Would anyone know a dysautonomia specialist in the Philippines or in Asia? I've been confined twice and have had 6 doctors ordering tests for me (cardio, neuro, endo, gastro, pulmo and obgyne) but no one can give me any conclusive diagnosis as to why I've been feeling extremely weak and out of breath with episodes of elevated BP and tachycardia for the last 3 months. There have been some incidental findings such as a blood clot in the subclavian vein, Protein S Deficiency (genetic blood coagulation disorder) and some disc bulges on my spine but doctors said these are not the causes of my shortness of breath and fatigue. I'm already on Warfarin therapy and I take medicine for acid reflux but I still have these symptoms. Tried researching for websites and articles that could lead me to a doctor in the Philippines who knows how to diagnose dysautonomia but so far I haven't found any.
I personally don't know of any in the Philippines. NDRF (dysautonomia research site) mentions Japan and Taiwan as far as Asia goes.
Because you mention episodes, I wonder if any of the doctors you saw tested you for pheochromocytoma? It's a rare tumor, usually found on an adrenal gland, that can episodically give off large amounts of catecholamine(s), which can cause high blood pressure, tachycardia, headache, sweating, etc.. Tachycardia itself can make a person short of breath.
I would hope they did things like testing your ferritin, iron saturation, and potassium levels as well as ruling out hyperthyroidism? Do you feel better when laying down and does the rapid pulse come on with standing?
Yes i got tested for pheochromocytoma and the urine vma and metanephrine results came back normal. However i reviewed my aldosterone and renin results and both are lower than normal range. I don't know why my endo dismissed these results but I think maybe it's because one of my symptoms which is elevated BP is not consistent for someone with low aldosterone levels. I hope I'm making sense!
Since you mentioned that tachycardia can cause shortness of breathing, I still get SOB even when I'm lying down and pulse rate is normal. I don't have asthma per spirometry results and my arterial blood gases test is okay.
My thyroid functions are okay too, potassium and sodium within normal levels. The rapid pulse does come always in an upright position whether sitting or standing.
If the blood pressure is elevating with the upright position, I've had that happen with standing myself as a part of my P.O.T.S.. I believe my body is overcompensating when this happens, trying to prevent me from passing out so hard that it actually raises my blood pressure above the normal level. I've had low renin and aldosterone before, and had an endocrinologist tell me there was nothing that can be done about at least one of those two (been a long time since I saw him). See private message for some info you may find of some interest re: renin and aldosterone in P.O.T.S. patients.
Since you are short of breath when the pulse rate is normal, then looking for other things that have not been ruled out is your next step. For example, how are your ferritin and iron levels as well as your red blood count? Breathing itself I believe is a part of the autonomic function, though I had not run across anyone else's mention of shortness of breath while lying down as one of their symptoms. What is your current diagnosis? Is it pure autonomic failure (PAF)? See PM for more on shortness of breath while lying down.
Regarding those discs bulging- is there one between the top criticial two cervical vertabrae of your spine?
Please don't miss post above, but had another thought: in the testing you received- did anyone do orthostatic blood pressures and pulses on you (lying down, standing up) including more than one with standing- like after the first minute or two, then after a few more minutes, etc.? If so, what were the results?
Thank you so much for the informative link you sent! :-)
My current "diagnosis" is just the Protein S Deficiency which lead to my blood's hypercoaguability but other than that, nothing could explain my symptoms because several of the doctors said those findings may have just been incidental.
I don't know whether the disc bulges are in the critical vertabrae but they are on the C4-5 and C5-6 levels. During my last CBC I had slight anemia but it could be because I had diarrhea at that time. I don't think tests were done for ferritin and iron levels.
3 days ago I visited another neuro to ask if I have dysautonomia and the only test he did for it was to ask me to sit upright, took my BP (110/70) and then ask me to stand up and took my BP again for a minute and a half (it stayed at 110/70). After that he concluded that I don't have dysautonomia because I don't have orthostatic hypotension. But he didn't bother to get my heart rate upon standing and aside from that he didn't compare my standing BP to a supine BP. I dont know if what he did was enough to conclude I don't have dysautonomia but from my 3 hour check up (I've been talking for a long time) he has come to the conclusion that I have anxiety disorder and prescribed meds for it.
It's hard to make people and doctors see that I have anxiety BECAUSE of what's happening to me and not being diagnosed, not the other way around.
Just a few questions: Do you feel the symptoms of POTS literally everyday with the same severity or are there some days when they are tolerable (meaning they are still there, not going away, but at least you have extra energy to go about)? Also, how long did it take for you to get diagnosed and how many doctors have you seen before you got diagnosed, if you don't mind me asking?
May I suggest since you had slight anemia you get as soon as possible another complete blood count, along with ferritin, iron saturation percentage, and iron levels? If you are anemic, this can cause fatigue and shortness of breath. One time I feel I had symptoms of the iron deficiency my lab testing revealed, even though my CBC was still within normal range. Since your CBC showed slight anemia, it may be a sign your iron is very depleted. The menstruating female, I was told by a doctor, commonly gets iron deficiency anemia. Please get tested as soon as possible.
