erickamcc0523

I haven't found any salt tablets, but today I have just picked up some electrolyte tablets from a natural health food store near me. There is 150mg of sodium, along with 25 mg of potassium, 25 mg of magnesium and 50 mg of calcium per each tablet, which it's suggest that you take 2 each a day... I'll be taking more than that, though. They fizz in your mouth over a 5 minute time period (I just kept taking sips of water whilst holding the tablet in my mouth, and swallowing when the concentration got really high). They don't taste that bad, and I think they make me feel better. I also picked up some gel electrolyte packets made by PowerBar that has 200 mg of sodium and 20 mg of potassium. Those don't taste so great (I've had 3 of the flavors so far, and can just tolerate them), but as it's a little less than 1.5 oz, I can handle that better than drinking a whole thing of Gatorade. With the other supplements, I have to drink alot of water, but I have to do that anyways, and with the extra sodium I am retaining water better. Another great thing about the tablets and the gel is that there is less calories than Gatorade (and with the tabs, it is sweetened by stevia, which I can tolerate better than other artificial sweeteners), 10 cals per the tablets and 110 cals per the gels.

I don't know how to deal with them... but I get really shaky episodes, usually accompanied with numbness of my mouth and throat with shortness of breath. I usually get shaky before a big POTS crash, though it has happened before with smaller crashes. Just last week at church, I had to stand for awhile, but got really shaky so I sat down, yet I was really shaky even on the 45 minute drive home. It seems to come in waves, like I can't stop shaking for a few minutes, then it'll calm down for a few minutes, and then gets bad again.... etc. Sometimes I'll have a myoclonic jerk thrown in for good measure.

I am on the verge of getting a sinus infection... though I am not quite ready to go for antibiotics (the side-effects are worse than being sick, and I only take them as a last resort), I was wondering what OTC remedies have helped others with POTS that doesn't cause such horrible side effects. I have been using a netti pot, which has helped some, but it isn't enough. I haven't taken any cold medicine since my POTS got really bad after my knee surgery, and I was wondering what everyone has taken that helps, but doesn't kick the POTS into high gear.

Sinus headache along with the neck pain (or just the sinus headache by itself) makes the POTS much worse... I am fighting off a sinus infection right now, and I can barely stand up without feeling like I'm about ready to go back down.

I thought this might go here, since I know that for most of us, electrolyte ladden drinks are our salvation. Thing is, I don't like many of the Gatorade/Powerade flavors, so I was checking to see what everyone else's is, because perhaps I might find one or two that I like that I don't have to force down so much. I used to like the lemon/lime flavors, but after having 5 years of undiagnosed gallbladder problems and many days and weeks that Gatorade was the only thing that I could keep down, I'm not so fond if it anymore. Also, when I was a kid, I was sick alot, and most of the cough/cold and allergy medicine was grape, orange, or cherry flavor, and I can't stand those, either. So, does anyone have any suggestions for me to try?

I do have this great light-weight fedora that except for the worst days, I have no problems wearing. And I have a smaller lace chapel cap for when I can't wear the full veil (which is almost the length of a manatilla). I can only have my hair up in a pony-tail for maybe an hour at a time (and that's pushing it), which kinda *****, because I now have long hair for the first time in 4 years, and it seems as if I can only wear it down... At least it's pretty and shiny, so I don't mind too much.

Oh Gosh Yes!! I get this, too! Headbands are out of the question! Some hats are, too... I have this Greek fisherman's hat that I absolutely LOVE, but can only wear for small periods of times since I get a really bad headache. I also have 3 or 4 headbands with a very long fabric piece attached to it, so it looks, when all it said and done, like I've tied a long scarf to my head, but the preassure on my temple area from thoses is WAY too much to bear. There are some days that my lace chapel veil for church is too much for me.

