firewatcher

Helen, there is some info on the net about vertigo/migraine connections. This is one: http://www.emedicine.com/ent/byname/migrai...ted-vertigo.htm Good luck!

OK, I just calculated how much sodium, on average, I eat a day. 1200-1750mg a day. I don't eat out much, don't eat canned anything, and cook most of our food fresh (I know it's rare, but my son has a food allergy.) Now POTS people are supposed to eat how much salt? (3g daily?) How am I going to do that?

Nope, I looked today and thermotabs have potassium too. Thanks though.

Hi there, I've been searching through old threads and online pharmacies looking for salt only supplements. I don't really like the taste of salt, and I simply can't salt everything I eat. My problem is that my potassium is high, so I don't need any more of that. Which supplements are there that are salt only? Thanks!

I don't think profession has anything to do with it but exercise sure does. This is how I understand it (thanks to some really smart people on this forum): When WE exercise our hearts freak out and go beyond what is necessary for that level of exercise and we get super-tachycardic. Because the heart is beating so fast, there isn't enough time for proper oxygen exchange and we get dizzy/faint. Also at play is the vasodilation that occurs when we exercise. The veins get larger to move more blood, which many of us don't have (hypovolemia) and again less blood goes to the brain and we get dizzy/faint. Then after exercise, the whole vasodilation thing is still in effect, but the heart is slowing down and again the blood stays out of our brains and...you get the picture. Many of us were or have been in much better shape than our peers and I don't think that really helped us. I have a friend with Mitral Valve Prolapse and she was very POTsy when she was younger and in better shape. Now she's gained 30 pounds and has high blood pressure and she isn't POTsy at all.

Howdy, After my POTS diagnosis, the doctor recommended an abdominal support belt/binder. After wearing mine for a week or two I can actually tell a difference. I pool in my stomach mostly and my legs. Yesterday I wore 20mmhg support hose and they helped too. THe belt is the easiest and quickest, I have not yet found spanx or a pull on girdle that is comfortable and provides enough anti-pooling support. I'm going to call next week and get an Rx for the higher compression hose. Let me know if you find something and I'll post if I do.

I take the NON-time release version, that way I can adjust the dose by cutting the pill. Sometimes 10mg is enough if I'm not too symptomatic. You may just be getting too much in the initial dose.

Kits, What do you enjoy so much that you forget everything else? I get swallowed into books and some movies. It's like a vacation from reality for a while. Whatever does that for you, do more of it. My sleep doc wrote an article on "sleep hygiene" that says we should all spend an hour before bed doing almost nothing: if you worry, take a pencil and paper and write down all the things that are buzzing around in your head and are worrying about and have to do. He calls it "landing helicopters." If you need to worry, set aside 30 minutes and just worry, but then LET IT GO! This is SOooo hard, but you can do it. I have nothing helpful to add about your work situation, it stinks. sorry Jennifer

Carina, I have the abdominalstutze haut and wear it low on my abdomen and it helps wonderfully! I tried the compression stockings yesterday and will be getting more soon. I was hoping for something that fit under my clothing better like spanx. The belt definitely helps with the pooling. I guess I had too much of my old doctor in my head saying "well, what do you expect when you've.." had two BIG babies, not slept more than 5 hours a night for 6 years, had mono, etc... I have OK tone in my ab muscles in the morning, but by bedtime I look pregnant. I hope the belt works as well for you as it does for me! Danke shoen! P.S. don't think that I know much German, it's been a loooooooong time since high school and I don't see enough extended family to use it!

Chrissy, I am so sorry, it sounds like your whole family is having a hard time. When I had my POTS crash (whatever it was) my parents and husband kept telling me that I was trying to do too much, take some things off your plate, relax more. Of course the first things that they thought should go were the only things I enjoyed. I was frantically searching the internet and when I would find disorder that sort-of "fit" and ask my husband what he thought. Once he said, "what do you have now?" The holidays can be a tense time even in the best of health. People start to reflect on what they have not done, what they wish they had and how fast time passes. Please cut yourself and your parents some slack. You will ALWAYS be their child. My parents keep reminding me of that, even with me at almost 37, they worry about me like I was 7. Your health impacts your family as well as you and they are frustrated on so many levels: THIS was not what they wanted or envisioned for you. THEY are back to being caregivers, when they thought they were done. YOU are not happy and it hurts them to see it. They are worried and don't know what the future holds for your health. They are worried about the cost, both financial and emotional. No one here can see the future, your condition may become chronically annoying instead of disabling. You could meet the man of your dreams and he can't have kids. But there is still hope, and the only thing you do have control over right now is how you react to your illness and your family. Come here and vent away, most of us have been or will be in a similar place. May you be blessed with peace and better health for the holidays and everyday. (((((((((((((((((((((((((HUG)))))))))))))))))))))))))))) Jennifer

