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Everything posted by hholmes13

  1. Hi All! It has been quite a while since I posted last. Luckily, I have been functioning quite well the past 3 years or so with only occasional flare ups of my symptoms. I have been back to work full time, running a small cake business on the side, and also exercising pretty frequently. I have POTS, EDS, and small fiber neuropathy. I am currently taking both midodrine and mestinon with good success and little to no side effects. Okay...so here’s the issue: I seem to be developing what feels like my sympathetic nervous system going into overdrive. It mostly tends to be at night. I w
  2. HI! I actually work and live in Rochester, MN and none of the tests are too bad. My neurologist there, Dr. Fealey, is actually the one who developed the thermoregulatory sweat test. It is weird and a little uncomfortable, but it isn't too horrible. If you sweat, you come out looking like you were covered in grape juice. The autonomic test can be a little rough if you are having orthostatic issues. The tilt table part of can make you feel lousy, but it is all worth it to get some answers and to hopefully help you feel better! If you need any advice on where to eat or visit or just questi
  3. Thanks so much everyone! findinghope I am taking Mestinon and Midodrine to keep things controlled. I also drink lots of water every day. Now that the weather is cooler, I don't have to be quite as careful as I did this summer. A few times this summer with the heat/humidity, I had to slow things down because I could feel my POTS starting to flare. It didn't take much to make me dizzy if I got overheated. I tried to counter this by being well hydrated and exercising early in the morning or later in the evening. Even though I have been doing well, my heat intolerance has never gone away unf
  4. Hi Everyone! I haven't been very active on here for awhile as I have been doing quite well the last year or so. Life has just been quite busy since I was back to working full time and my daughter is in school. I have been logging on and reading on here, just not posting. I saw someone mention they wanted to hear from people who have improved, so I thought I would share what I have been doing. When POTS hit me in April of 2011, I was training for a half marathon. The 2 years it took to get my symptoms controlled obviously put that to a screaming halt. At one point, I was out of work for a
  5. Hang in there! Mestinon has been fantastic for me. I started with 30mg (half a pill) 2x a day. I slowly added another half a pill each week until I made it up to 60mg (1 pill) 2x a day. I am allowed to take it 3x, but I don't need it. I like to keep my doses of meds as low as possible to avoid any side effects. Some people get really sick with Mestinon. I was nervous because I have a very sensitive stomach. However, I had no issues. Only thing I experienced in the beginning was muscle spasms, but they stopped after a few weeks. (Makes sense since it is a cholinesterase inhibitor) It t
  6. Definitely! The geneticist who diagnosed me said that all flexible people shouldn't be labeled with a disease. However, it is when you start having lots of issues (i.e. joint problems, POTS, etc) is when an EDS diagnosis should be considered. For example, I have been diagnosed with EDS, POTS, small fiber neuropathy, migraines, probable endometriosis, acid reflux, and other stuff...these things are all quite common in EDS.
  7. I have POTS and also EDS-hypermobility. I have many of the symptoms but am not so severe with the joint issues in that I don't dislocate things super easily. As Katybug stated, there are a lot of signs outside joint issues that go along with EDS. A word of advice...most people I have talked to in the EDS community don't recommend a rheumatologist for being treated/diagnosed for EDS. Many have not had a very good experience. Usually a geneticist that is knowledgeable about EDS is really helpful. The ednf.org site has a great online forum with people that are really knowledgeable about ED
  8. Hi Anastasia, I have POTS and EDS and I have made vast improvements in my symptoms as far as POTS goes. I am able to work full-time and exercise pretty regularly. It isn't always easy, and I have definitely had to modify certain areas of my life. (Washing my hair in the shower still causes major dizziness and tachycardia ) At my worst, I could barely be upright for more than a few minutes. I was on STD from work for over 3 months. It was a scary and frustrating time. However, once I found the right combo of medications I was lucky enough to start feeling better. I still have bad days i
  9. Hi cantankarex! You'll have to check with your doc to be sure, but when I was on beta blockers I had to stop them before the test. I also had to stop my midrodrine. More than likely have to stop any meds that could affect your bp/hr results during the test. However, your doctor should let you know the specific time frame. Good luck! I hope you get some answers!!
  10. I'm a big fan of NuvaRing. I was on the pill for many years but once I hit my early twenties I would throw up from them every month. I started the pill when I was 16 for ovarian cysts and horrible menstrual symptoms. Now, Nuvaring is the only thing I've found with no side effects and makes my cycle tolerable.
