delphicdragon

Maxine- It's usually really rare for any illness to affect both the gastrointestinal track AND the respiratory track. I'm no doctor, but I think your sister managed to catch a stomach thing AFTER getting a respiratory bug. Which stinks in and of itself. As long as you stay away from your sister and take the necessary precautions you should be fine. Working with doctors everyday there are very few things that can cause BOTH gastro issues and respiratory issues and all are very very rare. Perhaps your sister took some antibiotics for her cough and had a reaction to that. Antibiotics can cause vomiting and diarrhea. So can stress and not eating properly. Try not to worry so much. (I know, impossible) but the likelihood of the gastro and the respiratory being connected is very slim. Sara PS- I've also found the CVS brand of Emertol works well. Try taking acidophillus as a prophylactic (or eat lots of yogurt). The good bacteria should get rid of any bad stuff lurking in your stomach/ intestines.

So, I managed to catch a cold. I have a runny/congested nose, clogged ears, a cough and a slight fever (100.4 max). When I gave in and went out to get a pizza, I noticed that I was feeling better after being out, so I took my temperature. It went DOWN to 99.3 from 100.3 about 15 minutes before. I didn't drink anything cold, so I'm very confused. After waiting about 30 mins sitting in the house, the fever was UP to 99.8. When I'm sitting still, I have my fever, when I'm up and moving it's gone. What's going on here? Any one else? Is this my autonomic nervous system forgetting how it's supposed to act when I'm sick? Sara

Hello Michelle and Ricky- Welcome to the board. Ricky, you're amazing in how you take care of your wife! Michelle, I hope this post finds you feeling better. It's quite common, at least for me, to get symptomatic after eating. I find that eating small meals helps a lot, and they need to be balanced meals as well. I like to joke that I eat like the Hobbits in Lord of the Rings (Breakfast, Second Breakfast, Brunch, Lunch, Afternoon tea, Supper, Dinner, etc) That has been the biggest help for me. I used to trigger after supper because it was a big meal, with feelings of heat, nausea, diarrhea, tachy, etc. It wasn't pleasant. Sadly, this type of reaction is normal for a lot of us on the board. Doing too much can also trigger the stomach "attack" that you described. I know you may be feeling better on some new medications, but still take it slow. Overdoing can put you right back into the POTS hole. Maybe just wash up and skip the shower? Standing for a while in heat does trigger POTS for me, and after a stomach attack I'm very sensitive to ANYTHING for a couple hours. I can't give advice about Florinef because I can't tolerate it. I'm strange in that Sudafed helps me by tricking my heart into thinking it needs to beat slower. Most people can't tolerate Sudafed, but are ok with Florinef. I was swelling up very badly on Florinef and that's a troublesome (and I've been told dangerous) side effect, so be careful about that. If you're on a high dose it's helpful to monitor your weight so that you can modify your dose if you gain too much water weight. Take care (both of you) and feel better soon! Sara

I take NuvaRing and I've been liking it so far. I tried other birth control pills and was horribly sick on them. NuvaRing is supposed to just have a local effect, and I don't get the systemic symptoms, so I guess it's doing what it is supposed to. Sara

My baseline, sitting, is around 100. I know I'm in trouble if the sitting heart rate is over 130. When I had my tilt, I was very nervous, so my baseline was 120, laying down. Didn't stop me from spiking to 150+ when tilted. Sara

Wondering if this is because when you're putting the color in, your hands are above your head? That can cause a POTS attack for me. Makes washing my hair quite difficult. I've never had a problem with hair color, but I tend to only use the semi-permanent stuff and I get someone else to apply it. Perhaps the permanent hair color is too strong for us? My mom (who doesn't have POTS) has a reaction to permanent hair coloring... Sara

Your stomach might be upset because of the compression stockings. I personally can not have anything tight around my stomach or I get pain along with bloating and gas. It's just easier to wear loose clothing. Have you thought of pulling the stockings down a bit, so they rest on your hips? I find if I do that, my stomach is happier. Sara

Today I've noticed that when I stand up after having sat on my legs for a while, my legs seem to go out from under me. This is strange. I've had it happen when my legs have the pins and needles type feeling, but this time there was no pins and needles feeling. That did come later. Do you think I just cut off blood flow and that caused the strange symptoms, or should I be worried and contact my neuro? Sara

Ortho Evra is known to be pretty strong. I take NuvaRing, but before that I had a lot of trouble with various types of BCPs. I tried Seasonique, OrthoTriCycline and a lot of others I can't remember. Make sure you contact your Gyno soon, but your Gyno may just say you have to wait it out. That might be what you need to do, if you can, however it sounds like you can't. Take your blood pressure and see what it is doing. BCPs can raise your blood pressure. The nuvaring has done that for me, and it's helpful. Sara

