potsgirl

I was diagnosed with dilated cardiomyopathy of my left ventricle before I was diagnosed with POTS. I was in congestive heart failure at the same time, and had absolutely no energy. They put me on Coreg and Coumadin (since I also had atrial fib) and eventually my heart got better, but I still have problems with it. Currently I have a blood clot in my right atrium that we're treating. Have you have an echocardiogram? I would ask for that test, because it's one of the best to see what's really going on with your heart. Then they can treat whatever is going on appropriately and hopefully you'll feel better. Good luck, and feel free to PM me if you have more questions. I think I got my dysautonomia diagnosis soon after my heart condition cleared up.... Cheers, Jana

Some of you with resting heart rates in the 30s and 40s...have you been checked for bradycardia or other heart issues? When mine was in the 30s, I had cardiomyopathy and bradycardia and got a pacemaker. It has really helped with my energy (although it's still too low) and my heart issues.

I have a good friend that has similar issues to yours. The Viagra and other pills didn't work, but the shots did. He's very happy with the results, and you can start off with a low dosage and build up. I think you'd get used to the shot fairly quickly, I just had to inject myself for a couple of weeks to get my blood thinned out quickly, while taking Coumadin, and it really isn't that bad. Good luck! jana

My resting heart rate used to be in the mid-thirties, but with a pacemaker, it won't go below 60.

Sophia, I am just like you. I hit a wall hard and fast right about 5:45/6 pm, and there's nothing I can do about it. Then I'm up at 6 am, so I have to take a nap every day for about an hour. If I don't, I hit the wall earlier. I'm so tired of missing all of the dinners and events that happen after 5 pm. Sometimes taking one of my pain pills (Percocet) will give me a little energy, but I don't make it a habit. Cheers All, Jana

My doctor at Mayo told me to drink at least 2 liters of water a day - around 8 cups - but I try to drink 10. It depends on how much salt you're taking in, too.

Welcome Apache~ From your post it sounds as if you might have orthostatic intolerance/orthostatic hypotension. I have the same problems with my BP, it's low lying down, and it gets really low (to the point of fainting sometimes) when I stand up. You really need to have a tilt table test to get to the bottom of your blood pressure and heart rate issues. Do you know what your heart rate is doing when you go from lying to standing? POTS is defined by a jump in your heart rate of at least 30 bpm when you stand up. I would definitely get a good BP/HR monitor so that you can track your numbers to see what your body is doing. You can do a "poor man's tilt table test" at home once you have a monitor. Lay down for about 10-15 minutes and then take your BP/HR reading. Then stand up and jot down your readings at 1, 3, 5, and 10 minutes. Most people's BP will stay around the same, but some of us have BP's that drop significantly, which indicates orthostatic intolerance. If your HR goes up by at least 30 points, you may have POTS. If sounds like you have some kind of dysautonomia, which can affect my bodily functions and especially your brain "fog" and memory issues. It's important to find a doctor that really understands POTS, and there are a number of us on the Forum who had gone to specialists, such as at the Cleveland Clinic or Mayo Clinic. That would probably be your best bet, if you have someone to go with you...definitely look at the list on this site, though, because there may be a specialist near you. Sorry so long, and good luck! Cheers, Jana

I have a horrible time trying to keep my doctor's appointments. If my boyfriend isn't here to take me, I end up having to cancel waaay too often because I just am too tired or my wrists are hurting and I have to take pain meds for that - which I really shouldn't drive after taking those...I've gotten dropped at a dentist's and a gastro doctor's because I had to cancel so many times. It makes me feel awful! I basically just schedule my appointments now when my boyfriend will be available to take me. Not fun. J

I have taken Coreg in the past, too, and remember that my first couple of weeks were pretty weird. Start out slowly, like you have, and then increase every couple of days to a week so your body has time to adjust to the changes. Coreg ended up helping me a great deal with my heart problems, so give it a try. I think it's a pretty good drug, it's just getting through those first couple of weeks. Also...since this has only happened to you once so far, it might not even be the medication. You might want to keep a log of your BP and HR as you slowly increase your dosage. Good luck and hang in there! J

