TexasGrrl

Merrill, When I had an MRI of the head and neck a year or so ago to rule out Chiari, it revealed a bulging disc at C5/6 and reverse curvature. Nobody ever told me how the reverse curvature came about or what the implications were. The only thing I found out about the disc is that it's probably what causes my arms to go to sleep at night. Have your docs told you what the reverse curvature is due to? Any idea if it impacts your POTS or anything else? I researched it, but didn't find much on it except that often it was due to poor posture...

Unfortunately, being told we need psychiatric evaluation is all too common with POTS. Docs just assume that if they, the all-knowing gods, can't see why there's a problem, that it MUST be all in our heads... that we are craving attention... that we are simply anxious or some such other malady. While I know that hypochondriacs abound, especially in this age of information, the average person would actually prefer to be fully functional and not poked with needles and sent through radiation over and over again just to get a little attention. It's something that I think the average doc overlooks because they experiences with the hypochondriacs stick in their heads more. And because POTS isn't a well-known syndrome, the experience is awfully common. CFS research paved a lot of the way for us, since POTS is such a huge part of that, so hopefully more docs will recognize orthostatic symptoms as physical, not mental or emotional. What gets me is the fact that many of us have searched for answers for over a decade. What hypochondriac holds on to the same set of symptoms for that long?!

Hi persephone, I agree with the others, it does sound like a classic POTS response, although on the more severe side than the average POTS person. I spent 13 years searching for a diagnosis and saw a total of 16 doctors, at least 8 of whom were cardiologists. Most cardiologists don't have a clue, and all but two told me that my heart was perfectly normal despite seeing heart rates over 150 on paper during ECGs, stress tests, EKGs, and holter and event monitors. Sinus tachycardia, they said.. and they claimed it was stress, or emotional problems, and that I needed to see a psychiatrist. It is quite likely, if your cardiologists know nothing about POTS, that you will get a similar response from them. The only two cardios I saw who saw my HR problems as a manifestation of POTS were Dr. Grubb himself and a local physician who was something of a disciple of Dr. Grubb's. The shaky, clammy, frightened feeling you had is also typical. Your autonomic system was fully engaged in the fight or flight response, and all of those symptoms accompany this. When your heart rate is that high, it IS scary, no doubt about it, but a heart attack isn't likely. Heart attacks happen because blood flow to your heart muscle is blocked, causing part of it to die. In your case, your heart is just beating too fast. While scary, it really isn't dangerous and certainly isn't going to bring on a heart attack. Exercise intolerance is extremely common in POTS sufferers, and it is likely that you will have to prepare for exercise by drinking lots of electrolyte-loaded fluids and probably salt, prior to exercising. When you do start exercising, start slowly. At first, don't walk on a grade, and keep it to 4 mph or less. Do it for 5-10 minutes at first, and if your heart rate gets out of control, take a break. When you start noticing that your heart rate stays under control for the whole time - even if it's in the 150s or so, then you can speed up, and slowly add a grade to the treadmill. After a while, you WILL be able to exercise, but you have to build up your body's tolerance to it first. If HR is your primary complaint and BP isn't much of a problem, then beta blockers may be your doctor's first approach. Beta blockers will lower your blood pressure a bit, but they will slow your pulse a lot. That's my primary complaint, and believe me, it's a lot better than without! Beta blockers took my average heart rate from around 120-140 down to about 100. Try not to be scared - that only makes your heart beat faster. Understand what's going on and take steps to make yourself feel better by preparing for exercise, and you'll be OK... You'll also need to educate yourself extensively, because your doctors will probably need education. Even if they don't, you need to understand what your body's doing. Hope this helps... Janet

Thanks for all the info, folks.. I had to see my GP today and mentioned the headaches.. after a bit of discussion and my revelation to him about having a positive Rhomberg's sign, he recommended I see a local neuro (oh great!) who is also a headache specialist. I told him most of the neuros around here are flakes (last time I called several when I was hunting down my POTS issues, and they didn't know what the autonomic system was.. sheesh)... he sort of nodded like he knew what I was talking about and told me about the one he wants to refer me to. He said if this guy doesn't get it, then our only other option is going to Houston - a 2-hour drive away. Ugh, I don't want to go to Houston, so if this guy doesn't have something good to offer me, I'll just stick with the butalbital for the forseeable future. I read an article yesterday about a women who was having terrible headaches and losing her balance and she ended up having some sort of tangled cluster of blood vessels in her brain that they did surgery on, so that sort of prompted me not to ignore this as much as I have been. I have had an MRI of the neck and head, but it was primarily to rule out Chiari, and I don't know if they looked for anything else.

No, he's been diagnosed, but sometimes the ER docs don't listen. We would know anything about that here, would we? lol

Not too bad. When I lost that weight, I had to lower my dose due to wooziness, and now I can take it on an empty stomach, no prob. I wonder what I have to do to get an official dx of migraines from my new GP? (My old one retired last summer.) He wanted to send me to a neuro for yet another MRI of the head and neck.. ugh... no thanks. Nina, do you think occipital-region headaches might have anything to do with a positive Rhomberg's sign? My GP did confirm that, but is clueless as to what it might mean for me. Just wondered, since the cerebellum is right there...

