Merrill

All the best in your recovery, Vickie ... I'm amazed that you're up and visiting us on the web...but so glad you are! Please keep us posted on how you're doing, and take good care, merrill

Emily, I'm sooooo glad they gave you pyridium and I reeeeeeally hope you try it--but most of all, I hope that when you do, it gives you some relief from your symptoms. Yes, that most of all! Those OTC analgesics for urinary tract discomfort that I told you about have about half the same med that's in one dose of prescription pyridium (or something like that...) I've insisted that I be given pyridium in the ER when being treated other times for UTIs; the docs are more than happy to dispense b/c it works so well and gets us to stop complaining about the pain! It's really SOP for this kind of discomfort. All that's to say, it's basically all the same med, and don't freak out when it turns your pee a FANTASTIC shade of orange (so don't wear white undies! or wear a minipad! ) and for me, it really works great without affecting me otherwise (negatively, that is, funky side effects etc.) I've said this before and I'll say it again, why be in pain when you don't have to be? (We suffer enough other bizarre symptoms, urinary tract pain certainly oughtn't be one of them.) Anyway, I hope it works for you; keep drinking a ton of water, cranberry juice, whatever... the more the better... Cheerio. (PS I just came home from Kol Nidre services and had a bowl of ice cream w/hot fudge. I'm a bad girl, huh? Well... I knew I wouldn't be fasting tomorrow anyway, tho I was going to try sticking to water/gaterade only. Well, you know what they say about the best laid plans. Actually, I don't know what they say either... )

I live in Chicago where it's plenty flat, but downtown where I work, there are a couple of what I call "hills" that healthy people (those who would even notice them) would refer to as "inclines." Today I went for a short walk at lunch and it's really hot out (the August we never had) and I had to walk up an incline with my arms crossed in front of me to support my upper body and I was huffing and puffing and my tachycardia was going nuts ... Grrr. I was OK after a glass of gatorade and 2 glasses of water and some sitting still in the air conditioning. All that's to say, how dare he tell you you're "afraid of a little exercise" -- for a person with pots, just standing up is like jogging in place for most other people. Sheesh. If you have to contend with a steep hill just to go to class and the weather's still warm AND doing so triggers a very uncomfortable episode that's hard to recover from, I'd definitely pursue a school disability tag like the one Morgan described (if not a disabled tag from your city) so you can park closer. You're not falling apart; you're making your way in the world. Don't let anyone diminish you or your experience. Merrill

Friday, I know what you're going through--or at least I know what my version of that looks like. I had panic attacks pretty frequently when I was much younger (in my late teens and through my 20s ... They happen less often now and I'm in my 40s--and in fact, I've felt much calmer in general since I was diagnosed 9 months ago. I know this sounds strange, but when things get bad (and my guts ALWAYS go wacky and then I feel sick AND anxious about being sick and all the rest that can spiral out of control), I remind myself that it's just the POTs--that it's not in my mind, it's in my body, and I just have to wait a bit for things to get re-regulated. Just knowing that my mental reaction to a stressful situation is actually causing a severe physical reaction (and not depression etc) helps me keep things straight in my head. Straighter than before, anyway. I hope this makes sense... Sometimes, though, I still can get carried away by ideas of imminent catastrophe, and I worry and fear the worst etc. Sometimes, especially if this happens at night or during the night and I don't want to take a sleeping pill, I'll write everything down that's flying through my head. I find that writing is very cathartic--very therapeutic. By putting it down on paper or onto the computer screen, I can actually feel the anxiety leaving my body. So that's one suggestion, especially if you are truly bedridden when you feel this way. The other suggestion I had is to try your hardest to get out of bed when you're feeling especially anxious and DO something. Anything. Put pictures in an album, scrapbook (actually, those things can be done in bed ) or better still, go outside! Take a brief walk to the corner and back. Pull up a weed from your yard or someone else's. Grab a plastic bag and pick up trash in a park or from the curb by your house. Anything that would refocus your energy and your mind. And for heaven's sake, if you're having trouble breathing, think about anything BUT your breathing! (That's my advice, anyway. I find it makes me nuts to think about my breathing--even if I'm feeling good and in yoga class, where that's a main focus of our work.) I hope you find something that works for you soon! Merrill

Oh, m'gosh, Opus! Amazing! Thanks for sharing your news--I've definitely been wondering what happened--and I'm so glad that you did the safe thing and moved inland to wait out the storm. You have such a beautiful, positive attitude--I admire your strength as you tackle each new challenge as it comes. It's so great that you have a place to stay for the next couple months as you rebuild your home... I'm sorry to hear about the layoffs at work; it can be hard to carry on when friends and colleagues have been forced out... surviving layoffs, like surviving a hurricane, can leave you picking up the pieces and wondering what's next. None of it's easy, that's for sure. But as you say, you have so much still to be grateful for... Keep counting those blessings... It's no wonder really that your symtoms are worse right now. This is an awful lot of stress to endure! But keep the faith; things will get better in time--your health, your home, your work... all of it will be OK. Take 'er easy in the meantime. And keep us posted as you can! Merrill

Dr told me always pee immediately before as well as immediately after! (Nothing like it for a mood killer, but it truly reduces potential for infection.) And yes, I was on Macrobid for longer--I can't remember now if it was 5 or 7 days. Cultured the pee and I guess this was the right med b/c infection went away.

emily, what did you decide to do? concerned about you, m

oh, yeah, I'm what ya call your basic night owl. Always have been! And I move sooooo slow in the morning.

