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  1. Today
  2. Thank you all so very much for your information! I had my TTT today and hopefully will know more soon. All I know is that I did have a 30+ increase in the upright position and a 30+ decrease in the laying position and I had dizziness and numbness through out the test. I am unsure about my blood pressure other than them saying something to one another about it changing, but I am not sure what it looked like. My heart also raced whenever I would talk. I do have a leaky valve that the man doing my test said could be an underlying cause of POTS? I haven't read anything about this being a cause. My cardiologist is suppose to call me to set up an appt with him this week to go over the results. I don't have any blood sugar issues and I saw a gastroenterologist less than 2 weeks ago to rule out any issues there, but I didn't go any further after they did an ultrasound and the test were I had to drink barium. They all came back completely clear. I will look into all options though, because I definitely don't like feeling this way. I have figured out that caffeine will on set a flare.
  3. Thanks Wintersown. Glad to hear PT has helped you so much! My GI said possibly doing PT, or surgery if it's more complicated and related to my ongoing spinal osteomyelitis.
  4. I've had anorectal manometry twice. First time they didn't know I had POTS. This time around I was given a prescription for Pelvic Floor PT. I've got a session at 1130am today, I go twice a week. It has been a tremendous aid. Not only do I have better control and stronger muscles, the exercises have given me a new me. I don't know whose body this is, I'm getting toned!
  5. I have extreme muscle weekness and fatigue that comes and goes along with a "baseline" weekness. My dr believes it is due to a lack of profusion when my blood pressure gets really low. Makes sense for me since one of my presyncope symptoms is weekness that can cause me to collapse. I also have chronic anemia and intermittent malnutrition contributing to my weekness.
  6. Sorry you are having such trouble, I hope you find relief soon! It is such an uncomfortable situation... I use a mix of diffrent laxatives, linzess, suppositories and enemas, and even then still have trouble. My GI is actually doing some manotomy testing Friday because he thinks there may be some new dysfunction/lack of function with the rectal muscles. I would caution that there is the possibility of a bowel obstruction with this set of symptoms. You can still pass small amounts of stool around an obstruction. If so, using miralax or osmotic laxatives could be life threatening by stretching the bowel so far that it bursts. There is also psudo obstructions to be aware of... you should be able to look up some past posts about that. Good luck!
  7. I am so sorry you are experiencing this, it is very, very uncomfortable. I seen my proctologist more often than my cardiologist or neurologist. They can assess your motility and make suggestions to change your diet, prescribe meds or OTCs, and give you a maintenance plan. If possible, try to make your appointment with a doctor soon, you haven't gone in a week and that's not healthy for you. In the meantime, you could take a soak in a tub with some epsom salts. The magnesium soak may be stimulative and your skin is nice for it too. A warm heating pad or hot water bottle for your abdomen may be soothing, I hope you feel better soon.
  8. Dr Lawrence Kinsella. He is a neurologist who specializes in autonomic dysfunction. I drove from Kansas City to St Louis last spring to see him & wish I would have years earlier. He is awesome.
  9. Yesterday
  10. Hello, welcome to the site. Hopefully you'll find some information here that can be helpful to you. I'm sorry you weren't able to find any specific names of doctors. Generally cardiologists that specialize in electrophysiology or neurologists that treat autonomic disorders would be the best place to start. Do you have a primary care doctor? Maybe they can help refer you to a specialist as well.
  11. Last week
  12. Good advice from Dizzy. Then at your doctor's appointment, tell him all of that and ask to be checked for gastroparesis. I am on Domperidone for it. That med changed my life. Some docs won't prescribe it. Do a search on this site about it. We have talked about it in the past. Getting regulated makes life easier. Good luck with your doctor's appointment and feel free to ask us anything. Kim
  13. Thanks everyone. I had the Synacthen test to see if my adrenal glands are working OK. Alas I have secondary adrenal insufficiency, so I have to stay on the hydrocortisone tablets and I have an emergency injection kit in case I have infections/flu etc, an accident, surgery or shock etc. It is vital. I am also to wear a Medic Alert bracelet in case of emergencies. It's all a bit of a shock really. I have my MRI in September. The visits to the pituitary/endocrinology clinic will be once or twice yearly for the rest of my life. Thanks to everyone who replied.
