EarthMother

It amazes me how the heart still can pump enough blood to our vital organs when we are having a bout of erratic beats. But it does seem to do just that. I suppose that is reassuring on some level. It certainly doesn't do a thing for me tho when I'm in the middle of a surge. I'm so sorry this is such a hard time for you. It seems when we are faced with our own personal "perfect storm" that each body sensation and reaction feels amplified. Our emotions, the pain, even temperature seem to be on Mr. Toad's Wild Ride. Despite the complexity and suffering caused by your disordered circumstances, it does sound like you have a wonderful support network of physcians/therapist. I am also blessed to be surrounded by people who are genuinely trying to help and seek my best interest. I guess then, all we can do is wait ... close our eyes (and our mind) when we can ... until this storm passes. Me? I am going to visualize MomtoGiuliana's seashore visit and pray that each of us find a peacefull port to rest and replenish.

There are a few articles out there .... here's one summary on pubmed: 1: Auton Neurosci. 2005 Feb 7;117(2):132-42. Spectral analysis of slow modulation of EEG amplitude and cardiovascular variables in subjects with postural tachycardia syndrome. Lagerlund TD, Low PA, Novak V, Novak P, Hines SM, McPhee B, Busacker NE. Department of Neurology, Mayo Clinic, 200 First Street SW, Rochester, MN 55905, United States. OBJECTIVE: Previous studies have reported slow (<0.5 Hz) modulation of electroencephalographic (EEG) background amplitude and suggested that this reflects periodic neuronal activity in the brainstem, such as may be recorded from cardiovascular and respiratory centers in animals. We searched for a relationship between EEG amplitude modulation and modulation of simultaneously recorded cardiovascular variables and attempted to determine whether this relationship was altered in subjects with postural tachycardia syndrome (POTS). METHODS: We recorded EEG, blood flow velocity in the middle cerebral artery (MCA), heart rate, respirations, and blood pressure from subjects with POTS and controls during head-up tilt. Time-frequency analysis of 0.512-s epochs of EEG was performed to determine peak alpha amplitude. Spectra were divided into 3 bands: ultraslow, middle, and respiratory. RESULTS: EEG alpha amplitude modulation in all frequency bands was reduced in POTS subjects while supine. EEG modulation decreased in controls with head-up tilt but not in POTS subjects. Heart rate modulation in the respiratory frequency band decreased with head-up tilt and was significantly less (P<0.02) in ultraslow and respiratory frequency bands in POTS subjects after head-up tilt. Blood pressure and MCA flow velocity modulation in middle and respiratory bands increased with head-up tilt to a greater degree in POTS subjects. Blood pressure and MCA flow velocity modulation frequencies were moderately correlated, but correlations between EEG and cardiovascular variable modulation frequencies were generally low, being highest in the respiratory band but not statistically significant. CONCLUSION: There are subtle differences in EEG amplitude modulation in subjects with POTS. Altered EEG amplitude modulation in POTS may reflect altered brainstem physiology in this disorder.

I'm going to have to look to see if I can find that article. I had an EEG done while I was in the hospital last June. They did all of the strobe light flashy stuff to see if they could make me have a seizure (which I've never had mind you). The results indicated normal brain waves during all the flashy stuff but that I had some other unusual spikes I think toward the end of the test. They wanted to hook my up and keep me in the hospital for another three days, and since I had already not slept for the three nights I had been there and was otherwise being discharged, I declined the invitation. I still have it on my to do list to get another referal and have that test repeated. When I flair I often get that feeling of confusion, but it doesn't last long enough to go and get to the hospital and hooked up. Which is probably why they wanted me to stay as an inpatient. I think I read that they do have some eeg systems that you can wear as an outpatient ... kind of like you would for a holter monitor. This is an interesting post. I'll have to bump this follow up on my to-do list and get it over with.

I get this most often on my face. Both sides, under eyes and on my cheeks. Lately I notice it also on my feet, just painful ice. But to the touch my husband says they don't feel any colder or warmer than any other part of my body. Not sure if it POTS related or not.