  11. Thanks for posting! Very good information. I think one of my favorite things to see was this one: 5. Researchers at Mayo Clinic sought to determine whether the deconditioning that is seen in a large percentage of patients with orthostatic intolerance was the cause of their orthostatic intolerance, or a consequence of it. The conclusion they reached was that “[m]arkers of deconditioning are not or are only marginally associated with the orthostatic HR [heart rate] response in patients with OI. This finding suggests that a high prevalence of deconditioning in these patients is a phenomenon as
  12. I think this varies greatly from person to person. My first year and a half of POTS was so difficult. Every time I tried to push myself and be functional, I would crash hard. I ended up out of work for almost 4 months last summer. Thankfully, about a year ago, I started mestinon and it really helped me a lot. For about 10 months now, I have been working full time. I also have been exercising somewhat regularly. I've been running again, and my daughter and I are testing for our yellow belts in karate in a week and a half. I also cook and clean and am even working on starting a cake deco
  13. Hi Melanie! Welcome to the forum. I am so sorry for what you are going through. I can't even imagine how difficult life must be for you. Your positive attitude is amazing and so inspirational. I hope the doctors can find some thing to give you relief and give you a little bit of normalcy back.
  14. Hey you're in Minnesota too? I'm down near Rochester. I think part of the reason I've been faring so well this summer has been the fact that winter didn't want to let go until May. Even though I love summer, the heat is not my friend. I'm thankful I moved back near home from California before I got sick. I couldn't handle the 100+ temps all the time anymore. Good luck with finding some relief!!
  15. Hi! Sorry you're stuck dealing with this stuff too but glad you found us! Heat intolerance is one of my most frustrating symptoms. It doesn't always make my day better, but sometimes if I get in a cool place and lay down with my feet up and rest for awhile and drink a bunch of cold water or gatorade it helps me recover a little. Other times I am just stuck feeling awful no matter what I do. Are you currently taking any medications?
  16. Dr. Fealey is my doc as well and I really like him. He is always willing to give you as much time as you need in an appointment. By far, my favorite doctor that I see.
  17. I've been on Mestinon since last July. It took a good 6 weeks to start working, but it has made a world of difference for me. I spent 6 months straight last year with dizziness 24/7 with no reprieve even laying down. I have a few dizzy moments from time to time, but I actually have been feeling pretty normal in that regard since August/September. (Knock on wood! ) The Mestinon controls my heart rate as well. I also think I had some gastropareisis and it helped me actually have an appetite and to feel like food moved through me again. I lucked out and didn't have any side effects aside
  18. Thanks for your replies everyone! I'm not jumping to any conclusions yet, but it's hard not to have my mind drift that way. Today her nausea has been the worst when she's standing. I am going to let the doctors know about my medical history just so they can keep that in mind. I actually see my neurologist this week to follow up on my neuropathy. I'll probably mention her to him to see what he thinks. The first thing I want to get figured out is all the tummy stuff. She's been having issues on and off for the past 2 years. I think it may be time for her to actually see someone in GI.
  19. Hi All, My daughter (5 1/2 yo) has been having lots of stomach issues for the past few months. She constantly complains about her stomach hurting. She has been having episodes lately of vomiting that will last for a few hours and then subside for a few days and then come back again. There is no fever or other symptoms. Then this morning, she came out of bed and told me, "Mommy my heart feels like it's beating really fast." I felt her pulse and it was crazy fast. She started complaining that it was hard to walk and felt weird to be upright. Not too long after she threw up. It has been my
  20. Thanks for sharing! I love her snarky senses of humor! I think being able to laugh at ourselves is important.
  21. Hope it all went well! Positive thoughts your way!
  22. jangle - Yes they do prescribe Mestinon. I see Dr. Fealey (one of Mayo MN's autonomic docs) in Rochester for all my POTS/SFN issues, and it was his idea for me to try it since nothing else was working. I've never met Dr. Sandroni but I would think she would be willing to prescribe it too.
  23. Haha you are brave issie! The only times I have issues at the salon are when I'm having a hard time being upright for too long. I'm happy because I like my red locks! I'm a natural blond (shh don't tell! ) but once POTS wreaked havoc on my life the ashy blond was making me look so washed out and even sicker. The red adds some color to my face so I don't look so ill when I'm feeling bad!
  24. I live nearby and work in research at the clinic, and my primary care is at Mayo Rochester. My neurologist is Dr. Fealey. He has always been really good to me. He's always running late, but it's worth the wait because he never makes you feel rushed during his appointments. He is the one who suggested the Mestinon for me, so that drug is being prescribed for POTS at Mayo. Not so sure about some of the other drugs. My neuro seems pretty open to different treatments, so hopefully whoever you see will be the same way. Do you know who you're scheduled to see? There's a handful of neuros at
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