  14. UPDATE: We are pleased to inform you that the IT issues we previously reported are resolved.The DINET ( and website, ( are back up and running smoothly. Thank you for your patience!
  15. Like Kim said, pernicious anemia and gastroparesis. Watch what you eat. Not only small meals, but also the fat intake. Meat is harder to digest than a lot of things. Eggs are easy, as well as greek yogurt and milk. Liquid always digests better than solids. My youngest has had a couple of bouts with feeding tubes due to gastroparesis. We stumbled on to the fact that she had POTS because, due to the gastroparesis, she was eating a lot of Lipton noodle soup. Her dizziness had improved some and it was getting a little easier for her to eat. The salt! You might need to take it easy, even when you are feeling ok, as this seems to keep reoccurring. Also, I would look into the postprandial hypotension as well. Lots of people have that. Best wishes!
  16. For my daughters, it doesn't increase their heart rate. That being said, we do not use it in high concentrations like you find in pill form. There's no way they could handle that much. They would go through the ceiling! They would have severe ulcers, too. For my girls, the pills are so hard on their stomachs. We stick to getting it through drinks or the concentrated liquid caffeine at no more than a teaspoon (83 mg).
  17. You don't say which stimulant laxative you use. Have you tried Miralax? In larger amounts, it is what they use for bowel prep for colonoscopies, I believe. At any rate, you can take a whole lot of the stuff. Also, magnesium citrate in the bottle works. I wouldn't recommend drinking the whole bottle at once, but you can. It will clear you out, too. After you get cleared out, you have to keep on a regimen of Miralax, or whatever it was that you found worked, and stick with it. Also, have you tried magnesium tablets. My daughter takes 800 mg a day. It helps muscle spasms, too. Give it a good try before you decide one thing doesn't work. You have to get cleared out first. I speak from years of experience on this one. I hope you feel better real soon!
  18. Hey, everyone. I am struggling a lot right now with my gastrointestinal system. I've stuggled with constipation a lot over the years, and it seems to have been worsened by the Seroquel I started a few months ago, in addition to the zofran I take for nausea as needed. For the last week and a half, all of my symptoms have doubled in severity. I haven't been able to have an actual bowel movement in a week now despite taking a daily stool softner and repeated attempts at stimulant laxative usage and a suppository. I've also had really severe nausea to the point of nearly vomitting after almost everything I've eaten. I've tried ginger tea, heating pads, my zofran (which has worsened the constipation and not helped the nausea much). I'm at the end of my rope, and my follow up with my doctor isn't for a few more weeks. Help?
  19. Hello, I just learned of these conditions and was researching it when I found this forum today. I was relieved to finally put a name to the many debilitating symptoms I have. I have been suffering for decades with severe fatigue, lightheadedness, near fainting, blacking out when bending over or standing up, vertigo, low blood pressure with high pulse upon standing, exercise intolerance, temperature intolerance, on and on and on! I have been to more doctors than I can count. I was diagnosed in 1997 with Chronic Fatigue Syndrome. I was also diagnosed later with Chronic-late stage Lyme disease that was never treated as doctors told me for years Lyme didn't exist. The symptoms of POTS are worsening as I get older and less healthy. I am trying to find a doctor in St. Louis as there is no one in my area who can help me. I have seen on some other posts that others go to St. Louis but they don't mention the names of their doctors and the doctors are not listed on the Physician resource area. I am desperately needing to find help as I can barely function at this time. I don't know if there are treatments for this condition but I would be willing to go to yet another doctor to try to find some help. If anyone knows of one or has any suggestions for a newbie, I would appreciate it! I'm so grateful I found this site! Thank you for letting me post.
