sandymbme

I voted "other" for trigger. I have EDS (Ehlers-Danlos Syndrome) and that caused my POTS. Lucky me! Sandy

It is true, there can be a lot of frustrations in building a good medical team. And in dealing with this illness, you need a team. It should include a good support system, supportive, knowledgeable doctors, and as much reliable info as you can get your hands on. There are tons of great resources and links, as well as general info, on the main Dinet site. I know they are currently updating the physician list, so keep checking back to see about finding a good doctor close (relatively speaking, most of us travel quite a ways for our specialists.) to you. You should think of your primary care physician (PCP) as the hub of a wagon wheel, and each of your specialists as the spokes. Your PCP should be aware of all the meds prescribed, all the treatment plans suggested, coordinate care and make referrals. You need to have one doctor that knows what everyone else is doing, so that your specialists don't inadvertently make you worse by prescribing drugs/regimens that are contraindicated. From what you describe, your current doctor is not fit for that role. I interviewed several until I found mine. I literally called offices and asked about PCP's backgrounds, interests, specialties. Just because they don't have an official "specialty" does not mean that they do not have their respective areas of interest. For instance, my doctor is very into fundamental/integrative/holistic medicine. So I knew she would be more open-minded. She was just starting her private practice, and had the time available to help me pursue getting the very best care and evaluations possible. She also started out as an ER doctor, which meant she already knew the vast majority of specialists in my city, and knew who was good to send me to. Your specialists should each help support you "rolling along". They should be willing to work with your PCP to manage your care, sharing information, results and med changes with your PCP. They should be helping you get any of the supportive care you may need. Your "team" should be able to help you file paperwork with insurance and/or disability and/or your employer. The focus should be entirely on getting you and keeping you as well as possible. I am truly fortunate that I have an amazing team. Sadly, when you go to the ER it is a toss up as to the level of care and understanding you receive. Sometimes I have a great doc who understands and is willing to talk to the people who can best guide them, sometimes I get a rude resident who is so impressed by their shiny new "MD" that they really have no interest in a word I say. When you have a rare disease, this is sadly part of the package. But you can not let that deter you from advocating for yourself, and fighting to get the very, very best care possible. For one, it will make you feel better to take control of your healthcare decisions, and it is your right to do so. For two, if (and from your numbers, it sure looks like this is the case) you do have POTS, trying to ignore it is really not an option. It does not disappear untreated, and you can't wish it away. As for the "doctor speak" thanks so much for the compliments, but I can't take credit. My mom is a nurse of decades of experience, and she gave me a very similar suggestion when I had a hospitalist treating me that was dismissive and demeaning, and was driving me batty. I just kept getting sicker, and he kept dismissing outright any suggestion or request I made. Mom told me that most doctors are very solution oriented, and care most about answers to problems than problems. She told me to stop focusing on what was going wrong, and why it was going wrong, but to simply explain my symptoms to the best of my ability and ask how he suggested to resolve the problem. It worked like a charm! The next day I saw the very kinds of specialists I had been pleading for, that he insisted I did not need. Because then it was HIS idea. Which was fine, he could power trip all day long as long as I got the care I needed! I really hope this helps. Please don't get discouraged, you are the very best advocate for yourself! Sandy

I didn't realize Bentyl worked for that. I don't have gastroparesis, but I do have massive problems with motility. Had great results with Reglan, but I developed the neuro side effects and had to be taken off of it. I do miralax every day, but with mixed results. I see my doc monday, I may ask about that. Sandyy

Micheller- If you try to work, and prove unable to do it, it could end up helping you. Not to mention the fact that a job will pay better than disability! I was really fortunate, I have private disability insurance through my employer, so when I could no longer work they provided income through that insurance. It took forever to get approved (literally 2 years, a rejection, a reversal, and mountains of paperwork!) but I had tons of documentation so I knew it was just a matter of time. Now they are helping me with the disability process through the government, and will even provide me with a lawyer if I get denied. Doing everything I could to try to keep working, pursuing every treatment possible, and working as long as I possibly could all worked in my favor in the end. Not to mention the fact that you can still qualify for disability if you are working, there are just income maximums that you need to be conscious of. (I am not sure what they are, but there is a ton of good info on the disability website.) As MomtoGuiliana said, EDS can cause POTS. It is my root cause. The pain associated with it can be horrific. I have literally been up all night because my hip has been so bad I can't sleep. As I said in another thread, nausea and GI symptoms are one of the most common POTSy issues, you will find a ton of people have GI issues, especially with motility. Which can cause nausea. Sandy

