Leigh

It's so great that many of you have such supportive spouses! My spouse hung in there for a few years, but couldn't take that I was robbing him of his peak years and couldn't remain faithful. I was too afraid to have sex because it caused palpitations so hard I felt my heart stop and it took my breath away. Kind of kills the mood--especially if you pass out at climax! Embarrassing!

I never meant to suggest anything would be a cure all. I am merely saying that I also thought it was impossible for me. I also had to crawl on my hands and knees or remain in bed. People also told me it wasn't going to work. I respectfully disagree that exercise would fail anyone in the LONG run. Hopefully putting it out there will help some people and others can just disregard it if what they're doing is working without exercise. Private message me if you want more information or help in this matter because I probably won't continue to read the argument that has started here (for my own well being). Good luck everyone on your path to wellness!

I agree with many people on here that everyone's situation is different; however, I wanted to make sure to say that many doctors also tried to tell me that exercise was hurting me. I've discovered that there are a lot of doctors who don't like to admit they lack understanding about POTS. Like Jangle, I started out just minutes at a time and refused to take no for an answer. I was wheelchair bound as well and my body went into shock any time I stressed it with heat, exercise, anxiety, etc... It took years of maintaining a daily checklist of wellness that didn't necessarily include medication. My instincts kept telling me they were prescribing me too many drugs and giving me wrong information. Using my own logic about blood volume and the sympathetic nervous system as well as finding a doctor willing to try unconventional methods turned out to work miracles in my life. Hydration, exercise, and stress therapy help realign the nerves and redirect blood flow. The common denominator is that "I can't" should be removed from your vocabulary. Easier said than done when you go from being an active, vibrant, young person to feeling like you're 90, I know!! I feel for each and every one of you because that's exactly how I felt year after year. POTS ruined my marriage, my job, my life--I wasn't going to let it take the best years of my life. I rejoined this forum to try to make a change. I didn't realize the impact POTS had made (I had gotten to the point of accepting my fate as a slow, dizzy, tired person incapable of most tasks) until I got my peripheral vision back one day and realized I had been literally staring down a tunnel for years and walking against walls!! Sometimes I lay in the sauna (never could before) after my workouts and weep. It's difficult to express to you here that these stories of how it won't work for you were once my story. It DID work for me, and I wholeheartedly believe it's the answer for everyone. I also respect the urge to disagree with me because I don't know you or your background. I challenge you though to try to imagine the possibility that you may not be giving it enough time of doing it every single day even if you receive bad results for a while.

It definitely takes a commitment to never give up trying to exercise. Admittedly, I sort of boycotted this forum for a while because, in my experience, people were ultra negative. It seemed that every time someone tried to shed light on POTS, there was someone replying to beat them down saying, "You must not have it as bad as I do." It's nice to come back to it finding more positivity. YES it takes sooo much work to beat this, but you CAN beat it. A condition by definition is temporary. This is not a disease---it's a condition. It's easy to feel like giving up when you feel so awful with exercise. I started out only able to stand up for 5-10 minutes before passing out, but I exercised until I either had to lay down or was forced (by passing out). I was even kicked out of my gym until I had a dr. release because I was a liability. Chronic fatigue makes a lot of people on here say exercise doesn't work for them, but I can attest that through persistence and patience exercise is the KEY to beating this in the long run. It took many many years, cardiac rehab, and tons of patience, but now I walk half marathons! Strength training in the legs is absolutely necessary as well as retraining your heart to stay at the target. My HR was over 200 for years and now it's normal when I exercise. Every day I go to the gym and literally thank God for my second chance and the ability to move my legs and stand up. You can say you're too tired, too POTSy, or don't have the time to exercise, but I don't think my improvements would have happened without it. Everyone's story is different, and I respect that wholeheartedly. I just wanted to put it out there. I hope to motivate those who think exercise won't work for them that it took me SO long to adapt, but turned out to be the best thing for my heart, bp, fatigue, etc... If you need a workout buddy in Mason, OH let me know! I have an awesome Dr. too!

Have you tried Mestinon? That drug worked for me in the early stages of POTS, which is actually for Myesthenia Gravis (forgive the spelling). The characteristic of this condition is trembling in the jaw, particularly weakness. Also Celexa does wonders for the sympathetic nerves. I experienced a lot of twitching in my eyebrow around the vagus nerve and Celexa cleared that up for me.

I've suffered from CFS since I was diagnosed with POTS 6 years ago. 2 years ago, I was on a regimen that made POTS almost non-existent. Alas, I have fallen off that wagon and I have been working back to a strict regimen of exercise and meds for a few months. I just happened upon Dr. Boynton; a local Chiropractor/Supplemental Nutrition Dr in Mason, OH. He put me on a series of supplements and regular massages & adjustments. It takes a while of regular appointments, but I feel like I'm 22 again! I'm now able to at least work out for 30 minutes before my symptoms make it too difficult. I know I'm on the right track -- I recommend this for people who feel they have tried everything and nothing has worked. CFS and POTS has been connected to Adrenal Fatigue. It makes sense in my case since my POTS was caused from traumatic events during my pregnancy.

