Gena

Hi Nina, Yes I agree that you probably hadn't been ingesting it long enough. I think I read somewhere that you should at least be eating it regularly for 6-8 weeks before the test. However, for some people it just makes them feel too miserable so instead of getting the test they just go gluten-free and skip the test. Even those that do not test positive for celiac can still have problems with gluten intolerance. I think we've all learned to trust and listen to our bodies in spite of what the medical tests say!

Nina, Just a thought, are you getting plenty of fiber in your diet or taking a fiber supplement? I assume you're drinking lots of water, right? Both of these help with motility. The magnesium certainly wouldn't hurt to try short term. I hate to see you get on another medication when there are so many natural things you could try first, including many laxative type herbs, bowel detox/cleanses and colonic massage therapy. Hope you feel better soon. Hugs and cheers.

Kate I have celiac too. It also runs in my family. You can have a simple blood test done for it. Just explain to your doctor that it runs in the family and that you've been having GI symptoms and you need to rule this in or out. Here's a link for more info http://www.csaceliacs.org/ There are many other helpful sites on the web as well. Just make sure you haven't stopped eating gluten before the test, as it may give you a false negative result. I've had celiace for 4 years now, so if you do test positive for it, I'd be glad to give you resources for GF lists of food brands and places to order them, etc. Best of luck.

Hi VeryBlue, Your situation sounds similar to mine. The very first night I ever experienced POTS symptoms (tachycardia, nausea and dizziness and diarrhea) was in June after going out to try a new restaurant with my husband. The food was awful and my fish was very undercooked. I ate some of it and sent it back to the kitchen. I woke up in the middle of the night with diarrhea and tachycardia. I didn't have any more symptoms until about 3-4 weeks later the same symptoms came back with a vengance. I don't know if it's just a coincidence that they started on the same night I ate the undercooked fish or not. But I often wonder if there is a link. I don't think I'll ever know for sure. I do know that I am feeling a lot better now. Also, certain parasites can cause symptoms similar to POTs. The Great Smokies Lab offers a complete stool study that evaluates bacteria and parasite levels. Their website is www.gsdl.com if you're interested. (your doctor has to fax them a written order for it and then they send you the test kit.) Let us know if you find anything else out. Good luck.

Morgan, So very sorry to hear about your husband. I will say many many prayers for him to get better real soon. I know it must be frightening for you in so many ways. The medical system can be so frustrating. It's like some doctors just treat you as a number not a human being. They don't pay attention to the details and often down play serious symptoms. Just let your husband know that you are there for him and we'll keep him in our prayers. Perhaps you can get a neighbor or a friend to drive you and your husband to the appt. so you don't have to drive. Please keep us posted on his condition. Hugs and Blessings.

Cherie, About 4 years ago I was dx'd with celiac sprue, but prior to that my symptoms started out very neurological and I often had that vibrating/shaking feeling, kind of like you're a machine plugged into the wall. I also had a lot of muscle twitching. Once I went on a gluten free diet the vibrating and muscle twitches subsided significantly, although it does come back once in a while for a period of days or weeks if I'm sick or stressed, especially now since I've had POTS (dx'd July of this year). I had every neuro test done and they could not find any abnormalities. You may want to check with your neuro just to be safe, but often these weird things come and go without explanation. Hang in there, I know it's really annoying! Cheers, Gena

Jessica, As I'm sure you know the first 2-3 of months are the worst with the nausea and then things usually even out. I'm praying that you don't have any more SVTs and that you and the baby stay healthy. Just do as much research on the drugs you're taking to see if they will affect the baby. There are multiple things to try as alternative therapies. I know you said you already tried some, but here are a few things that my Prescription for Nutritional Healing book recommends for nausea and morning sickness... Ginger, catnip, dandelion and peppermint L-Methionine, 1,000mg daily (effective in preventing nausea) Vitamin B6, 50 mg every 4 hours plus magnesium 400 mg daily in the a.m. I'm keeping you and the little one in my prayers Jess. Hang in there and try to drink fluids as much as you can. Hugs and Blessings.

Blackwolf, The tuna dish sounds really good. I'll make it with my gluten free noodles. My stepson loves tuna, so I'm sure he'll enjoy this. I have celiac and I was dx'd via blood test and small intestine biopsy. If you're having the blood test make sure you've been ingesting gluten in your diet. If you've been eating gluten free, then the test may show negative. I had pretty severe digestive and neurological symptoms until I went gluten free, they hit me all at once. Some people only have minor symptoms like gas, bloating, alternating diarrhea and constipation, brain fog, iron deficiency, etc. These are common for a variety of conditions, so it's often hard to diagnose. Thank God they now have simple blood test for it. Even if you don't have celiac, you still may be gluten or wheat intolerant. Many people with sensitive immune systems do better avoiding wheat, rye, barley and oats. Good luck and keep us posted. Cheers.

