deucykub

Your story brought a tear to my eye. It really is wonderful to have a place to go for emotional support, isn't it? I just appreciate you all so much! I'm so happy to hear that you were you better equipped to deal with syncope in public, masumeh. Way to go!

Hi, Becca: Wow. I am so sorry that you are going through all this. You absolutely have the right to question this diagnosis. I've never heard of "psychogenic dysautonomia," and if it is not a medically verified illness (a.k.a. is it real?), then your doctor has a lot of nerve to not only hand out this diagnosis but to add discredit to dysautonomia diagnosees who are already struggling as it is to get well. This is the first time I've ever been grateful that the U.S. doesn't have socialized medicine. At least if we get a screwy doctor or insurance refuses to pay, we can choose to go into debt and see the doctor of our choice to get better. I'm in total agreement with Persephone, please do get in touch with the doctor (Prof. Mathias?) who originally diagnosed you and rationally lay before him what has happened and ask for his help. I completely understand what it is like to have someone/thing hold so much power over your life. You must be so frustrated. My workplace had a choice 18 months ago to either help me or not. They chose "not." So the last 18 months of my life has been fighting my employer (a U.S. agency) to get back to work. Their choice has resulted in my losing a year's equivalent salary, and I am (although I hate to say this, because I am a fighter) nearly powerless over their refusal to allow me to work. It is beyond all belief to sit by and watch someone else take control of your life. I am so, so very sorry that you are going through this with your healthcare system, doctors, and employer!!! I can't begin to imagine having to battle all three fronts. Hang in there. Don't let "them" (i.e. all of the above) get you down. You have every right to feel upset and overwhelmed. It's natural to go through situational depression when facing so much stress and pressure. It's not in your head. We believe you and support you 100%. Please keep us informed about what happens. You will be in my thoughts and prayers.

Oh, Morgan: I am so very sorry to hear that you went through this today. It does seem like the illness just takes away little chunks of our lives one bit at a time. We do become easily resigned to it after awhile, but in a way, I think that's a kind of grace. Otherwise, the hurt would last too long and be unbearable. It's small comfort when things are going really wrong, but try and remember what you still can do. You can still hug and feel the warmth of a comforting embrace. That's what makes life worth living for me on those really bad days. You will be in my thoughts and prayers today. My depression remedy is sappy movies, endless ice cream, and a good cry. Then it all feels a little better in the morning. It's okay to grieve; this is a very real loss. Sending a big hug your way!

I haven't found one yet either! My husband could drink a six pack and pass a sobriety test. It's very annoying that he is more stable "wasted" than I am on a good day! (Oh, and it's really fun to see me if I actually splurged and had one drink.) LOL Today, in the kitchen, I actually walked in a circle for a few seconds. It was like my compass couldn't find true North, so I just spun. Heck, I guess I used to love the merry-go-round on the playground. Now I can have the fun without the equipment!

Hi, Jess: I don't know of any specific doctors in Florida, but when I lived there, to find a specialist for Fibromyalgia, I'd often try doctors at a nearby University. You might try contacting the University of Miami's neurology and cardiac departments to see if there are any local specialists. University doctors are often more willing to learn about new illnesses like POTS, too, since they are typically researchers and professors in addition to clinical practitioners. I'm sorry I can't be of more help. Good luck in your search!

Hi, Heather: Sunfish has made a lot of good points and knows her stuff! I have to agree, as well. That's a really low calorie diet that you are on right now. Have you been monitored by a doctor or nutritionist with your new diet? Again, in agreement with Sunfish, it seems very likely that you inadvertently cut out a problematic food or larger meals might be the cause of your syncope. On the day that you fainted again, you mentioned you ate anything you wanted... what did you eat that day that you weren't consuming on your dieting days? While your diet isn't the best plan and should probably be modified to include more calories, you might have discovered some good information about your fainting. - If there was more than one food type that you ate on your non-dieting day that you haven't been eating while dieting, perhaps you can introduce those into your diet on separate days to see how each food type makes you feel. - To see if larger meals might be the cause, you could try eating a large meal that consists only of the types of food you ate while dieting. I do hope that you have somehow discovered a way to help yourself feel better (but I agree with Sunfish - the drastically reduced caloric intake will cause more harm than good in the long run). Take care, please!