I know it is scary to pursue further testing and exams when you have had bad medical experiences. Unfortunately, due to the rarity of the condition and relatively small number of doctors who treat it, you will find that most of us have had the same sort of experiences. I have my formal dx's from the Cleveland Clinic, and am under the care of Dr. Grubb (who is one of the world's foremost experts on POTS, not to mention a heck of a nice guy!) and regularly have local physicians tell me I am anything from a drug addict to a hypochondriac to crazy. Just remember that no matter what any given doctor thinks, you are the foremost expert on YOU. If things have changed dramatically with your health, you really have to keep truckin' until you find a doctor that is willing to help you resolve your issues, or at least develop a good treatment plan. I highly recommend going to a center like Mayo or Vanderbilt because having an accurate dx is really vitally important to managing your health. As for your symptoms, I have constant numbness in my face, hands and feet. After much poking and prodding, it seems to be the consensus that it is either due to poor circulation from POTS, or related to my EDS. (Which is the cause of my POTS.) One of the many reasons to continue to look for answers is that given your TTT results, if you do NOT have POTS, someone needs to explain why you are having the symptoms and results you have. I would phrase my questions to difficult doctors like this, "These results seem to indicate a problem, and another of my physicians has suggested that they suspect POTS. Has that been conclusively ruled out? I would like further testing (evaluation for EDS aka Ehlers-Danlos Syndrome, blood volume testing, evaluation for small fiber neuropathy, etc) to determine what the root cause of the problem is. In the meantime, how do you suggest that we treat my current health issues, as none of my symptoms have resolved?" Sounds stilted and silly, I know, but I have learned that rather than asking them to explain why they disagree with my diagnosis, but instead asking them how to solve the current problem sometimes yields better results. For instance, if that cardio did not think you had POTS, what does he think is causing the anomaly, and does he have a treatment plan? In any case, I agree that you need new doctors. If your current doctor is dismissive of your concerns they are not healing you, are thus are wasting your time and money. Go to Mayo, or Vanderbilt, Cleveland Clinic, even get on the wait list to see Dr. Grubb, it is well worth the time and effort to be legitimized and have your concerns addressed. Sandy

I can't do any land based exercise, my EDS has compromised my joints to the point where gravity causes too much strain. I can walk in a pool, and am looking forward to starting aquatic physical therapy in a couple weeks. Plus a warm-ish pool is just soothing! Sandy

I can only do aquatic exercise, anything land-based aggravates my EDS too badly. The pool not only supports my joints, but has the added benefit of helping to stabilize my hypotension. I just have to be careful to exit the pool slowly and carefully. It can be a trigger for syncope when I get out and don't have the water pressure, so I make sure to exit very, very slowly. I have a port/cath, so I can't swim as it needs to stay dry. But I find even walking in the pool is very helpful. I have a PT evaluation in a couple weeks, and I am really looking forward to getting back in the pool, it really, really helps. Sandy

I would opt for a helmet as well, and seriously considered one myself when I went through a really bad stretch a few months ago. My blood pressure just tanked every time I stood up, and no matter how high my heart rate soared, it could not compensate enough. Adjusting my midodrine, and increasing my IV fluids has helped a great deal. I still have pretty low BP, but I am rarely fainting these days, just dizzy. Definitely talk to your doctor, though, because fainting that much is a huge hazard for nasty injuries, and there are meds they can try to help control them.

I see most of my specialists every three months. Some are a bit more spread out if I am stable, but as I rarely am, that rarely happens! Sandy

It can be really hard to cope with the ups and downs of this syndrome. I would not hesitate to try marijuana again if it gave you such relief from your symptoms. It horrifically aggravated mine, but I have known others who have had good results. Keep in mind, when it comes to YOUR body, YOU are the "expert". Good luck! Sandy