Dear Katherine, I just now caught this thread and read the very tragic news. My heart goes out to you and your family. I hope your sister is improving. She has a difficult time ahead of her and will no doubt, like you, be searching for answers, looking for contributing factors, and seeking reassurance from all those she loves and trusts. I wish this life experience had more road maps and we were able to better navigate our journey. But it seems especially in times like this that things happen without reason and is perhaps when each of us finds faith in something outside of our own ability. My thoughts are with you.

Exactly. How about we follow them around on rounds for a day tapping them on the shoulder every minute. Then occasionally hitting them really hard to knock them off balance a few times each hour. How long before they get that "living with it" isn't as easy as it sounds!

The "good thing" about magnesium is the body will flush out any excess it can't use (i.e. you get loose stools -- which is usually the sign you've taken too much and you can back down a bit the next day until your bowels are back to normal.) Good to hear the news from your cardiologist was good. I do know how hard these are to cope with ... as my husband says for me they are "deal breakers". When I am having a run of them (like in the last week) I don't go out at all. Pitty, I haven't learned to handle them better. But I am trying. Hope the magnesium does the trick!

I did a quick google search for the words Norvasc and Heart Skipping and there was just a smattering of stuff out there on various bulletin boards ... nothing substantial. However drugs.com lists "fast or irregular heartbeat" as one of the possible side effects. http://www.drugs.com/sfx/norvasc-side-effects.html Best source is your doctor though.

Klonipin to Valium is the right way to go if you are going to taper. I only did benzos for two months but when I tapered off which probably took another 4-5 weeks I did get lots more heart arrhythmia. It probably took three months off of the benzo before I noticed a reduction in the skipping (then again, I started taking the Slow-Mag at about that same time ... so clearly I have NO idea why they started or stopped.) There is lots of anecdotal forum posts about norvasc and heart issues (pounding, slow, fast ... some skipping not much) but that's not to say your body isn't going through an adjustment period and it will still settle down. But you may want to mention the coincidence that the heart skipping seemed to come on at the same time you began this calcium channel blocker. Hand in there. Is your regular cardiologist on call today? Or is it one of those offices that take forever to get an appointment?

I have had two stress tests ... both BEFORE I was diagnosed with POTS and both showed that I was in perfect health ... FOR AN 80 YEAR OLD! I couldn't stay on the tread mill for more than a couple minutes before they had to come and grab me off of there. All they got out of the test was that I seemed to be "in very poor condition" for my age. They had no idea of course that it was the orthostatic intollerance. Doesn't seem much point in doing one now. On the other hand something like a Holter monitor can show how your heart is handling even your every day "stress tests".

That's rough. I'm so sorry your system hasn't settled down for you. Do you sense that it is skipping 10 times a minute all the time (i.e. can you feel them) or do you think it's just when you are checking for them? I know I tend to get more when I am counting them. But I can feel them in my throat even when I don't have my fingers on my pulse points. Feel reassured that the doc said its not a critical care matter and that you can schedule an appointment with your regular doctor who is treating you. My cardiologist agreed that unless I was having 10,000 a day he wasn't going to treat them at all, and even if it was 10,000 a day it wasn't a matter for me to go to the ER. Hang in there and let us know how you are doing. p.s. I know you are knowledgeable about all this, so its safe to assume you are avoiding caffeine, no artificial sweetners, no smoking, no alcohol, as well as some cough meds and other over the counters have stimulants in them as well.

My cardio suggested Slow-Mag ... I also use to take huge levels of magnesium supplement but this special time released magnesium which is actually quite small in terms of how much is delivered, does seem to help more. (Except for this week of course!) I would have held on to my pills until they ripped them from my post-menopausal fists. But my cardiologist insisted. Easy for him to do. I still haven't ruled out other hormonal options ... its just so hard to pin point what is causing what. Like you my blood work snapshots are still coming back "normal". My mother completed menapause in her late 40's though I thought I was good to handle this for only a couple of years. But who knows, it's not like there is any kind of GPS that tells us our ETA!