Hi, Kendra: I'm so glad to hear that you had a good night. I can completely understand what you mean about the little accommodations you made through the night, but the most important thing is you made it! I hope this round of POTS starts to taper away soon for you. Yay for getting some enjoyment out of life!

Hi, Mark: I'm very glad to hear that your experience with the doctor at Mayo Clinic did not contaminate your respect for their research and medical contributions. They, in particular, have published and conducted extensive research on dysautonomias, including POTS. A quick search in EBSCOHost pulled up this article: Assessment of autonomic dysfunction following spinal cord injury: Rationale for additions to International Standards for Neurological Assessment. If you've not already read this, it might provide some helpful information. My health problems began at the age of 10 when I was in a car accident. When the front tire hit an oil slick, the vehicle went out of control, ran into tree, and flipped upside down. I was in the middle, backseat with only a lap-belt and was unconscious for a bit while I was hanging upside down. As far as I am aware, there was no spinal cord injury. I started blacking-out on standing (never a full faint) after that point, which was diagnosed as being "tall & thin." I also have had severe back and neck pain since that day, eventually it evolved (?) into a Fibromyalgia diagnosis. Luckily, it is controlled now with Cymbalta (my wonder-drug). My doctors found bulging discs in my lower back and slight scoliosis when I was 18. I really haven't pursued a lot of different tests since I was in my teens for my back. It's easier just to put up with it for now. I did have a positive ANA test about a year ago (160:1 titer, homogenous), but my rheumatologist ruled out any known autoimmune diseases. My PCP still believes there is some kind of mixed autoimmune disease affecting me, but again, I've pretty much let that go. PFTs found a high-end of low DLCO (70%/78% adjusted) and mild - moderate asthma (CT showed some lung scarring, not ILD). Arterial Blood Gas showed Compensated Respiratory Alkalosis (however I do not hyperventilate or have panic attacks). EKG showed no abnormal heart rhythms (other than tachy) and ECG only found mild Aortic Insufficiency. My symptoms are many (my signature is the short list), and after a lot of research, I have come to the conclusion that they are all related to dysautonomia/POTS: Persistent symptoms: disabling fatigue, nausea, memory and cognition difficulties, chest pain and tightness, cyanosis on exertion, sleep difficulties, often tachycardic at rest, and back/neck/hip pain (FMS/POTS overlap). Orthostatic symptoms: tachycardia (averaging 140, as high as 180), dyspnea/shortness of breath, acrocyanosis (feet, legs, hands, and lips), palpitations, nausea with some vomiting, disorientation, dizziness, diaphoresis, shakiness, increased chest pain, gastrointestinal symptoms including breakthrough problems and GERD, darkening of vision/black outs, ringing in ears, imbalance, mental confusion, and presyncope with NMH. My diagnosis is POTS. My doctors and I have not pursued whether or not my symptoms fall into a specific "category" of POTS, such as hyperadrenergic, partial dysautonomia, low-flow, high-flow, etc... I guess after so much testing that once I had the diagnosis with the treatments at this time so much the same, it seemed more important to me to concentrate on getting well rather than trying to really narrow down the cause of my POTS. However, getting the right diagnosis is so important for peace of mind! Once I knew what I was fighting, I could start to develop my battle strategies. You'll find a lot of empathy on this forum for your quest for a diagnosis as well as the compounding, disabling nature of so many symptoms. LostKendra, FWIW is, I believe, "for what it's worth." Someone may have already answered you, though. This took a while to type up with my cognitive level on the low side today.

Hi, Mark: This table may be of interest to you (source: http://www.mayoclinicproceedings.com/pdf/8203/8203a5.pdf). It shows the percentage of postoperative cases of POTS over 11 years at the Mayo Clinic (granted, you are probably not particularly pleased with the source right now).