You should take your pulse after laying for 10 minutes, then after standing for at least one minute or for two minutes. Tell me what you get? Your radial pulse can be felt by putting your pointer and middle fingers on your wrist below your thumb. Feel around until you feel the beat. Then look at a clock or watch with a second hand/second counter. Count the number of beats that happen in fifteen seconds and multiply that number by four to get your pulse. However, it does sound like at that point in time, your blood pressure was very stable, which is a good sign of orthostatic stability.
To try to answer your questions- some days, I notice my orthostatic intolerance being more severe than others, one in particular is when I've taken certain medications that can make the problem worse. Also, it is usually worst in the morning, when rising after sleeping, though it happens at various times and can be made worse by other things too. I was surprised how many hours (nearly every single one) my heart rate was going above 100 at some point during my last holtor monitor test.
One article said bascially it takes a lot more energy for someone with P.O.T.S. to stand up than the normal individual. There are days where I feel a little more energy than others. But I think too low energy is a symptom which ought to lead a person to making sure they are not iron deficient, don't have a thyroid problem, and thinking about whether or not you are getting proper rest, exercise (not exercising can make a person feel less stamina) and nutrition, as well as how much stress you are under (stress can make a person feel tired).
Getting diagnosed- well first, I was noticing my blood pressure was up, so I got blood pressure medicine. But I had problems with the medicine. At some point, it was noticed I was experiencing tachycardia. I was diagnosed initially with inappropriate sinus tachycardia (I.S.T.) by a primary care physician and I believe a cardiolgist as well. I was referred to an electrophysiologist (special type of cardiologist) to conduct a tilt table test. He was the one that diagnosed me. My primary care physician never really accepted the diagnosis, still thinking I had I.S.T.. The cardiologist I believe it was, referred me to get fitted for compression hose (which turned out to be a waste of money for myself), told me to eat lots of salt, to eat pizza. I went to another cardiologist trying to get more help later on, but left in tears with minimal advice, such as drink gatorade.
I encourage you to get your CBC, ferritin and a full iron panel of testing, because anemia seems like a strong possibility to me, since you tested slightly anemic with your last CBC.
Hi! I'm Rhia, 38 yrs. old, a mother of 2. After reading different forums about dysautonomia, I've found out that I am not alone in this world with this kind of weird condition. It's such a relief! Thanks to you! :-)
I have been experiencing what almost everybody is experiencing... Had bouts of fainting spells (or should I say faintedness...I just collapsed/fell down due to extreme weakness but I am not really that unconscious), almost everyday (sometimes especially when I am climbing the stairs or in place where there's not much air), had chronic fatigue syndrome (where even raising my arm needed a lot of energy, even opening my eyes or saying a word was energy draining for me), can't stand walking around the mall, a supermarket or even a bookstore (i feel dizzy in 30 mins or so, with accompanying nausea eventually), i was diagnosed with irritable bowel syndrome (often have gas, bloated feeling; sometimes have diarrhea in a day then constipated the following day), also experienced excessive sweating (you can literally squeeze my clothes and underwear and water will pour out), have been experiencing blurred vision, foggy brain (can't concentrate, poor cognition, slurred speech, can't find the right words to say), have numb feeling in one side of my body, have cold hands and feet, often times have rapid and pounding heartbeats (then will have red spots on my skin (chest and arms specifically, one time i had a very fast and strong heartbeat that I couldn't even count it and felt that my heart was about to explode!.. I just prayed... then everything was fine after a few minutes), had extreme pain that will just go away, and now , have elevated (or should i say HIGH) blood pressure since it has reached 190/125 already, but it's not consistent sometimes my BP is high and after a few minutes or few hours it's normal again... But I started taking maintenance meds since it's reaching 190 already. And there are lots more... These were the things that I have experienced and have been experiencing for the past 4-5 years.
Sadly, just like everybody else, I've also been to many doctors of all kind, and still with no definite diagnosis... Been through a lot of lab tests with normal results... And ended up being prescribed with meds for anxiety and panic attacks... And worst, being always referred to a psychiatrist. :-(
Had to do my own research to help myself since I've been staying in bed for almost a year due to dizziness/faintedness and extreme fatigue. I stopped seeing the doctors (haven't found someone who's sympathetic enough to diagnose what's really wrong with me) and have gone really tired of doing different lab work ups.
Symptoms will just come and go, they vary in severity, sometimes they last long and sometimes they are just there in minutes. It's crazy! Maybe that's why some doctors were telling me to see a psychiatrist, because the symptoms were not consistent... :-(
At present, I haven't been feeling dizzy that much, I rarely have fainting spells since I'm having a high blood pressure for the past 4 months.