Yes, chest pain can be a part of dysautonomia (I have at least some tightness and pain every day, in varying degrees). If this pain that you're having is the same as what you've experienced before, I wouldn't be too worried about it, but if it's worst, or persistant (especially if the chest pain normally comes and goes), I would get it checked out, especially since you've had a recent illness.

I have been told, too, that chronic severe pain can lead to depression, as it leads to a depletion of the seretonin levels in the brain.

I, too, have horrible neck pain, and that when it's really bad, so is the POTS. Sometimes it hurts to even drive (as I have to look around, especially when I'm making a lane change), and when I do something to make the pain flare up, then usually my heart rate goes up too. Though I haven't been diagnosed with EDS, I suspect that I have it (especially with alot of the symptoms I've been having), and will be making an appointment with a geneticist soon. I pop my neck (and about 20 other joints) quite a bit... I know that isn't the best thing to do, but it relieves that pain somewhat... from excrutiation to just severe.

I don't think this has anything to do with anything, but I have been shown to have an almost 2 cm cyst on my pineal glad. From what I've heard, most people have one, though not as big as mine. I'm too tired to fight that.... I'm trying to tackle illnesses one at a time. Next stop, testing for EDS.

I think that the vision being fixed in one spot is the fact that my eye muscles just are too tired to move. I have been screened for seizures (I have occasional myoclonic jerks) and there was no abnormal readings on the EEG and my MRI and CT scans both were normal. I will follow up if it gets worse.

There is a facebook group declaring that June 6th is a day of visibility, for not only POTS, but for CFS, Fibromyalgia and other invisible disorders. Here is a link to the group. Perhaps locally, one could find other people suffering from these illnesses and band together to spread awareness... take out newspaper ads? I'm not sure of anything else right now, but I'm sure others have some ideas, too.

I would report them, and if your MD is willing, I would have him write a letter describing POTS and about how the syncope episodes should be managed and treated. Start with the nursing supervisor, and go all the way to the top if you have to. These "nurses" need to be at the very least reprimanded if not fired and have their license taken away from them.

Thanks for sharing the love everyone! I'm so glad that I have found dinet, because I honestly don't know how I would have survived being diagnosed with POTS without knowing much about it except that it's debilitating and "take two pills and call me in the morning". I am glad that everyone posts suggestions of what works for them so that I can try them (though not all of them have worked yet, I have found that I won't be without Gatoraid ever again!) to relieve my symptoms... Hopefully I'll find some tricks that work for me to be able to share with others. Again, I LOVE YOU GUYS!!!! <3<3<3<3<3<3

I am so sorry that you are going through this right now... I had to bury both of my grandmothers (and the last of my grandparents) this past year within a 22 day period... I know how difficult it can be with grandparents. I can't imagine how much more it is with parents. Please know that you and your whole family are in my prayers. Please do try to get her into hopsice! They were a wonderful resource to have when my paternal grandmother passed... they sent out a chaplain and a social worker to us to talk with the family (my grandmother wanted to stay at her home, and my mom, aunt, and I were there the past 2 weeks to help). There are also many other benefits of hospice care I'm sure your social worker can inform you of. Also, you DO NOT have to purchase caskets or urns from the funeral home itself (at least here in TN... perhaps the same is true where you are)... you can buy from the companies directly, and at times, at a significantly lower cost (the same exact style). As far as the details of the funeral itself (the music and scripture, the pastor you want to officiate, location...etc), you, perhaps with the help of your siblings (to echo a previous poster, call them), go ahead and decide those things as soon as you can. Go ahead and find a funeral director that you can trust and work with and inform him or her now of the situation with your family, and he or she might be able to help you with those things, too. Again, please be assure of my prayers for you and your family during this time. Dona nobis pacem!

POTS, Together We Stand: Riding the Waves of Dysautonomia, written by Judi Epstein Rhum, should be released this spring.

