valliali

I am definitely a hider. I don't tell anyone, and the few people who do know about it, I do anything possible to change the subject when it comes up. I think it's because I am aware that most people around me think illnesses like POTS and CFS and the like are bogus. I did too, honestly, before I myself got sick. The other day I was at a volunteer thing I do, and there is a girl there who has been sick for awhile. No one really knows what is going on with her, and one of the DOCTORS I was volunteering with said, "It must be Chronic fatigue syndrome or one of those things. You know, the illnesses that give you an excuse for everything." I found that I was so personally offended, but realized she didn't know any better because I look and can seem very healthy and normal. But I know that is the prevailing attitude most people have, especially where I live. I think that telling people about my illness makes me weak and I end up feeling very, very ashamed. This is not healthy for me because then I am stuck lying and trying to cover up, so someday I would love to live in a nice, small town where people get to know and understand others in their community. Perhaps, as a city girl who knows no better, this is just an unrealistic dream!

I know this discussion has been brought up before so I hope it is not inappropriate for me to bring up a post about drinking alcoholic beverages. But I am of age, and I love dark beers. Sometimes I don't tolerate alcohol at all, but when I feel pretty up for it, I indulge in a couple of my favorite beers.

I know that many dark beers, like porters and stouts, contain some coffee and chocolate. I cannot quite figure out how much caffeine is in the beers, but I know the FDA recently took an interest in the topic because of the combination of alcohol and caffeine. So there must be some.

I have found, since becoming sick, that I cannot tolerate caffeine at all, not even in the smallest amounts. I actually can't really handle anything that triggers any sort of stimulation. However, I have never really noticed a problem after drinking dark beer. I am wondering if the caffeine in the beer is so minimal that even my norepinephrine sensitive body cannot really detect it, or if there is something about the combination.

anyways, I'm just kind of curious if any of the beer lovers on here know roughly how much caffeine is in a dark beer, and if you are affected by it.

If this thread is inappropriate due to potential minors on the forum, by all means take it down!

Also a veg! I definitely support the call for a multi-vit and B vitamins. B12 is especially important for vegetarians.

I also work full time, but like others, work for a university system so I have generous time-off. I'm also a student, and will be applying to veterinary school next fall, which absolutely petrifies me because I have no idea how I will survive it. But I always swore to myself that as long as my two feet were working, I was going to do it. And they are still able to get me up and out everyday. I don't think I will ever learn how to balance. Sometimes I wonder if I had just taken it easy on myself when I first became sick if I would be better now, or would have prevented this illness from spinning out of control. I have gradually improved over the last year, but I am sure I ran myself into the ground along the way.

I used to live in the mountains of Wyoming and worked for an outdoor outfitter company. I led all kinds of backpacking and mountain climbing excursions. Oh, those are the days I would kill for. Elevation was one of my first indications something was wrong too. I went hiking in the mountains and was in really, really good shape, yet my heart was pounding out of my chest and I couldn't breathe. I find that elevation affects me greatly. However, on the same note, I do absolutely best in the driest climate possible, which is usually higher elevations. so when I adjust to an elevation, I actually end up feeling really well. I think around 7,000 is good for me. I did just do a drive across Nevada in which case we stopped at a 12,000ft mountain. We went up and down in a day and I definitely felt it. I am flying in two weeks and am SEVERELY nervous as the sudden changes in pressure/elevation really do me in.

I am on propranolol as well, and like others have said, I take a very small dose. Because my heart rate was so high, my doctor prescribed 60mg, still a "normal" dose. I felt horrible on 60mg, but do really great on 5-10 mg every four hours. I believe that propranolol has been my life-saver. I too have had HORRID reactions to other drugs and also have a phobia of taking new ones. At this point, I pretty much don't at all take new drugs, not even antibiotics. But propranolol turned my life around. I have been improving ever since the day I took it.

Flushing was actually my first symptom. I went one day from never having turned red in my whole life to suddenly turning beet red and burning for hours. It was so bad for the first year that I had all these broken blood vessels on my face, which fortunately are much improved. At first, my flushing was strongly connected to anxiety - talking to people, going to doctors, etc - as well as cold to warm. Then, the flushing was really only when my body temp was low, then I became warm, in which case my body temp shot up and I flushed and turned really red for many, many hours. Now, three years later, I am much improved since those days and my flushing is mitigated quite a bit. When I am cold and then take a warm shower or spend time in a warm room, I will notice my face turn a bit red and it feels quite hot, but it's nothing compared to the first year.