Ok, sweetie, let's get some practical advice (at least some humor) so that we can cope with the medical elite on their own terms! Doctor: You know you can give someone too much information. We are only human, you know! YOU: I understand. It is difficult for people with attention deficient disorder to focus on any subject for more than sixty seconds. I will do my best to accommodate your disability. Doctor: You know if you itch something it will look like that! YOU: Thank you "Doctor" (and make sure you use the air quotes, they really love that!) I'll be sure to tell my primary care physician because when he looked at it HE seemed to think this was an important symptom for you to review. Doctor: I'll run some tests but I'm sure you don't have anything. YOU: Thank you Doctor I do appreciate you being thorough. I'll write a check for your bill too, but I'm sure it is also a complete waste of my time and money as well. What likely happened today is that this "Doctor" didn't want to look like an idiot in front of his new resident. So rather than confess he is CLUELESS and a p!ss poor diagnostician he went on the offense to puff up his own ego and try and look good in front of his protog?. Sorry you were caught in the cross fire of his emotional disability. I wish we could all say it is the exception and not the norm ... but my sense is after umpteen years of medical school, residency and whatever else it takes to be at the top of your field in an area of medical specialty, it is likely that you have lost touch with your own humanity. Instead of looking upon a patient and seeing yourSelf reflected in her eyes, you see another lab rat (dumb bunny) and the illusion of your own superiority makes it impossible for you to come into a space of partnership with your patient. So ok, what to do? Personally, I never step into a Doctor's office without a support person of some kind. You may want to take a clip board or pad of paper and take YOUR OWN NOTES as the doctor is talking (can you imagine what your allergy specialist would have done, if you calmly clicked your Bic and nodded your head as he was "lecturing you" and you jotted down some notes in short hand on the pad.) Remember what your goal is for going in ... You want the tests done for mast cell (or whatever else it is that you want to rule out at that particular visit). You don't care if the Doctor believes you or thinks you are totally insane. Get the tests! And then take the next step. What is the next step? Coming here, where you are among empowering friends who will give you a hug and help you feel just a tiny bit better at the end of a long day. Congratulations on getting the tests done you wanted! Peace. ~EM

Count me in the boat for the choppy heart beats! They have been driving me crazy for the last week! AGAIN. Isn't it SO strange how you can go months (sometimes years) with hardly a missed beat in the bunch ... and then all of a sudden WHAM they are back again. Like you described it not so much the Ba-BOOM but it's that rush of ick that seems to follow the episode that is the pits. I've had hot flashes before ... and I can't say it's like that. I don't sweat and it's not over in a couple minutes. For me it is HOT and it feels like all of my muscles are in a holding pattern. Then there is this back/neck/shoulder pain that comes out of no where. Then in about a half hour (or an hour if its a doozy) it all seems to subside. I suspect in my case it's perimenapause and/or my thyroid acting up. Either way, not much to do. My cardiologist took me off birthcontrol pills last fall so I am literally free falling now into menapause without a parachute. My PCP wants to see how bad things get before we do anything "chemical" to try and mitigate the menapause symptoms. Since I am still having regular periods ... it looks like I'm in this for a longer haul than I had thought. I do feel for you sweetie, these are NO FUN and a bear to cope with in the moment. Sending you easy breezy and highly rhythmic thought waves ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ...

Welcome Tony. Advice? Sure. Don't Worry. Isn't that so funny when people say that to you? Especially "doctors". But even though your situation looks and feels dismal at the moment ... there are really some good reasons why you can take assurance that things are are all working their way around and in your favor I might add. Many people have been through a dozen doctors in a dozen years just to even get the tests done that you have had so far. It sounds like you have a really good physician network and you are getting the procedures all done in a timely manner. By the way you described the beginning of your symptoms it also sounds like you fall into the "sudden onset" category. It is quite possible all of your symptoms can clear up just as mysteriously as they started. Right now you are in a wait and see, day by day, discovery phase. Feel assured that you have been able to return to work and that even though it feels terribly slow ... that progress is happening. Sometimes we have to just take that on faith, until we see it in sight. Hang in there! ~EM

