pickledfairy

What a wonderful topic. Strangely, I have been thinking along these lines myself this weekend. I am coming up on the year anniversary of when I first got sick (although it took until four months ago to find out what was wrong). I think back over the past year and I am at times amazed by how positive I have been despite the many things I have had to give up (i.e. a job I love, friends, independence, a life in Memphis to move back home to Maine, etc.). Perhaps it was my work as a child life specialist with pediatric oncology patients for the past four years that has helped me to think about this situation in a different light and make it through the dark days. . It's funny, I find myself thinking about situations I helped those children and families through and think, how did so and so deal with these same feelings of grief or frustration or helplessness. I am greatful that I was able to learn the lessons I did from those patients. Don't get me wrong, the tears still come....As I am ill longer I do find myself wondering "what if I never get better?", "what if I can never get back to my dream job?" "how can I change my perceptions of my dream job to perhaps return some day?", "will I ever find someone to love and have a family with if I continue to be sick?". I think what gets me through day to day is to take advantage of the good days and know that there will be bad ones. Thank-you to everyone who has written, I believe I will learn a lot of coping techniques from all of you. Sheridan

Robert, I have POTS as well as hypertension. I am on Labetalol (150 bid, was 300 bid, but I also have asthma which was worse on high doses of betas). I was on 300 bid of Toprol before the Labetalol and actually felt worse with that drug. The Labetalol has helped my BP although my HR continues to be high even when sitting. I haven't experienced any side effects from it except for the tingling it causes on your scalp, it's just an annoyance really. Good luck on your search. Sheridan

Thank-you everyone for replying, if it continues to happen I will be sure to ask about alternate blood testing to be sure we are getting at the right numbers. I haven't had anymore slurred speech, but the mucle twitching/cramping has continued off and on. I am supposed to talk with my neurologist about an upcoming admission today, so we will see what he recommeds. Tessa...as for the Gatorade to help when I feel the symptoms coming on. That was just a guess on my part, I knew from my work in medicine, that muscle cramping can be caused by electrolyte imbalances and thus thought I should really bulk up on the Gatorade and see what happened. Obviously something was out of whack with my electrolytes and fluid volume or I wouldn't have felt so much better after the 2L of lactated ringers. Sometimes I feel like this is all a guessing game, trying someine new to see if it will help me out in anyway. I'm glad glad I am not alone (I didn't think I would be)...thaks again for the advice. Sheridan

I spent Thurday night in the ER ( we all know how much fun that is...although the resident had heard of POTS and autonomic neuropathy so at least it was a start). Anyway, I work up with a horrible charlie horse in my left calf the had me jumping out of bed, which of course lead to me hitting the floor almost instantly! When I woke up the pain was minimal, but I had a banana and began my Gatorade chugging to see if it would help. Then at 2pm I noticed that my muscles in my legs and one of my arms were twitching uncontrolably, almost like they were rippling and my mother noticed my speech was slurred with certain words, my tongue actually felt like it was too thick and I couldn't coordinate it to speak. So, my neurologist said to head to the ER to check it out and especially get my electrolytes checked. The ER doc thought my potassium would be low, but nope....only sodium and phosphorus were a bit low. They seemed puzzled by the severity of the symptoms and then not having labs to back them up. I did get two liters of lactated ringers which after the first one the symptoms stopped. Has anyone experienced anything like this? I can't believe I would be dehydrated after fluid loading all day, but perhaps I was. I also started Florinef about a week and a half ago, so I'm not sure if that has anything to do with all the craziness. The speech problems have not occurred since then, but my muscles will still twitch and cramp at the end of the day. Just curious if I am going nuts or if my body truly is on strike !!! Thanks for you input, Sheridan

On a typical day I am usually worse in the am and like momtoGuilana I am also worse after meals. For course there are days when it is bad all day for some unknown reason as of yet.

Just sending some positive thoughts to you nikkigirl. Hang in there, I know it is tough. I was actually sent to Mayo clinic for suspicion for Cushings or pheochromocytoma before I was diagnosed with autonomic neuropathy and POTS (also at Mayo), so I know it is scary, but there are treatments for both of those diagnoses so, please don't let yourself get too worried, if you're anything like me it will make your POTS symptoms worse! As for the Cushing's tests, I had bloodwork as well as three 24 hour urine tests to see how much cortisol is excreted... so be aware that you may need to do more than one test to rule that out. Good luck and try to be positive....believe me I know it is hard when you feel like you body is on strike! Sheridan

I have been on Mestinon for four weeks now. I haven't noticed any side effects (I am on 60mg three times a day) as of yet, so maybe I will be one of the lucky ones. Like Sunfish it has helped me more with my GI hypomotility (i.e. no more constipation) but has not helped me with any of my orthostatic symptoms or nausea. I say that any drug is worth a try if it could potentially get us back on our feet. It looks like my neuro will keep me on the Mestinon and add others to see how the combination affects me. Good luck and I hope it works for you! Sheridan

I recently started seeing Dr. Novak at BMC. He was very compassionate and thoroughly explained the mechanisms for what I have been experiencing. I did not have my TTT there, but he did go over the results and did his own neuro exam. He gave me an additonal dx (than the one I got at Mayo) and laid out his plans for treatment (we have three things we will try before admission and taking me off all meds and then adding one back at a time and seeing it's affects on my TTT). He is also very willing to communicate with you between appointments when you have questions and concerns. It sounds like you can't go wrong, which ever practice you choose....hopefully one of them will be covered by your insurance. Good luck! Sheridan Dx: POTS, Autonmic neuropathy, asthma, GERD Meds: Mestinon 60mg tid, Labetalol 150mg bid, Omeprazole 150mg daily, Xopenex inhaler, Advair inhaler bid, Yasmin Others: Lots of fluids and salt, ginger tea for nausea, swimming and walking when able

Hopful-girl.. I just wanted to respond to your question about others who have fluctuations in BP. I have the same problem. While sitting and lying my BP tends to be high (130/90 with beta blockers) but when I stand it will be around 140/100 the first minute then it will be 100/60 at three minutes and then 150/90 at five minutes and then back down again. My HR just steadily goes up, it doesn't seem to bottom out. My doc suggests that it is the fluctuations are what cause me to have syncopal or near syncopal episodes. It is making it a challenge to treat because I also have asthma so I cannot be on too high a dose of beta blockers without having trouble. Not to mention trying to combat the hypovolemia with extra salt....they can't quite figure out what to do with that one . I also agree that it is difficult to find physicians who are well versed in POTS or autonomic neuropathy, and even the ones who you may see that are experts readily admit they don't know much about the mechanism or have a certain tx that works for all people. Having worked in the medical field (pediatric oncology) I have learned the benefit of being my own advocate. In fact just today, I brought a research article along with me to my dental appointment. Most doctors will take the time to read an article from a peer reviewed journal, and it will help back up the information we all gather, thankfully, from the internet. Cheers, Sheridan Age 28 Dx August 2006-POTS, hypovolemia October 2006-autonomic neuropathy, testing for gastroperesis Meds: Mestinon 60mg tid, Labetalol 150mg bid, Advair, Xopenex, Omeprazole Other helps: Ginger tea for nausea, increased fluids, increased salts, swimming