Chrissy, Some forms of POTS are brought on by illness or injury and may resolve, others are suspected to be genetic. Several members on the forum have multiple family members that are effected and is clearly genetic. I was diagnosed as having the hyperadrenergic form of POTS, which is suspected to be genetic. However, none of my family (and I can remember my Great-Grandparents) have ever had anything as disabling as what I have. I suspect that my Grandmother has some form of POTS due to frequent fainting as a young woman and anxiety issues, but they have never bothered her enough to seek treatment. My oldest Son has my Circadian Rhythm dysfunction, but he can run and exercise like I have NEVER been able to do. The wonderful thing about procreation is the genetic "hybrid vigor" that does not automatically guarantee a condition like dysautonomia. Like green eyes or breast cancer, it's a matter of recessive and dominant genes. Knowing that you have a medical condition can help you recognize and treat anything similar that may come along in your children, but right now, the few brains that contain enough information about all this are just researching and speculating. With the pace of research and technology, in the hopefully near future there may be better treatments or even a cure for many of us. Fifteen years ago, we would have all been treated for psychiatric issues/anxiety instead of a REAL medical condition. Don't (try not to) worry about what you cannot control.

OK, I've been wearing the post-surgical abdominal binder (did not have surgery, it's just the firmest..what Dr. Biaggioni suggested) for over a week now. It has helped far more than I thought it would. I have also been on a hunt for "shapewear" that I can wear under clothes instead this big belt. Several of you have suggested Spanx. How firm is the support through the abdomen? All the firm-support shapewear that I have found is not firm enough. I hate to move to a girdle, they look too stiff and really uncomfortable. Any brands in particular that are extra-firm across the poochy part (I don't pooch in the morning, so I must be pooling)? Miraclesuit shapewear looks promising, but I have to order it, I can't just go try it on. Anybody have suggestions?

Hi Ana, I too used to be in fantastic shape. I miss my old body so much! Even when I was in the best shape of my life, I still had POTS, I just did not know it! Now that I am in the worst shape of my life, I have to try to climb that long, long ladder back up into some level of fitness. I figure that my level of commitment will be greater if I have to 1. pay for it (money) and 2. do it with a friend. There will be days (most) where I don't want to do it at all, but the knowledge of what it will cost me and having a friend motivate me just might get me into low gear. We have signed up for personal pilates. She has MS, so at the moment we are evenly matched physically. So far, just walking causes worsened headache, dizziness, swelling hands and feet and tingling/shocks up my legs, so hopefully less aerobic activity and more strength/core training will be easier to do. As for the energy to do it? I'll have to settle for sheer will power and a small dose of caffeine. Good luck and let us know your progress. Jennifer

For those of us who can still physically withstand work, how do you do it? Firstly, I have and have probably always had POTS. Tachycardia stopped me from doing anything on my feet for long (it was misdiagnosed as asthma for 12 years!) For the last 20 years I have been a professional artist (sculpture and illustration.) I have always been self employed, or had special one on one situations with my employer. This has allowed me to work my own hours and work when I feel best. Most of my work is seated, usually semi-reclined with feet up (my chair tilts back and I have something to put my feet on.) Most of the time I work from home. For me, Work is not the issue, it's the family thing. Two kids, no sleep, cooking most meals (child with food allergy,) husband that travels... This is the hard part for me. I am blessed that my husband makes enough to support our family, but it was having a family that changed my ability to work. I can no longer stay up late (when I feel best) and sleep in past when I am most symptomatic. Sometimes I wonder how bad my POTS would actually be if I kept to my body's natural schedule? The social restriction of 9 to 5 for "a job" is difficult for me. Once my kids are out of the house, I intend to return to my "vampire" lifestyle (sleeping till noon) and as long as I have two fingers and one eyeball that works, I will work! Who else can work through dysautonomia? How do you do it?

Lois, after an overnight fast, what were your osmolality numbers? What did Dr. Verbalis say it was and how does it impact your treatment? Thanks, Jennifer

Fortunately, he is. My PCP says that regardless of what it is, the treatment is the same: as long as I feel better on the meds and it does not screw anything else up...take everything. Unfortunately, Vandy and all my other docs have said that there is an undiagnosed endocrine issue that is messing up several other things, so the dx of either will point toward where to look next for that missing piece of the puzzle. Thyroid will mess with the hormones, pituitary would mess with the hormones and cause DI, hypothalamus would mess with everything...soooo, right now, I'm a well scanned pincushion.

Ernie, Dr. B at Vandy said "Hyperadrenergic POTS and Partial Diabetes Insipidus." Jump, I'd get a divining rod, but it would just point to my bladder! Either way, everyone is at least agreeing that "hey, that's NOT normal." Unfortunately my labs and other tests are not clearly pointing to specific diagnosis on this stuff. I hate being weird. I keep hearing " I had this one patient, one time, who was not entirely like you, but..."