Okay gals, the combination of ingredients may sound a little strange, but it's quite delicious and my family loves it. The intial prep work of slicing and dicing takes a little time, but it's worth it, especially if you make a double batch to store some in the freezer and heat it up on a cold winter day. (You can also add diced ham to the recipe if you want meat in it, but the mixture of corn and beans gives you a complete protein source and the squash is loaded with beta carotene and other vitamins). here it is...feel free to adjust according to your own tastes. This serves 4, but I always double it. Harvest Stew 1/4 cup olive oil 2 onions, sliced thin 2 cloves garlic, chopped 1/2 tsp. paprika 1/4 tsp cayenne 1 tsp oregano 2 tps drained chopped pimientos (one 4-oz jar) 1 cup canned crushed tomatoes in puree (15 oz can) 1 butternut or acorn squash (about 2 lbs) peeled, halved lengthwise, seeded and cut into 1 inch cubes 1 1/2 cups water 2 tsp. salt 2 cups drained and rinsed kidney beans (can also substitute or combine other beans such as pinto, cannellini, etc) 1/2 cup chopped fresh basil (optional) 1. --In a Dutch oven (big soup pot), heat the oil over moderately low heat. Add onions, cook, stirring ocassionally until tanslucent (about 5 min). Add garlic paprika, cayenne and oregano. Cook and stir for about 1 min. 2. --Stir in pimeintos, tomatoes, squash, water and salt. Bring to a simmer. Cook stew covered, stirring occasionally until squash is tender (about 15-20 min). (Sometimes, i microwave my cubes of squash just slightly before I put them in the stew to speed up cooking time). Uncover and simmer vigorously about 5 more minutes until stew is thick and with only little liquid. Add beans and corn and cook for another 5 minutes. Stir in basill and serve.

Tearose - I have a friend at work that has a week's worth of recipes that she makes in one day and puts everything in the freezer, then heats each meal as needed. (She makes everything on a Sunday and gets her hubby to help). I'm not sure if that's do-able for you, but I'll be glad to get some of her recipes and email them to you this week.) I used to live off of Kate's suggestions in college and loved them, They do taste good and are great quick fixes, but because we have such sensitive bodies we need the best nutrtion we can give ourselves. Fresh or frozen fruits and vegetables and lots of greens are really important. I firmly believe "we are what we eat." (okay, that's the nutritionist in me speaking! Look where our McDonald's and Pizza Hut society has gotten us! P.S. I'll also forward you my recipe for "Harvest Stew". It's an awesome dish that is especially great for winter months and is easy to freeze.

Uggggh! I'm so frustrated. I went to Mayo Clinic because I thought they would be on top of things and know what tests to do and how to do them properly!! I wonder if they know theyre supposed to do a TTT for 30-60 mins? I wasn't on any meds so that wouldn't have affected the results. I had been doing licorice root, plenty of fluids and salt, so my symptoms were somewhat stabilized by the time I got to Mayo. On a brighter note...The cardiologist at Mayo was wonderful. He was very in tune with what I was going through, had some good advice and very knowledgable about POTS. His name was Dr. Kusumoto and has treated several POTs patients in his practice in the Southwest before recently moving to Florida and joining Mayo clinic. However, since I had seen the neuro first, the cardiologist deferred the testing, results, evaluation etc. to Dr. Cheshire. Oh well, a lot of money spent for no good reason. I guess i"ll just continue to do what I'm doing. Dr. Kusomoto said as long as I was managing the symptoms naturally that I didn't need to be on meds. That's fine with me. If I get worse, I'll go back to Dr. Kusomot I guess.

Kate - thanks for your input, my halter monitor results were normal too except for the tachycardia, but no abnormal sinus rhythms. Dr. Cheshire, the neuro at Mayo Clinic is listed in their guide as specialzing in auntonomic nervous system disorders, but I didn't get a good feeling that he REALLY understood the nuances of POTS> Karen - I mentioned getting tested for Ehlers-Danlos Syndrome to Dr. Cheshire but he didn't seem to think it was worth investigating. He just pressed my fingers back to see how flexible they were. He said I'm flexible than most, but I was not "hyperflexible". Are there any blood or urine tests to specifically test for Ehlers-Danlos? They Ernie - I kind of thought that was the case, that we could not show symptoms on a TTT if we were having a good day. I would love to take the doctors word for it and believe I dont' have POTS, but my heart and intuition tell me otherwise. Biarrose - They did not give me Isoproternol for the TTT. Here are the results of my test Supine reading - 112/95, pulse 62 after 1 minute at 70 degree tilt - 100/60, pulse 88 after 5 minutes - 99/59, pulse 77 after 3 minutes - 98/60 pulse 74 after 4 minutes - 98/65 pule 75 after 5 minutes - 100/68 pulse 77 At the bottom of the report it reads...Orthostatic hypotension was not detected. Heart rate response was normal. Patient complained of shortness of breath. Beat-tobeat blood pressure responses to the Vlaslava maneuver were normal. I also had another autonomic test that measures sweat output and they had me blow into a tube several times really hard. Again, the report says all normal responses. Urine was tested for metaneprhine and catecholamine levels to rule out pheochromocytoma, and those levels were normal as well. Urine sodium was low normal and ANA was elevated (which I've known) and had low levels of protein in urine. EVERYTHING else was normal, but I don't feel normal? How is that possible?

