POTS

[AJVDK]

Hello All,

First off I would like to say thank you to all of you for the support I get here. It?s hard as this seems to be the only place that truly understands what I go though! Well I am trying to slow down and learn how to live day to day, and not due to much, and not to over due it! It?s been very hard! My son wants to go all the time, but I think overtime he will understand that sometimes I just need to slow down. I saw my family doctor twice this last week, as things are just not going the best. I been having my heart take off racing, and then will slow down as about fast as it takes off. Lucky I have a pacemaker to help when it slows down!  My family doctor got a hold of my heart doctor, and they made some med changes again. So the changed them on Friday. I am hoping this will made things get better.

Why is it once you get down it takes so much to get back up, and try to get going again? I been getting a lot of rest, doing everything they say, and still feel down. I have been having really bad chest pain, lightheaded, shortness of breath, and my left arm been feeling numb. I last time I felt like this I went to ER, I sat in the chairs for 2 ? hours before they would even see me, and the got me back to a room, and the nurse starting freaking out as my heart was out of rhythm, the drew some blood and came back and said my potassium was low, they gave me some potassium and said to follow up with my family doctor the next day. I still was feeling bad when I left, so the next day and I went to the doctor and my potassium level was 3.6 so it was fine. It finally went away, but the heart skipping beats is this normal? I took a stress test in June heart was fine the hole time, but on the recovery, I would skip beat, then the pacemaker would kick in and then is would go fast and then skip beats again, when it does this it last no long then 15-20 mins. But it just makes my tied. The doctor I have doesn?t seem to know a lot about POTS, but after 5 years of going to doctor, thinking I was a mental case, at least he listens to me. My first heart doctor thought I had tacacardy only so I had a EPY study and then they ablated some of the areas in my heart, after this study I started feeling the same way again, so they went in and did a 2nd ablation where then they ablated too much and they but a pacemaker in at that time, this was July of 2004. A month after that I still wasn?t feeling that great so I got a referral to Mayo, where they first said it was in my head, then after so of the testing cam back they thought it just my pacemaker not working right. So they made so adjustments, and they sent me home. Due to Mayo being a long why form home I want to find a doctor close to home, that when I went to the Uof I. At my 1st appointment after the treadmill test, and the EKG and Looking over my medical files for the last 5 years they said I had pots, now I have this and I find myself, wishing there was a quick fix. The day I had my pacemaker put in the doctor said once you recover from the pacemaker being put it you are going to fell great again! I guess I was looking for the quick fix, or the right med and I would feel great! It so hard to stay positive not knowing how I am going to feel day to day. 3years ago I was playing league hockey, out hiking and biking, now I am lucky if I feel like I can go to work today. I am to dizzy and try to skate any more, plus if I get over heated now I seem to me down for a few days.

How do you make the lifestyle changes? How do you learn that you can not do everything you once could do? Maybe this makes mea bad person but I find it hard to deal with. Maybe it makes me a bad person that I want more???? I know I need to look at today, and focus on the here and how but it hard for me! Over time does it get better? Do you learn to know your limits? If you live in the limits do the good days start coming more?

I am just looking for answers on ways to better cope and living with POTS!!!

Amy

[tracy]

I hope you get feeling better.

I can understand with ya, because even though I suspect I've had POTS my whole life, it has gotten worse over the past two years. As to learn to slow down I know its hard because I have three children (6,5and2). I am just learning to slow down myself, just got diagnoised in July and now is on meds. Had been feeling better, then over did it, and its taking alot more time to get back where I had been. I am learning so maybe we can learn together.

I know when I start getting out of breath or that my legs start really hurting, I make myself sit down for a while. My children don't quite get why mom has to sit for awhile, but hopefully they will get better understanding, as I get better to limit myself

[AJVDK]

Tracy,

I nice to know I am not alone. I am trying to slow down too. Some days it just had to stay postive! But just coming here makes me know I am not alone!

Thanks

Amy

[tracy]

Amy

I know what you mean, ever since I found this, I have been feeling better, since I know I'm not alone. It's weird when I tell what I have, and everyone just looks at you because they don't know anything about POTS.

I keep telling myself I have to stay positive for myself and specialy my kids.

