worththewords

I met with Dr. Thompson for the documentary. What a great doctor! I hope your appointment helps you. I live in Naples and over the past 5 years, I can't say I've found a doctor in SWFL that specializes in this condition. Who was your endo? My endo is probably the only person who really "gets" POTS and what I go through. My gynecologist has a family member with NCS so he also understands. I also have an allergy doctor who was nice enough to educate himself on POTS and what would help or harm me. These doctors just treat what they specialize in. You may need specialists for your allergies and uti problems. I really gave up on finding an all in one doctor. I have a great neuro in Naples who is familiar with dysautonomia and willing to help. I really haven't had luck with any cardiologist though. I'm sure your situation with your GP is very frustrating. Too bad he didn't try to refer you to anyone that he thought might be helpful. But at least he didn't do you a disservice and try to treat you without really understanding what you have. Feel free to PM me if you want any names/contact info for the Naples/Bonita Spring doctors I mentioned above.

Happy belated Birthday! Glad to hear you had a good one!

I'm guilty too. I never realized it though until my disability attorney pointed it out to me. He said, "You appear mentally calm but you rarely sit still, is this because of your condition?" I had to think for a minute but I'm always crossing my legs and re-crossing or shaking one of them (i guess to keep my blood going up instead of pooling?) and when I'm at home I either sit on one or have one or both propped up. I don't know anything about the blood clot factor or Midodrine. I don't stay in the same position for too long so I'm not worried about blood clots.

Dr. Grubb started me on Cerefolin NAC and Mestinon. Cerefolin NAC is not a miracle drug but I've noticed a slight improvement in energy/concentration. It took me about 5 days to get over the initial side effects. With Mestinon I haven't really noticed any improvements. Maybe I am less achy but I have been resting the past few days. Not sure if that is from the Mestinon or the rest making that better. I have been getting hot flashes and headaches though after taking Mestinon. Anyone else experience these symptoms? Just wondering if they will eventually go away. I did do a search on this topic but didn't find any posts that mentioned my side effect complaints. Anyones experience with starting this med would be appreciated!

I thought it was really good too. I called as many people as I could think of to tell them to watch. I tried to tape it but something got messed up so I think I'm missing a part. I forgot about the 1am airing. Maybe it will rerun sometime so I can tape it again for my family that missed it. I felt a little sad too. I would never wish this on anyone else so it was sad to actually see someone else that had been through it. I got so many calls and texts asking me why I am still in Florida and how do I survive since she decided to leave Florida for a cooler environment.

Thanks for the links! And also the e-mails and PMs I've been getting. I really appreciate the support. I sort of drew a blank despite all the articles I've read over the years and worried I wouldn't find one with the 'disabling' wording. My own attorney kind of scratches his head when I try to explain this condition so he wanted to have a better understanding and he figures the judge is going to be clueless. According to my attorney I got a judge who is "easy," my hearing is on a Friday, and it's right before lunch time. Apparently these things are all in my favor. Of course it sounds a bit biased! I guess I'd hate to have a hearing on a Monday morning?! This has been a long time coming. I filed in 2004 and was obviously denied. In 2005, I was told I would be given a hearing but then never heard anything about it. I almost thought I was forgotten in the shuffle until my attorney's office called in December to say I was getting a court date.

I have my disability hearing on Feb. 8th. It took 2 years to get the court date. My attorney asked me to bring in articles written about POTS that can support that it is disabling so that he can present them to the Judge. Anyone know of any good articles? I found one from Dr. Grubb but it lacks the 'disabling' part.

It was a cardiologist I saw for the first time that was telling me that I was sort of doomed since I have POTS and my life-span would be shortened. THEN, he had to step out and take a call from his attorney. (Hmm, wonder why?!) That was enough for me to just walk out and a nurse stopped me and I told her the doctor wasn't worth my co-pay. She apologized and they never did charge me for a visit either.

Wow, you should have told him he wasn't worth your co-pay! I've had to say that before.

I take Klonopin and added Provigil to the mix for a short period of time. They do very different things. In fact, I was told the Klonopin would help me 'come down' from the Provigil so I could sleep at night. Klonopin helps take the edge off of a lot of my symptoms. I was given Provigil to help with my fatigue and concentration. I always feel wired but tired, that's the best way I can describe it. I couldn't handle Provigil though, it made me terribly light sensitive. I spent the days that I was on it shielding my eyes. Just my experience. Not sure why you would pick one or the other. Maybe both would work, but you should try one at a time so you know which one is causing what side effects. The only side effect I get with Klonopin is a bit of drowsiness but it isn't bad.

I know Johnny Cash had neuropathy.. who knows.. maybe even more.