I went to a prime rosacea specialist, certain that I had rosacea, and he pretty much laughed me out of his office. He is the only doctor to have made me cry. He told me it was ridiculous that I thought I had rosacea when it's so obviously an autonomic problem. I didn't think it was that ridiculous of a thought considering rosacea is really the only condition that describes bright red burning flushing that can last for ten plus hours, but I guess he assured me that this isn't what I have and it does have to do with a whacky ANS.

I find the flushing to probably be my worst symptom. Maybe because I am just a bit more conscious about my appearance, but I would honestly rank the benign flushing as worse than the crazy heart rates and palpitations.

I sure am! Have had some really bad experiences from flying. Triggers the PSVT, which then triggers major panic (though I believe the PSVT in itself causes the panic-like feelings and they are MAJOR)... I know there was another thread about this not long ago.

My flying PSVTs were triggered only by the ascent and descent. I actually felt gloriously well up in the air. But the heart episodes were enough to do some serious fear damage. I used to fly ALL the time and love it because it always meant I was going somewhere really exciting. I haven't flown since a couple of years ago when all this happened, but I have to in a month.

On top of it, I am having a lot of issues with eustachian tube dysfunction. I cannot take decongestants, which is the only encouraged method for people when flying. I've heard it is highly unadvised to fly with eustachian tube problems. I don't have them unless I am congested, so I can book my tickets now while my ears feel okay, but what if I wake the day I have to fly and my ears are all clogged up?

So terrified. I need to go cross-country too, so it's not like the train is exactly an easy option! I would end up missing four days of work JUST for the train!!!

Oh, I'm also wondering if anyone with these symptoms also has gastritis? those symptoms describe how I feel a lot, except for the tightness in my chest/inability to get in a full breath. I have no belching/burping, it doesn't seem to be gas, so I really think something is going. I had an abdominal ultrasound awhile ago - does anyone know if a hiatal hernia would have appeared? Also, can the symptoms of a hiatal hernia be so episodic? Aren't hiatal hernias really controversial?

I could have written your post myself! Same EXACT thing. Lots of pressure in the upper abdomen, feel like cannot get a full breath of air, major bloating, which is made immediately worse when standing upright... mine, too, is very episodic. I can go months without having an episode, in which case I eat all the gluten in the world and don't feel badly from it at all. I also tested negative. And then it'll be out of nowhere I'll be hit with a period of these pressure issues in the upper abdomen. I often tell my boyfriend that it feels like my diaphragm isn't working right, and I find that if I push really hard on the area of pressure, I get so much relief. It's the only way I'll get in full breaths of air. Sometimes when I'm out I have to find a counter or something to lean on so I can squeeze my stomach and be able to breathe. It's horrible!!!!!!!!!!! These episodes usually last me a couple of weeks, but sometimes have lasted longer. I totally feel you.

It's really funny that you mentioned that probiotics make you worse, because I kid you not, it was all but one month ago that I started taking probiotics and had another one of these upper abdominal flares. I find NOTHING on the internet that even alludes to probiotics having any side effects, but before the pressure and bloating, I started having a lot of nausea and diarrhea, which is super uncommon for me. This was four or five days after taking a probiotic pearl. Then came the massive upper abdominal issues; I swear it was the probiotics, it was the only thing that changed. Sure enough, as soon as I stopped, so did the diarrhea and nausea, but unfortunately the abdominal issues persisted.

How do you know that probiotics make you worse?

Interesting thread! I thought I was alone!

I too get very tachy after eating, especially a big meal, and will get palpitations. I do believe it is related to blood being diverted to the stomach for digestion, though I have also heard it may stimulate the vagus nerve, which heavily influences our heart beats. Plus, digestion just makes the body work a bit harder, and my body always gets tachy when it has to work a little bit!

