sandymbme

Proamitine is a really common med given to us POTSies. (Also known in it's generic form as midodrine) It is a drug I have taken at various doses for years. The main advantage over the florinef is two-fold, really. The proamitine is really short acting, meaning it is out of your bloodsteam completely within a few hours. Florinef builds up and stays at the same level, and you have to titrate off of the drug. The proamitine also has all different doses. So your doctor can change your dosage really rapidly to respond to exactly how your blood pressure is doing right at that very moment, altering it up or down, or withholding it entirely depending on how your blood pressure is doing. As others have said, I am so sorry you have the reason to find us, but very glad you found your way here. A word of advice, you are going to find that in managing your illness you are going to have to work very closely with your doctor. If you do not feel comfortable voicing your concerns or questions to your doctor, ask for a referral. Good communication is key to staying as healthy as possible! Sandy

I hated answering this one! I used to be so much better! My spirits are fantastic, I am emotionally very happy, and would like to say every day is a great day. From a purely medical standpoint, though, I no longer have good days. At all. I have less and less I can do and get sicker and sicker. Hard to take. Especially since I try so hard not to focus on what I have lost. I prefer to focus on all the things in life that make me happy! Sandy

Good news indeed! I was just explaining to some friends last night how fortunate I was that I got diagnoses with my initial diagnosis of POTS in about a year, that it was actually record speed. They were shocked when I explained how many people suffer for decades with resistant doctors, poor care, and misdiagnoses. I know so well the sense of relief when finally it all adds up, and you have a treatment plan and HOPE! I can only imagine it would be even greater for your child. Congrats! Sandy

I am suburban Columbus, Ohio. I have been for the last 16 years or so. Sandy

Yay for good, hopeful news! I managed to have a (sadly short!) period of recovery after going through a 4 week pain management and physical therapy program. It was tremendously helpful, and I still use some of the strategies. I have other syndromes and disease gumming up the works these days, but I can't complain. After all, I was even able to go back to work for a few months, which is where I met the man that will be my husband 10/12/2012! (And I can not imagine how I would manage anything without him!) As others have mentioned, I am a bit worried about stopping all his meds, but also as others have said, he could not be under better care. I know a lot of the kids rebound far better than us adults do! I am quite sure as a parent it must be a HUGE relief to get such good news, so congrats! Sandy

I got my dx of EDS type III/ Joint Hypermobility Disorder fairly recently. It was first thrown out last year, but was finally confirmed in April of this year. So I am still trying to learn to cope, and make sense of this latest in my string of "tags". In the last 6-12 months alone, my pain level has skyrocketed, and I seem to be deteriorating at a frightening rate. I know that everyone experiences disease differently, but I am really getting very frightened, for a number of reasons. The big scare that is actually only ever so slightly worth considering is the, according to my doctors, 1% chance that I in fact have vascular EDS, which scares the ***** out of me! I am being sent for DNA testing to properly rule it out, and they don't think it is likely. BUT, when I had my hysterectomy in January they had a terrible time removing my uterus because the organ was literally falling apart. In addition, my mother had an episode about 10 days ago where "one of the major arteries on the upper part of her heart spasmed, causing damage to the heart muscle". (her doctors are still trying to figure out what the heck happened and why, so I am quoting recent email) Obviously, I am going to be calling Dr. Grubb's office in the morning and sharing this info, I am admittedly spooked. Not to mention just the progression of my own illness has me terrified I am being unrealistic in hoping I can walk down the aisle next year. My joints are failing at a downright alarming rate. My hips are at a point now where I am having terrible trouble just sleeping because of the pain. Walking is very difficult, I can't go more than a few steps without my cane. (Thank God we bought a small house! And three cheers for the first floor master and first floor laundry!) My jaws lock on a near daily basis, preventing me from eating because I can't open my mouth wide enough to allow for food. I think what scares me the most is the fact that my hands are starting to cause me a lot of pain. I depend so much on my computer for my "social life". It is really, really hard for me to go anywhere, or do anything. I am so afraid I won't be able to type. So, for those of you who have EDS, is the degeneration always this rapid? Is it at a consistent rate? Meaning, can I expect it to continue to happen so quickly, or will there be peaks and valleys? Have you found anything to help slow things down at all? I would ask in the EDS group I joined on facebook, but honestly, I have never met a more depressing group of fractious, argumentative people in my life! Not to mention that it seems half the folks on there are just trying to sell supplements and snake oil! So I figured I would rather ask here, and besides, I don't know how much my POTS is complicating things anyway. The one bit of sunshine is as least I see my pain doctor on Wednesday morning, so at least we should be able to get the pain under better control. Thank heaven for small mercies! Sandy

There are quite a few people who experience widespread pain just as part of their POTS. Personally, my pain is in my joints, and after repeated injuries finally found out I had EDS type III, but what you are describing sounds like the more common widespread pain POTSies can feel.