Country star recovering after brain surgery NEW YORK (AP) -- Rosanne Cash was recovering at her Manhattan home following brain surgery last month for a rare but benign condition. Cash Cash was back home December 4 and "recovering comfortably from her surgery, which took place on November 27," said a posting on her Web site. "She extends thanks and appreciation for all the love, good wishes, prayers and kindness." The 52-year-old singer is expected to make a full recovery and will resume recording her debut album for Manhattan Records early next year, the EMI Group-owned label said Wednesday in a statement. She will resume her touring schedule in the spring and finish writing a book to be published in early 2009. Cash decided to have the surgery after being diagnosed with Chiari Type I malformation, her manager said last month. According to the American Syringomyelia Alliance Project, a nonprofit clearinghouse for information about Chiari and related disorders, the disorder is a congential malformation of the skull that affects the brain and spinal cord. Symptoms, which include severe head and neck pain, are worsened by coughing, sneezing or straining, and often don't show up until adulthood, the organization says. Cash is the daughter of the late Johnny Cash. Her hits include the crossover "Seven Year Ache" and "The Way We Make a Broken Heart." source: http://www.cnn.com/2007/SHOWBIZ/Music/12/1...h.ap/index.html

Personally, I would get a second (third or fourth) opinion if I were in your position. That's a big decision to make and I wouldn't want to rush into it. Best of luck to you in the decision making process and keep us informed of what you decide to do.

If you have balance problems, I wouldn't recommend them. My cousin fell while gliding on his Heely's and broke his arm from the fall.

My mom was diagnosed with autonomic neuropathy after finishing chemo treatments. The neuro put her on mestinon and it really helped her with her symptoms. However, she has the wobbles, gets close to fainting, and sometimes does faint. However, I must say she does ignore her warning signs. For example, one day she told me she was dizzy and she didn't look so good. I told her to sit down and she kept walking and passed right out. So in some ways she is her own worst enemy. Anyway, after being on mestinon awhile her fainting started increasing and she had zero energy. I swear I developed inspector gadget arms (go go gadget arms!) and I was running around catching her all the time so she didn't hit her head on anything. She did a holter monitor and it showed her average HR was 40 and she spent the majority of the 24 hour holter in the 30's-40's. Her cardiologist scheduled her for a pacemaker then realized maybe the mestinon was causing it. She went off the mestinon and the HR came up to about 55. She still wobbles and almost faints and had one fainting spell off mestinon. Both neuro and cardio wanted her just to stay off meds, however, the joint pains and muscle aches were too much. The neuro doesn't entirely believe the mestinon is the cause of her low HR and put her back on it. Her neuropathy symptoms went away but now the cardio wants her to try other meds because it isn't healthy to keep her HR so low. They are both scratching their heads on what meds though. Just curious, besides mestinon, what helps for autonomic neuropathy? And knowing it can lower your HR makes me want to take mestinon, my resting heart rate is in the low 100's. If only my mom and I could just divide up our heart rates, we would be in good shape.

Thanks, Amy, for the breathing tip. That might come in handy. Sure, doesn't hurt to try. Sophia, thanks for the words of warning. I have many pilots in my family so I've been in all sorts of planes since I was a baby. I've never really had a problem with motion sickness. Dizziness isn't really one of my symptoms, nor am I fainter or have BP or HR plummeting problems. However, tachycardia is a problem for me and I know I'll be a mixture of excited and anxious. Hopefully the klonopin can curb some of that for me and chill me out a bit. The only reason I have a fear of flying is due to something I experienced on a commercial flight when I was a teenager. I think I actually feel a little better being on smaller planes. The way you said you had the feeling of your HR going through the roof is pretty much what I'm trying to figure out how to contain. Morgan, I will be strapped in upright and the area is pretty snug so I'll have my husband-to-be right against me. We were actually supposed to go up today as the pilot is trying to memorize all that he has to say but it's very windy. So we will be going up again sometime this week for a rehearsal in the sky. I'm just keeping my fingers crossed it doesn't rain on our wedding day, otherwise we will be using the pilot's private jet - not as exciting but our parents would appreciate being onboard.

It's in my local grocery stores with the regular Gatorade. The might be a little hard to spot. So far I only know they come in orange and yellow - look for a silver cap on them. The sodium is double in Endurance than what is in regular Gatorade. G2 is coming out in 2008, the sodium will be double and I believe the sugar will be cut in half. It's so silly that I'm actually looking forward to a new drink coming out.

I drink Gatorade and water throughout the day. Sometimes I have a Gatorade Endurance if I'm having a bad day (It has way more sodium in it but same amount of sugar). I'm waiting for Gatorade: G2 to come into stores. Apparently it is more sodium and less sugar than regular Gatorade. Gatorade came up with G2 when they found out most sports players were drinking Pedialyte because of the less sugar/more salt factor.

I have problems with adrenaline surges from time to time. My main complaint with POTS is tachycardia so it really makes that so much worse. But silly me still wants to get married in a open cockpit biplane. (Oh, did I mention I have a fear of flying?) It may sound crazy but my fiance and I wanted to do something memorable and I guess I felt like being brave so in November the two of us will be climbing into the front of the cockpit of a biplane with the pilot located behind us and saying our vows over the ocean. I do plan on taking a klonopin prior to the flight. I usually do that when I fly anyway to curb my usual flying anxiety. But I'm not sure if that will really stop an adrenaline surge from happening. Anyone have any tricks they've learned to slow one down? I just don't want my POTS messing up my day. However, I can imagine the possibility of it happening considering, 1. I'm already thinking about it, 2. the excitement/nervousness of getting married, and 3. the excitement/nervousness of being in an open cockpit biplane. Any suggestions would be appreciated!