Hmmm... with blood pooling in the feet, a Podiatrist might actually be interested! Seriously, though, I completely agree with Amy. The key is finding a PCP who is willing to listen and learn, and it sounds like you may have found one. My PCP was recommended to me by the receptionist of her office group. My Rheumatologist's resident recommended the office group as a place to find a good PCP. I called that group of doctors, and the receptionist said, "I send my Dad to" this doctor. Could there be a better referral??? My PCP has stuck by me through multiple diagnoses and other doctors telling her my symptoms were psychological. To which she would respond, have you seen her lips turn blue? She also was honest enough to tell me which doctors believed this was all in my head, and that helped me remove the disbelievers from my medical "team" to find doctors willing to help. At my last appointment to see her, a different doctor came in to see me. I was so afraid that she was starting to tire of me and was handing me off. But after explaining my entire history to this new doctor (and you know how annoying that is) and answering all the questions all over again (over at least 30 minutes), the new doctor left and returned with my PCP. My PCP said this doctor is a resident, and "they just don't teach this in medical school." She wanted to teach this resident about POTS through the experience of examining me! Needless to say, I was so very impressed by and grateful to her. If the nurse you spoke to recommended this doctor and said he/she is willing to learn, you may have just hit the jackpot. I'd make an appointment and check him/her out; you may be very pleasantly surprised. We bash a lot of bad doctors in these forums, but there are doctors who are still in medicine to help people and who represent the best of humanity. Finding one of those doctors can make all the difference in the world in both your healthcare and your state of mind.

This just goes to show how important it is to trust our instincts about our diagnosis/es. You've been saying since at least my registration date on this forum that you were certain this was either more than POTS or something other than POTS. What a moment of validation for you! I hope with all that is within me that your doctors can treat and cure your arrhythmias and that they discover you DON'T have POTS. I'm so impressed by the way you "stuck to your guns" with your cardiologists to find the truth about your condition. By the way... 278 bpm... holy cow, girl!!!! I'm so glad you are okay after that episode. Take care of yourself, and please keep us informed. Yay for getting some answers!!!

Wow, smiles, what wonderful news! You must be so thrilled!!!! Thanks for sharing this with the community. I'm so excited for you. It's fantastic to see one of our own discover something that helps, and it gives the rest of us hope that someday an answer will be found. Congratulations and enjoy eating again!

Whoops - thanks for the correction, Maxine.

Thank you all for your replies about how beta blockers help you. You've given me a lot of great information to contemplate. It sounds like beta blockers, like all other POTS medications, seem to have no predictable effect with the exception of lowering the heartrate. They may be worth trying for me though, since some of you are experiencing some significant improvement with them. I'm getting really tired of being in my apartment... argh!

Oh, Effexor is awful, awful, AWFUL stuff. My PCP in Florida must have had a contract with those folks, because he prescribed it for me for Fibromyalgia and my husband for depression. It was horrible while we were both on it, and going off of it was terrible! We both went "cold turkey" because we are stubborn, and I must admit a tad stupid, ha ha. Thankfully, we didn't stop at the same time, or I doubt we'd still be together. Our emotions were all over the place. I've blocked out the specific symptoms of withdrawal from my memory banks. My husband refuses to take any kind of SSRI or SNRI now because he was so horrified by withdrawal. How is your son doing? That therapist sounds like an idiot who deserves a good (at least verbal) thrashing!!!!!

