delphicdragon

Julie- Hypermobility and stretchy skin are signs of Ehlers Danlos, whatever type. "The malignant form of EDS (type IV) owes its bad reputation to a proneness to spontaneous rupture of bowel or large arteries. Paradoxically, other manifestations are less dramatic than in some other forms of EDS. For example, joint hypermobility may be confined largely to the fingers and whereas the skin is strikingly thin and translucent, it is only mildly hyperextensible. Bruisability, however, is very striking; indeed, 'ecchymotic type' is a synonym for type IV." http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=130050 Sara

Have you all looked into Ehlers-Danlos as a possible explanation? The vascular (and classical) types of EDS can cause veins to stick out like that. Are your joints hyperextenable and is your skin extra stretchy? If so, you might want to bring Ehlers-Danlos up with your doctor. Ehlers-Danlos is the reason behind my POTS. Just a thought. Sara

Welcome to the forums! Have you looked into a vitamin D deficiency? I always had a bad time from January to March (crossing my fingers now that I can keep working) to the point where I had to take off semesters from school because I was so not functional. When they tested my Vitamin D, it was through the floor. He may be feeling better in the summer because he is getting more sun. On supplements, it's amazing how much the pain in my legs went away, and the POTS seems to be (knock on virtual wood) calming down. Vitamin D deficiency seems to be really common in people with POTS. Good luck to you and your son. Sara

I actually wasn't diagnosed with a type of seizure. My EEG is normal, but yet I still get these episodes when I shake uncontrollably and feel like I am in a dream state (body is paralyzed, mind is still alert). I tend to get them when overwhelmed/stressed out as my body loses the ability to compensate for the stress. The neurologist I saw felt that these were seizures, but he was loathe to put me on medication to correct them. He was actually the first person who did a "poor man's tilt table" and saw my heart rate go up as much as it does, but sadly this was never followed up as I graduated college and moved. I've been blacking out for as long as I can remember, standing up and not being able to see for a couple seconds. I always thought that was normal. It apparently isn't.... My O2 also appears to drop when I'm standing. I have not had it tested, but during my last tilt table test I needed supplemental oxygen. Wondering if there is a link there. Sara

Hey jjb- Welcome to the forum! I too have a history of Ehlers Danlos and POTS. I was originally suspected of having something wrong because I went into what appeared to be long lasting seizures. When the EMTs took my BP on one occasion it was 0. I was having these seizures because my brain wasn't getting enough blood. Have you tried taking your daughter's BP or blood sugar during the episodes? The seizures may be due to low or high BP, or due to low blood sugar. Have you thought about laying her down and raising her feet to stop the seizure, if it is a blood pressure thing? That worked for me just by gravity getting the blood to the brain, enough to stop the event. Best of luck and welcome. Sara

Cat_Lady- I'm very surprised that you had to pay fees to get the handicap tag. (I just have the tag, not the plates.) Mine was free here in wintery Connecticut. And there should be no questions whatsoever, you have a doctor's note and it's your rite to get the sticker/plate! This may sound weird, but when I went for the handicap tag, I was limping due to a previous injury. No questions were asked. Sometimes it's not worth it to try to explain things to people, it's better just to let them "think" they know what is really wrong. Most people don't understand how a fast heart rate is bad, but they do understand a limp. Sara ADA is the American's with Disabilities Act. It protects us from discrimination in the workplace and allows us access to things that able bodied/minded people get. There is no card, as far as I know, though I do have a card for my Ehlers-Danlos - great reading material for the EMTs.

I also always take yogurt with Antibiotics. Make sure it's an organic yogurt with lots of live active cultures - the sweetened stuff doesn't help and can make the yeast infection worse. Antibiotics kill my stomach long before they cause a yeast infection, so I take the yogurt to keep my intestines happy. I start eating yogurt on the second day of the antibiotics and usually I can get through most of the course. Sara I've also been told by my gyno on a Friday evening, that applying yogurt to the affected area can help, but I'm loathe to try it. (Eww, gross, etc)

