xRobin

Hi Sarah, I am on SSDI as well and I understand the mixed blessing. It's horrible to have an illness that impacts life expectations so devastatingly, but the small income has helped me, well, survive. And I'm grateful for it. You sound like you have a very healthy attitude for everything you've been through. I think the best we can do is realize that like you said we didn't ask to be ill, it's something that happened to us, but it's not who we are. Sometimes it's hard to hang out to our 'selves' when we're really ill but it's so important. I hope you find a little hobby or something to make you feel peaceful. I get migraines too and would love to read your blog.

Goschi, thanks for following up. I was really hoping you would have a lead to follow that would lead to a treatment and I'm sorry this lead to frustration for you rather than answers. That makes sense about poor cognition on standing. I told my cardiologist that I feel stupid when I'm upright, and he jokes that we lose 20 IQ points when we stand up! What is IBZM-Spect? Is that a brain SPECT scan? I had one of those as well, many years ago, prior to POTS and had abnormal results.

That's just like me! I was doing the dishes one night, before diagnosis, standing. After a few minutes my chest felt weird like I couldn't take a deep breath, and this pressure started to bloom. On a hunch I took my pulse and it was 136. I put a heart rate monitor on and was really surprised at how much it jumped around! Just bending over to take stuff out of the fruit drawer in the fridge made it drop dramatically, then pop back up on standing. I hadn't noticed it unless it got really high. The other night I spent some time with my husband explaining POTS. He's generally understanding but didn't quite grasp why prolonged sitting is tiring. It's just sitting, right? I sat on the edge of the bed with my feet on the floor, and asked him to sit next to me. I got out my iPad and drew pictures: where blood goes when you stand up vs. lying down, the difference between blood flow in POTS people and healthy people, the stress chemicals that our bodies put out to get the blood to circulate and why they also cause agitation and anxiety, and why it's so vital that blood get returned to the heart and brain. By the time I was done drawing I asked him to look at my feet which had gradually become purple, and explained that was blood pooling. I asked him to imagine how it might feel if his cells weren't constantly getting fresh oxygen. He gets it better now. It's a really weird disease to understand and explain!

Thanks, everyone! Thanks! I will try these. Actually putting my arms above my head seems to make my pulse drop suddenly, I don't know why. But I think for just a short while it's OK. I'm pretty cognizant of my posture because of lower back pain but it does feel so much better to slouch, doesn't it? That's interesting that you say that about blood pressure because mine has been running low lately. Heat definitely helps relieve some of the pain probably because it stimulates blood flow so I'll try to apply more throughout the day. I didn't know that muscle relaxers were bad for dysautonomia - any reason why?

Hi foggy. I have ME/CFS. In the early 2000s I saw Dr. Sue Levine in NY. She gave me a standing test in her office which I passed, though I did have symptoms of mild OI. I then had a chromium 51 blood volume test at my local hospital's nuclear medicine department, as well as a SPECT scan of my brain. My blood volume was indeed low, and I had diffuse perfusion in the parietal and temporal lobe. It wasn't until years later that I developed POTS. So, I definitely had evidence of autonomic dysfunction - low blood volume and poor blood flow in my brain - without POTS. I think a lot of Susan Bateman's ideas are interesting, but I definitely think it may even be more complicated than that and her theory leaves out a lot. The POTS/non-POTS division is kind of confounding in my case, and POTS seems to come and go in other patients. She doesn't really address the theory of persistent viral infection of the Stanford group or Nancy Klimas's notion of acquired immunodeficiency via poor Natural Killer Cell activity and disruption of the RNaseL pathway. But, I like that more researchers are thinking about the possibility of autoimmunity for all of the reasons stated in the article. I think it's possible that there might be a subset that is autoimmune that probably responds to Rituxan, they have about 30% doing very well with B-cell depletion which suggest autoimmunity. There are people the respond to Ampligen and other immune modulators, and those that have elevated viral titers and do well on Valcyte and Vistide, and they might be the ones with chronic immunodeficiency. I personally like Mike VanElzakker's vagal nerve theory because the the vagal nerve enervates organs involved in autonomic response, and it's a communication pathway between the body and the brain. A persistent herpesvirus infection housed there causing an ongoing immune response would cause all sorts of dysregulation. This disease is complicated and is definitely not a low hanging fruit when it comes to medicine understanding it!

So, my new symptom is pain, specifically tight sore muscles at the back of my neck, down either side of my spine midway and along the edges of my shoulder blades. I'm pretty sure this is coat hanger pain that sometimes accompanies orthostatic intolerance. Every night it gets to the point where I'm so stiff it hurts to move around, and I swear there are spots on my trapezius muscles are hard as rocks. So I lie on a heated buckwheat pillow to get some bloodflow to the muscles and then use a percussion massager/tennis ball/my husband's fingers/accupressure/whatever to try to work out the stiffest knots. I can usually get comfortable enough to sleep but the next day it starts up all over again. This isn't my scariest or most disabling symptom but it's driving me crazy! Does anyone know anything else I can do here? I'm not ready for NSAIDS yet (bowel stuff) but I'm wondering if a muscle relaxer like flexeril would be helpful or is that overkill? Off to heat my pillow and get some relief. (I have one of those massage chair inserts in the basement somewhere, guess I'm digging it out tomorrow!)