  20. Welcome new members as of 7/1/2017!! Please feel free to start a new post with an introduction. We hope you find the forum and website to be helpful and supportive. Ellejb Mamastewart2 bethgarcia Shood jvherenow Tammi Ashc POTS-mom Amyda Misskitty curlers Smokey Charles Kristalelzey Farmgirl85 ChemCreations CEC RecumbentRider Diana54 RunFoerster AllisonL ToDo TomRe AmyKB Jekka11 Kate RebJo Hen's Teeth Deet1965 SFNPotsie Isabella001 sidsloop LizaTodd Magosh RoF Bear Potsteph Sick Nick Cherie B tiredallthetime mollydoll KellyA DonnaG LFMaese Margot Craig Vikings Fan Darcie Tommy Work Sayuri425 Erinsh FRANKD Lisa1975 Feeneyja Bree eudire dumpstergirl Colleen719 ijna TJD Mcsissy Smile6205 Chilipep jrnae lehman
  21. Have you been checked for autoimmune diseases? They aren't uncommon with POTS. I got to that point, but it turned out I also had RA and pernicious anemia. I literally did not have enough strength or stamina to eat. People cut my meat for me for a while. I know you aren't exaggerating, unfortunately. Hang in there. This process takes time. I honestly thought I might die before someone figured it out. I am MUCH better now. Kim
  22. Welcome to the forum. I was diagnosed with POTS in 2002. Weakness was a significant symptom for me.
  23. Dear DINET Members: We are currently experiencing temporary technical issues within our forum & website, We appreciate your patience as we work to resolve this as quickly as possible and are sorry for the inconvenience. We will update you accordingly here on the forum, however should you be unable to access the forum, please visit the Dysautonomia Information Network Facebook Page for more information. Thank you!
  24. I still don't have a definitive diagnosis of dysautonomia. A big concern of mine is the extent of fatigue and muscle weekness. Nit enough strength to cut a piece dinner meat. Does anyone experience this magnitude and what caused this? thanks
  25. Needing B12 shots tells me that you have pernicious anemia, most likely. I have been told this is a common co-symptom with gastroparesis. Have they ruled this out? Eating and throwing it up while feeling horrible is a mild form of gastroparesis. Yes, mild, even though it probably doesn't feel mild. You don't want to know about moderate and severe forms. Most likely a gastroenterologist would have to make this diagnosis and they would need to be familiar with dysautonomia. Most PCPs just won't go there. In the general population it is relatively rare, but in this crowd, fairly common. Hopefully, you don't have it and it turns out to be something less disruptive. Take care. Kim
  26. Hi SonM, I'm actually having a pretty good day today and I hope you are as well. Yes, an hour commute is long (half the commute is the bus and the other half the train) but the actual distance to my job from home is only about 4 miles, if you can believe that! I tried every variation you could imagine including walking and then getting on an express bus but there are never any seats. I just can't stand idly during the commute or I get really sick - better to creep along slowly in an air-conditioned seat. I happen to live in a big city so traffic and congestion make the commute so long. The folks I work with that live in the suburbs have it even worse (2 hour commutes - I could never do that). Today I cheated and called a taxi to work and it was wonderful but at $15 it can get pricey if I do that all the time. My commute used to be easier but the mayor is trying to get cars off the road by putting bike lanes in all over and that sort of backfired by making it take forever to get anywhere during rush hour (as you can probably guess, no way could I ride a bike). Most people don't know that I have all these medical issues either. For years I had tachycardia and a couple of ablations and people knew I had something going on because I had no choice but to wear a 30 day holter monitor (they were a lot bigger 10 years ago and difficult to hide the wires). I think most people just assume I have heart issues - it is often too hard to explain the POTS symptoms. My children are 11 and 14. It hurt me at first when my 11 year old said that I was always sick but then it actually made me quite sad because I remember being a kid and my mom had severe attacks of migraines with sky high blood pressure. When she had a flare we weren't allowed to make any noise but we were horrible kids and didn't understand the severity of it. Sometimes she got so bad that she had to go to the ER and then I'd feel immense guilt like I did something to make her worse and I would have this fear that she might have a stroke and die and it would be all my fault. I never want my daughter to think that way, although I need her to understand that when I'm not feeling well I can't take her tantrums or her fighting with her big sister. Two months ago I had a major episode of tachycardia after lying down for a nap. It went on for about 10 minutes and then I got the spins and bad chest pain. I was literally on the floor and thought I was having a heart attack. My eldest called 911 and then ran out to meet the ambulance, leaving my younger one terrified on the phone with the operator (my husband was out food shopping). The ambulance took me and my older child had an asthma attack from the fear. My youngest was terrified and all the neighbors came running out to watch the ambulance take me away - it was super embarrassing. I