[JaneEyre9]

Hi Amy,

Just wanted to say that it is definitely hard to deal with new limitations in lifestyle. When I was diagnosed with POTS, I thought the medications would have me up and going again in about a week!! Reality started to sink in a month later when i was still not back at work. Like Tracy said, i started to improve and then crashed again. POTS will put you through a lot of ups and downs that make life difficult simply because you cannot anticipate how you will feel from one minute to the next. But one thing this has taught me is to live more spontaneously in the moment when i have a good day (or even just a good hour!). It must have been so hard for you after your surgeries to expect the improvement the doctor promised you and then to still be struggling. You have been through a lot. I'm glad you found this place for support.

Kristen

[AJVDK]

Kristen,

Thank you sooooo much for the support. It means alot!

Thanks

Amy

[Ernie]

Hi,

Welcome to the forum.

You will find a lot of useful information here.

Ernie

[sallyann]

i have changed my lifestyle totally.i work part time in the afternoons .i homeschool my daughter and i take about 4 hours in the morning to actually be able to start my day.but after that i find i have many more enjoyable feel good hours. i may not be able to clean or cook like i used to but i go out to a late dinner .and cleaning just wasnt as important as i used to believe it was .yes i believe we learn to adjust and appreciate all the good we have in our lives .when you cant get out of bed make someone bring you breakfast in bed .when your unable to go out watch a good movie.you may have to adjust to slowing down ,but being a couch potatoe isnt alwys a bad thing.

sallyann

[Eillyre]

Welcome Amy!

I?m so sorry that you?ve had to join our ranks, but I?m glad that you found us. I hope we?ll be able to help answer your questions and give you some support.

For many of us, POTS is certainly very disruptive to our lifestyles. I can sympathize with your frustration at not being able to take part in sports. I?ve been an athlete all my life (soccer, track, dancing, etc.) and very active outdoors. At the onset of my POTS & CFS symptoms, I was living independently in NYC and just starting my career as a professional ballet dancer. The severity of my POTS-CFS combination forced me out of dance after a six month struggle, took me back to my parents home, and left me practically bedridden for most of the past year and a half ? I?ve only just begun to improve in the last two months on some new medications.

It was crushing to have to abandon dance ? I loved it so very much ? but even more so to have my strong, highly-disciplined body now so incapable of even the getting out of bed normally. It was very difficult learning to ask people for help getting food prepared, helping me off the floor and back to the couch when I was too dizzy to get their unaided, repeat their sentences when my brain was getting them all scrambled ?the list goes on!

Unlike so many on the forum, I received an initial diagnosis of POTS after only 6 months, which was then confirmed 6 months later (this past April) out at Mayo. Not knowing what I had was extremely frustrating, especially as I was trying to explain to teachers and directors why I was out of class, in the hospital, and dancing with Holter monitor leads on my chest! While my performance did not visibly suffer, except occasionally in rehearsals, it took extreme effort to try to hide my symptoms and infuriated me that I had so much difficulty trying to keep up. Once I did get the initial diagnosis, I had the compensation of a name with which to identify my problem, but unfortunately not much research to help me find solutions. My electrophysiologist at UPenn and local neurologist knew what POTS was, but didn?t feel qualified to handle my care ? the rest of my doctors had never heard of it.

My trip to Mayo was a turning point for my health and I?m now enjoying some modest improvements in quality of life ? far from cured, but certainly more active (can even take a shower again!). I?m glad you?ve gotten a positive diagnosis, and hope that you?ll find some effective treatment options soon! It?s a step in the right direction!

As for learning to live with POTS, yes, it?s tough and requires careful analysis, trial and error, and above all patience. It?s certainly manageable, though, and eventually will become more natural. If you?ve spent much time reading our posts, you?ve probably caught on to my habit of making long posts , but I like to be thorough on topics that really speak to me (and that I can actually add something useful to!), so you can chalk this one up on my record, too. Thoughts from my struggles:

1) Learn as much about your condition as possible. As most physicians have never even heard of POTS, it?s best if you become as expert on the subject as possible (which you apparently seem to be in the process of doing). I found DINET?s webpages helpful, as was the information on http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm . It should be very beneficial as you learn how to adjust for your symptoms, as well as try to explain the syndrome to other people. If your doctor is teachable, you might print up quality information (DINET has an info mailer) to invest in more informed care. You may even, with doctor supervision, find some new treatment options he never knew about.