Oh my gosh, I had the SAME exact thing happen to me when I flew over a year ago, and I posted about it on the dysautonomia boards forever and while it definitely seems that everyone has their own unique reactions to flying, I hadn't heard of anyone else having issues with SVTs during flying. Mine were PSVTs and they were also triggered only during the descent the first time, and then the ascent the second time. It was HORRIBLE. I couldn't break mine, and my PSVTs cause extreme panic and heart pounding. They are very very symptomatic and then to be trapped in the plane, oh my, it was my worst nightmare. I haven't flown since, and I honestly can't say that I will until this is controlled. It is very disheartening because my family is on the east coast (I'm on the west) and one of my parents is ill so I would love nothing more than to be able to fly home. But my experience was that bad. I am on propranolol now, which I wasn't at the time (though I was on metropolol and had sucked them down like candy during the flights when I realized I was going to have serious heart problems). The propranolol seems more effective for me so I have wondered if my heart could handle it. But I am so sensitive to pressures and I can feel the pressures in my body get really out of whack when the outside pressure is low (major head whooshing, blood whooshing in ears, neck fullness, etc).

thankful, that does sound exactly like what i have!!! how long does your flushing last? do you find that anything helps??? oddly enough for me, i find that sleeping will break one of my flushes. while they usually last like ten hours, if i were to sleep for even 15 minutes, a flush would be nearly gone. i assume that sleeping "resets" whatever system is off.

Very interesting thoughts, Erik. I mean, for me, it sure feels like my body is over-doing the warming process! I know that many rosaceans suffer from the same exact thing I am feeling - the hours long redness and burning in the face - from going from cold to warm. But I think the flushing with rosacea is a result from a blood vessel disorder in which they remain overdilated for abnormally long. Hence the reason most rosaceans also seem to experience the same kind of flushing in response to many things that trigger vasodilation, like warm foods, exercise, a hot day, etc etc. I do not flush in any other situation, and I also don't suspect that my issue is merely a blood vessel one since my body temperature shoots up and remains up for the entire flushing time (sometimes ten hours!). I have also noticed that in the warmer months, my body temp is almost always around 98-98.6. So my body doesn't really get "warmer." In the winter, my body temp is around 96.5, and like I said, when I get warmer, it shoots up to around 100.

I did visit a dermatologist, who mocked me out of his office for even suspecting that I had rosacea and continuously pointing out that "of course it's an autonomic problem." He didn't explain why - of course not. I think your theory sounds like what I'm feeling. However, what role do you think the propranolol has in helping? Because the propranolol reduces blood flow to extremities?

Thanks for your insights, Erik! It has been a very distressing symptom for me, though it is not necessarily the most physically threatening or uncomfortable. I just have to wonder why, if this is a "clear autonomic problem" like my derm said, I haven't read of anyone else with this same issue. I have read a lot of about others flushing, but mine doesn't sound anything like the more common flushing seen with autonomic issues - like in response to mast cells....

Does anyone else have flushing problems when it becomes cold??

Mine are a lot like rosacea. When I am cold for a prolonged time (like an hour), and then become warmer (like go inside), my face gets red and really, really hot and this lasts for hours and hours. The flushing was one of my first and more severe symptoms. I never ever turned red before getting sick.

The weird part is that I don't flush at all until the weather turns colder. I live in Northern CA, so I get about six months of absolutely no flushing, nothing can trigger it. But when it's cold, I just dread everyday. I find that when I flush, my body temperature will go from like 96 to near 100 within minutes. It will stay that high for my whole flush. Does anyone else have this?

propranolol has helped it a lot, but I hate taking propranolol in the winter because it makes me soooooooo much more tired and enhances all my pressures when it's cloudy and grey.

I honestly think your best bet is Stanford. I have seen Dr. Friday, and I see Dr. Montoya as well. I have seen many docs at Stanford, but those were my main. I definitely felt like I was able to get in to see docs quickly if they felt it was important for me to do so. Dr. Montoya is one of the busiest doctors in the world I think, but he always squeezed me in his schedule, and made many exceptions to see me, because he believed it necessary. I don't have an appt with him until Jan this time around, because there isn't as much he can do for me. The doctors at Stanfrod, from my experience in CA, are the best you'll find in this area.

Will the sleep study be able to indicate whether or not you have PH? I have heard that the PH tests are very invasive - have you had your PA pressure measured on an echo?