Dr. Sargent in Beavercreek knows what's up after dealing with my long ordeal of going to different specialists and Cleveland Clinic. Also, Dr. Bulow for a heart doctor. These people helped me recover almost completely from this horrible illness. I went from being in a wheelchair and sleeping 18 hours a day to becoming a fitness instructor and only having symptoms near my period and on really hot days. Please contact me anytime at: leigh.michelsen@gmail.com I have been away from the site because I got so sick of reading posts from people saying they couldn't do this or that to get better because they had the illness worse than anyone on here. I'm telling you, I had a top-tier diagnosis...it can happen with a lot of hard work and determination!!!!!!!!!

An herbologist told me a month ago to try Ironbound island seaweed, especially Dulse. I haven't had blood volume issues in over a month! It's made me feel so rejuvenated and a lot less bloated than table salt!

I read your post and I couldn't help but think of my long saga of getting diagnosed, which is the case for many of us here. What strikes me about your post is the MS diagnosis. Did they diagnose you on about 20 factors? Because according to Cleveland Clinic that's what it takes. I was kind of diagnosed with MS before I hit the clinic and the Mellon Center told me I probably had POTS. Doctors love to tell women they have depression and anxiety. I almost accepted that until they found a lesion in my right frontal lobe and said I had MS. Turns out it's a watershed that looks like MS but is a result of a bad episode. The Mellon Center sent me to Dr. Fouad and within my 2-day stint there as an outpatient, I had a diagnosis and treatment plan. Unlike most people on this site, I have been fortunate enough to be on the mend. I believe I am actually recovering! I haven't had an episode in 1 1/2 months and I used to have them several times a day! What also strikes me about your post is the bp rising. This is also the case with me! When I pass out, my bp skyrockets to stroke levels, which always freaks out paramedics. Well, not now that they know me... I don't know about Vanderbilt, but I have full confidence in the syncope clinic at Cleveland Clinic. The staff there is great, with the exception of a medical assistant who needs an attitude adjustment. But she's only there for history... ~Leigh

My insurance company doesn't require me to get a referral to see a specialist as long as the specialist is in network. Does Dr. Grubb require your appointment be set up through your PCP? I'm so tired of paying copays just to jump through another hoop!

I read an article recently about pregnancy improving and even in some cases eliminating POTS symptoms. I so hope this for you!! Pregnancy contributed to my POTS, so I'm thinking I'll see what pregnancy does too when we're ready.

I also have this problem, but it used to be a lot worse. Give it some time; maybe it will improve!

I only take Florinef on days I pass out. If you look at the research on Pyridostigmine (Mestinon) it suggests keeping up Florinef for "breakthroughs" or episodes.

I know this may sound crazy or something you don't have confidence in doing, but open your mind and you never know... I tried one after another too. Lexapro was awesome for a long time, but then I just decided I had had enough. So, I went off everything! It takes a lot longer and you have to make diet changes (Omega-3, St. John's Wort, etc...) but it's so worth it. I am so much more comfortable in my own skin (minus POTS) and I have found I can work on coping mechanisms better than ever before!! Before, I was just thinking the drugs were just going to do the work for me. Boy is that a misconception! I know in our drug-driven society it's crazy to think natural is better, but if you keep hitting a wall, see if it works for you. But don't give up after a few months--In May it will be a year for me and I have just now started to turn the corner. ~Leigh

Most definitely I feel better when I work out! Now I'm restricted by doctors, but before I was diagnosed, I was killing myself at the gym. I'd feel great DURING the workout (heart rate average usually around 200), then I'd pass out in the locker room, or have to sleep the rest of the day. Once I even fell off the eliptical, thus, I'm banned from my gym until I give them a note that I completed cardiac rehab and the doctor recommends my return. Makes for a funny story, but it was scary when I didn't know what I had.

I was on Cymbalta before doctors knew I had POTS and it made me suffer greatly. I was sleeping 18 hours a day in July, so I took myself off of it clean. The doctors wouldn't listen to me; I had to do something. After trying Florinef and having a brief success followed by hospitalization, I was put on Mestinon 30 mg twice daily. I increased in myself and had such success I convinced my doctor to allow this. I take 60 mg twice daily and I am slowly but surely improving each week. I'm still in Level II Cardiac Rehab and I experience intestinal upset a couple times a day, but I'll take it! I have some cramping and loose stools, but it's worth it. My doctor isn't concerned enough to take me off of something that has helped me so much. I still take Florinef for "breakthroughs" or episodes...I am with the others; I recover quicker than ever before! I hope you have success!! Does anyone know if you can take it while pregnant? I'm hoping to stay on it if we decide to have more kids. Leigh

I tuned into a cheesy Lifetime movie right at the end last night. It was about Epilepsy and patients' success with the Ketogenic Diet. People portrayed have been seizure and medication free for years! I'm no doctor, but maybe it works with the central nervous system and can help POTS? Does anyone know? The Ketogenic Diet starts with a 24 hour fast, which obviously puts most of us under quite a lot of stress. The Web site said the same for Epileptic patients. Then it slowly introduces fatty foods instead of glucose. Hmmm...Sounds like Atkins only this is monitored and controlled by a doctor. Just a thought...