2) Be prepared for daily, hourly, minute-by-minute change. POTS requires some flexibility; your symptoms will not always be the same, at the same time, in the same intensity. Rather than dwell on the frustration of this irregularity, be prepared for and forgiving of it. I approach it as I did finding my balance each day when I was dancing: it won?t be the same, so I simply have to be more adept at changing with it. It?s not drudgery ? it?s a fact of life.

3) Learn your triggers. If you are aware what exacerbates your symptoms, you?ll be able to prevent more of them. If reaching overhead or using your arms brings on lightheadedness, avoid it as much as possible. If warm showers bother you, take lukewarm ones or even baths if that helps. Analyze situations; do you know what components wear you down? For me, I know that a grocery shopping trip will be far more taxing than a morning walk around the block because it has more elements that tire me out (walking, pushing, decision-making/concentration, background conversations, standing in line, and lifting VS. just quietly walking). That means that I need to take measures to minimize those components. I go when there won?t be many other shoppers (minimizes noise and line length), have a list prepared (cut down on time spent walking and concentrating on decisions), and go twice a week (shorter length of each trip, less to carry & lift, as well as less to put away at home when I?ll be tired). Be creative ? awe yourself with your cleverness! If standing up is taxing for you, keep a folding chair tucked away in the kitchen so that you can sit in between stirring things on the stove. If your head gets too tired while eating a meal, sit in a place where you have room to put it down or rest it on the chair next to you.

4) Listen to your body. As an athlete, you?re probably more used to this than the average person. It will communicate to you, in its own ?cunning? ways , what you should and shouldn?t do. If you have trouble reaching down to get laundry out of the hamper, have your son do it for you. At this point, I CAN do more than I SHOULD. If you it takes you a week to recover from walking around the block (as was the case for me), probably you should choose something else to get exercise ? or even rely on leg exercises and daily chores for your exercise if ?formal? exercise is too much at the moment. Once you?re able to get the symptoms under better regulation, you may be able to add in a little more activity gradually. Remember, even just walking around the house or picking up toys is exercise.

Don?t be ashamed of needing to rest often ? it can be frustrating, but is very necessary. I find that I have less down days if I make sure to rest as often as I need to and don?t totally wear myself out. Enjoy a movie or time looking at a picture book with your son, or if you?re too tired for that, lie down and listen to some soothing music for a while. I always keep my iPod next to my bed.

5) Prioritize your energy. Fatigue is a huge source of frustration , but is nevertheless a part of my life, so I have to make the best of it. There is far more that I?d like to do than I have the energy for, so I have to prioritize it much as business people have to prioritize their time. If you have only enough energy to either walk around the block or to make dinner, choose which is more important and do it fully. Once you?ve made your decision, don?t fret over the one that you didn?t do. Take a rest after doing the first and see if you have energy later to do the other. Either way, you have exerted yourself and accomplished something.

For general housekeeping (which can be difficult to stay on top of), try to operate on the rule 5 minute rule. If you had only 5 minutes to clean the room, what changes would make the most impact? Stand at the main point of entry and see what most obviously makes the place look untidy. Skip dusting the corners and opt to pick up the toys strewn about the floor. If there?s a corner that you just don?t have any energy to de-clutter , get it to look as small and unobtrusive as possible, then put a candle somewhere else that looks nice (I?ve gotten away with a lot this way! ). Everyone is drawn to the candle area, not noticing the clutter as much. Use your creativity! If you only have the energy for a low-prep meal, make it look special (colorful veggies can make a big difference ? bagged baby carrots in a pretty dish takes very little effort!). Keep a pretty tablecloth on the table to give a low-energy visual boost.

6) Build support. Educate your family and friends on your condition, triggers, what helps you feel better, etc. Be honest about your limitations; if you try to make everything seem rosy, they?ll have hard time understanding why you live the way you do. Accept their help when you need it (that was a tough one for me to learn ? I?ve always been very self-sufficient); it will not only save you energy, but will help them to feel like they are making a real contribution. Don?t cheat them of that pleasure. For those people who still seem to not understand, indicate that you have a heart problem (people tend to respond better to that then the elusive autonomic system details) that has required some changes in your life. Do not waste time feeling guilty about not being able to live at the pace they expect you to; it?s simply not worth the emotional and physical drain.