Persephone- I find that I don't bounce back anymore. But that has a lot more to do with the fact that my various dx's just don't play well together. I have sustained some permanent damage, and as my EDS is degenerative, I can only look forward to more. I find having good support is ESSENTIAL to managing my sense of well-being. Coping with chronic illness can be very, very hard. It isolates you terribly, not being able to work and get out limits your social circle a great deal. I know I sound like an old saw on this subject, but having a good support network is just so very important. I thought for a while that because I was too ill to get out, I had no way of making friends, and had asked too much of the ones I have. I even tried to force my fiance out of my life, because I loved him FAR too much to "chain him to a cripple". Fortunately, a period of intense prayer and reflection, as well as some phone sessions with my wonderful therapist, helped me to see that I was really compounding the situation. I was also being very cruel to the people who love me and care about me by deciding for them how much they wanted to be there for me. I have learned to state simply what my needs are to my entire circle of support, including friends, family, and church. Then I let people volunteer for as much, or as little, as they want. I also stopped being an idiot about the wonderful man who is willing to go on this crazy, and bumpy, ride with me. I have worked very hard to realize that my value is so much more than this shell that is my body. I am so very aware now of the fact that particularly because I am ill, I am especially beloved by God, and if I trust in Him, He will provide for my needs. Trusting in God's abundant love for me has made my life so very much happier, because it really helped me to see my self worth is not tied to my physical ability. Faith is not the answer for everyone, but I definitely encourage you to find the things that make you feel good about yourself, and spend as much time as you can with the people who love you. Don't be afraid or ashamed to seek of professional counseling either. Chronic illness is a huge challenge for even the strongest people to cope with, and there is no shame in needing some help coping. Hope this helps! Sandy

I agree, I think given all your difficulties with food, your sudden appetite is a very good sign. It may simply be your body's way of telling you that your diet, although very restrictive, is in fact healing you. I would try increasing your portion sizes or meal frequency a little bit. Also, there is a magazine called "Living Without" (I found it at a natural foods store, but you could probably subscribe online if getting out of the house is hard.) that has a ton of great recipes for people with various types of food allergies. Obviously not everything would work for you, but being able to increase your options may help. Sandy

I was titrated up on my dosage of Cymbalta, started on the lowest dose, and got bumped up to 60 mg over time. Most of the SSRI's they adjust dosage very carefully. They don't want to give you any more than you need, and as others have said, we can respond really strangely to new meds, so it is always best to take it slow. Especially given that most of us takes these type of meds to aid our POTS, and not (primarily at least) to treat depression, using the minimal dose necessary is really in your best interest. Sandy

Micheller- Have you been tested for celiac disease? I was negative to standard testing, although that has since proven to be false negative. It turns out my IgA was too low to give a positive result to blood testing, and the fact that my endoscopy was negative turned out to be misleading as well. My gastro (that dx'ed the celiac) strongly suspected that celiac was responsible for my intractable nausea, and I had terrible diarrhea, that would only resolve into constipation. We opted for genetic testing, as it is not definitive for diagnosis, but can definitely rule OUT celiac. That was positive (smoking gun, at last! ) and a gluten free diet yielded swift, and stunning results. I went from constant, horrific nausea that responded to nothing (and I tried it all, phenergan, reglan, zofran, the works!) to sweet, sweet relief. It took time, about 4-6 weeks for all the gluten to clear out of my system and to see results, but the difference was striking. Now, the slightest cross contamination of gluten-containing foods or products can make me violently ill within 20 minutes. Suffice it to say, my home is completely gluten free, and we rarely eat out! Just make sure you consult with your GI BEFORE going gluten-free. If you are already on a gluten free diet, you will also have false negatives for testing purposes. And getting a firm diagnosis is very, very important. Celiac, as well as gluten intolerance (which is thought to be even more common, and has no reliable testing) is a very serious condition which can have life threatening consequences if untreated, and the only treatment available is a gluten free diet. It is important to know, that with POTS, all by its lonesome, it is very, very common to have GI and digestive issues. Digestion is part of the autonomic nervous system functions, and so you will see that almost all of us report GI issues. Unfortunately, for many of us the answers to treatment are not clear. You may want to consider consulting with an osteopathic or fundamental medicine doctor. They are usually more open/knowledgeable about homeopathic and natural treatments, and some of us have had more success pursuing some of those types of remedies. I use several myself to supplement my nutrition and help treat my GI inflammation and irritation. My PCP is a big fan of incorporating those types of treatments into my treatment plan, and some of the supplements she has me on have been very helpful. Just make sure you consult with your doctor, just because it is "natural" doesn't mean it is inherently safe, or won't interact badly with your current medications. Good luck! Sandy