Oh bother... I saw my PCP and two of the three endos this week to go over everything from Vandy and I am still "unexplained!" My PCP said "great, go back on your meds." Endo #1 said it's not POTS because his test results of catecholamines show that I am not hyperadrenergic, but it IS diabetes insipidus. Endo #2 said it IS POTS and it's NOT diabetes insipidus. The next doctor's appointment I think I'll skip the test results and just bring a daisy (to pluck the petals), a "magic eight-ball" and coin to flip. Is there such a thing as diagnosis by consensus? Who do you trust?

Lisa, I started by making a one-ish page chronologic medical history detailing surgeries and major illnesses by year (tonsilectomy, broken arm, menstrual irregularities, births of children, exposure to tuberculosis, etc.) Then I made a condition summary page of what was going on now and current medical findings (supine bradycardia, upright tachycardia, nausea, etc.) I also made a medications page, what I had taken and when, why I stopped, what happened when I took it, and what I am currently on, dosage and why (inderal 20 mg, daily for tremor, etc.) I also had a doctors page with my primary first and then on down to all the specialists including their practice's name, phone and fax numbers. Then I got those little sticky tabs and arranged everything by type (specialist) and then chronological order (BP logs, cardiac test reports, endo labs, etc.) Another sub-section was doctors letters/summaries of findings. I even have a section in my own records of every fax I ever sent any of my eleven docs (I fax them instead of call, that way the question does not get screwed up by the nurse and it becomes a part of my medical file. I can then go back and write in their answers on my copy.) I also made summary pages on my own (hormone test results in order of day of cycle, osmolalities and conditions of tests, CBC and chem panels, kidney function tests, sleep log summaries. These are really helpful instead of digging for each test and then the next.) Then I made several identical copies (including tabs) and gave one to my primary doc and sent one to Vandy. Yes, it took a while. Yes, each one is about 4 inches thick.

Catlady, Any over the counter sleep aid will have Benadryl in it, and Bendadryl is a CNS depressant. Most sleep aids affect the CNS. Klonopin is a BIG TIME CNS depressant. Melatonin works great for me, it lowers my HR and BP an hour after I take it. It is most effective for me if I take it when the BB is still in effect and at a tiny dose (1.5mg). Rozerem is super melatonin (not actually, but it works on the same receptors in the brain.) Sonata worked well, just not all night for me. Chamomile tea works quite well if you are already tired. Warm milk and cookies (I kid you not. Again, you have to be "ready" for sleep) Have you seen a sleep specialist? Jennifer

Anna, is your son urinating A LOT (all the time, and at night?) High sodium and frequent urination can be indicative of Diabetes Insipidus. He could also just be drinking too much gatorade, or just be dehydrated. Is his sodium all that is going on, or has something changed?

jump, I got large BP increases during my orthostatic challenge tests at Vandy, but usually mine gets narrow (systolic unchanged/diastolic hypertension.) I think it has to do with the blood volume status at the time and the shift of water in and out of cellular/intracellular space. I did not think that I had pooling, until I got my abdominal binder. I just figured that after all day and two large babies, I had a tummy pooch. I don't get the pooch if I wear the binder during the day, I also feel better and don't grey-out as often. The docs at Vandy know that there is an aldo-renin (kidney/adrenal hormones that regulate water and blood pressure) issue that is common in POTS and probably complicates, and possibly causes the pooling issues. Do all POTS patients pool? I don't know.

Talk to your pharmacist! They know drugs and interactions. Actually they will know more than the docs do. The docs are so specialized, they rarely know much outside their scope. If you can get into your pharmacy on a slow day and sit and talk to him/her, they will help tremendously. If you can find a PharmD, a doctor of pharmacy, even better. Call and see if they can't set you up with one that works with your store. Good luck!

When the end of your rope is frayed...and you feel beaten and weary, where do you turn for solace and fuel for your Spirit? I take great comfort in Faith, music and my artwork (when I can do it.) Family is a great comfort, but they can also be draining (two children and a spouse with needs.) Are there words that bring you back, at least to a place of quiet stillness, if not comfort? Isaiah 40:31 But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. (I am banking on this one with all my heart!) Sonnet 29 William Shakespeare: When in disgrace with fortune and men's eyes, I all alone beweep my outcast state, And trouble deaf Heaven with my bootless cries, And look upon myself, and curse my fate, Wishing me like to one more rich in hope, Featur'd like him, like him with friends possess'd, Desiring this man's art, and that man's scope, With what I most enjoy contented least: Yet in these thoughts myself almost despising, Haply I think on thee,--and then my state (Like to the lark at break of day arising From sullen earth) sings hymns at heaven's gate; For thy sweet love remember'd such wealth brings That then I scorn to change my state with kings'. What fans the flame of Spirit for you?

Melissa, you are working...just not being paid anywhere near enough. You moderate this forum, you go on everyday with an incredibly positive attitude, you inspire so many of us. To make the best of any difficult situation is work and yours is Herculean effort. I applaud you, I admire you and I appreciate you! This is NOT pity, it is heartfelt thanks for your part in making this forum possible and sharing your experiences with us. There are a few, treasured times when I have heard "well done!" Melissa, "very, very well done!"