Keep your son involved. Explain that your heart is sick (or something more age-appropriate if he?s older!), which means that sometimes you will be tired by little things and need to rest more often than other people. Have him help you with your difficulties and thank him for his kindness. Take time to spend quality time with him (playing, reading, talking, listening, etc.); make a game out of cleaning the house together, listen to books on tape together when you need to rest, etc. He will develop compassion and loving devotion as he lives through your rough spots with you, which will help him through the rest of his life. In our family of seven, illness or injury were a part of our lives ? malaria, snakebites, scorpion stings, blister beetles, heat rash, salmonella, colds, ear infections, flu, broken bones, MVP, ulcerative colitis?all sorts of things. While most of them were not chronic, there were times it seemed never-ending, but we learned so much as children from it and can look back on extremely joyful childhoods despite it. Mom was sick more than we were; her limitations were very evident. She would try to read a story while her malaria fever of 105 caused the book to shake (?Mommy, I can?t see the pictures!?), we had to take care of her and the house when she nearly died from a viper bite, she was too tired to pick up her spoon to eat with Lyme disease (she was very thankful that I could understand how she felt!), etc. But we knew her struggles, and loved her all the more through them.

7) Don?t let POTS control you ? live fully! While you do have POTS-imposed changes, you are no less a person because of them. I do have POTS and CFS, but do not see them as part of my identity. I?m not able to dance, but I?m still full of joy. Even when I was almost bed-ridden, completely sleep deprived, and suffered from an aching body, I could still laugh, make jokes about my collapsing on the floor, and live a life of contentment. When I haven?t been able to go to my sister?s apartment or go out with her, I invite her over for a movie or time to chat, etc. Find creative ways to keep in touch with people. Find ways to cheer and beautify the lives of people around you! If you spend your time pondering what you wish you could still do, you?ll miss the joys within reach.

