potsgirl

Thanks to all who offered input! Those are very good suggestions, and hopefully someday we can acquire a sponsor and have an actual conference again. That being said, I'd like to offer an open invitation to anyone in the vicinity of Phoenix, AZ, to meet with a group of six or seven of us on May 7th. If you are interested, and I don't have your email address yet, please PM me for more details. It should be a fun time! Cheers, jana

Gary, I also have a lot of upper neck/lower base of skull pain. It gets stiff and seems to usually occur when I'm having my worst headaches or migraines. I've also thought of getting myself tested for meningitis due to the severity and length of time my headaches can last - sometimes for 10 days to two weeks. So, here's to us suffering in good company. Please let us know how your tests turn out. Cheers, Jana

Nauthiz~ I have a history of cardiomyopathy, and what you're experiencing sounds like it may be rather serious. Make sure your cardio's secretary knows how serious you think this is, although if I were you I think I would head for the ER. Chest pain, especially something new that you've not experienced before, should be approached with caution - better to hit the ER then to have a heart attack. It sounds as if you need an echocardiogram done. Have you had one of those before? Take care and get help if need be! Potsgirl

Hey AG, Your PM's only show up under your 'new messages', not on the forum. You should also get an email stating that you have a new 'PM'. I just replied to your PM, so you can look for it. Hope this helps! Cheers, potsgirl

Hey Everyone, A few of us have been PM'ing and emailing about how fun it would be to try to get as many of us with dysautonomia together as possible for a week-end of fun. We could try to find a central location, and book rooms at the same place, a reasonable but comfortable hotel. It seems that summer would probably be the easiest time for most of us to get away. I just wanted to see how much interest there would be, and then perhaps with our wonderful moderators, we could come up with a plan. Ideas, anyone? Thanks! Potsgirl Jana

Casey311~ I am not a doctor by any means, but I don't think you've taken the Mestinon long enough to make a decision yet on if you should drop the Toprol. A lot of times new meds will have side effects, and you have to wait for at least a week if not two or more to see if it's the right drug for you. My guess is that you'd be ok waiting for Dr. Grubb to return, unless you get really sick on the Mestinon. Take care, Jana

jenwic, as far as i know, it's common in people with dysautonomia. it's simply a lack of blood flow getting to your extremities, so you're likely to also feel it in your feet or arms/legs. they may also turn a bluish or purplish color. mine do both, and i know it's a little disconcerting at first, but shouldn't be much to worry about. take care, potsgirl

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? No, I have pooling mainly in my abdomen. 2. Have you ever been diagnosed with EDS or suspect that you may have it? No 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Sometimes I have palpitations, shortness of breath 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? No 5. Have you ever been informed by a doctor that you have low blood volume? That's something I still need to ask my doctor about... 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Yes, although it's mainly constipation 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? Yes 8. Did your POTS arrive suddenly? Yes, after a viral infection. It waxes and wanes, but I'm definitely not getting better. 9. Is your skin pale? Scarily so, and my undereyes very dark 10. Please the top 6 worst symptoms that you experience with POTS: Fainting Headaches Fatigue Visual issues Sensory Overload - can't stand loud noise, bright lights, too many people Dizziness/Lightheadedness

Hi Everyone! Well, the joke's on me. I lived in Iowa most of my life and was extremely sensitive to the cold. I longed for the day I could move to a warmer climate. Five years ago I got a job in Tucson, AZ, and now I am incredibly sensitive to the heat and sun. I tried to go for a 20 min walk a few days ago, in the morning, with a temp of 78 degrees, and almost couldn't make it back home. I got short of breath, was trembling, and almost passed out. So much for being active outdoors during the day! Best wishes to all & Cheers, potsgirl

ajw, you took the words out of my mouth. i am told to only make one change on my meds at a time, and then wait for at least a couple of weeks before making another change so that you know which drug is really causing side effects. Great advice. cheers, jana

I too, am one of those people who seem to have 'just' POTS. Although I do have a rather unusual case (or so I'm told by my cardio and neuro docs) because I got sick with a virus, then developed dilated cardiomyopathy and went into congestive heart failure. I have a pacemaker because my bradycardia was so bad, but also had to be on Coumadin since I had a lot of atrial fib. A year and a half later, I felt much sicker, and was then diagnosed with POTS. They're testing me for genetic markers, because I guess I am a candidate for amyloidosis. So far, so good. Thank God. Cheers, Jana

Hi Rene, Sorry that you're suffering from bad headaches. I can really relate to that. I also take Paxil, and have for years, but have never been able to get past a dosage of 15 mg. I used to take 10, but with this illness and new stressors, {including having to quite work, finances, etc, etc) I had to move it up to 15 mg. I have a hard time tolerating medications, and usually have to start at a very low dose and build myself up. Perhaps you need to start on a lower dose of Paxil? I know starting new drugs (Atenolol?) can certainly create some pretty horrible headaches/migraines. Mine also started out of the blue, and I have migraines almost daily. I take Darvocet, and my neurologist tried to start me on Topamax, which you take daily to PREVENT migraines, but I couldn't tolerate it. I hope you figure this out soon. I know several of us do take painkillers to deal with headaches/migraines. Here's hoping you find some relief, soon! Cheers, Jana

Gary, Wow! Thank you for writing such a thought-provoking missive. Everyone has different theories, and your message has brought out some great discussions. This is how we move forward... Cheers, Jana