Lina, my doctor also recommends 4-10 grams of salt a day. Do you see Dr. Freeman at BIDMC? ---------------- I probably consume about 4-5 grams a day. My stomach wouldn't tolerate the salt tablets, and if I try to eat that much salt in foods, well, I'm not sure I'd be able to fit through the door in a few months! I don't take any supplements, and the only restrictions on food are related to those that specifically have a history of triggering my gastro-intestinal episodes. Those for me are Wendy's fried foods, oranges, triscuits, club crackers, watermelon, chips, cookies, grocery store bakery cake... just a very odd variety of things. Some of them are quite delicious though, so cheating is not an unlikely occurrence! My doctor recommends 2 liters of fluids each day. I've become accustomed to 2 liters of Crystal Light (with only 10% of the calories in Gatorade/water is nauseating) mixed with 1 tsp of salt. This guarantees 2 grams of sodim in that alone, which is more than double the amount in 2 liters of Gatorade, and Crystal Light (or the store generic) is much less expensive, too. It actually doesn't taste bad. As for Sea Salt, I think it has less sodium than Iodized Table Salt, but my only evidence for this is the Campbell's soup commercial touting lower sodium because they've switched to Sea Salt (no, Campbell's, no..... we need you! ) I think that many of the problems that medical research is linking to sodium is actually caused by high blood pressure due to excessive sodium intake. Is this correct? This is leading a lot of people (journalists in particular) to continuously report how bad sodium is for the body; however, they don't include the information that sodium is also a vital electrolyte the body needs to stay alive! My understanding though from my specialist is that those of us with low blood pressure are not at risk from the increased sodium; it's not excessive for us. The best evidence to show that our bodies flush out too much sodium is probably the fact that our doctors prescribe Florinef, which helps the kidneys retain sodium, resulting in an increased blood volume and increases in blood pressure. On Florinef, my BP averages about 110/70; off of Florinef, it is about 90/50 on a good day!

Welcome to the forum, Kendra. POTS causes a lot of very real losses in the lives of its diagnosees, and it is not only very normal to cry, but it is very healthy, too. It's better not to let these emotions build up inside you. I just can't imagine packing up at work. That must have been so devastating. I haven't worked at all since this past July because of POTS, and I've been working to get help from my workplace so that I can work (reasonable accommodations) for the past 17 months. They keep saying no, but until they fire me, I'll keep asking and appealing. I dread the day when they say the final "no" and let me go. That would be the day I have to literally "pack up" as well. So I hold on to hope until there's nothing left to hold on to! All this just to say, I empathize with you. I'm sorry that you are dealing with POTS, but I hope you can find some encouragement in our little corner of the world.

Hi, Mark. Welcome to the forum. I'm sorry to hear that you are struggling to receive a diagnosis for your illness(es). You'll find a lot of people on this board with very similar stories in their quest to find out what was causing all of these symptoms. We all feel and understand the pain of being brushed aside, having doctors either tell us (or hide from us) that they think it's all in our head. Frustrating! Dysautonomia is very similar in its symptoms to many other illnesses, including adrenal problems, pulmonary disorders, cardiac disease, gastro-intestinal disorders, and others! Which means that those of us with dysautonomia have pretty much been through the gamut of medical specialists. There does seem to be a link between physical trauma (vehicular accidents and invasive surgeries certainly fall into that category) and/or viral infections to many cases of dysautonomia. There are also cases with no known cause - I fall into this category (firewoman, don't feel alone!). As you rule out more and more causes of your symptoms, dysautonomia becomes more likely. Because the autonomic nervous system is responsible for the regulation of the entire body, it can affect multiple systems and present with multiple (as well as varying) symptoms. Here is a link to a great reference tool, the Dysautonomia Handbook (the .pdf links are at the bottom of the page). The most common (if you can call dysautonomia common) dysautonomic diagnoses seem to be Postural Tachycardia Syndrome (POTS) and Neurocardiogenic Syncope/Neurally-Mediated Hypotension (NCS/NMH). You can perform a simple test at home to check for the key symptom of POTS (assuming you have not done this already), the "poor man's" tilt table test. To do this, sit or lie down to allow your heart to reach its resting rate (about 5 minutes should do it). Take your pulse (or if you have a BP Monitor that also measures heartrate, that's even better) in this position. Next, stand up and take your pulse/BP. Staying motionless and remaining standing, do this every minute for the next 10 minutes. If your heartrate accelerates >30 beats per minute or =/> 120 beats per minute within those 10 minutes (it can happen as soon as you stand to as late as 10 minutes into a stand), you are demonstrating the key part of a POTS diagnosis. The other part of the diagnosis is that you experience symptoms when you are standing or are in an upright position. I was very fortunate to have a doctor (an occupational physician) start to figure all of this out. It started when he took my pulse during the exam while I was sitting, and it was 125. He wanted to capture my heartrate by EKG, so he had me lie down to prepare for the EKG, but because I was lying down, the EKG showed my heartrate at 90. He also saw that my extremeties and lips were turning lovely shades of blue and purple, and after some research, he eventually connected the dots between my multiple symptoms/diagnoses and dysautonomia. Eureka! I'm not sure what medical options you have in your location; however, your best bet to confirm or rule out a dysautomic diagnosis would be an Autonomic Neurologist. I currently am treated (and was officially diagnosed by) Dr. Roy Freeman at Beth Israel Deaconess/Harvard in Boston, MA. Dr. Freeman and his staff conduct research on dysautonomias, and he is one of the top five experts on these conditions. However, it is an Electro-Physiologist, Dr. Grubb at the Cleveland Clinic in Ohio, who seems to be by consensus the authority on POTS. I wish you the best of luck in finding a diagnosis. You aren't crazy. This isn't all in your head. Believe in yourself, trust your instincts, drop doctors who don't believe you, and seek out specialists who truly understand dysautonomia to ensure either way that this is or isn't the correct diagnosis. Take care!