I make myself a stiff drink! (oh, wait no, I gave up drinking decades ago) I light up a cigarette and have a double espresso! (nope, gave those up even before I stopped drinking!) I eat a big mac and fries! (nope ? grain brain vegetarian here.) I get my ?Call On Me? Dance Video and work out! (oh that one even had ME laughing) I watch YouPorn on my laptop. (No. Really I do.) Pray? Gamble? Chocolate? (nada, non, nyet) My goodness no wonder I am at the END OF MY ROPE!!!! On my journey, it seems that most of my ?suffering? comes from my own ?mental stories? and in those cases even a FORCED FAKE LAUGH is enough to break the bio-chemical peptide storm of doom and gloom. Peace. ~EM

((((((((((((((((Gentle Congratulatory Hugs))))))))))))))))))) May your trip home be uneventful!

When I was able to work we maintained a "fragrance free" office. Everyone was on board and this really helped -- though we occasionally had problems when folks used the microwave to cook up FISH! But all in all I was really fortunate that my co-workers (many of whom also suffered migraines from chemical sensitivity) were very supportive. Now the bathrooms were another story! The cleaning agents used had me ill each time I needed to go to the loo. I found two interesting articles that may help give you some tips on who, what, and how to talk to people at work about these issues: Nice Perfume, must you bathe in it! JAN: Accommodation and Compliance Series: Fragrance Sensitivity Running up against people who seem utterly thoughtless is frustrating (and I must say I LOVE the previous suggestions! ) ... But for people who have never walked in our shoes, and may have come from an upbringing where no one had the time to help them learn to appreciate and love, it may be beyond their ability to show compassion. And in those circumstances when we ourselves can have grace and as much patience as we can muster in the moment we can walk away knowing we did our best and in their own (pathetic woefully inadequate) way they did as well. Some version of ... "Forgive them for they know not what they do". I hope tomorrow everyone has a better day.

I understand now! Thanks all! Sorry Soph!

Or maybe it was just the fingers that were clasped? Ok ... I'll stop thinking about this now

Ok, I had my cell phone handy .... this is how I pictured it in my mind as you described it again. Pulling away from the center clasp of my fingers. Is this about right?

I know how hard it is to not be our "remembered self". That adrenaline rush is the pits and the fact that we feel like crap for so long afterwards really makes us pause before venturing to the edge of our symptoms the next time. But each time we take that leap we have an opportunity to test our wings, otherwise we would never know when we could fly. Congratulations on getting out in the snow. You daughter will remember the day as one of total success and laughter, even though your cellular memories have a different story. {{{{{{{gentle hugs and virtual snow angles your way}}}}}}}}}

My body doesn't tend to do "well" on meds. And I can't seem to tolerate beta blockers so that's not an option for me. That said, there are some medications that I have no problem taking "for life" even with my Earth-Mother-Grain-Brain persona. Thyroid meds being one of them. While some drugs have a problem with long term use and physical addiction and it is important to wean ourselves off of them before they become a problem ... I do not believe beta blockers fall into that catigory. I know plenty of people who feel much better on them and for them they are happy to take them for the duration. Good luck finding an approach that works for you.

One of my early doctors (when we just called it orthostatic intolerance) warned me against drinking "too much" because I would tend to throw off my minerals because the water was washing everything out of my system. I also pee constantly. I actually tend to feel worse when I am drinking the "recommended" amount of water daily. I was on DDAVP for a few years and felt MUCH better when I was taking it. It allowed me to drink and RETAIN water. As well as not get up a few times each night to go pee. But my Doctors took me off DDAVP when I was in the hospital last June. I can't remember their rationale, but I do miss it. So for me ... for now ... I continue to salt load, but I do drink only a modest amount of water. ~EM

Whoo hoo! That is such good news. Can you explain to me again about the counter maneuver with the finger tips ... I don't know why I can't get the image in my mind. How did it go? Keep us posted on the tips and progress! ~EM