Yes, there are times of disappointment, frustration, sadness, guilt, or even envy, but don?t let them get the best of you. Acknowledge your feelings, talk them out (even if it?s to yourself), and then move on. Suppressing them will only incubate your grief, giving in will only drown you in misery. Don?t indulge in bitterness, crabbiness, or resentment (you are still responsible for your behaviour) -- they will destroy you and your family. Embrace the hope and joys that can be found ? there are a multitude of them! Revel in the beauties of life ? for you and people around you!

~~~~~~~~

Right now you?re at what I found to be one of the hardest points of being sick ? you haven?t found an effective treatment yet and haven?t had enough time to really understand how to best live with POTS. Over time, if you invest yourself into learning how your body operates, you?ll find it easier to know how to navigate around your symptoms. You?ll still have to make adjustments throughout the day, but on the whole, it won?t be as difficult to determine. Will there be more good days? Well, it?s hard to say. If you can find treatments that help, you probably will. The bad days/times are inevitable, I think ? but then, healthy people have them, too. Remember, there is no ?quick fix? or ?sure-fire? remedy to this process; it takes a daily commitment and a number of poor choices along the way, but step by step, you?ll make it closer. I?m still at it and probably will be for the rest of my life!

Don?t worry about being a bad person for wanting to do more ? it?s only natural after leading a relatively healthy life. There?s nothing wrong with wanting and trying to broaden your range (within reason) ? in fact, it will help you not get stuck in the rut of imposing unnecessary limits on yourself. I spend every day trying to do more! The problem arises when you let yourself get sucked into dwelling on your limitations. Avoid things that make you sad or concentrate on what you?re not doing anymore; I didn?t go to see Nutcracker this past winter and it?s taken me over a year to be able to watch dance on video again ? it still hurts, but is getting easier bit by bit. Think about what you CAN do, what you can do now that you couldn?t before POTS, what you?re thankful for. I would never have found all of you on the forum, or have deeply understood just how much people with chronic illnesses can suffer. I would have missed out on extra time with my family and I wouldn?t have had the time to pick up the new hobbies I have?. If nothing else, I've gotten a pretty decent medical education without the long hours of med school!

Celebrate the little steps that you make as you go along! I hope this post doesn?t come across as life being plodding or toilsome; you?re not a prisoner by any means! When a surprising boost of energy or opportunity comes along, enjoy them to the fullest! Once in a while, I?ll sacrifice the next three days worth of energy to do something special ? and I don?t regret it a bit! Enjoy the little pleasures! Live patiently and joyfully from the floor, hospital, couch, bed?anywhere and everywhere!

I wish you luck on your new quest. Ask all of the questions you want! Feel free to PM me anytime you need to talk!

Angela

P.S. ? You might try reading Evie?s post on ?The ?I am sick? mentality,? too ? there were some good replies.

[JaneEyre9]

Angela,

Reading your post really uplifted and encouraged me. You have a gift for highlighting the important issues and giving constructive, life-affirming suggestions in order to cope with POTS. I think you could put some of your posts together into a little booklet...a guide for what to expect when you are told you have POTS. Just an idea. Very nice writing. Thanks for the words of wisdom!

Kristen

[Rita]

Slowing down is often a lot easier said than done. I know there are days I would love to just be able to go outside and sit and watch my kids for a little while. To me that is slowing down, but I can't even do that any more. Sometimes I feel like slowing down is not really the answer, so I try to go out and be normal, except then I begin to pass out and find myself in the bed for about a week and a half.

I sometimes feel like instead of slowing down we almost come to a complete stop. I have noticed in the winter months I do feel a little better. I get to go more. although in the winter I most of the time get sick and this makes my symptoms even worse. I know exactly how you feel tired of being tired and having to stay inside out of the heat. Making sure that eat enough salt for the day and drink plenty of water. I do everything the doctors tell me to do , yet I still have troubl just taking a bath or trying to clean the house.

Before I was diagnosed and a couple of years after I was still able to clean and cook and take care of myself and family. Now I spend more time doing nothing and receiving help from others, and then only thing I want is more energy. This is so hard for any one to deal with, but having everyone on this forum seems to help.

I wish that I could give you more positve news, but so far I am still having trouble dealing some days myself.

Best Wishes,

Rita s

[Eillyre]

Thanks Kristen!

I love to write & am happy to channel it towards a worthwhile cause. I've always wanted to make a difference in this world helping people who hurt; POTS has sidelined me a little from actively doing so, although I still consider it an invaluable experience. I've grown and matured so much over this time of being sick; I'll emerge a far stronger and compassionate person than before! It'll be a while before I'm really out in the world again (I think my dreams of world travel are a ways down the line! ), but until then, I'm glad I'm making even a small difference!

I actually have been considering a little booklet about learning to adjust to a POTSy life; maybe a fall project?

Thanks for the encouragement!

Angela

[Guest Julia59]

Welcome Amy,

Forgive me if I sound like I don't know what i'm saying. Lately, I read posts and don't remember parts of them------so bear with me....

Please don't be too hard on yourself for feeling the way you do. POTS is a difficult diagnosis and it takes some people years before they are diagnosed.