I know for certain that when I was first started having severe POTS symptoms in July, (lasted for about 6-8 weeks), there is no way I could have passed a TTT. I know my blood pressure was dropping when I stood, was gettting extreme tachycardia, etc. However, about two months later when i went to a clinic in Birmingham that specializes in dysautnomia, they did a TTT and the doctor said the results were mostly normal and she saw something only slightly out of whack (can't remember what she said it was now). HOwever, she did dx me with POTS based on all of my other symptoms. When I went there I was really anxious so my heart rate pretty much stayed in the 80s (which is high for me, mine is normally low 50s). And because I was so anxious my bp, which normally runs really low, was up there as well. (By the time I went to the clinic I had already started taking licorice root, increased fluids and salt, for a couple of weeks before the appt. so my POTs symptoms had already begun to decrease by that time) Also, I recently went to Mayo clinic and again was extremely anxious which kept my heart rate in the 80s and bp in high normal range all day. Again, I passed the TTT and other autonomic tests. HOwever, I still continue to have POTS symptoms. The neurologist (Dr. Cheshire) at Mayo doesn't think I have POTS he says "because my tachycardia doesn't go away when I sit down"?? What I actually told him is that once the tachycardia starts from standing up after lying in bed all night that it may take up to several hours for my heart to slow down and find its own rhytm again. I was not impressed with his knowledge of POTS. I know there are so many nuances to POTS symptoms that don't exactly fit the medical textbook description, but I dont' think he understands those. I know we all get tachycardia at other times too, not just changing from sitting to standing. So I 'm not sure whether to believe this guy or not. He wanted to chalk it up to maybe hypvolemia. Anyway I will vent more about this experience later. wanted some input on whether you can have POTS but pass a TTT if you're in a "good phase" of POTS and your symptoms are less? Thanks.

Hi Kate, I'm glad you found this discussion board. It's sooo helpful. I get bad headaches too. I mean incredibly bad, like my head might explode because there's so mucn pressure. The last month though they seem to have subsided (knock on wood). Lying down, an ice pack on my neck and being very still seems to help mine. As far as your meds go, I realize people find medication beneficial but when someone is on so many it takes a toll on the liver and the whole body. Science doesn't yet know all of the interactions and possible side effects when putting multiple drugs in the system. So I guess it makes it hard to determine if your symptoms are from POTS, ADHD or the combinations of drugs. I noticed you were on Zoloft. Have you ever considered trying natural remedies to replace this? Sam-E has been proven to work great for depression and ADHD without all of the yucky side effects of a prescription drug. It's been used widely in Europe for years. Also their are other things such as GABA, Omega-3 fatty acids, and calming herbal combinations you can buy at a health food store, as well as identifying possible food triggers, etc. Anyway, when I was first dx'd I was a mess, a real basket case, and very emotional and sensitive too. My emotions have leveled out, although I still get some nocturnal panic attacks every now and again. I just want to say that we're all here for you. This is a safe place to come when life gets overwhelming!

Hi there. My cardiologists have said that a HR that hits 200 or above is cause for concerna nd that I should immediately go to the hospital. In my worst of time, my HR hasn't gone over 140, but considering my resting heart rate is often in the 40s and 50s, 140 certainly feels like 200 for me! The caridologist I saw at Mayo clinic in Jax (his name is Dr. Kusumoto, awesome cardiologist, by the way), said one theory for the chest pains is that when someone is actually having a heart attack their body produces a chemical (I think he said it's called adenesol, or something like that) that brings on the chest pain, and in POTS patients our bodies soemtimes produce a surge of this chemical even though we're not having a heart attack, hence the chest pains. He looked me right in the eyes and said, your heart is healthy and as long as you have a healthy heart you do not need to worry that POTs is going to give you a heart attack, I guarantee you that. So I felt better after hearing that anyway. I think POTS is still such a mystery to doctors (and us), but I'm hoping we'll unravel all of its secrets soon!

Hi there. Sorry you're feeling lousy. I go through similar symptoms probably once a month. I know you're probably already eating the right things (since you're into metabolic typing diet), however, you may want to try taking some extra vitamins like A, C, E and colloidal silver works wonders in helping the body fight off viruses. It's especially helpful to take this frequently this time of year when the colds and flu are going around. Hope you feel better soon.