Just wanted to add, make sure you have the doctor read the results of the tests. I have been allergy tested twice. I know I am allergic to certain things, I get anaphylaxis from smelling the artificial butter they put on the popcorn at the movie theaters. (Not anymore, they changed the formula, yay, I can go to the movies again!) Anyway, when I was first tested, I was seen by a nurse who looked at the histamine positive control and compared it to all my other reactions and said I wasn't allergic to anything. This lead to a doctor diagnosing me with psychogenic asthma, as even though I was positive on the Methacholine challenge test, I wasn't allergic to anything so I must not have asthma. (GRR) When I was tested again after switching doctors, I finally got a doctor to read the results. I am apparently allergic to the pollen of most things green and leafy, mold, cats, dogs and other furry things. The one thing I tested negative for was feathers. I refused to do the food susceptibility tests because chocolate was on it, and I couldn't handle being told that I can no longer have chocolate. As for it affecting my POTS, I wasn't officially diagnosed then, but I had no problems with it, even though I was having POTS symptoms. I took Benadryl afterward because my arms itched SO bad. Sara

My insurance company thinks that I have Chronic Kidney Disease as I don't urinate much, if at all, when I'm having the most severe POTS attacks. I think my total urine output was 400ml in 24 hours because of the POTS attack. Without a POTS attack I urinate about 1000-1500 ml. My creatinine is always low. I agree with Flop, if you're worried see a nephrologist. Sara

Perhaps a bird? Especially if you aren't allergic to feathers? They're wicked smart and can talk and learn tricks. (And are soft to pet) Have two birds. Had a poodle. Never had a problem with either. I test 2+ for dogs and 3+ for cats. 0 for birds. (My allergist used a score of 0 to 4, 0 = no reaction, 4 = massive reaction) I'm apparently also allergic to the pollen from most green plants. (Like to say I'm allergic to anything green, but my mother still insists I eat my veggies) I react to angora severely ( I can tell if a sweater has angora in it by looking to see if my hand turns red and starts itching after I touch it ) When I'm having a reaction, my POTS goes crazy. Sara

Have you thought of Sudafed? It's over the counter, sorta. Make sure you get the real stuff, pseudoephedrine, NOT phenylephedrine. It's behind the counter but you don't need a prescription. I found that it helps both my heart rate and BP by convincing my body that it is over stimulated. Just a thought about trying that before you go to the "heavy hitters"- Ritalin / Adderal/ Concerta/ etc. I was prescribed Ritalin, but worried about it decreasing my appetite, so I tried the Sudafed first (per the doctors suggestion) and it works! The only side effect is a dry nose, which I can deal with. It actually increases my appetite, which is great for me. Sara

Going for 5 hours without eating is a bad idea for me. I need to eat about every two hours for my adrenaline surges get bad. I can't let myself get hungry. As for 71, that's not technically hypoglycemia. I was told that 60 was the cutoff. But if you feel bad, maybe ask your doctor about getting a Glucose Tolerance Test. Sara

Having my feet up is essential if I'm going to be sitting for a long period of time. Yes, I look like I'm being rude, but it's worth it because I don't get as tachy/shaky. Sit with your legs folded under you or curled in a ball on the seat. This prevents the blood from pooling in my legs. It does make standing up a little strange, as I have to do it very slowly and let my legs down first so I don't "run out of blood" when I stand up. Always have your feet up on something. I tend to pull out a drawer and place them on that, or alternately on the actual desk top, with the chair reclined backward. (And yes, I have gotten comments about this, but my boss knows about my condition and realizes that I need to be sitting like that - having a laptop also helps) I also will wear sunglasses indoors if I'm feeling overwhelmed by all the lights around me. Sometimes just closing my eyes helps, or laying down for a moment can cut the light sensitivity. If someone asks, I usually say I have migraines, and they tend to understand that. Usually for me, if I'm having light sensitivity, I've reached the point of no return and need to be horizontal. Also, if I'm in line, I have to constantly be figiting and shifting my weight from one foot to the other. I like to think that if it keeps me vertical, it's worth it, even if I look a little strange. Sadly no medicine helps this. Hope that helps. Sara

I trigger VERY badly with Vaccines. When I was very young I had a DTP (Diphtheria, Tetanus and Pertussis) I reacted to the Pertussis portion and actually wound up being paralyzed for a day from the waist down. Thank God I recovered from that! Though I think I still have some neurological deficit from that shot. The POTS is a neuro thing, and that reaction, coupled with the EDS may be why I'm super sensitive to everything. Had a tetanus shot about 2 years ago and was in bed with a 102 degree fever and chills for 24 hours afterward. I did NOT expect that reaction and have vowed never to have a tetanus shot again. I think our bodies are super sensitive to vaccines. Vaccines are meant to trigger the immune response, and I think we just react WAY too much to the foreign "invader". Sara