I do not get a cough, at all. Today, I woke up, feeling good. No shortness of breath. Biked down the road to work, chest tightness. I just feel like it is so difficult for me to get in enough oxygen, yet my capillary refill and mucous membranes all seem normal. I also have faint chest pain. When my chest gets tight, I also notice significant tachy, and way, way more palpitations. I'm having the "runs" of palpitations again, which I haven't had for at least a year thanks to propranolol. I don't know why this is connected.

This is similar to how I felt living on the east, though the east was much, much worse. But I find it unbearable. My joints actually weren't that inflammed or stiff this morning, so I am hoping this thing is on its way out, whatever it is. I don't actually feel sick or anything, so I have no reason to suspect a cold or virus. My body temp is around 97, as usual.

I'm sucking down Ibuprofen like candy, which is the only thing that seems to offer some kind of relief, though not as much as I'd like to feel comfortable.

Is anyone familiar with any problems of the diaphragm? Is it possible for it to become inflamed? Or out-of-position? It seems strange that when I push on my upper abdomen, I feel a lot more comfortable breathing. Is that just normal?

sorry you guys also experience this. It's awful. This chest tightness diminishes quality of life immensely!

tammy, could that be a result of asthma? i notice you're on atenolol too - does it worsen the sob?

interesting, thanks guys. erik, have you ruled out pulmonary hypertension? i thought of it when you said that you had coughed blood before. it's rare and unlikely, but just wondering...

i will definitely have to consider some of these tests, especially one where they can induce the asthma. like i said, i am very frustrated with scheduling appointments when i'm symptomatic, then being fine when i am not and wasting a lot of money.

interestingly, today, i felt pretty okay with the chest tightness, like far, far better than yesterday. but then, shortly after i began driving somewhere with the windows down, it was like immediate chest tightness. i could actually feel it all inflamming/tightenting up. it was like my throat was closing and then i was just getting the 1/2 breaths. it lasted the whole hour or two i was out, then i came home, took an ibuprofen, and now feel a lot better. so it seems like something outside might be triggering this, but the pollen count is all low today. and the fact that the chest tightness comes and goes in these waves every six months is just strange. if it was a pulmonary problem, like asthma, wouldn't it be more chronic than episodic?

another thing is that about a year ago, i moved from my home in CA to my parent's home in Maryland, where i was planning to stay and help with my father's illness. when i left CA, i felt great. like almost normal. i drove cross-country, and as soon as i got out of the car in arkansas, i felt like i couldn't breathe. in fact, i couldn't. my lips were blue and i was just horridly short of breath. unfortunately, this symptom did not really let up the whole time i was on the east coast. it was especially bad on cloudy/rainy days. i felt like i was just constantly gasping for air, and i'd be pale and blue. i also had some other crazy symptoms (lots of tachy, immense pressure and whooshing in my head and ears at unbearable levels), but i wonder if, as erik said, my CO2 sensors were just whacky as a result of the high humidity and low pressure. actually come to think of it, the six weeks i somehow survived in maryland were probably the only times i remember actually feeling "POTS-y." i couldn't stand, as my heart would just race. it raced the whole time i was there, but i remember that laying or sitting felt much more comfortable. on the low pressure days, i couldn't stand. on days that were clear and sunny, i was okay. weird.

wow, you guys are amazing. here you are with your own issues and questions, but taking all this time to help me with mine. thank you so much.

erik, you ask a lot of good questions! i have been ruled out for almost everything that would be a "differential" diagnosis for POTS. like thyroid issues (i have had extensive thyroid tests, all super normal), pheo, other neuroendocrine problems, lupus, and all kinds of viruses and bacteria (mycoplasma, all the herpes, etc etc). the only unusual test that i did have was not long ago, and it was an epstein barr. it was the VCA test, and it was outrageously high. every other time i had it taken (which was like three times before), it had been normal. however, the early antigen test, which is usually used to detect chronic EBV, was normal. my infectious disease doc, who is like the leading EBV guru, said he had not seen anything like that but that he didn't necessarily think i have chronic EBV. plus, i lack many of the symptoms, like fatigue, sore throat, etc. i agree that i don't sound much like an EBV patient, but that one test was wayyyyyyyyyyy off the charts. i wonder if whatever else is going on caused that.