You are still going through an adjustment period and learning all the crazy things POTS can do to your body.

It is very important to have a doctor who is very experienced with POTS or Dysautonomia/aka (autonomic nervous system dysfunction). It's very sad, but a lot of people have been misdiagnosed before finally getting the diagnosis of POTS.

A lot are labled with psychiatric disorders.

I had a psychiatric lable even after being diagnosed with POTS by a very rude/arrogant neurologist. I am also diagnosed with cervical spine stensos, cervical/cranial instability, and a small posterior fossa-(base of my skull)---aka stenosis of the brain stem. I also have a prominant vertebral artery adding further pressure on the brain stem.

This neurologist labled me as needing psychiatric help saying all my symptoms were manifested in my mind----even the pain. Actually he was quite an interesting study subject---as that is the worst case of ignorance in the "professional medical field" since being diagnosed with all this brew-ha-ha. He had a boat load of medical evidence in my medical file----and still he thought all those docs were wrong and only he was right. Needless to say I had no problem correcting him in his mistake.

As time goes on you will grow more confident in being your own advocate. So many people go into the medical profession for status and money-----(not for the true passion of helping people get well). Sad, but true. The good news is I see more research and more medical professionals taking an interest in the different forms of dysautonomia---including POTS. This web site is an excellent source for support and information.

I wish you all the best----and all the best treatment possible for your symptoms.

I want to reassure you that it does get better---we will still have good and bad days, but as we learn more the good days increase.

Julie :0)

[corina]

Hi Amy,

I have nothing more to add! So I just welcome you and hope you'll find answers to all of your questions.

Corina

[AJVDK]

I wanted to thank you all for you great words! Its been really hard for me. I been sitting here over the last few weeks truly trying to tell myself, I been trying to tell myself maybe I don't have POTS, every other doctors been wrong. I know that sound very bad, but I wanted that quick fix, "take these pills and you will feel better", I was even starting to think "It's all in your head" thing was a good thing. I guess I am still at the trying to deal with this yet, I am having a hard time finding a doctor that wants to treat me, they been playing with the meds over the last 8 weeks at the U of I, and I think they are more guessing then really know what they are doing. I just been getting worse, as with the chest pain, the dissyness, heartrasing and the biggest thing I am tried all the time! DO you all think this is just POTs? DO you think maybe is time to find a new doctor? Does anyone know a good doctor in the midwest? I am just wanting to feel better, and I really am just looking for hope, support, and a doctor that knows about POTs!

Thanks again for all you support!

Amy

[sallyann]

amy

i am so sorry you feel so bad. i remember when i was first dx with pots,i thought the doctors were missing something,i guess sometimes i still feel that way.it was just so hard to believe i could feel so bad and ONLY have dysautonomia.in my case it was true. ONLY dysautonomia.well that was enough. i learned how to change my lifestle and accept the new me.it has gotten easier ,once i learned my limits . i definitly agree with second opinions ,even third opinions. we are all here for you

best wishes

sallyann

[DSM3KIDZ]

I'm sorry to hear your having a bad time. I was dx in Jan or feb with Autonomic Neuropathy, POTS and Gastroparesis my doctor said that's all in the categorey of Dysautonomia.

Too be honest I am still in denial. I keep having my doctor run different test thinking maybe it's this or maybe that is contributing to my sudden illness. Well so far all the tests are coming negative for the magic pill cures but I'm still hoping there is a missing piece to this puzzel. I got sick overnight and there had to be a reason.

I don't have the same symptoms as you. My major #1 complaint is NAUSEA, than migraines. But as a mother of young children I feel for you and know what your going through and I wish there was a magic cure for all of us.

I guess if we hold on to hope maybe we'll be able to dig out of this hole at some point in our lives.

But in the meantime we have everyone on this site to support and help us with our daily struggles.

I wish you well.

Dayna

Stuck in a POTSHOLE in Milwaukee.

[Eillyre]

Dear Amy,

I truly am so sorry to hear how hard this is for you. There were times when I asked myself if it was all in my head, too (that thought never lasted long, though ? I knew it was balderdash! If there had been even a glimmer of possibility that I could work or wish my way to health, I would have been up and about long ago! ). I tried to keep running and taking classes and living my normal lifestyle?but eventually had to accept that there was something most definitely wrong and that fighting against it only made things worse. It IS hard, especially at the beginning where you are?it?s only natural for you to want to be healthy or to have something easy to fix. But pondering it will not help if you do have POTS?it will only prolong your pain.

Perhaps in my last post I dwelled too much on some of the difficulties of POTS. If that?s how you read it, I?m very sorry and would like to repair that impression I left. POTS is not a dire life sentence. It may sound it sometimes from our posts, but I would encourage you to consider a few points when reading on our forum:

1) Most of the people who feel the need to contribute to the forum are not the ones who have been able to get POTS under control and go on to live relatively normal lives. There are those whose POTS symptoms clear up on medication ? I suspect that most of them would rather spend their time working on research papers, hiking, or whatever else they are now able to do than posting on our forum (if they ever made it onto our forum in the first place ? we are do not encompass the entire POTS population). Dr. Low (from Mayo) has a son who has recovered to almost full health. My doctor at UPenn had some POTS patients who came close to full recovery and led very ?normal? lives. Not everyone does recover all the way, and there is a small population that sees little or no improvement on medication, but that doesn?t mean that you have NO hope for improvement. On the contrary, once you find a POTS specialist and try treatments, you may well see some degree of improvement.