felt so guilty that I put my children through that. Most of the time the violent episodes happen on my way to work or during the night when I'm sleeping and the kids are already in bed so they hadn't seen me like that. I never thought about it until she brought it up but I recently realized that my 11 year old has only known a sick mother (I was very ill and lost a ton of weight after she was born - and then was finally diagnosed with Grave's Disease (I couldn't be around her for about a week after having a radiation treatment on my thyroid). Then I had bouts of tachycardia, then was in the hospital and then on iv antibiotics for sepsis, then there was the summer that the flu went into pneumonia and I was out of work for 2 months, then I hurt my neck and could no longer pick her up or bend down to bathe her, then I had worsening of cardiac symptoms and my second ablation). Reading this I realize that I sound a lot sicker than I am. In between episodes/bouts I look normal and can work. I get very close to passing out but always get the warnings so I can take action. I've been lucky to have been able to take my kids to amusement parks, Disney, museums and concerts so they are far from deprived but I do say "I'm not feeling well" ALL the time. For example, last night I was tired and worn out and my feet and ankles felt the size of an elephant and I needed to rest after dinner and put my feet up but she wanted to go down to the park with her friends and I didn't want her to go unsupervised. My husband was doing some emergency plumbing due to the sink being clogged and backing up into the dishwasher so he couldn't take her. She got really angry and started crying because I didn't take her down to the park, which I totally understand. Then I felt a little guilty. Sometimes I do feel guilty because I feel like I try to conserve my energy so that I can work and choose not to do certain things on the weekend so I have energy to clean and do the laundry and things that need to be done. I let the apartment fall into near ruin for a while but all that did was make it so that she couldn't invite any friends over because the place was so bad. Since my trips to specialists last year and the meds, I can cook more often than ever before and feel a lot better. I even started a massive cleaning/purging of junk and clutter in the house but I have to be careful to save my energy because the only thing I can count on with this condition is that there will be ups and downs. Wow, I didn't intend to type all this but the words just sort of flowed out. Feels good to get this all off my chest.
  27. I get through vacations by not flying - my husband drives me all over (since I can no longer drive and get violently ill on planes). I make sure to wear compression hosiery and bring a ton of snacks. When I'm in the car I put my feet up on the dashboard once in a while. I find that even though I am most symptomatic and have lower blood pressure in the morning, once I get my bp up and get going, I function better than at the end of the day so I schedule important things early in the day when it isn't as hot out and lines aren't that long (waiting on lines provokes the most symptoms). If I take my kids to an amusement park or a concert, I make sure there's a place I can sit down. When it is a place I'm not familiar with or a walking tour or museum, I bring along a seat cane to sit on if need be (I find that helps me more than sitting on the ground). I save the evenings for low key things like hanging around the pool.
  28. Welcome Farmgirl85, I'm sorry you are feeling so horrible. I was thinking the same thing as BuffRockChick (postprandial hypotension). I get that as well but it is mainly after I eat a big meal or something with a lot of carbs/sugar (blood pressure drops and I go from being extremely hot to freezing). I also have issues in the shower (so no long, hot baths/showers and definitely no hot tubs) as hot water increases vein swelling and leads to blood pooling. I used to have horrible chest pain as well (where I thought I was having a heart attack) - it was mainly on the left side. I wore a lot of holter monitors but my doctor never saw anything bad happening with my heart during the pain so I still can't figure that out. A couple of times it got so bad at work that I couldn't help but clutch my chest and let out a curse but it has gone away since I was diagnosed and started meds, etc. You mentioned throwing up...........have you ever had your blood sugar checked? I ask because shaking after a meal can mean a problem with your sugar. I was diagnosed with reactive hypoglycemia (low blood sugar after a meal) so now I have to eat small meals and/or snacks and can't let more than 2 to 2-1/2 hours go by without eating or else I will get violently ill (basically, I stuff my face all day long and always have salty or protein snacks in my bag. I have to eat carbs in moderation and if I do so, it has to be with protein. If my family is eating dessert after a meal, I have to wait a bit after my meal (when my blood sugar has tanked) and then I don't have an issue with it - it actually makes me feel better. Good luck on Monday with your tilt table test! I hope the doctor is able to get a lot of information that might help ease your symptoms. It must be horrible not being able to eat and losing weight on top of everything else.
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