I know that EDS is genetic, and as far as I know, none of my blood relatives have been diagnosed, or are even that hyperflexable (I have a niece who has 2/9 of the Beighton score). However, I have suspected for the past year or so I might have EDS... Though my skin isn't excessivly flexable, I do have all 9 of the Beighton score, and since I've been diagnosed with POTS (I can't quite remember when I started having symptoms, but I can't quite remember when I didn't have symptoms), I have decided that perhaps I need to follow up on the EDS. Is it worth a shot being tested for it? What does a test for EDS entail?

There is a member who is on the facebook POTS group who is working on a book about POTS... I am unsure when it is going to be out (or even the title right now... darned brain fog), but I'll see if I can't find some more information and post it here.

I can also give you a name of a cardiologist (mine) in Knoxville, TN who might work for you.... it's a bit of a shorter drive (though it's still about 4 hours away) than to Cleveland, but he might help... I also know there is a neurologist here in Knoxville that treats POTS and might work out for you. Please don't give up!!! I know you have to be exhausted from trying different doctors (I know the exhaustion myself), but unfortunately, with having such a rare condition, you have to become an advocate for yourself, and to seek out different doctors until you find one who will actually listen and help you and not just say "let's wait and see". I'll pray that you will be given the strength and stamina to fight for yourself and find relief from your symptoms!

Thanks for sharing this... I have been thinking about getting a pair myself, and I'm glad to know they have helped you. I have a pair of vibram five-fingers, which work great (I usually get better circulation when I'm walking bare-foot, and vibrams simulate that) but only when it's warm outside... They don't wear so well in the ice and snow.

For our UK friends, is Poweraid available? I just googled and saw that Poweraid is the official drink of English rugby teams, so that might be available there. Poweraid is the Coke equivalent to Gatoraid (which is made by Pepsi... or is it visa versa???).. in any case, Poweraid might be a good option for you all to try. Also, might "fitness water" be available there? Here, it's water with just a little flavoring, and added electrolytes and some vitamins, mainly B vitamins. There usually is some a fairly high sodium content. Also, another thing that I really like is Ramen noodles. My dad, who has high blood pressure and various other heart problems, has been banned from eating them, but for me, there is enough sodium, that if I eat a packet of those and drink at least 32 oz of water, it usually will correct any dehydration (for at least a few hours... I get dehydrated really fast, so I have to be very vigilant). You mentioned that your symptoms are worse around your period... mine are too. In fact, I learned how to chart my cycles with my cervical mucus (I think that's the Billings method.... or maybe it's Creighton. I am having a brain fog moment, so I can't remember exactly which one), and when I first started having symptoms, I was convinced that I was having some hormonal problems, even though my bloodwork was normal, but I suppose like with dr's offices checking pulses only when someone is sitting, my hormone levels weren't checked the right time of the month. Perhaps I wasn't doing it correctly, but luckily I know a few NFP (natural family planning) coaches at church who might be able to help me better chart.

Sometimes, I get these "episodes" (for lack of a better word) where, though my vision will really blur out (it's like I don't have my glasses on) and my eyes will focus, as best as they can, on one particular spot and it's like I can't even move them. Usually when this happens, I will have some tingling, either on my limbs, or sometimes in my mouth and throat. It sort of feels like the very early stages of presyncope.

I can't believe that I forgot about Hotties (they were Hot Hands for me)!!! Those were the only way I survived 4 years of parade seasons (and sometimes marching band competitions, especially those in late October), marching at least 2 miles for each parade in near or below freezing weather! I must go and invest in a few cases of them, because it looks like I may need them again.

I used to, before I started having really bad POTS symptoms, smoke pot recreationally on a fairly regular basis with fairly little bad side-effects. But since my symptoms started worsening, the few times that I have smoked it, I have nearly passed out (the vision problems, ear ringing, tingling over my whole body... etc) and have generally felt like crap the next day and have had to sleep alot, so I won't use it again. I do wish I lived in a medical marijuana state, because I wouldn't mind trying an Indica strain of pot to see if it would help the symptoms, but I can fully attest that the Sativa makes it 100 x's worse.