I started having symptoms when I was taking my masteral degree in 2007. I was doing my research paper then (preliminary thesis). I haven't been having enough rest and sleep, until I had a viral infection/FLU that lasted for almost 3 months (on and off fever), I had low hemoglobin since I haven't been getting enough sleep so the doctor said that my body wasn't able to fight the infection and antibiotics couldn't help since it's a viral infection. She said that the simple FLU became a systemic viral infection. Took meds and vitamins to increase body resistance, I became well eventually, I had overcome the FLU, but I didn't regain my strength... and worst different symtoms came out... And so I had to stop attending my classes, I stopped studying, since I started fainting almost everyday and extreme fatigue started setting in...
At present, my cardiologist suggested that I do the tilt table test, but I'm not sure if it is still necessary since I'm no longer having bouts of faintedness and my BPis elevated. Or do I really have to do it?
Do my symptoms say that I have Dysautonomia? Can you suggest a test aside from the tilt table test?
Thank you so much for taking time to read my story... I'll really appreciate receiving a reply. God bless you and may you continue to be a blessing to many people like me. :-)
Yes oh my you totally describe MY symptoms. I was just diagnosed with POTS by my electrophysiologist. Autonomic Dysfunction is another name for it. I was initialy diagnosed years ago with SVT Sinoatrial ventricular tachicardia, my cardiologist had me see an EP for a cardiac eblation and the EP did the laying down, standing up bp pulse test and my pulse jumped from 85 to 120 and my bp dropped. Thank god he caught it because as of right now I do not need an ablation, I may have been mis diagnosed with SVT. He has me on Midodrine and florinef daily, I still have some symptoms but not as bad. You definately need to do the tilt test!
May I suggest you get this test if you have not already?
plasma free metanephrines, a fasting blood test for the inactive metabolites of the catecholamines, norepinephrine and epinephrine (nor-adrenaline and adrenaline) shortly after having one of your spikes in blood pressure episodes
With your spikes in blood pressure, rapid heart rate and profuse sweating, they should have run a test such as this reportedly very accurate one to rule out (or else set the doctors on the track of) a pheochromocytoma. This is a rare tumor, usually found on an adrenal gland (but rarely found elsewhere in the body) that can potentially have silent periods where catecholamines will be normal with episodic emitting of high levels of catecholamine(s). The inactive metabolite testing, plasma free metanephrines therefore is a preferred test for ruling out pheochromocytoma.
While you might not have that tumor, because of your symptoms I mentioned above, they should have done due diligence to rule it out, as it is extremely serious.
Secondly, did they also do an iron blood panel and put you on iron with vitamin C regarding your low hemoglobin? Iron deficiency anemia, which can cause low hemoglobin, can make you fatigued, dizzy, cause rapid heart rate, shortness of breath, numbness, tingling, etc. (See private message for more info.)
Stress can lower your resistance to viruses and cause you to be slow in getting well, and between your studies, lack of sleep, and likely other stress in your life, this may have contributed to your slow recovery from the flu.
I think I may have read before how some do have dysautonomia appear after a flu or surgery w/anesthesia.
You are unsure of getting a tilt table test, so may I recommend before you schedule the test, that you use/buy a Omron blood pressure monitor and conduct your 'poor man's tilt table' test at home. If you worst in the morning, do it then. Lay for at least 10 minutes in bed. Take your blood pressure and pulse. Stand up and wait AT LEAST a minute (my doctor wanted me to wait two to three minutes) to allow your body to normalize if it's going to. Then take your blood pressure and pulse again. If your pulse rate increases by more than 30 beats a minute, I recommend you make that call and schedule the official tilt table test.
Are you taking any medication for your blood pressure I hope since it is consistently high of late?
Hi. I am Kamil, 26 yo, female.
I had few episodes of syncope and actual fainting since I was in grade school. As I grew up, it became a little more rampant, specially when I am in a crowded place or place where there is little air. I've also been having constant headache and migraines. At first, I thought it was just because of stress. One time, there was a sharp pain at only one portion of my head and this urged me to have a check-up.
In addition to the symptoms I've already been experiencing - syncope, headache, migraine, palpitation, constipation/stomach ache (or what I think it is), tremors - I found out that I have irregular heartbeat and acid reflux. Now I am not sure if these are also symptoms of dysautonomia and I want to know if they are.
I will see a cardiologist next week but I want to have heads up and want to make myself aware of any possibilities.
I want to know if there is a way for the doctor to know if whether it is the malfunctioning of my heart that causes lack of oxygen in my brain perhaps, which could cause syncope or is it the malfunctioning of my brain that causes irregularities in my heart.
Any suggestion on tests to make or any advice would really be helpful and appreciated much.
Trying to discover the cause of the syncope (which is fainting) is your quest. Your question about the irregular heartbeat would definitely be something I would ask too.
Things that can cause fainting can include dysfunction of your autonomic system, the blood not circulating the way it's supposed to, blood pressure fluctuations and changes in heart rate, anemia, and abnormal metabolic conditions.
Palpitations, irritable bowel syndrome, migraine, etc. can be symptoms in people with dysautonomia.
I think you should see a neurologist about the tremors. Please see private message about various tests done on those with syncope.
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