mkoven

I get this too. My pec muscles, esp pec minor are all knotted up. I wonder if it's sort of like coat hanger pain--our organs are stealing all the blood, so neighboring muscles are deprived. I initially thought it was angina. It is worse when the ans stuff is worse. it has responded somewhat though to deep tissue massage. but it feels like its proximity to the heart is no accident, even if in the end it's muscle/myofascial.

Not sure when "older" starts. I"m 42, diagnosed at 39. I"m convinced perimenopausal hormones have brought this out, on top of my ehlers-danlos, which also did not get diagnosed till roughly the same time. Started with the occasional symptoms of presyncope, as early as age 35. I officially have pots and oh, but my hr doesn't really get that high on a daily basis. I'm much better on meds and after some cardiac rehab. I try not to project into the future--just try to get myself as healthy and functional as I can in the now.

I'm all for being realistic, but I also know that I'm someone who has to believe that the future is unknown. between eds and ans issues I've had awful stretches, and then significant improvement. i get myself into a bad place when i imagine a bleak future. that doesn't mean denial. that means doing the best i can to creatively problem solve. overall, i'm doing much better than a year ago. jointwise, i'm doing better than five years ago. i was told, with eds, that all my loose joints would degenerate fast beyond repair. just had an mri on my chornically subluxing hips and STILL no arthritis after years of slippage. I have to live within my current limitations and capabilities, take as good care of myself as I can, and know that i'm very bad at predicting the future. and i don't think i ever want a crystal ball.

I still work full time, though this year I'm on sabbatical, so it's been more relaxed. I've had stertcehs for up to a year when I couldn't work, at the time because of joint problems. Now that I'm on meds, I'm relatively functional. I still have bad days. I have a job with flexible hours and that allows flexible positions. I also didn't start having problems until after I'd finished grad school and been employed for four years. (I'm an academic, so my work involves teaching, which I do seated, writing/research (seated/reclining), and meetings (seated/reclining). Last summer I was a wreck and couldn't sit up. I just know I have to pace myself and not over do things.

I remember I felt best sitting in a lazy boy with my hip extended (let not at a 90degree angle to body). Normally I sleep with a pillow under my knees, but I really wanted the leg straight, or it ached. Moving helped some. I don't remember what the restrictions were. For me they were longer because of the hematoma. You can still rejoice that you have pretty arteries. It's supposedly the gold standard. But I am sorry you had to under go all that. Ican certainly understand not wanting to repeat it!

I was still in the hospital when it was time for the dressing to come off, so it was done under supervision. I did have a hematoma a couple days out--obviously expanding bruising and pain. Got it checked out and it wasn't serious. It did take quite a while to totally disappear though. I hate being on and coming off steroids. each is awful. i really tank when i stop. give it a day or two and you should go back to baseline. i think once some cardiologists see a clean cath, they want to be done with you. I was pretty quickly ejected from the hospital once my arteries were deemed healthy, despite being in the same condition as when I arrived. chest pain and I could barely sit up. the hospital where i was had nothing to offer someone with ans problems.

Great to hear that you're okay and that the test showed clean arteries. It took a couple days for me to get over the steroids. Prednisone also gives me some pvcs. My ans symptoms are usually worse for a bit after I come off steroids. But for a very short course, there is usually no taper. Try to take it easy and let the puncture site heal. I guess now the trick is figuring out the cause of your chest pain-- but now you can rest assured that your arteries are healthy.

My weight has been stable on florinef. I may have lost a couple pounds, but I think it's because it has allowed me to be more active. But just a couple pounds. I've had my potassium checked several times, and it's fine. All in all, I seem to tolerate it, and it has evened out my bps a lot.

It's your life, body, and safety. I'm sure it would be good to get it over with, but I think it's reasonable to make sure an allergist is on board with this before you proceed--even if that means postponing the procedure a couple days. I would want to talk to the allergy folks and get them to talk to the cardiologist, to make sure everyone is all on the same page. If there is a way to convey to the allergist's office that this is URGENT. I know it's important not to alienate your cardiologist, but if there were a problem, everyone would regret it. I think a lot of non-allergy docs don't appreciate the beta blocker- severe allergy treatment connection. One concern with me is that I have previously premedicated with steroids and still had breakthrough reactions. I've been sent home from tests on multiple occasions, after high dose steroids, when I still started reacting. I may be extreme. I also do better with methylprednisolone/solumedrol than prednisone, for some reason. It could be that for most people the standard steroid prep is sufficient. That is why they gave me DOUBLE the normal dose. (and long story short, we did it two days in a row, as the first day my iv had infiltrated and they weren't sure I'd gotten the full dose. so we repeated the whole steroid thing two days running.) Have you ever done a steroid prep for any other procedure and did it work? I was in the hospital for the prep, because I'd been admitted for unrelenting chest pain when they decided to do the cath. Since my vitals were stable, I was transferred to a better hospital. The allergists and the cardiologists worked together closely to make sure I was safe. The allergy folks talked to me at length to determine the full extent of previous allergic reactions to assess the risks. I wasn't on bbs at the time, but they thought that at least the morning of the procedure, I shouldn't take bbs. That way your body's own adrenaline as well as any epinephrine will work better. They said it would be fine to resume any bbs next day. I remember my nose itching a bit during the test, and getting a little extra benadryl, but it all worked out. But it was very reassuring to know that the allergists and cardiologists were all in synch about the plan and any backup plans. And that let me relax a little bit more. Assuming everything is actually normal, the whole procedure was done in about thirty minutes for me.