2) Many of us have more than just POTS. POTS is not always the major culprit, but a very unfortunate and intrusive sidekick. Not everyone?s muscle pains, vomiting, etc. has its roots in POTS ? some have EDS, CVS, MVP, CFS, etc. My POTS symptoms are not at all a major hindrance anymore; if I didn?t have chronic fatigue syndrome in addition to POTS, I would be back dancing a little and start college.

3) DINET is a Dysautonomia Information Network, which has a primary purpose of helping people with questions pertaining to dysautonomia. The fact that the majority of our posts have to do with health problems, new symptoms, outrageous doctor experiences, and depression/disappointment does not mean that we have no bright spots in our lives. Most people will post about that because that?s what they need other people?s help with. I don?t usually post about all of my good days or about what I was able to accomplish each day because I don?t want to clutter up the site. If we all posted the positive aspects of each of our days, the cries for help with symptoms would be lost. Some of us will give occasional ?HOORAY? posts, but they shouldn?t be read as the only ?HOORAY? moments we have. Please try not to take the medical posts as the sole indication of the quality of our lives.

That said, you still feel wretched and need something done about it. You aren?t sure if POTS is the only contributing condition and are having trouble finding doctors who are willing to take care of you. Well, I would highly recommend that you find a dysautonomia research center with people who see this day in and day out. They can do highly specialized testing to help determine whether POTS is the sole culprit or if there are some other things that need to be addressed. You were concerned about the distance Mayo was from home, but if things nearer to you are not helpful (as was my case), you may want to reconsider trying there or somewhere in Illinois (I don?t know anything about any of their facilities ? just saw that there are some places on the DINET physicians list). The trip does take a lot out of you , but if you end up with a better understanding of what?s wrong and possibly a treatment regimen, it may be worth it?

The forum members have had a mixed experience at Mayo (as with most other places). For me, it was the turning point in my illness. I was able to get special testing to confirm the initial POTS diagnosis I received at UPenn, as well as speak at length with Dr. Low about ALL my concerns. I ended up with a medication that has my POTS for the most part under control and something to help with the CFS side of things, although I may see a specialist about that, too. It was a thoroughly satisfying and positive experience, despite the travel-related fatigue, and I would highly recommend it. Insurance even paid for almost 1/3 of it. Others have had positive experiences there also. (I mention Mayo first, because I?ve actually been there and I think it?s closer than Dr. Grubb, who has also received good reviews).

Not everyone has found the trip useful, though (keep in mind, I think most of them saw people other than Dr. Low and his group). In any situation in which you have multiple cases (some of them extraordinarily difficult), multiple personalities, and multiple doctors involved, there will be a variety of outcomes. You just have to weigh it all to decide if you think it?s worth a try, knowing full well that they may not know how to treat you. Doctors are not superhuman ? they have their limits, just as we do. They are not under an obligation to us to know more than is possible at this time. Sometimes we forget just how much they do know in our disappointment at not getting a cure. We must be more fair with them in that respect and prepared to receive disappointment IF it comes. I went through four physicians before getting an effective treatment program at Mayo. I would at least give Mayo or another research facility a little more thought before discarding it, considering your present course is not bringing much improvement.

If you do decide to go in that direction, there are a variety of posts about getting your records together, etc. that can be very helpful. I?d be happy to PM you more information, too.

Finally, I tend to approach health problems very methodically ? ?this is what?s wrong, what can be done to find a solution?? ? but I don?t want you to feel like I?m dismissing your feelings. I do understand how cruel, crushing, and disheartening chronic illness can be. I?m still living with it and may well for the rest of my life. I will very likely never get a chance to dance Swan Lake or many other things I worked so hard and wanted so much to ? yet another dancer that never made it big. The closest I may ever get to Tahiti and Australia and Egypt might be on the ?internet trips? I take and in the books I read. I may always have trouble getting through the day without taking rest breaks every twenty minutes or so. It?s very real and at times very painful. Yesterday I was feeling very restless and wishing so much to be anywhere other than sitting at home, doing anything other than reading a little and typing a little and feeling very tired. I wanted to feel 21, not 91.

Your feelings are very real and not always rational. In your own time and your own way, you?ll learn to acknowledge them and move on, the way we all have to. Don?t neglect learning that process, though. You don?t want to be a slave of denial any longer than possible. The sooner you come to terms with the way things are, the longer you will enjoy the many blessings your life does hold ? with or without POTS. It?s not just a lesson for the sick ? it?s a universal truth of life.

I wish you the best of luck in this, dear friend. It is hard, but you can win over it.

With love,

Angela