Honestly, not to sound intentionally cynical, but there are certain things I just give up on telling/explaining to well-meaning people, especially the salt thing! If they ask what's new or if I am starting something new and want someone to know, I might say "Oh I'm trying a new med or therapy and it is supposed to *insert positive things it is supposed to do*" More often than not they don't ask what it is or I suddenly forget what it is called because more often than not if I name the medication so and so's aunt's brother's cousin took a medicine that also started with a C. It gets silly sometimes! Salt is a really hard thing to explain to people. Growing up I never had salt in my diet because my mom thought it was so unhealthy. The only thing I can think of that I did eat growing up with salt was popcorn at the movies. You can imagine the look on my mom's face when she was at Mayo with me when I was given my diagnosis and they stressed the importance of increasing salt intake to someone who never consumed salt intentionally. I had a really hard time developing a taste for it on my food and still feel like it sort of ruins my food. Good luck with the salt tablets, I know they really help some people.

I think you should address this with your therapist and even how her responses make you feel. It would be a good idea to include a brochure or briefly educate her. I was told by a therapist once that her greatest learning experience came from when a patient being straight forward with her about whatever they didn't feel was going right. It's the only way to get things on the right track and create better understanding/communication.

This is a good topic.. I'm getting married in a couple months so this is something my fiance and I go around and around on - basically changing our minds on what is the 'right' thing. My gyn suggested to me that I should go the surrogacy route. He felt I could tolerate the fertility drugs necessary to make it happen but was very concerned about what the actual pregnancy would do to my POTS. He imagined it would make things much worse for me and suggested surrogacy so I wouldn't have to go through the actual pregnancy. Quite the expensive option but it's been an option on the table. Sometimes though I think of how terrible I would feel if I passed this on and my future child(ren) end up with POTS. I wouldn't wish this on my worst enemy so I can't imagine how I would feel if my own child ended up with it and I had known there was a risk of it. (This is the part we go around and around on). My fiance doesn't think it matters - I struggle with the thought.. The twist on the whole topic for me is that when my mom was my age (24) she suffered from the same symptoms I have. Of course she was diagnosed with panic attacks. During her pregnancy with me she got much worse and was constantly fainting. (I was dropped on my head before I was out of the womb!) However, once I arrived all her symptoms completely disappeared. So there has always been a part of me that has wondered if I should just try to go through a pregnancy on my own and see if maybe the same thing would happen. It's worth noting though that my mom had numerous miscarriages before she was able to have me and I am her only child. That's always a concern when I think of this plan. However, things may not go like they did for my mom. It may be rough and I would hate to spend the first year of my child's life bedridden or unable to care for him/her. I had always hoped to just have one child. I enjoyed being an only child and I had plenty of friends that felt like siblings. My fiance has a brother so he would like 2 children. I always thought about having one of our own and adopting one to be our own as well. We'll see though. Our new puppy keeps me busy enough at this point!

Anyone else have extreme light sensitivity of Provigil? My eyes were hurting so bad over the weekend when exposed to even normal amounts of light. I don't know if Provigil and I agree with each other very well. I managed to fall asleep for 3 hours Saturday night only to wake right up at 3am and stay up WIDE AWAKE until 6am. I didn't know what to do with myself. I was way too alert for those hours! I think my overall fatigue finally kicked in and allowed me to sleep for another hour. I am always wired but tired. I almost think I need to get my sleeping under control and see how much of my daytime sleepiness will go away. I'm lucky if I get 4 hours a night of restless sleep.

I have a Vit D deficiency and I take 400IU a day. I was told it may help relieve some of my joint pains and muscle aches when my numbers get in the normal range.

I'm on attempt #2 of taking this medication. Currently I am on samples but my doctor said he would have to come up with some fancy wording to get the insurance to cover it if I stay on it. Last weekend was attempt #1. I took half of a pill which would be 100mg. I ended up feeling severely nauseated but wide awake which was a terrible combination as all I wanted to do was sleep that feeling off. I did somehow manage to fall asleep (maybe from feeling so lousy?) and when I woke up and stood up I blacked right out. (I'm not a really a fainter so that was weird for me.) When I did wake up the nausea was gone but through the day I would go back and forth from feeling alert and amazing to feeling waves/surges of adrenaline. As the day went on I got a wicked headache and I finally managed to crash out at 3am. I decided not to take it during the week as I work and didn't want to be going through all of that at work. Today is attempt #2. I'm trying again because I know some meds the side effects wear off. I was also extremely worn out the weekend I initially started and I'm not sure how much of that contributed to my experience. Here we go again..