I have run into this attitude more than once. I don't drive anymore, my fiance does all the driving. I will freely admit to using my cane every time we go anywhere not necessarily because I need it, but because I don't need the grief or stares. Of course, wearing tops that expose my port/cath helps, too. It is really a hurtful and frustrating thing to have to declare your illness to an antagonistic stranger just for a parking spot. Gentle hugs your way Cat Lady!

I travel about 2and a 1/2 hours to see all of my specialists, but having people who have actually not only heard of my issues but know how to treat them is well worth the effort. I would definitely go, and at least get treatment guidelines for your local doctors to follow. Sandy

I lost the weight so fast because of a celiac reaction. My fiance and I went out to dinner, and despite stressing how very important it was to make my food separately to avoid the risk of cross contamination. Thus far I have managed to regain about 4 pounds. (I am 5'8, and currently 134 pounds, so still about 6 pounds under the minimum my doctor likes to see me at.)

This is precisely why I drive several hours to see Dr. Grubb. It is not easy to travel to see him, or the trip I take 4 times a year to the Cleveland Clinic. (All my other specialists are there.) Because ultimately, it is worth not having the grief of Doctors who don't understand my conditions jumping to conclusions. It does nothing to improve my condition, or my attitude! Sandy

I think that there can be tremendous benefit integrating holistic and homeopathic treatments with conventional medicine. As to whether either one can "cure" us, I have reservations. I have tried a lot, with mixed results. Acupuncture and energy work has not done me a lot of good, but I had several session with a woman who specialized in facial reflexology that did wonders for my TMJ, and gave me some relief in the hips and lumbar spine. (I wish I could find someone with her training here in Ohio, I saw her while staying with my parents in Charlotte, NC. Anyone interested, send me a PM and I'll be happy to share her info.) I think ultimately, any treatment that can reduce our overall stress level is worth pursuing. Assuming of course, you have any money left for such things after seeing all our doctors and buying all our prescriptions!

I have an implanted loop monitor. (Specifically, a Reveal monitor from a company called Medtronic.) It was placed in my chest during a quick, outpatient procedure. It took maybe 10 minutes? It was placed by Dr. Blair Grubb, and he has done tons of them, so I imagine that factors into how quickly the procedure went. I have had mine for about 2 and a half years, and it is just so convenient. I do have a device I can use to tell the monitor to record, that I feel dizzy, but I don't use it. The monitor automatically records anytime I go outside of certain parameters preselected by Dr. Grubb. I have a device that is plugged into my home phone line that I use to upload the info from my recorder to Dr. Grubb's office, which as I live over two hours away this is quite handy. I didn't want a Holter monitor because I really didn't need anything else to lug around with me. I also have family history of an incredibly rare, but extremely dangerous heart defect, so having a more extensive look at what was going on was warranted. Thankfully, there has been no evidence that I share that particular problem! The battery lasts about three years if I remember correctly, and based on what we has seen I think it is fairly likely when we remove this one it will not be replace by a fresh one. Sandy

I can only imagine how frustrating your situation is! When I got my diagnosis, I really didn't understand it, so the fact that they didn't "do something" beyond recommending increased salt and prescribing support hose didn't phase me until much later. I was so foggy back then it truly didn't occur to me that I might be treated for my symptoms! Getting the right "team" together for my medical care took quite a bit of time as well. I know it can be frustrating, especially since it is natural to think that once you have an answer to what is wrong surely there must be a way to fix it, so hang in there! I will be thinking healing thoughts your direction in the meantime. Sandy

I saw my PCP yesterday, and she plans to make sure that doctor knows EXACTLY how displeased she is!

I am fortunate enough to have a port, because it gives me the ability to self-administer IV fluids after a bloods draw, so I don't usually feel too bad after one. But sometimes luck is just not on my side, and no matter what I do it wipes me out. Fluid load like crazy and hopefully that will help you get some relief! Sandy

I have EDS, so I could not imagine functioning at all without pain meds. I am on Cymbalta, which is useful in managing widespread pain. I also take narcotic painkillers for my EDS pain (which is due to constant injury and degeneration of my joints) and far from making me loopy they have given a small portion of my life back. I am never without pain, nor is that the goal of pain management. My pain management specialist says our goal is to ease the pain to a point where I can participate in life, but no so much that I am careless and injure myself further. As far as exercise goes, I can walk in a pool, and that is about it. Land based physical therapy absolutely leveled me. But aquatic PT went a lot better. So, moral being, if he suggests exercise, you suggest he give you a referral to a physical therapist for exercise you can do without, or at least with minimal, pain! Sandy

It is so frustrating and demoralizing to have the "experts" discount your experience. I can't count the number of times I have been told I was overreacting, or that I was being emotional. If I didn't have validation from my team (doctors assembled over time and painful experience) I don't know what I would do! I just got hustled out of the hospital on Monday, to my PCP's fury given that my vitals are in the toilet and I had lost 10 pounds in 10 days. The hospitalist actually told me to my face that I was keeping someone who was "really sick" from getting a bed. So our latest plan of attack is to treat me at home as if I were in the hospital. I have the advantage of having a port, home healthcare, and a really supportive fiance. As for saline therapy, unless you have kidney issues, why is he so against it? My docs love it because of all of the therapies I am on it has the least negative effect, and doesn't interact poorly with other meds. It is one of the few things I take that actually makes a big difference. I wish you luck! I am on the other side of the country, so not much help with doctors, but I think potsgirl is from Arizona. Sandy