Female, 1/2 German/Swiss and 1/2 French. Another question to think about: Anyone here adopted? My adoptive family is from Germany, but I have met my biological mother and know my nationality where others might not.... Interesting question, though. I was also very fit when I got ill, but I also became sick 3 months after moving to AZ, where they have a nasty virus that comes from the soil called "Valley Fever". They think that may have been the onset of my dysautonomia. (Perhaps I should move back to Iowa? Brrr....) Cheers, Jana

Hi Robin~ How interesting...I have never heard of a doctor that could find the specific site of damage to the brain. You'll have to tell us more about that as you learn...Also, I don't know where you live, but there's also an autonomic specialist with the Mayo Clinic in Scottsdale, AZ. I see him, and I think he's great! He just moved from Rochester back to AZ. Cheers, Jana

I've heard really good things about Dr. Low. You should get some answers, finally! Please let us know what you find out. Cheers, Jana

I also vote 'yes'. I've been getting the flu shot for the last several years, and never had any problems with it. My doctor recommends it, too. So go for it!

Nice idea for a thread, but most days I'm just too tired to care about my make-up. If I do anything, it's undereye concealer, and I always, always moisturize. My hair is long and wavy, so I only need to wash it twice a week and it looks just the same. Thank God for small favors!

Hi Mirry~ I used to take Benadryl for allergies and also to help me sleep at night. My doctor suggested this...I also have orthostatic hypotension, but if you only take one or two at night you should be okay. Keep an eye on your BP for a while to make sure it's not dropping while you try out the Benadryl. Good luck!

Nowwhat, Thanks for replying. I'm glad that your sfn isn't too horrible. My hands and feet usually feel like someone has broken or crushed them, and I can't get the lids off things or function very well until I've had my coffee, some food, and my combo of Percocet and one 50 mg Lyrica. I swear the Percocet does a lot more than the Lyrica, although I'm not on a 'therapeutic dose'. If I go to 200 or 250 mgs, I'm like a zombie and prone to falls. The Neurontin gives me very bad headaches. Does Tramadol do much for you? Anyone have any good pain meds that have worked for them? It's so frustrating not being able to get up to enough medication to really make a difference. Cheers, Jana

Hi Lance~ I've been diagnosed at Mayo Clinic (Scottsdale and Rochester) twice - once for heart problems back in 2006, when I was in congestive heart failure with cardiomyopathy (got a pacemaker for bradycardia, too), and then for dysautonomia at the Rochester clinic about a year and a half ago. A little reassurance - they've been great each time I've dealt with either clinic. You get your tests and results very quickly, and other doctors can see them almost immediately on the clinic-wide computer system. When I went to Rochester, we stayed for 10 days because we had to stay over a week-end. As they start off with testing (sweat tests, possibly tilt table, nerve conduction - it depends on your particular symptoms), depending on the results, it may lead to you having more tests or being referred to another doctor in another specialty. You never know until you get there how long the testing might go on, and at the end of the testing, you'll have another consult with your main doctor. I'm guessing when you get your itinerary that you'll already be scheduled for a consult and some tests. I'm not sure when you're going, but it might be darn cold up in Rochester when you go. There are a couple of hotels that connect directly via underground tunnels to the main clinic where most of your tests should be. That's where we stayed. Roll out of bed, get ready, and walk over there...it's very easy. Of course there are hotels all over the city, but then you have to drive in and park. The Kahler Hotel and their version of a 'express hotel' connect to the clinic, as does the Marriott Suites (?). We ended up staying there, and it was great. A little pricey, but it's cheaper the longer you stay. We saved on food by buying from a local grocery store and storing the food in the suite's fridge and pantry. There's also a microwave and coffee brewer. The Mayo Clinic cafeteria is pretty good, and they have a great coffee/tea cart in the same area. There's a small shopping center underground, too, with restaurants and a drug store, etc. that you reach via the tunnels. Hope this helps somewhat. If you have a specific question, feel free to PM (personal message) me. The Mayo site is also pretty informative. Cheers, Jana

