I have probably had POTS all my life and it just got missed all those times I came in for random problems. Guess it's not normal to sit in showers or with my legs up in chairs or all those other things that make sense now. Also learned I was hypermobile by my fabulous POTS specialist. I am still trying to work out any potential causes but I feel like I have to walk on eggshells and have ninja level medical maneuvering to actually get any help/support. And now I can't sleep and that is just too much. TOO MUCH I SAY!

 

Do you ever end up getting too cold with a cooling device? My concern is that I am constantly shifting from cold to hot and back.

The summer was completely awful and just when I thought I was starting to feel better, I am starting to feel very symptomatic. I signed up for this forum looking for an answer to this question. I am losing my mind because I am either freezing at night or too warm. Anyone think that a cooling vest would work? They seem costly and I am worried I will just end up with the same issue, but I am just getting desperate for good/consistent sleep.