Hi sleepy_lady. A tilt table test is the gold standard for POTS but I was diagnosed with a basic standing test in my primary care physicians office. My spike on pulse on standing was so obvious he didn't feel a tilt test was necessary. It's not the normal way that people get a diagnosis but it's definitely more affordable in your case. Did they give you an EKG in the ER? While it's possible for someone your age to have heart failure, it's rare, and a normal EKG would make that unlikely. But, you definitely should have a more thorough exam. If you can afford a primary care visit they can do a lot to screen you for things you might be worried about and help with diagnosis. I'm sorry you got turned down for Medicaid. Another avenue for that is SSI, a supplemental program for people on social security disability. It's difficult to get but if you can't work at all it might be worth trying for, you would probably need some legal help. Typically they do disability cases with no money upfront but take a cut when you get an award. If you do have POTS a lot of the treatments can be inexpensive, simply extra fluids and salt, or exercise. My "recumbent bike" is simply a set of peddles like this set out on my bed! You can get generics for a lot of the drugs such as beta blockers, fludrocortisone is not expensive, and I think midodrine has generic.

Did they perhaps mean onset is unlikely over 50? I've read that it's more common in pre-menopausal women but it seems like anyone can get it. Given the diverse causes I would think it would be difficult to predict the course in all patients.

Goschi, I've had the mottling since onset and I don't seem to get good and bad days with POTS, it's just the same all of the time for me so I mottle any time I stand! (Except when I was on florinef, that helped the mottling but I still had pooling.) I have experienced a gradual reduction in some of the POTS symptoms such as chest pressure on standing and sitting, and some of the dizziness. But the orthostatic tachycardia, lighted headedness, agitation, poor concentration persist. I also have terrible circulation now. My feet are always freezing, even in summer.

Yes, Goschi, mine also appears after a few minutes of standing and disappears when I walk around, cycle, or elevate my legs. I get pooling in my legs when I sit but it's not spotty, more just sunburn red with purple toes which I believe might be acrocyanosis. My doctor says it's "vascular insufficiency" and we joke that I could be an extra on The Walking Dead, gross! I'd be interested to know if your doctors figure out what it is. It doesn't seem very common though I did see a thread on here once where a few people referred to spotted pooling.

Here's a pic I took of mine -----> http://i.imgur.com/nR6JyWOl.jpg Is it similar to what you have? Mine disappears almost immediately when I put my legs up, as well. I'm sorry you can't tolerate compression wear. I hope that they find out what is causing your POTS. Keep us posted.

Hi Goschi, I have a very mottled look to my legs when I stand up for a while too. It almost looks like polka dots or a fawn's back when it's very bad. My doctor thinks it's just from autonomic dysfunction and has noted it on his parkinson's patients who have standing hypotension. Interestingly, when I was taking florinef my legs were merely sunburned looking from blood pooling rather than mottled. I looked at this as an improvement! It suggested to me that hypovolemia is at play for me. I've had low blood volume for years before even getting POTS, but recently haven't had the extensive testing that others have had because other debilitating health issues are keeping me stuck at home and in bed, so I'm not sure if I have an autoimmune component or not. But compression stockings and fluids are my best friends right now and I can manage standing and sitting long enough to do the some of the basic necessities of life. One thing that has helped me sit comfortably for an hour or so at a time is the knees up position. I typically do this in a lounge chair where I elevated my feet only a few inches so they're still very much below my hips, and then wedge a pillow below my knees. I have no idea why but I can sustain this much longer than sitting in a normal manner. I'm still very much upright! Not sure if you have tried this or not. I think blue has some great advice toward dealing with the psychological issues. Also realize that fear, dealing with the uncertainty about your future, dealing with loss, changing roles in your life are all stressors for anyone with a chronic illness on top of the physiological causes of anxiety in POTS. It's a good thing to recognize this.

Hi Lauren, I'm sorry you're having such a rough time! Disorders like fibro and POTS can be vague for a lot of providers unless they take an active interest, read up on the latest literature. I agree with Katy that tt might be helpful to find another one that has in interest. Fibro has been linked with small fiber neuropathy which is common in POTS so it might be worth looking into that. What inflammatory makers did he find? I understand about going to a doctor's office and not having them really understand the full extent of what you're going through.

My EKG and echo were normal, so PH is very unlikely. We talked about doing a stress test but since I have severe me/cfs and can't walk more than 50 steps at a time without getting weak, the cardiologist is not comfortable giving it to me and feels further testing isn't necessary. So for now my chest pains are vaguely labeled "POTS". Hang in there and keep us posted!

I have costochondritis, and it sounds very much like what you're describing. If it's localized and palpable, then it's likely muskoskelatal and not cardiac. It's often triggered by prolonged coughing. But definitely bring it up with a cardiologist.