Hey Issie! I am doing probiotics and my PCP recommended boswellia and Metagenics UltraInflamX to try to calm down my gut, and get things moving. I suffer from severe constipation and diarrhea, (big surprise with the celiac) and seem to be having some really severe motility issues. Every abdominal CT I have ever had, (including one last week) has shown that my stool was backed up past my colon. Even when I have diarrhea, I just have a heck of a time "clearing out". I am seeing a gastro at the Cleveland Clinic on the 11th, maybe they will have some fresh insight. I can't do muscle relaxers at all. The last time I tried, I had half a Robaxin and fell flat on my face. Without the support of my uber tense muscles (which causes a fair amount of pain on it's own) I just can't support my own body weight. It was quite the rude awakening in to just how much my joints have deteriorated. I am praying, really, really hard, that I will be able to walk down the aisle next October when I get married. As I am currently shopping wheelchairs, because my left hip just will not support me anymore in a reliable fashion. The pain is just too much to bear. I am the opposite, I suffer from terrible hypotension, and take the max dose of midodrine, as well as IV fluids to try to maintain a somewhat safe BP. Otherwise I have syncope episodes literally every time I stand anymore. The celiac really interferes with the absorption of fluids and minerals, (like salt!), so it is just impossible for me to sufficiently hydrate by taking fluids orally. Getting ER and hospital internists to understand that is my regular source of frustration. Sandy

I have celiac disease, so I can't eat anything with wheat, barley, or rye. Sad face. I miss cake. On the up side of things, gluten-free diets have become "trendy", so it is a lot easier to find gluten free products. But processed food in general are not best for you, so I try to stick to whole foods, fruits, veggies, and meats. I also eat exclusively organic and local. (Or at least as much local produce as I can. But sometimes a girl just has to have guacamole, and avacados just don't grow around here!) Sandy

I am physically far, far worse. But spiritually and emotionally much, much better. My physical condition is complicated to a huge degree by my other dx's. So I would not look to what is happening to me as an example of what to expect with POTS. I would definitely recommend putting together the best medical "team" (gastroenterologist, neurologist, cardiologist, etc.) that you can, and make sure you build the best support system you can. I have found that having lots of different people/resources to turn to for support is really key to keeping your health from being your whole life. Sandy

I am in agony with this weather, too. Can't sleep, my hip and head hurts so bad it is all I can do to keep from vomiting. I am maxing out my pain, nausea, and migraine meds, and getting only minimal relief. I HATE rainy, cold weather! Am really, really trying to convince the Mr. to try for a transfer to San Diego, where (I hear) the temp and weather is pretty stable all year long. If only he could get a job that would accommodate the higher cost of living! Maybe a winning lottery ticket? A girl can dream! Sandy

Steven- I think most, if not all POTSies can relate to the emotional swings, and attendant symptom "surges" that go with them. Stress plays heavily on POTS, exacerbates it to a large degree. Dr. Grubb has told me every time I see him that managing stress is KEY to managing our symptoms. One of the many reasons a lot of us are on SSNRI's or SSRI's. (From Prozac to Cymbalta, most of us take something to not only help manage the stress, but this class of drugs seems to aid the treatment of both POTS and migraines, although they are not sure why, exactly.) Not to mention a lot of us experience widespread pain with POTS. Nothing you are describing is that out of the norm for POTSies, except maybe the eye thing which I agree with Jana- you should get that checked out ASAP. Sometimes we do lump everything in with the syndrome, and it is not always the cause of all our problems. I am so glad your friend told you about us. You could not find a more supportive, positive bunch of people. I am so sorry you have to be here, but if you are going to hang on to a semblance of normalcy in your life, having a good support system is key. I have found this forum to be invaluable, and I hope it is as great for you! Sandy