Nina - sorry to hear you're still having trouble with that. Sinuses and all else going ok for now?? Yep, I'm glad I live in the South, but it's still pretty chilly for us sun bunnies down here. We've frozen for four straight days, and that's odd for us. I actually had to wear a sweater today Oh - and Nina, I bought *gasp* a POLAR FLEECE cape for this winter. You'd be so proud! :-) You guys - I didn't know what polar fleece was until our dear mouseketeer educated my simple Texan brain ;-)

Hi y'all, Just wondered how many people have migraines here and what they have done or are doing to try to control them. I started having bad headaches 2 1/2 years ago. They aren't the typical aura-preceded migraine (I've had a few of those before). They start on the left side of my head behind my ear, then go down my neck, around the back of my head to the other side. It's more of a burning pain than a tightness. They come on very slowly and take about 4-5 hours to reach full strength. When they do reach full strength, I am light and sound sensitive, my head pounds, it hurts worse when I bend over, and I also get deep stabbing pains similar to cluster headaches. They have lasted as long as 36 hours. Sometimes they respond to sleep, but not always, and I can go to sleep without one and wakeup with one full-blown. After several of these, I went to my GP, who prescribed Butalbital for them. It works great as an abortive, but now I'm a bit concerned about rebound headaches being a problem. Three months after I started on Butalbital, I started having them every day, sometimes twice a day. Ever since then, I've had them on a chronic basis, more than 15 days of the month. Occasionally I will go a few weeks without one. My GP diagnosed them as tension headaches, but I'm pretty sure that's not the case, or if it is, that's not the whole story. I discovered there was some sort of vascular component when I bent down and the headache got worse. On a hunch, before I had the Butalbital, I tried Midodrine to see if it would work, and it helped a great deal, although it didn't cure it completely. Since that's just a vasoconstrictor, that confirmed to me that it is, at least in part, vascular in nature. After all this sorting out of the POTS, I'm not all that keen on going to a headache specialist or yet another clueless neuro, but I wonder if I'm just making myself more miserable by continuing to use Butalbital, which is supposedly one of the worst for provoking rebound headaches. Any thoughts on this? Is it really worth going to a headache specialist? As long as I have my Butalbital, I can deal with the headaches, but it sure would be nice not to have them at all.

DH's episodes are quite more than a fluttering feeling. He gets cold and clammy, pale, short of breath and his chest hurts. Sometimes even his right arm hurts. For him, it has all the symptoms of a heart attack but his enzymes are always negative. He usually has pretty elevated BP during an episode, too. A few times, it scared me enough to go to the ER with him, and the ER docs write it off as chest wall spasms because by the time we get to the ER, it's usually been 10 minutes or so and the HR is down quite a bit but his BP is still high.

Sooo good to hear from all of you again! Thanks for the welcome from all those whom I have not met before - and good luck with your continued search. Nina - I read something that indicated you were trying to get feeling back in your hand. So what gives? Are you plying new surgeons with wine just to get back into surgery? I know how much you love the ambiance in the OR. Give your inhouse medical staff a hug from me, too. Dan, great to see ya! How's the throat action? Geneva - yes, I remember you! How's your treatment going?

Gayle, I know this is an old post, but my husband has PSVT and thought I'd respond. Overall, no, this isn't dangerous. Scary? Yes, but dangerous, probably not. He has had several episodes over his lifetime of heart rates well over 200. Once, during an episode, a co-worker rushed him to the ER, where they stopped and restarted his heart -- sort of rebooting it. The ER docs dont' like seeing heart rates that high, but unless it's REALLY prolonged - like for several hours, which it usually isn't - it's not a major problem. The only worry with it lasting a long time is that it might wear out the heart muscle. The issue is simply one of an electrical pathway problem. Sometimes it short circuits and starts beating too fast and can't stop for a while. His docs gave him a few tricks to stop an episode, and they seem to work quite well. Trick #1: Splash your face with very cold ice water. This triggers the diving reflex and tends to reboot your heart on its own. Trick #2: Try the Valsalva maneuver: Holding your breath, bear down as if you are trying to pass a difficult bowel movement. Hold for 10-20 seconds, and then let go. You will be very lightheaded afterward -- warning! So do this while seated. His episodes have never lasted longer than 15-20 minutes. If you just bear all of this in mind next time you have an episode, you should be just fine. Good luck! Janet

Hi everyone... I'm sorry I've been away soooo long! Actually I guess I'm new to dinet.org and I'm a carryover from NDRF... Some of you oldtimers will know me, anyway.. *winks to Nina* It's been an insane year or two, and finally with some answers to my POTS questions, it hasn't been much of a priority to keep posting... Sorry!! For those of you who don't know me or haven't heard, Dr. Grubb dx'd me with EDS III in Feb. of 2003. He prescribed Catapres (Clonidine) to help control the tachy along with the usual high-salt, lots-of-liquids diet. I try not to be on Catapres all the time, but when my symptoms get intolerable again, I do go back on it for a few months until environmental factors (heat and stress) back off enough that I can be comfortable without it. For the most part, my symptoms are tolerable, made more so by the understanding of what causes them and the knowledge that I am, in fact, NOT crazy or just an attention-seeker. As with most of us, I have several other "weird and rare" illnesses that crop up under stress. I have hidradenitis suppuritiva, and have been having what are probably migraines on a chronic basis for 2 1/2 years. The H-S is rare and, of course, incurable. Migraines aren't rare, but these aren't classic migraines and from what I can gather are actually 2 to 3 different types of headaches that occur simultaneously. After spending what seems like half my life in search of answers to the POTS question, I'm not all that crazy about tracking down answers to the other problems at this point. Anyway, wanted to offer a bit of encouragement to those of you who are still looking for your answers - and a word of prayer for Dr. Grubb, who at long last granted me peace of mind and a tool to manage my POTS. Hugs to all I have missed for so long... hope you all are doing well. Janet