I tried topamax years ago, had overwhelming fatigue and no real improvement, so it didn't last long. Amitryptiline worked wonders, for about two months. Cymbalta, DHE injections for rescue, and cutting back caffeine did a world of good. Still hit bad patches and will have them daily for a few weeks, until it blows over. I just grit my teeth and hope for the best until it passes. Which is MUCH easier said than done! Samdy

As BellaMia said, sometimes you absolutely have to be your own advocate. Most of the doctors you see will either never have heard of POTS, or will only know of it in passing, not having any real familiarity with it. So learning as much as you can is really important. I stayed in the Charlotte area for about 8 months, (long story, was too sick to look after myself, and fiance was house hunting for us, I would not live with him in his old place) and had a rough time finding good doctors out there. So I feel your pain. I would print out articles that had been published in medical journals (there are some really helpful ones by Dr. Blair Grubb that breal down the basics, you should be able to find it on the Dinet home page, I found this by searching Google: http://knol.google.com/k/postural-tachycardia-syndrome# and it looks really helpful. I have been on IV hydration for over two years now, and I don't think I would be alive without it. I have celiac disease as well as POTS and EDS, and the Celiac interferes with the absorption of bile salts and hydration, so in many ways it is a horrible combination with POTS. Every time I have a celiac "attack" for lack of a better word, I get much, much sicker. The IV saline truly is a life saver. I have a port/cath, I am actually on my second. I developed too much keloid scarring and they couldn't access it anymore. I just got my new one about a month ago, and I upgraded to a power port this time, so if they have to do a CT with contrast, which I seem to need all the time, they can do it through my port and I don't have to be stuck with a huge (by my standards anyway!) needle for the contrast fluid. I LOVE my port, I get stuck once a week, when they change out the needle and clean the area and change the dressing, and that's it. They can do everything from give me IV meds to taking blood for labs through my port, so it saves me a lot of grief. IFrom the sounds of it you are a long way away from that. My doctor told me two years ago that as I had no history or evidence of kidney problems, saline therapy is one of the least invasive things we can do, and as long as my kidneys are holding up fine she sees no reason to discontinue it. Sandy

I have seen a huge decline in my ability to be "up", even in just the past few months. I woke up today at about 9pm, having slept almost 24 hours. I also just got out of the hospital after a 3 day stay. I usually am "up" only in bits in pieces, to make something to eat (although that hasn't happened much lately) and then I go back to the couch. Needing far more help with my adl's than I used to. Sigh. I no longer drive at all, I am too afraid of what I might do to someone else. I just couldn't live with hurting someone else because I was too reluctant to admit that I just can't do it anymore. Sandy

I have EDS (type III) which causes my POTS, so I said I have had it all my life. The earliest I recall having symptoms is when I was 17. (Side note: I got up to get a drink while writing this, and had a full syncope episode on my way to the kitchen. Fortunately I passed out while still in the living room, and over carpet. But I bruised my knees and hip in the fall. Curses!) And my symptoms pretty much disappeared for my twenties, only to re-appear with a vengeance in my thirties. I am 36 now, and totally disabled, I haven't been able to work in over a year, and will not be going back ever unless things change dramatically. Which looks unlikely. But my life works better for me, and I am FAR happier then I ever could have dream. My illnesses has forced me to address and confront issues that has been haunting me for years. With therapy and a fantastic support network, my life is better than I ever could have dreamed, even if my health is terrible. Sandy

That sounds like an "episode" to me. There is a lot of variance in symptoms, some of us do better than others, or have different symptoms. But sensitivity to temperature, and not being able to compensate for it, is something you will see a lot of us describe. So sorry you aren't feeling well, hope you mend soon! Sandy

It is hard to imagine getting older considering what is happening to my body now. I am shocked at how my health has derailed, especially in the last year or so. A year ago I was convinced I would eventually go back to work and live a "normal" life, if I could just find the right balance of meds/lifestyle accommodations. I now know that is just not realistic. The breakdown of my body has been progressive and rapid, but I have more than POTS creating problems for me. Specifically, the fact that I have Celiac Disease has aggravated both my POTS and my EDS to a point where even the average daily tasks can be overwhelming for me. I actually worry about getting old, more so because I worry about what quality of life I can possibly have, given that I am only 36 now. I guess I will find out when I get there! Sandy

I gained about 35 pounds (I went from 125 to 160, I am 5'8 so it wasn't too horribly overweight for me, but I was very much less than thrilled!) when I first got sick. Then, between October of last year and January of this year, I lost all that and more. I was diagnosed with Celiac Disease in March, and gained 15 pound back after cutting out gluten, putting me at a fairly healthy 140. Have hit a bad patch lately after dining at a restaurant that cross-contaminated my food, even after spending 3 days in the hospital I can seem to stabilize.