Wow! I hope that's not the case with my insurance and Therapath. I had the skin biopsy done a couple of weeks ago at Mayo Scottsdale, and I'll find out the results this coming Monday, but they're pretty sure it's small fiber neuropathy. As for causes, I typed in 'small fiber neuropathy' and looked at Cleveland Clinic's site and it was very informative about both the condition and the causes. They say that if you can figure out the cause, then they can attack that and the pain and other symptoms won't normally be so bad. Otherwise, most people with sfn tend to get slowly worse over time. Of course, there are many people who are 'idiopathic' for it. My doctor there thinks it's probably related to my autonomic dysfunction, but I'll know more Monday. I tried Lyrica for pain, and that didn't work. Right now I'm taking Percocet which takes the edge off. I guess next up is Neurontin, which hasn't worked very well for me in the past. Do you take anything?

I went back to school in my late thirties to get a grad degree in anthropology. 6 years ago I moved to northern Arizona to be a tribe's archaeologist, walking for miles in the heat and going down into the Grand Canyon to record archaeological sites. I loved it! Approximately one year later I got sick and needed a desk job. I moved to Tucson, worked for the county as an archaeologist for county projects with hardly any field work. Again, one year later I got sicker and had to quit my job completely. I HATE not being able to work and be active. I try to stay positive that one day I will work in my field again, with a desk job or from home. I would be happy right now just being able to commit to a volunteering position in one of my areas of interest. It's so difficult when you have no idea how you'll feel from one day to the next. Hang in there, everybody. Who knows, we may get back to work after all!

I think there are many of us here that can relate to what you're going through! Insomnia seems to be common with POTS people, unfortunately. I could tell you what I take, but I have orthostatic hypotension and heart issues, along with chronic pain, and so what works for me probably wouldn't work for you. I would ask your doctor for the best thing to try for your sleeplessness. I take Paxil, Clonazepam (for anxiety), Trazodone (for sleep) and Lyrica for my pain. The first three I take in tiny doses - it's the mixture that works for me. You might have to experiment to find the right drug(s) for you, too. I wish you luck in solving your sleeping problem quickly! Cheers, Jana

As soon as I figure out how to PM you on this new system, I will. What part of AZ are you in? I'm in Tucson and would love to meet. Will get a PM to you hopefully soon....

I also have my bed raised 4" and sleep with two pillows. I usually sleep on my side, but sometimes on my back as well. I was told to do this by my autonomic doctor.

Thanks, everyone, for the responses and kind good wishes. I'll do an update next weekend when I find more out after my Mayo appointment this Thursday. You guys are great!

I know that when I went for a massage, which I was highly anticipating and thought would make me feel better, I felt sick as soon as I sat up on the massage table. I had to sit for awhile, and then slowly get dressed and make it out of the place. Thankfully I had my boyfriend picking me up, because I felt very nauseous and certainly couldn't have driven. So, you definitely aren't alone. I tried two chiro appointments a few years back, and they made me feel pretty horrible, too. I felt better after a couple of days, so hopefully you will, too. Has anyone tried acupuncture? A friend of mine with POTS/fibro gets relief from that. Feel better soon!

I've also been told by both my neurologist and my cardiologist to eat tons o' salt, drink 2-2.5 liters of water a day, which includes some electrolyte drink. Nuun and Camelbak tablets are good, you just drop them in your water. They're not high in sugar, and if you want to cut out almost all of the sugar, go for 'G2' Gatorade. There are a lot of sports drinks out there now, and I'd be surprised if there wasn't one that meets most of our needs.