If you search thru the archives, I posted a lot about this last summer as it was happening--last June esp. I certainly don't want to contradict anything, but I'd be a little concerned about beta blockers if there is a fear of anaphylaxis. Beta blockers block the effect of epinephrine. We had an allergist weigh in. I was not and am no on bbs. to be safe and really cover everything, I got a double allergy prep--80 mgs of solumedrol three times, spaced eight hours apart. that was A LOT of steroids. and I took benadryl before and after. It ended up okay. I would urge the docs to talk to an allergist. they really helped reassure everyone about how to proceed most safely. I took klonopin before the test--which I really needed, as all those steroids made me WIRED. And during the procedure they gave me versed and dilaudid. I still remember everything. except for one insensitive nurse, everyone was really nice. for them, it is a totally routine, standardized procedure. the allergy stuff adds some trickiness, which is why an allergist should be consulted, esp. if you're on a betablocker.

can i ask why they want to cath you? i had it done last summer. the anxiety was worse than the procedure. if you can take something for anxiety between now and then, I would. i also had to premedicate with steroids. i did develop a nasty hematoma at the puncture site that took a while to resolve, but as complications go, that was minor. i guess i'm glad it was done--because it was clear it was going to happen, with my ongoing chest pain and (false) positive stress test. we now know my arteries are clear. so now we can focus a little better on other things..

I was having bouts multiple times a week. Now it's a couple times a month, but minor. They get triggered when the ans stuff is most out of whack. Temperature isn't my trigger--it's lying down after returning to bed in the middle of the night--something about autonomic shifts, position changes-- and then once I'm totally about to fall asleep, chest pain, short of breath, nausea, sweating. Worse at certain times of the month. I now sleep in stockings and take midodrine around the clock to minimize the autonomic shifts, and we;ve added norvasc to stop the spasming, which unfortunately means dilating. so i don't need dilation per se-- I just need anti-spasm. but the two go hand in hand. the doc wanted to see if we could eliminate the symptoms with a higher dose of norvasc, but as my symptoms seem ans triggered, I think this might actually be making things worse. i'll still give it another week. how were you diagnosed? did you have ekg changes?

sounds like there's a lot of misinformation out there. i also heard a lot of this when seeing cardiologists who are not expert in ans issues. it's wearing. i was told i couldn't have orthostatic hypotension as only old people get that. i was told i couldn't have pots and OH. i was told i would actually have to lose consciousness on the ttt for it to count. i was told that orthostatic hypERtension does not show an ans problem. ARRRGH! my body does different things at different times-- all showing ans issues-- sometimes i drop my bp when i stand, sometimes i drop my hr, sometimes both go up, sometimes one goes up and the other goes down. sometimes i feel fine when my vitals are awful. sometimes i feel awful when my vitals look okay. (and when that happens the docs definitely want to give you the nutcase diagnosis). and i can't believe i'm the only ans patient with this kind of variability!!!

I really like the taste and it helps me hold on to fluids better. I keel a tube in my purse.

My heart rate has been going into the 40s at night-- but no chest pain. I think slow hr can also be part of autonomic dysregulation. My cardiologist chalked it up to "high vagal tone." I'm more likely to get it if I've really overdone it during the day and if I'm more premenstrual.

Just saw my pcp. I'm going to give it another week on the drug to see if I can adapt. I was thinking it was helping migraines, but then I did get one last night. Because what we're trying to prevent (heart damage) is more serious than ans dysfunction, the docs want me to give it a serious trial.

How would I know which one I have? I do know that my ans symptoms are definitely worse since upping the dose. I don't know if I just need to give this time. I do fear that this could make summer miserable. the only upside is that my migraines seem better at the higher dose. but if i had to rank, i'd say i'd rather have better autonomic stability than fewer migraines. of course, I don't want either. but migraines are episodic. feeling autonomically messed up is a 24/7 sorta thing. I like my cardiologist, but she isn't really an ans specialist. she sees herself as treating arterial vasospasm, though she understands that whatever spasming is probably part of my overall dysautonomia. but i am probably not going to respond like her more typical prinzmetal/variant angina patient. so i'm willing to put up with some discomfort, if there's a purpose!

