hholmes13

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 will feel tired and try to sleep, but I will lay awake most of the night. I will get bouts of tachycardia (while supine) and what almost feel like adrenaline surges. I am not over stressed, but it feels like something is scaring me out of my sleep whenever I start to doze off. I have tried taking 2 Benadryl (usually knocks me out), and even this does nothing. Thankfully it isn’t every night, but it leaves me incredibly worn out and frustrated during the day. I haven’t seen my neurologist since 2014 since I have been doing well. I never thought of myself as having “hyper POTS” because I always had a low bp. However, this has been happening more frequently over the past 6 months, and I am not sure what is going on. Has anyone experienced this? If so, what works for you? I am planning on calling my doctor if it continues to worsen, but I figured I would check in here first. Thanks!!😊

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 questions about Mayo itself...feel free to message me! I'll try to help you out the best I can! I hope you find some help while you are here. Take care and welcome to the forum!

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 unfortunately. Luckily for me, I don't feel bad after I stop. I have been feeling pretty close to normal. I can tell if I have overdone things, and then I know to pull back. Make sure to listen to your body. That is the most important thing. I am also doing karate classes two nights a week. This has been really fun exercise for me. I will hopefully be testing for my blue belt in the next few months. I am hoping to have my black belt sometime in the next 2 years. Oh and one other positive that came from all this exercise...I can take a shower without laying down afterward! Even when I felt good, hot showers and washing my hair were miserable. I would still end up laying on my bed for a good 15 minutes afterward because I would be so nauseated and dizzy. That doesn't happen at all anymore. I was so excited when I realized that a few months ago because that was one of the remaining issues I couldn't seem to shake. Thanks again! I will definitely keep you all posted on how things are going.

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 almost 4 months. I had multiple docs tell me because of EDS/POTS, it would be unlikely that ever doing something like a half marathon would be possible for me even though my symptoms were finally getting controlled. Well, that was enough to make me want to prove them wrong. (Spite is a powerful motivator!) I first did a round of P90X this spring to get my muscles ready and then started running in June. My training had its ups and downs, but I am so proud to report that in September I completed a 10 mile road race and that yesterday, I ran my first half marathon! It was a pretty tough terrain to run on, so my time wasn't quite as fast as I had planned, but I ran the entire 13.1 miles without walking once! This was a very personal goal for me because at my worst point, we weren't sure if I would be able to work again. We were looking into long term disability/SSI. I got so overwhelmed at the finish line yesterday. My mom was waiting for me there, and as soon as I crossed and got my finisher medal, we just sat there and hugged and cried. That is a moment I am going to carry with me for the rest of my life. I don't know how long this good spell I have had the past year or so will last. I hope it will be long-term, but either way I am so thankful for what I have been able to accomplish. I wanted to let those of you struggling know that things can get better. I hope everyone here is well and is hanging in there. I check on you all here often and am always sending positive vibes your way when I see your struggles even if I don't get a chance to post a reply. This site is such a wealth of information and support. You guys were a huge help when I was at my worst, and I will always be grateful for that. Sorry this got a little long, I really wanted a chance to share a happy story. Best wishes to you all, Heather

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 took about 6 weeks to really start working for me, but it gave me my life back. As a side...I am also on 10mg of midodrine up to 3x a day. This combo worked great for me. I hope things work out for you. It sounds like you have been have a really rough time lately.

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.

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 EDS and good doctors for being diagnosed. I would definitely check it out. Good luck!

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 if I overdo it or don't get enough rest. I have gotten much better at listening to my body and telling people no when I need to. I also make it a priority to stay well-hydrated. Granted, I have other issues that are related to the EDS, but for me POTS was the most disabling part. Every person is different, but I wanted you to know that it is possible to improve. When I got my EDS diagnosis, I had the same concern as you. Hang in there! I hope you start feeling better soon.

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!!

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.

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 associated with OI but unlikely to be the primary causative factor of OI. Although OI patients clearly benefit from physical reconditioning programs, our findings may in part explain the variable and often incomplete response to this approach.” I know exercise is good for us, but I hope this will help doctors stop blaming everything on deconditioning!

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 decorating business on the side. I definitely don't feel exactly like I did before got sick, but I would say I am very functional. However, I also now know my limits. When I'm having an off day or start to feel dizzy, I know it's time to take a break and lay down with my feet elevated. I've learned to say no to things when I'm out of "spoons" and how to take care of my own needs. I have had some issues with EDS-related stuff and I developed small fiber neuropathy about 6 months ago, but compared to the constant dizziness/tachycardia/fainting....I'll take it! I do worry that I'll run into a major flare again sometimes...but for now I'm just enjoying life. I definitely won't take being able to stand up or walk around for granted ever again! I agree that taking life a day at a time is very important.

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.

Adorable!!

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!!