Thanks to everyone who took so much time and energy to reply to this post! I honestly didn't know I was in such a terrible place emotionally until I read everything. It's weird how this forum brings that out! So many times I wished I could just pull this post and make it go away. Ironically, I think that's what I've been doing to everyone and everything in my life. I bottle up so much so my toddler doesn't have to see it. The past week has made me blow up over and over and I think it's just spilling out all at once. I feel more of a wreck emotionally, but I'm getting better physically. It's hard to be optimistic after struggling for so long. Anyway, you have all helped me tremendously! I hope I can do the same for some of you when you need it! ~Leigh

OK, I think "jhjd" may have misinterpreted my post. After rereading it, it's no wonder. It seems as though I'm someone who just thinks her friends should cater to her every request. Here's the story: Whenever I would get into a conversation or email discussion with my 2 friends they would get frustrated because I never had anything positive to say. Well, I'm not so much in a positive mood since I can't even read my son a story, and I'm not one to fake it for others' sake. Anyway, they started asking how they could help and really all I can come up with is what I mentioned. I haven't told them that because of how it sounds (exactly how it sounded when I reread what I wrote). I agree that isolating myself may be detrimental, but I have found it to be good for me. It helps me focus and gives me all the time I'm not sleeping, working, or going to appointments for my son and husband who are most important. I appreciate whoever said it not to act like I'm the only one having problems. That's good insight. I just can't really find a way to care about others like I used to. I'm not wallowing, I'm just that drained. ~Leigh

I recently had an altercation with my best friend because I'm frustrated with having to keep up relationships while struggling with my health every day. They say I am cutting them off, but I'm really not. I've tried to make them understand and told them to come to the forum and read posts. So, for this purpose, I'm asking you: "If your friends could do ANYTHING for you, what would you have them do?" Besides cure you of course! I just said leave voice mails but don't expect calls back, and take my son for a weekend or clean my house! The main thing for me is to not expect anything in return. I don't have the energy to even think about it! I'm frustrated...How do you tell someone what this is like?

I'm so tired of outsiders thinking this is nothing!!

I live in Miamisburg, Ohio and I'm also a teacher in a non-clinical medical high school program. I have an advisory committee of health care professionals at Miami Valley Hospital and the Kettering Network. I am planning to do a presentation on POTS at my next advisory meeting because I'm tired of everyone in this area having their heads you know where. If you live in Dayton, I'd like to know so I can tell them how many patients there are in the area. Also tell me about the quality of your care at any of the area hospitals. I want to do something to change this; I'm not waiting around for them to experiment with me and figure it out!!! Thanks, Leigh

If POTS has taught me anything positive it's that you never know when you'll wake up one day and be very very limited. I kick myself now for not running as hard as I could, or appreciate all the standing I did at work, or just being able to have a conversation without losing my breath. GO!!!! Ice your legs and neck down daily if you have to, but GO!!!! If you pass out on a safari, lay there a while, come to, then keep experiencing the wonders of your trip! Say to your body, "You're not keeping me down THIS TIME!" ~Leigh

To respond to the following comment, "I see reluctance to try a drug recommended by the POTS experts as somewhat indicative of reluctance to move forward in feeling better. Perhaps I shouldn't say that, but it always frustrates me when I see that many have not seemed to try the different meds for whatever reason and remain feeling miserable." AMEN!! I stopped reading posts for a few weeks because I just couldn't take it anymore. Just like many of you, I'm not trying to make enemies, but many need help waking up and getting motivated again. It's 10 times harder to get motivated now that I have POTS, but all I have to do is look at the things in my life that used to make me so happy and remember it. I want to get back to that life so desperately, I'll try ANYTHING! I got on Florinef/Potassium and thought it was a miracle drug until about a month later and my left side went numb and I passed out over and over until the paramedics came and hauled my butt to the hospital. Then, the cardiologist on call from my doc's office recommended Mestinon/Pyritostigmine because of Dr. Grubb's article. It's only been a week, but I can throw my son up in the air again! I can smile and MEAN it! Before I'm 30, I'd like to LIVE again. I am determined to help others. So, please, if you are someone who is afraid to move forward or just plain afraid of POTS, then something isn't right. Try different combinations until you get something that will work for you and at least help you deal with this. It shouldn't be a life sentence like many autonomic conditions/disorders/diseases.

JenniferInOhio-- Where are you in Ohio? It sounds like you need a friend. I'm in Dayton/Miamisburg. I have a 2 year old about to turn 3. Let me know if you want to have coffee.