I just received a response from my doctor. She spoke with my specialist and neither of them had experience with supine workstations, either. She did think that they would be helpful for a return to work, though! It seems like such a simple idea that would be so helpful to many of us who can't sit up for extended periods of time. I wonder why no one has heard of them? Like Amy said - they would certainly be less costly (both financially and in resources) than losing an experienced person simply because he or she suffers from POTS.

I'm very happy with my POTS specialist, Dr. Freeman in Boston. He has been just great! However, if all of the above were true (oh... we can dream! ), and if it wouldn't risk offending my current doctor, I would go to the MayoClinic for their depth in testing and to get a different perspective from their experts. I think it would be a great learning experience! I participated in research with Dr. Freeman and learned so much from his research staff, particularly Dr. Bonyhay! He was an open book about his theories and answered my many, many questions.

Hi, Niki: We know you're not crazy, sweetie. We're here to validate each other and try to make sense of all of our weird symptoms. I think in POTS our bodies are horribly misaligned, and our vital signs don't necessarily correlate to how we feel. Part of the problem is that our bodies just don't seem to react correctly. I've felt great with heart rates at 150 and awful with heart rates at 110. I almost always have low blood pressure, but one day I felt just terrible and it measured in the 130s/90s, which I've never seen before or since! Also, from all your activity and stress yesterday, you may have experienced some problems with oxygenated blood reaching your brain. That can cause some pretty awful sensations in the head, and I think each time can bring on different symptoms, which maybe means that different parts of the brain responsible for different functions throughout the body may have received less blood than others. Of course, I'm just hypothesizing here. What I would recommend is resting for a day or two, don't push yourself too hard. Your body is sending you very loud messages that it needs a break. Lots of sleep, lots of rest, and lots of fluid, and this flare should pass. Take care of yourself.

My doctor has not put me on a beta blocker yet because I had a severe asthma attack while taking a non-selective beta blocker, Propranolol, prior to the onset of POTS. However, he is starting to consider prescribing a selective beta blocker to lower my heart rates, which tend to average about 140 when I'm standing. My heart rates don't really bother me all that much - in fact, I didn't even notice that they were high - but I'm thinking that having lower heart rates might help me feel less tired all the time? What symptoms have beta blockers helped for you? Have they made anything worse? Thank you!

Hi, Niki: With the exception of "bursts" in the head, it all sounds very POTSy to me. Particularly the vibration feeling in your face sounds like a sensation I feel when I become very, very nauseated, which also occurs for me right along with pre-syncope. The only bursts I've ever had in my head are when I am sleeping, sometimes I'll "hear" (for lack of a better word) a bang that wakes me up with a jolt, but this is a pretty common sleep thing that occurs even in healthy folks. Get lots and lots of rest. A hospital trip can really wear you out, even when its not you in the hospital. It is a very stressful environment and can knock even a healthy person for a loop, let alone a person with dysautonomia! It sounds like you are having a really rough flare. I hope you feel better soon!

LOL, Pat. Best tip ever!

Hi, Angela: You're in my thoughts today! I hope your testing today and appointment tomorrow go very well and that you get the answers you are seeking. A good doctor can really make all the difference.