I hate waiting for test results and not knowing, and being scared of the possibilities. That's the worst! But, like everyone else said it's good that they're trying to get to the root of the problem. Recently I had a cardiac workup and since a lot of the POTS symptoms are similar to pulmonary hypertension and because I was having so much chest pain, the cardiologist wanted to rule that out. I did a little reading about it and I agree it's scary, but, it is usually caused by other conditions and treating those help prognosis. So, even if it's that it's another step toward treatment and getting better. I'm sorry you're going through this.

That's interesting that you mention that. I had a horrible reaction to prednisone a few months before POTS diagnosis as well. Prednisone is supposed to make you feel wired, hungry, energetic. I experienced the opposite - got very tired and weak after being on it for a few days, experienced resting tachycardia, chills, loss of appetite. When I started vomiting I called the doctor and said I couldn't handle it any more. It was prescribed for a status migraine and both my primary care doctor and neurologist were stumped at my reaction. (It didn't touch the migraine.) I wonder if it had some weird effect on the ANS.

Hi, I'm so sorry about what you've been going through. I understand how frustrated you feel at the medical profession for not having answers for you. I've had chronic illness for many years and one of the difficult things to do is to organize myself for and manage expectations about office visits. With complicated cases they often want to be sure of themselves before they proceed with treatment. That's probably what's happening with you, or it could be that your echo is normal and because of your symptoms he wants to be sure he isn't missing anything. It does sound like the doctor cares about you by being thorough and practicing good medicine, even if the beside manner and staff quality are lacking. But, absolutely you should be privy to your health care information including test results, and you should know what his line of thinking is for ordering an MRI. Sometimes what I do if I don't get a return phone call, is that I call again and mention I'll call back in two days (or whatever) if I don't hear back.

I had new onset daily migraine headaches and migraine induced neurological symptoms, they were called 'complex' migraines, a few months prior to onset of POTS. I had full on melon-crusher headaches 2-3 times a day. I sympathize with your daughter! I saw a neurologist who recommended a migraine preventative. We chose gabapentin because of its low side effect profile, but there are many other options in several drug classes. It worked really well for me at a moderate dose but it took several weeks to see results. After POTS I went on a beta blocker which has also helped a great deal, between the two of them I would say I am 90%-95% better as far as the migraines go. Have her neuros tried to treat the headaches at all? It might be helpful to seek a headache specialist. There are many non-pharmacological treatments for headache as well such as elimination diets, acupuncture, and some people find message in the upper back and neck muscles very helpful. Because of her age it's also possible that hormones are a factor and some people find relief with hormonal contraceptives. With headaches there are a lot of things that can be done!

I'm so sorry you're going through this! Yeah, you could try a beta blocker, that helps me with adrenaline surges and stabilized my HR and BP (but doesn't help everyone unfortunately). It could just be changes your body is going through during an infection. I have a bacterial infection right now and I've been having chest pressure and tachycardia, and it seems like I can't hold on to fluids. The nurse at my primary care offices said my veins look dehydrated but I'm drinking and peeing like a stallion. Have you been given any fluids in the hospital? Did it help?

Hi! I'm so sorry you're going through this. I would be very frightened and alone feeling during symptoms. Do you have a local cardiologist? I've had a lot of different types of chest pain, both now with POTS and before, which was diagnosed as costochondritis, but neither my doctor or cardiologist has brought up coronary spasms. Could you describe the pain you're experiencing - how does it differ from POTS pain? How long does it last and where is it? Do you get short of breath? I'm sorry the calcium channel blocker isn't working, but, I hope there's something else. Did they mention nitrates? That would be horrible with POTS but I think having a spasm like that needs to be treated.

What types of food do you normally eat? If you don't have the energy to cook, there are a few easy grab and go type foods that are good sources: 1/2 cup dried apricots 755 mg, 1 cup yogurt 579 mg, banana 422 mg, 1 oz (roughly a handful) almonds 200 mg. Milk and orange juice are great too. If you can cook, beans and potatoes are great.

Glad the vest is helping! I'm not sure how it would work with a trainer and horse, but on a hot day, could you break your training into smaller paced sessions? Like, do 20 minutes, take 5 and go cool off? Does your stable have A/C or a fridge you can stand in front of, or can you put your feet in a bucket of cool water or run cold water over your wrists? I'm just thinking that cooling yourself down frequently can stave off an overheating episode. I read an article about an athlete using a cooling sleeve a long time ago, and I think this is it ------> http://www.avacore.com/ Very expensive but awesome idea! That sounds very scary to be on a horse and have en episode like that. But, kudos to you for not letting it stop your riding. Your horse is super cute and hope you can do your shows this year!

I'm the only one! I have been doing some reading about EDS and it's a remarkable fit for my Mom and Grandmother, though neither one of them had symptoms of POTS. Early onset and severe osteoarthritis, joint issues, hiatal hernia, varicose veins, hypermobility. I wonder if I got a little something that predisposed me toward POTS even though I don't have those problems, though I have other health issues that are probably in play. (I still to this day do not know what it means to "put your back out", other than a lot of pain!) My Gram lived until 87 and my mom is in her 70s and just had a clean bill of heart health from her cardiologist, so if there is EDS in my family it hasn't impacted longevity.

Adding my good thoughts for you Mom, too. Forty-two is young for a heart attack, I'm hoping it was something else.