Wait a second, you're not supposed to just jump right into dreaming? I didn't realize that that wasn't normal. I can take a 10-15 minute cat nap and wind up dreaming... Maybe I should bring this up with the doctor?? I tried to have a sleep study done once, and I couldn't fall asleep. (The bed was really hard and the sheets were scratchy and I couldn't handle having an electrode attached to my toe). They let me go at 3:00am and I went back to my apt and was immediately asleep. Sara

Welcome to the Forum- I too get the chattery teeth, nausea, diarrhea combo when I have a bad flare. It usually starts with stomach pain for me. If I can lay down IMMEDIATELY sometimes I can short circuit the full autonomic response. A lot of your symptoms sound like POTS. I'm 24 and have been getting these types of symptoms for years. The stabby head pain is called an ice pick headache and it's common in people with migraines. I hope that you feel better soon and gain some function back. I had been very sick for a while and am now working a 9 to 5 job and am mostly able to do what I need to do to function (knock on wood that I can keep it up). This disease waxes and wanes - enjoy the good times and know that they always follow the bad. Sara

When I first got sick and was trying to figure out what was wrong with me, a prominent cardiologist did a tilt table - that was positive - and then gave me some beta blockers. When I went back to him because I was leary of taking the betas (as I have asthma) my positive tilt was suddenly negative and I was "deconditioned". He prescribed exercise and said all my symptoms would go away if I would exercise more. I have EDS. I have never been able to run marathons or do physical activity that most other people do. I have at one point helped put a roof on a house, built a shed, etc. I hike whenever I can (and it's not too cold). I'm on my feet most of the day at work. I'm not deconditioned! Doesn't mean I don't have POTS. Sara

The difference between the two numbers is called the pulse pressure. A narrow pulse pressure (when the numbers are close together) means that not enough blood is getting where it needs to go. 90/60 is a better reading than 100/80 (30pts verses 20pts). I'll go with wikipedia as it's the least alarming... http://en.wikipedia.org/wiki/Pulse_pressure Mine's gotten to 16, I think. I was feeling like ****. Elevating my legs helped bump it up as did drinking a lot of water. Sara

I took a bus to visit a friend in New Haven today and purchased my ticket (there and return) before 10 am. Now this isn't a HUGE trip for me, but it's a trip none-the-less. I took the bus because my hip has been hurting me lately and it's nice to have someone else drive. The trip down was fine. The trip back, less so. The bus driver let too many people onto the bus so I was forced to STAND the entire 45 minute drive home, ON THE HIGHWAY, getting bumped and jostled about. There were three of us who had to stand for the entire ride. Now I'm so sick and irritable that I can't function. My chest is killing me (elephant sitting on feeling) and my heart just feels taxed. I'm weak and dizzy and in PAIN. My BP and heart rate aren't acting like typical POTS, no change when I stand up- just more pain. It's like my heart can't take it anymore. I'm upset because I couldn't say anything to the bus driver as I was trapped in between two other people and there wasn't even enough room to sit on the floor (and I didn't want to be told to leave). I am livid right now, and worried that I'm going to have a POTS attack (this after almost of year of my symptoms easing a bit). Sorry, just needed to rant. Calling Peter Pan tomorrow. I better get my money back at the bare minimum. It's unsafe at the least to be standing in a bus - I'm just glad I didn't pass out. Sara

Felt I had to chime in. I see a chiropractor about once a month to have the joints that were out of place, put back into place. I'll see him sometimes more often if I can't get a joint back to where it needs to be. I would be lost without my Chiro. I have seen an acupuncturist and it did help a lot with the pain from the EDS, but once I stopped seeing her the pain came back with a vengeance. I have gotten some good luck with a few herbal treatments. If I hit myself hard against something I take Arnica Montana and that helps with the inevitable bruising. I've found an arnica cream that helps sore joints somewhat. I also take Rescue Remedy for some POTS attacks. It seems to calm them down if I take it early enough in the process. I also take vitamin D from an herbalist (1 drop = 1000iu) which is better than a pill as I can't swallow pills with ease. Sara

Well I don't think I lead a boring life. I'm studying for a PhD in Biomedical Sciences, I write science fiction, I love to go on hikes. Sure, I'm no adrenaline junkie (though I do have a desire to go sky diving) and am not the life of the party, but I think my life is pretty interesting right now. I saw an endocrinologist when I was diagnosed with this condition. He really didn't take me seriously, just said this happens to a lot of adolescent women and it was nothing to worry about. It's a false positive. This was confirmed by another endo -a false positive. My thyroid hormones have always been on the low side (which would make me hyperthyroid) but I have about half the symptoms of hypo and half the symptoms of hyper... Not sure what's going on there. As for adrenal hormones, I have a lowish morning cortisol level (8ish - normal 6-23) and low aldosterone (2 - normal 5-41) but my cortisol responds appropriately to ACTH stimulus, so according to the endos, I'm fine. I should take florinef for the low aldosterone, but I have trouble with those side effects. I firmly believe SOMETHING is going on but I have no idea what and I'm too busy right now to go through the process of having the tests repeated to see if the effects are the same. Sara