as for family history, i don't think i could have a healthier family. although, my father does have early onset alzheimer's disease (he was like 53 when diagnosed), so i constantly wonder if that could be tied in. he believes that his grandfather had it as well. but, it seems like with all the cases of alzheimer's, there'd be more stories of patients like me with some kind of connection. as for everyone else in the fam, no heart problems at all. my like 90 year old grandmother has a-fib, which she just developed, and that's it for the heart. no sudden deaths, nothing. the women in my family live to be like 100. crazy, huh?

the "clinical" call about my POTS is just strange. i mean, i don't even think the cardio even really knew what he was doing. to tell me that he's "never" before seen a sudden increase in sinus tachycardia is just wrong -- because it's not possible.

erik, thank you so much for your very thorough response. i greatly appreciate it.

tammy, interesting that you had a negative tilt. did they give you isuprel? is your increase in hr only once-in-awhile like mine, or is it fairly consistent? like when you are at home, what are the odds that you would be able to detect it? for me, the odds are super slim. in fact, i have never detected an increase of 30bpm or more, even when it feels like my heart is racing when i stand up, which is still very rare. like i am 100% sure that if i had performed a tilt a hundred times today, not one of them would have been positive. what does your doc say about the swollen lymph nodes????? mine come and go. some days i can't feel them at all, then others they feel like golf balls. i've had doctors feel my glands and tell me that it's in my head that i think they're swollen, then i'll see them again and they're like wheeling me into the biopsy room because they're enlarged. do yours fluctuate like this?

rama, i definitely think i have IST. i have not officially been diagnosed with it, but i'm sure i would if i saw an appropriate cardio. my heart takes off with very minimal stimulation. my heart responds super well to beta blockers. like just 5mg of propranolol, which most of my doctors insist would never make a difference, is enough to tame my heart. my heart rate used to get up to 220 during exercise, now, with a beta blocker, it's at 160. i also think that i have a sensitivity to norepinephrine... or i am not metabolizing it... my reaction to effexor, caffeine are big clues. i can't even drink decaf without my heart racing. however, the only issue that i have is that IST still doesn't explain so many symptoms. the immense head pressure, swollen glands, low body temp, arthritis, i could go on and on.

overall, i just feel like i am at a dead end. i have been going to stanford for a year now and have seen a huge team of docs, who have each run long panels of tests, and still, nothing. the best i got was a "post-cfs-like syndrome." i just keep thinking that their could be this huge african worm in me or parasite or god knows what and i'll just never find it because all my docs think i'm too complicated. when i reread some of my medical records, especially the transcripts between some of my doctors, i have noticed that many of them rave about what an interesting and exciting patient i am. so they dive into all these tests, but when nothing comes up, they're just done with me. i'm no longer interesting and exciting, just ego-deflating and frustrating.

i think i might have to suck it up and see a llmd soon. i have such conflicting thoughts about lyme, and i feel confidently that i could receive a clinical diagnosis. i did test for lyme thru igenex, the "lyme lab" and it came out quite negative. so i am very hesitant, but also desperate.

anyways, thank you all very, very much.

i used to get those episodes often. my first symptom was definitely that of an overactive sympathetic nervous system. i was hot, flushed, sweaty and just jittery all the time. like i was constantly on an IV of coffee. i also suffered from serious panic attacks, and very often. i am on a beta blocker, and it has helped calm my SNS so much. i very rarely get panic attacks, or those sudden hot and flushy feelings.

Hi guys, thanks so much for all the responses!!!

I have had many poor man's tests - none showed a 30bpm increase in hr. Most of the time, it's around 10-15. The cardio who did my tilt really knows nothing about dysautonomia. In fact, my diagnosis is stated like such, "patient had a sudden episode of sinus tachycardia with heart rates abruptly increasing from 120 to 170. episode lasted 3-4 minutes with symptoms of forceful heart rate and panic. this is a most unusual response, one which i have never seen. this indicates some degree of autonomic dysfunction, likely POTS as it is the most common in young women." that is my diagnosis.

so then i visited a POTS specialist, who is very highly regarded, even on this forum. she of course immediately did the poor man's tilt (i was advised not to take beta blockers two days prior to visiting her), and she measured my heart rate from lying down to standing, and from sitting to standing. in both instances, my heart rate did not increase 30bpm. she said that it increased around 20bpm, which might be a little faster than normal, but she also remarked that my heart rate slowed down really quickly upon standing. she has done this a few times, all normal. i also had a norepinephrine test from laying down to standing, also normal. the POTS specialist thought my symptoms sounded like lupus (which has been totally ruled out) or a virus (i got sick right after living in africa, and it seems most of my doctors agree that i have some kind of post-viral syndrome, whatever that means).