Sorry you've been going through that - it sounds horrible. Have you been tested for Pheochromocytoma? That can cause the symptoms of POTS as well as facial flushing? Sara

I completely agree that the name should be changed! When I was first diagnosed in college, the question I was most often asked when I told people I had POTS, was "Can I have some?". Sigh. There's nothing good with a disease being named after 1)an illicit drug or 2) a cooking vessel. I like Dysautonomia, though I have a hard time pronouncing it and my tongue gets stuck on the word. I think saying that my heart and nervous system are fighting is a good explanation, but that still leaves me without a good name. Sara

Thoughts and Prayers are with you! So glad you're on the road to recovery with the hip back in place. Sara

Little Background: I am getting/ or have gotten a cold. Sore throat, dry cough, yellow goo (I know, lovely) I was heading to bed last night, and as I lay down in bed I felt my heart do something very strange. It was almost as if it was beating in the wrong direction. I felt like my heart bent itself in two and tried to escape out my sternum. I thought, this is weird, took a few deep breaths, and because of said cold, was immediately asleep (No time to ponder an ER visit). There was some pain with this event and my chest moved very strangely, but I seem fine now. Wondering if this was Afib, or a PVC, or my MVP getting stuck open or something. Has anyone experienced this before, and does anyone think I need to get it looked at? I know most doctors won't see you if you can't repeat what happened; plus I'm really busy at work. Any ideas? Sara Thanks. (Sorry I haven't been on the board much- it's finals week!)

I've found that NuvaRing helps me a lot. (Though I hate the week that it has to be out, POTS symptoms galore). It's mostly a local effect, so I don't get the systemic nausea and diarrhea that I have gotten with every other BCP. I'm going to talk to my gyno and see if I can keep go without having a period on it. I really feel that my energy has returned on NuvaRing. Some side-effects, yes, but it's worth the energy boost. Sara

No MSG for me. I get SO nauseous with it! Ate it once, now all my Chinese food is MSG free. Sara

To undo methylation is a lot harder than we think. First off, methylation turns a gene off. Our bodies do this for a reason, in general - it's not like a mutation, where the gene product is not functional, it's our bodies saying "don't read this". Using an adenovirus could work for mutations because it does incorporate into the genome, but it does so randomly, meaning the expression of the gene would be variable. We have viruses now that only incorporate into one place, and they are much more effective, but the research is years off, as money was poured into adenoviruses years back. The methylation of a gene is what happens when it is "processed"by the body and that is much harder to undo than a mutation. (Possible thoughts about an overexpression vector to compensate in a viral construct, but that is also years off). Sara

I take papaya pills when this happens. You can get those at any health food store and they help too. Sara

I get the same thing (exactly!!) when I over-exert. I have no idea what to do to help this other than wait it out. (Sometimes Rescue Remedy helps, rest definitely does.) Wish I had more answers for you, but wanted to say you're not alone. Sara

When I am having trouble with POTS, I have severe stomach issues - diarrhea and nausea being the main problem. When my POTS is behaving, I have issues with constipation. I figure it all evens out in the end. Taking Imodium clogs me up for a week, so it's not worth it to me, and I just suffer through. Thankfully, the diarrhea usually only lasts about a half a day- but it definitely puts a damper on any plans. I don't drink any milk, as I have tested to be lactose intolerant. I also can't have barley or malt, so there is probably some gluten intolerance associated as well. I can't have any fake sugar. Aspartame, Xylitol, and other sugar alcohols can cause severe diarrhea, so cut them out of your diet if you're eating them. Eating easy to digest foods tends to help as well. The BRAT diet (Bananas, Rice, Applesauce, Toast) can help a touchy stomach. Sara

Not every endo is bad. I hope that soon you'll find one who is much more compassionate. I was originally diagnosed by an endo. Granted he knew little about the condition and told me to gain weight and eat salt. Also told me to wait, as high blood pressure runs in the family and that one is treatable. I've done the salt, and I can't gain weight no matter how hard I try. I mentioned a previous endo's diagnosis of reactive hypoglycemia and was told that there was no problem with my levels as what happened to me is common in young women. (I've checked with other doctors and found this to be true). My glucose levels drop off immediately (60 at one hour), then slowly creep up to normal (84). Sadly true hypoglycemia, with my body reacting too much to the glucola immediately is only treatable by eating small meals, which I do. Good luck to you! Sara