I'd get tested. I actually knew that I had EDS long before I knew that I had POTS and it was nice to know that even though I can't do anything about either, I finally had a name for what was happening with my body. There will be good days and bad with both conditions. I've been super flexible for years and blacking out for years. I thought it was all normal, but I quickly learned that it wasn't when I finally mentioned it to my doctor. Also, with the actual diagnosis you can tell people that this is what you have. Telling people I was hypermobile didn't mean anything to them - to say I have Ehlers- Danlos Syndrome lends more creditably to what you have even though it's just a name (especially with Doctors). Also, getting tested means I can be certain I don't have the vascular type before I have children, as pregnancy is a big risk with that type. EDS patients also need to be treated differently. I would be a high risk pregnancy for example, and when I have stitches they have to be kept in place for twice as long. Get tested. It's worth it to know what you have and it isn't invasive (unless they suspect you have the vascular type). For example: EDS explains these conditions: Recurrent Corneal Abrasions, TMJ, Shoulder Tendonitis, Sciatia, Trochenteric Bursitis, Snapping Hip Syndrome, Arthritis, Carpal Tunnel, DeQuavain's Tendonitis, Recurrent Fractures, ETC. It's just easier to say my EDS is acting up. Sara

I was told that I have this too, but my blood sugar never went higher than normal, if anything it remained within normal limits, besides the 1 hour time point that is. And no, I don't have insulin numbers to go with this finding, just glucose. Start: 78 1 hr: 60 <-- 2 hr: 80 3 hr: 84 4 hr: 82 I think my body just couldn't handle that much sugar that fast. I don't drink soda at all. Futurehope, my numbers sound a lot like yours. I sometimes wonder if I'm just digesting the stuff really fast (I eat constantly anyway and get really crabby if I'm not fed on an regular basis, but I was like that even as an infant - my parents were told to feed me every 4 hours, needless to say I got fed every 2) Sara

Do you have links to those articles? I never understood why it took FOREVER to get me numb and I have been diagnosed with a potassium deficiency. Sara

Suzy- Very interesting that all your D-dimer tests come back high. Mine do too, and not just a little high, off the charts high, but no embolisms.... I was told that it was also a marker of inflammation, but haven't found that information anywhere. Maybe we can unravel that mess. Sara

Woot! We finally have a code!!!!! This will makes things a lot easier for my doctors. Thanks Maxine! Sara

Wait a second... you're not supposed to have sparkly vision when you stand up? I get it if I move my head the wrong way... Why did no one tell me this!! Sara

Hey Everyone- I've mentioned this before, but it's starting to really bug me again. When I was diagnosed with POTS I was 5'8" and 140 pounds (by no means over or under weight). I was originally 150 at the end of high school (and 5'6") and had lost ten pounds before I was diagnosed. I am now trying to stay at 125. I hate being this thin as clothes don't fit anymore, my belly is sunk in and my ribs are showing. I mentioned this to my doctor when I hit 132 and he just told me that I have a high metabolism and I need to eat more. Well, I have been, but it's NOT helping. I eat all day at work, plus three meals and I can barely maintain the weight. I skipped lunch yesterday and lost 2 pounds! That shouldn't happen. Anyone else have a similar problem? I'm nauseous all the time, but if I'm eating constantly the nausea is *mostly* controlled. (Knock on wood). I just want to be 135 again. Sara

Suzy- Considering what squatting does to us, I would say that those exercises are probably not a good idea just yet, especially if you had that reaction. I always get dizzy standing up from a squat, I can only imagine what doing 6 in a row would do! Eeep! I'm sure the doctor probably meant 10 reps, but there are some exercises that might not be good for you. Perhaps the reps weren't written in on that one because you weren't supposed to do it? Just a thought. I would call and ask, and also mention the reaction that you had. Perhaps they can recommend a different exercise. Sara

Sorry to hear you've all had such a bad reaction. I have the opposite problem, the Novocaine, etc that I am given doesn't work for me. Neither does the medicine given in an epidural. I've been told this is common with EDS, but it sure stinks. It took 5 epidurals for my knee surgery and the knee wasn't numb (140+ heart rate laying down afterward though for a good long while). For my wisdom teeth (all ready erupted)I was maxed out on Novocaine and Carbocaine (they called it super-Novocaine) and I still felt it. Not sure what my heart rate did, but I always assumed that the elevation was due to pain, not a medication reaction. Sara