it is definitely clear to me that my autonomic nervous system is haywire, but i seriously doubt the POTS diagnosis. it just seems to have stuck b/c doctors don't know how else to explain a sudden ANS dysfunction out of the blue. from what i have read, a sudden onset of sinus tachycardia pretty much doesn't happen. there is a really rare arrythmia in which the EKG looks exactly like sinus tachy, but it is a sudden onset. or there is a PSVT, which when i read the symptoms, sounds EXACTLY like what i have. exactly. i just don't understand how a cardio, and a well regarded one in this area, can watch a PSVT on a monitor for four minutes and miss it. i have read that they look similar to sinus tachycardia, but still, four minutes and he missed it? i just don't know, i have so many uncertainties.

beta blockers are the only treatment that have worked for me. tried a snri, which basically sent me into a seven hour severe panic attack (majorly rapid heart rate, high blood pressure, diarrhea, felt like i was going insane). and that was just on the starting dose! i definitely have a norepinephrine sensitivity going on. interestingly, one of my tests awhile ago, a 24 hour urine test, showed that my normetanephrines and metanephrines, the metabolites of NE and epi, were very very low. this would indicate that i am not metabolizing the NE and epi. makes sense to me. but no doctor can explain those values and what it means. none. but, while a sensitivity/overreaction to NE/epi explains a lot of my symptoms, there are others that it just doesn't. like joint swelling and neck stiffness.

i'm just so frustrated with doctors not wanting to look at my whole picture. i went from a serious collegiate athlete to having all these problems, and it seems like with no warning, no trigger. would a genetic autoimmune problem come out of nowhere like this? my most recent diagnosis, from a CFS specialist, again very highly regarded, is a 'POTS-CFS-like syndrome." He says I don't have POTS and I don't have CFS, but I have a lot of symptoms of both. What in the world does that mean?!?!?!

Sorry, I am totally ranting. Thanks for allowing me to, and for listening!!!

Thanks so much, Rama. I actually can't open those publications on my computer, so I'll have to wait until I go to work, where I will have access. So I might get back to you in a day or two with some questions:)

Through the course of my illness, I have found that I get these episodes of constant chest tightness, where I feel that I am only able to get a half breath and I become short of breath very easily, like even upon trying to complete a sentence. The weird thing is that these episodes come on suddenly and for no real apparent reason, last a couple of weeks, then just disappear and don't return for months.

I have found that for about the last week, my finger joints have been swelling up and are very stiff and curled in again, although this hasn't happened for over a year. It was a couple days ago that my chest became very, very tight.

I took an NSAID last night to help with the joint stiffness but found that it also seemed to help my chest tightness. It is no cure, but I felt like I could probably breathe 3/4 of the way instead.

Does anyone else have anything like this? This would point to some kind of inflammation. I was thinking COPD or asthma, but it seems strange that it comes in these random episodes and then won't return for like six or so months.

It's horribly uncomfortable. Like if I didn't know that it would go away in a couple of weeks, I really don't know that I could live with this constant sensation of on the verge suffocation. Though I know I am getting enough oxygen (pink mucous membranes), it feels like I am just slowly suffocating.

I know that I need to see a pulmonologist, but the tightness/SOB is so unpredictable and sporadic it's been hard to schedule a time that I am symptomatic. I have had to cancel two or three previous appts with one b/c my symptoms disappeared by the time I was able to get an appt. I have also gone to the ER for the chest tightness, where they did an XRay and EKG and told me I was fine.

Hi yogini-

I have done the poor man's test many, many, many times, both with and without my heart rate monitor. My cardio has also done it. Never once has my hr increased more than 30. In fact, almost all of the time it increased about 5 or 10 bpm. My blood pressure does not drop. I have even done it the times that I feel like it races when I stand up, but my heart rate usually goes down to a more normal level by the time I can even count. So, by the time I count the 15 seconds, it's already gone down enough that it's not even close to 30bpm higher than what it was when I was sitting. Do people with POTS tend to find that the heart rate keeps going fast after standing, or can it really quickly resume to a more normal rate?