I went to see Beverly Carabin, PhD (Dr. Grubb's nurse practitioner) yesterday. While the visit in and of itself was not great, my condition is deteriorating rapidly, and there is precious little to be done, I had a great conversation with Beverly about how much easier it is to cope with my illnesses given the compassion and understanding of Dr. Grubb. He is truly the kindest, most compassionate soul I have ever met. It seems like an impossible wait to get in to see him, but for those of you who are on the waiting list, I urge you not to give up. Seeing a doctor that is so very knowledgeable about POTS, really at the forefront of research and at the same time is so passionate about the care of each individual that he sees, is well worth the wait. Even though my combined diagnosis make my condition very difficult to treat, being seen by him and Beverly, and being treated with courtesy and understanding, and most of all COMPASSION, makes dealing with all the ignorant idiots who have no idea what to do with me and so play "pass the patient", or worse, write me off as pain med seeking or a hypochondriac so much easier to bear. Isn't it interesting how even when the answers suck, having real answers and a little bit of real empathy is so much easier to cope with than dismissiveness and disbelief. The bad news is that Beverly said the celiac disease has aggravated the POTS and EDS to a degree where it has become extremely difficult to stabilize me. We are going to try DDVAP, because dehydration is one of my major issues with the celiac. And the celiac even complicates my hydration. Had a horrible reaction to the chloraprep, seeping blisters formed under my tagaderm and so had to have my port de-accessed to treat the blisters. Icing on the cake, rainy miserable weather has me puking (literally) from pain, have been fighting off migraines all day, as well as suffering from my hip just completely giving out. I desperately want to sleep, but am just in agony. My pain doc even gave me steroid injections today, and I didn't even get a temporary respite from the anesthetic. Sigh. At any rate, Beverly said my condition is probably going to continue to degenerate, and that with aquatic physical therapy (which is the only form of PT my doctors will recommend/allow anymore, my joints are just too bad to do PT without the support of the water.) and pain management I may be able to at least keep the pain at a tolerable level. All the more reason to look forward to my PT eval in 3 weeks. I also had a bone density screening today, and am going to have an MRI of the hip as well. Thank God I have my faith and the support of my wonderful fiance, and very good friends and family. It was really tough news all around. But she was very kind, and that really helped to soften the blow. It is just so hard to watch my body fall apart, and I am so angry at myself for not taking better care of myself in my twenties. I am sure I took years off my mobility by the abuse I subjected myself to, as well as the punishment of 2 bad marriages. Those of you who are diagnosed young, if you have "remission" (and hopefully cure!) when you are young, take the best care possible of yourself. I am convinced it extends your healthy years. Enough of my self pity party. I am blessed beyond words, I have so many wonderful things in my life, and that is where I need to keep my focus. Counting my blessings is a far healthier, happier way to live. But I think I wouldn't be human if I didn't occasionally grieve what I have lost. In the meantime, I will be shopping for ways to decorate a wheelchair to make it snazzy and fun! Sandy

I know, I commented too! Just pisses me off. Yes, lots of teens are afflicted and recoup. I recovered, too. For about 13 years, all I had was the occasional dizzy spell. Because when I first got sick no one knew what it was, just chalked up to me being bad at aerobics. At thirty, it was completely disabling, and eventually led to other diagnoses. Had I found out at 17 about the EDS, I could have perhaps saved myself a great deal of pain now, by taking better care of my body, and my joints, in my twenties. I just find it maddening the way that even when we get press, we STILL get discounted and misunderstood! Sandy

Have you been evaluated for Celiac disease? This can cause a whole host of symptoms, including vomiting. Plus there are a whole lot of us who have food sensitivities and/or allergies. If you have been tested for celiac, you may want to think about trying an elimination diet to see what, if any sensitivities you may have that are contributing to the problem. Sandy

I actually had botox injections a few months ago, and with disastrous consequences. Within 24 hours I could not open my mouth, or turn my neck. Hindsight being 20/20, had I known at that point I had EDS I would not have done the botox. With the amount of deterioration I have already had with the EDS, "freezing" the muscles with Botox left me without the ability to move. It wore off, thankfully, but it was not a pleasant time. I still have yet to come up with a perfect solution for my migraines. They were, ironically, what led to my POTS dx in the first place. After having them daily for 9 months, I ended up at the headache and facial pain clinic, and the neurologist took one look at my HR and blood pressure and knew there was a problem. He sent me for a TTT, and the rest is history. My migraines are somewhat better controlled, but we have a really hard time keeping me on a beta blocker (which helps) because my hypotension is so bad. Everything is a balancing act, and wouldn't you know, balancing is just not best best suit! Sandy

I take midodrine three times a day, and a rather high dose, regardless of whether I will be sleeping or not, because if I miss a dose I am at HUGE risk of syncope upon waking/standing. While my BP occasionally shoots up, (particularly if I am in a lot of pain), for the most part, it has no real effect. As the above poster said, check with your doctor if you are concerned, but I have been on midodrine for years now, and have had no ill effect, regardless of when I take my meds, as long as I remember to take them! Sandy

If speed is a determining factor in longevity I am SOOOO screwed! I remember in junior high we had to run/walk a mile in under 12 minutes. I was the last to finish, and could not do it in less than 12 minutes. Which everyone found shocking because I was so very thin, even back then. (the only time in my life I have come close to "normal" weight, and not underweight is when I first got seriously ill in my thirties. I gained 30 pounds in about a year and a half. My family was thrilled. I lost that and more when the Celiac kicked in at 35. I am now back to struggling to keep weight on, as I have my whole life.) I guess the expectation was that I must have a very high activity level, and thus be able to zip around the track, because I was thin. But I have always tired very easily. With the effect my EDS is having on my joints, I am praying very, very hard I will be able to walk down the aisle when I get married next year. Sandy