the idea that there is a typical apnea patient is very damaging, i think, and prevents many from getting tested. skinny kids can have apnea! there was recently a story on npr about a kid diagnosed with add who was found to have apnea, treated, and the "add" went away. i think this also delayed my getting diagnosed. i had complained MULTIPLE times to multiple doctors about waking up from sleep gasping, and waking up with awful headaches, and waking up 4-5 times a night. these are CLASSIC symptoms. but because i was relatively young and female, no dice. it was finally my first ans doc who suggested a sleep study. and bingo. i have obstructive sleep apnea. it's considered mild, but my oxygen dropped to 88% and I was stopping breathing between 23-53 seconds at a time. my other docs are very surprised, but they really just need to change their stereotypes. in my case it's the narrow airway, chronic nasal congestion, end eds. for someone else, it could be a deviated septum, or enlarged tonsils, etc. i think part of the issue is that sleep studies are expensive. but i really believe there should be more routine screening in the population at large. it's really damaging to have untreated apnea. there are some quick and dirty at-home tests that are less good than a night in a sleep lab. one could for example sleep with an oximeter, to see if there are dips in oxygen saturation. or, you could even put a tape recorder next to you, to hear if there are obvious pauses, snoring, gasping, etc. most apnea patients are completely unaware of how bad their apnea is and don't remember all the struggles for air.

I think sleep disturbances are common with us. not sure about apnea. obstructive apnea is common in ehlers-danlos syndrome (and many edsers have pots) because of our floppy throat tissue and the fact that many edsers have high arched palates, causing a narrow airway that is more likely to close. central apnea indicates more of a neurological problem. some people have both. i do think sleep apnea is very underdiagnosed in the general population--it's not just middle aged obese men! what i was told is that sleep apnea will make any other health problem worse, so it should be treated if discovered. i have obstructive apnea ahd have used a cpap for a year. i probably also have "autonomic arousals," where i spontaneously wake up or partially awaken from abrupt changes in hr and bp. less clear what to do about those. but at least i'm no longer suffocating in my sleep. untreated apnea wreaks havoc on otherwise healthy people, sending their ans into a tailspin--as it basically triggers the flight or fight reaction all night long. it's recognized as a cause of HYPERtension among other things. i'd say, have the sleep study, and go from there, depending on what they find. apnea isn't the only sleep disorder. if you do have apnea, it is definitely worth treating. cpap hasn't cured me of my ills, but it has helped many things--headaches, migraines, general aches, some weird neurological symptoms i was having, nightmares.

have you had a 24 hour ambulatory eeg? this would track if there is a seizure component to this during a 24 hour period.

the problem is that the standard treatment for arterial spasm IS some sort of vasodilator--either a nitrate or a calcium channel blocker. and the spasming does need to be treated/prevented, as it could, in principle, cause heart attack if sufficiently severe, even in the presence of clear arteries (which mine are).

As I've posted here before, in addition to ans issues for which I take midodrine and florinef, my cardio thinks I have some arterial spasming (triggered by ans), and added a calcium channel blocker. trouble is it's a vasodilator. i was okay on the lowest dose (2.5), but now we've increased to 5.0 and everything is worse-- chest pain, presyncope, fatigue, hard to catch my breath. I've spoken with her twice. she wants me to try it some more. now it's suddenly gotten very hot (90) and I'm premenstrual, so I feel completely wiped out--like i can barely walk a block, whereas before no problem. I know there are a couple other here with prinzmetal/variant angina and ans issues. what do you do? i think i'll call on monday and say i just can't go on. 2.5 was okay, but this is not. i've been on the new dose for about a week. I just need my vessels not to spasm, i don't need them dilated!

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Yes and abdomen too. 2. Have you ever been diagnosed with EDS or suspect that you may have it? yes 3. Do you experience symptoms when lying down even after a night of sleep in your bed? sometimes 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? not sure--sometimes I think I have a more hyperadrenergic response, but not always. 5. Have you ever been informed by a doctor that you have low blood volume? not formally tested. but florinef has really helped. 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? intermittent nausea and diarrhea 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? chronically freezing hands that turn bluish 8. Did your POTS arrive suddenly? mild dysmptoms perhaps before, but it felt sudden 9. Is your skin pale? I guess 10. Please the top 6 worst symptoms that you experience with POTS: chest pain woozy/presyncopal when upright too long short of breath headaches feeling like all the fluid is being vaccummed out through my feet bradycardia and pvcs/pacs, esp at night and premenstrually awful exacerbations before my period

If it persists, I'd get it looked at-- by a sports medicine person, for example. EDS or not, it's good to know what's injured and how to treat it, even if it's just overuse. I do have eds, but if something hurts in a new way, I get it looked at, if the usual tricks don't work. My knees have been a lot better, but I do have braces when things get flared, and know what muscles tend to go into spasm and need to be released. I also have more knee pain if I'm not properly firing my glutes. I seem to always be in pt for something, so I'll also ask my pt to look at a new injury and suggest any new moves.

YEs, but I think the only overlap with pots for me is that they are both caused by eds. I have bad discs in my lumbar spine and have had surgery on L5-S1. I get in trouble with prolonged sitting, bending over, and lifting.