I realize prescription meds are sometimes necessary, but there are many herbs and supplements that are safe to try as well for anxiety and depression. SAM-E is the most prescribed antidepressant in Europe. S-adenosylmethionine (SAMe) is an amino acid that is used in the treatment of many conditions including liver disease, osteoarthritis, depression, fibromyalgia, schizophrenia, and migraines. SAMe influences the body?s production of melatonin, serotonin, and dopamine, which influence our sleep, mood and social interaction. Not to mention it's non-toxic and has far less side effects than RX drugs. I work part-time in an herb shop and I've seen SAM-e work wonders in people. It's important to keep your dosage the same though...usually one in the a.m. and one in the evening seems to be the most prescribed way to take it. For faster results, I know some folks who take two capsules to get immediate relief if they're just extremely depressed or crying. It's most effective in the body when taken along with B vitamins (either a B-complex or mult-vitamin). Hope you find relief soon. I get the same feeling sometimes in the middle of the night. It's an awful sensation. And here's the disclaimer...Of course you should research this supplement or any precsription drug and discuss it with a qualified health pracitioner before taking.

Hi Karen I'm so glad you found him to be helfpul. Just curious, if you wouldn't mind sharing, what were some of his "twists" on traditional treatment for dysautonomia? Were they primarily psychological or medicinal? Since, I live in Florida, I probably won't be able to get up there any time soon. I wonder if he does phone consultations?

Jessica, I just wanted to say congratulations and best wishes. Although I can't advise you on the meds, I certainly hope and pray your health continues to improve as it has been. I am very happy for you and David. Keep us posted on how you're doing.

JR2000, Just wanted to say I'm glad you found this board. The support and information you find hear is great. I'm a real proponent of internet research. I had dx'd myself with POTs before the doctors did. My BP dropped when I stood up for the first few weeks when my symptoms were really bad, but now it doesn't...I just have the heart rate change like you do. I read that you have IBS and possible Chron's....about 4 years ago that's what my GI doc tried to tell me I had, but I kept pushing for more tests and trying new docs, b/c I had a feeling it was something else. I was finally tested for celiac sprue disease, and lo and behold that's what it was. Untreated celiac can lead to all kinds of problems in other areas of the body, including gallbladder. Just curious if you've ever had a blood test for celiac or an endoscopy done of your small intestine? Anyway, good luck with finding a good doctor. I think that's one of the most important, yet difficult things to do! Gena

Sometimes I get that kind of raw feeling across my upper intestines/abdomen, especially if my POTS symptoms are bad that day. But I think since the ANS controls so much of our gut processes, I always chalked it up to poor digestion due to POTS. I'd be interested to know what your GI says.

Hi Grace, I agree with Blackwolf about seeing a cardiologist, especially one that is familiar with POTS. They may be able to find some new meds that will help you get more of your life back. It may be trial and error for a while to find the right combination of treatments, but I think it's well worth it! Not sure if you are also trying the natural treatments such as increased fluids, salt, compression hose, etc... but those are definitely important too. Glad you found the forum and I hope you find a good doc!

Corina, Mono is short for mononucleosis. It's a virus that causes painful swollen glands in the groin and neck area, weakness, tired feeling, etc.. It can last several weeks. It's also called the "kissing disease" as it's contagious through saliva. Hope that helps.

Hi there. I have celiac also. In reference to your statement... "One thing that is strange however, is that I seem to have a lot more blood in my system and after going on my diet, I had a bunch of veins show up under my skin - like they are swelling. I also suddenly broke out in spider veins all over my legs and bottom ribs. My heart feels like it's always pounding (thyroid is currently normal). " I too, have the same problem with my veins and my heart. Once I went gluten free my tachy got better, but then 4 years later it came back along with all of the symptoms of POTS. My veins popped out when I got celiac and I started getting little spider veins on my legs. My veins stand out most prominently on my arms. Very weird. My doctor's answer at the time was "you've lost your subcutaneous fat and that's why they stick out." I don't think that's the answer, but who knows. Also, my echocardiogram showed a perfectly normal heart with a slight mitral valve prolapse (harmless, but often seen in POTS patients). You may want to get some autonomic testing done, like a tilt table and maybe some blood or urine tests for vasopressin and catecholimine levels. All mine were normal, but I still have all of the symptoms of POTS. This forum is great for helpful hints, good doctors, etc. Best wishes with your pregnancy. Hope you find answers soon.

I had mono (when I was 12) and I still test postive for Epstein Barr. There are a lot of theories relating Epstein Barr to many conditions. I don't know if it's a valid theory or not. Maybe one day they will find out, but i'm not holding my breath!