Twinmom, I have to second what jump said. Those numbers are within normal ranges. Like jump, I would definitely get a tilt table test done, since that is the standard test for diagnosing POTS. Also, make sure you log your BP and pulse numbers throughout the day, to see if there's a difference in readings. How do you feel when you've been standing a long time? Do you ever faint or feel like passing out? I too, like jump, am definitely worse in the morning. My numbers tend to run like this: Laying down: 95/64 pulse 60 Standing up: 68/55 pulse 130 (at 1 minute, about the same at 3) I wish you luck and take care of yourself! Keep us updated. Cheers, Jana

I never seem to feel as if I've gotten enough sleep. I'm so tired I go up to bed around 6:00, read until 7:30 or 8, then am usually asleep by 8:30. I wake a lot during the night, and am totally awake by 6 am. I never feel 'rested', though. I try to take about a 1/2 hour nap during the afternoon, but am rarely successful. I would love to sleep later in the morning, but even if I really push myself I can't make it after 7/7:30 without crawling in bed. Kinda kills the nightlife! Cheers, Jana

Nina~ My thoughts and prayers are with you and your father. I'm sending positive energy your way. Please remember to take the time to take care of yourself while you're taking care of others...It's so important. Please keep us updated on how you and your father are doing. My best, Jana

Brianala, I'm so sorry you're having such troubles. I think that I would call your doctor and see about adjusting your medication, even though I think most POTsies tend to go through better and worse periods of symptoms. I know I do. I don't know how much Midodrine you're on, but perhaps you need an adjustment - hang in there! It'll get better again. And treat yourself kindly. You're going through a lot of stress right now. Cheers, jana

Gary, I found your thoughts very interesting, and have wondered about the causes of POTS from viral infections quite often. I was told that I probably acquired first cardiomyopathy, and then POTS, due to a viral infection. I got sick about 4 months after moving to Tucson, and while no blood tests proved it, it was assumed that I had Valley Fever which was the catalyst for the other illnesses. However, within the last 15 years of my life, I've also had bouts of what my doctors termed a viral infection that lodged in my brain, which left me lying flat on the couch or bed all day, unable to even move my head due to the extreme nausea and dizziness it would produce. I would be entirely incapacitated for 7-10 days, and this usually hit every year or two. I wonder, however, about all of the 'virally induced' diseases. It worries me a little that so many times this is used when there is no easy answer. Cheers, Jana

Hi Maggie~ The forum does seem to have quite a few younger ones, yes? I was diagnosed with cardiomyopathy (probably caused by a virus) in January '06, and then with POTS in July of '07. I'm sure I had it earlier, but that's when they diagnosed me here in Tucson at the Sarver Heart Center. I was working at a job I coveted, and it took me totally by surprise. I am very intolerant of meds, like so many of us are, so am not able to take Florinef or Midodrine. I had to leave work approximately two years ago, and miss it greatly. I have one son finishing college in California, and have lived in Tucson for 5 years. I was originally an Iowan...brrr! I'm glad to hear from a little more 'mature' member. Thanks for writing, and feel free to send me a personal message. Cheers, Jana

Hi Suzy~ I have the same thing in the shower/tub. I love hot water, and a lot of times once I get a chill it's the only way to warm myself up. The water feels hot to me, but not too hot, so I'm always kind of surprised to see that my body is bright red when I get out. My boyfriend is appalled, and I know we're not supposed to use water that's too hot, but I get too cold if I use cooler water, and then can't warm up again! A nice little cycle... I also love to sit in the sun, and am almost always cold, especially my feet, fingers and nose. I guess it's a good thing I live in Arizona (originally from sub-arctic Iowa), but the heat in the summer gets intolerable, too. If anyone knows of a place to live where the temp is about 80 degrees every day of the year, and it's sunny most of the time - pass it on! Ciao~ jana

Hi Everyone~ I looked at the rare diseases website, and POTS is not listed as one of their diseases. In fact, they don't even store any information in their database on our illness. I'm not sure how to go about requesting that POTS be added, but it's something to look into. The website does list dysautonomia, but only the familial type that people acquire at birth. Thanks for bringing it up, Suzy, and for everybody's good ideas. I'd love to be involved and help in any way I can. I do have a strong English background and could do proofreading if needed. Strength in numbers - Now let's get together and use our power! Jana

Firewatcher, I know that I have low testosterone, but I haven't been tested for other hormone issues. I, too, have some of the same problems that you might have been experiencing with your husband. Did your PCP do these tests? I'd like to have them done, also. Thanks and glad you're happier now~ Jana

Helen, The only thing I've bought is flight insurance, to cover the cost of my flight if I'm too sick to travel on the date scheduled. This has saved me a lot of money, since in the past year I've had to use it for three trips I was just to sick to take at the time. I fill out the forms after canceling the flight, have my doctor sign it, and send it in to the insurance company. It only costs about $15 to get it, and then all of my money is returned, except for taxes. It's been a lifesaver...I haven't actually bought health insurance for a trip out of the country, though. I guess I would weigh the cost versus how well you're doing right now. Hope you have a wonderful trip and do great! Jana

Hello Fellow Dreamers~ One of the most frustrating aspects of this disease to me is the inability to fall asleep and stay asleep. I have very vivid dreams, usually nightmares, and wake up several times a night. I'm so tired I usually turn out my lights by 8:30, and hopefully I'm asleep by 9-9:30. It never fails that I start waking up around 3 or 4 am, and then toss and turn until I give up and get out of bed by 5 or 6 am. Ugh...Sometimes I get so tired I'll take a Benadryl for my allergies and try to take a nap after lunch, but that usually doesn't work. I commiserate with the rest of you...If anyone out there has any ideas on how to sleep thru the night, please let everyone know! Ciao, jana

mkoven & bellamia, thank you for your input. i'm sending positive energy your way... jana