Emily, Macrobid is the antibiotic that I took a few weeks ago for my bladder infection. I agree--it's totally weird that they would have you take antibiotics without testing to confirm a bacterial infection. Oy. However, I'll just add that if you've been that uncomfortable for a couple days/nights running, and if it's really burning bad and the need to go is very intense, it's probable that you do have an infection. I'd say go ahead and take the med (and take one of those OTC urinary tract analgesics for gosh-sakes already, would ya? to get yer fine self outa pain!) and don't worry about side effects. Anyway, once you start taking something, you'll feel better in a couple doses--but keep taking the rest of the prescription. be well, m

GayleP, I'm sorry to hear you have an infection, but I'm glad you (presumably) got some antibiotics to treat it! You should be feeling better with just a few doses (but take it all!) take care, m

That's such an interesting question, Katherine! You know, the diagnosis of POTS, which really is an umbrella term that describes so many different symptoms (as evidenced too by the wide range of problems people on this board suffer from), is still so new in the grand scheme of things ... Researchers are just beginning to understand the mechanisms of the autonomic nervous system--I imagine it'll be some time, generations maybe, before they'll have studied enough people through to advanced age to know the answer to your question. Take care, m

I agree w/everything Morgan just wrote. The doctor may have been right when he said that bladder discomfort was common, but it ISN"T right to ignore it! You absolutely must find out whether you're dealing with an infection (so easily cured with antibiotics) and if not, why there is blood in your urine. We know bladder stuff, urinary discomfort etc is common b/c there are a ton of different OTC products available to treat it... Uristat is the name of the one I couldn't think of yesterday; AZO is one I took a few weeks ago. Why be in pain when you don't have to be? This stuff WORKS--after one dose or two--to end the burning, the full feeling, the urgency, the stinging, the spasms. (It doesn't do anything for stopping the bleeding, tho!) BTW, it doesn't interfere with the test they do to check for bacterial infection; I had taken it in advance of going in for my test for a bladder infection, and no harm done. (I confirmed that with the nurse, telling them I had taken AZO the night before and again in the morning. No problem.) (For anyone wondering, this isn't pots related--it's just part of the loveliness that comes with being female!)

Jess, sounds like they're taking some great precautions! And washing hands right away is another great idea. I agree w/others--it's quite an adjustment for you both, but you'll both grow as a result! Enjoy your time--and developing your business--and look forward to some really great stories when he gets home each day! m PS Glad to hear David is feeling better--that was quite a story you shared about your trip w/him to the ER! Uch!

Ditto what runnergirl and everyone else has said, Ernie. You deserve to know what's going on, and it these tests will shed some light and possibly lead to a different treatment, then GO FOR IT! (I'd be looking forward to the tests too!) PS Working's overrated.

Here's what I'd advise: If this is a brand new symptom, you should first make sure that you don't have a bladder infection. (Your symptoms do sound either like cystitis or bladder infection, by the way.) I had a bladder infection a couple weeks ago; I walked into my gynecologist's office (w/out appointment...) and they had me pee in a cup and had the results--and a prescription for antibiotics--in minutes. It's really really important you rule out bladder infection; if you ignore it, the infection can easily spread to your kidneys and then you've got real problems! In the meantime, when I have periodic bouts of cystitis (need to urinate, feeling burny down there afterwards, and all the rest you describe), I take an over the counter meds that work beautifully (and turn your pee a lovely shade of orange, so wear a minipad ): prodium, AZO standard, and there's one more I can't remember. You can ask the pharmacist if you can't find on the shelf--typically it's where the monistat etc is ... anything with phenazopyridine hydrochloride. It stops the spasms and is truly a miracle worker...you can take before bed and I swear you'll sleep through the night (or if you get up once, you own't have the ongoing discomfort). No side effects except relief! Good luck! Merrill

Michigan Jan, I'm one of those tightly bound ones ... my hamstrings are ridiculously tight, my low back -- everything! (I hate seated poses because I simply cannot sit up straight--my lower back is constantly rounded. It's my particular physiology, though--I had a very strict ballet teacher when I was a little girl (age 5-12 or so) who worked hard with me to get me to straighten my back... I just couldn't do it--and it never got better no matter how hard I tried.) All that's to say, I'm terribly tight and not a bit hypermobile, as you say, and I don't particularly LIKE stretching--but I do it once a week in class and sometimes at home because it's good for me, and it does help make me feel better! Also, I used to get frequent bouts of sciatica (nerve pain originating in my hip/buttocks and radiating down the leg)... and I rarely get them now that I'm doing the yoga stretches. Merrill (PS I think I'd like it more if I wasn't constantly obsessed about all the other things I need to be doing with my time...)

I've been taking a beginner level hatha yoga class for the last year and a half ... it's weekly, with breaks in between sessions, and I do some of the stretches at home as well. I've been sticking with the same level--for me, it just doesn't make sense to take a more advanced class, and I really like my teacher. I hope you've started your practice with a super easy class--and that your teacher doesn't spend too much (any?) time correcting people's poses. For my part, it's just nice to go somewhere and stretch, learn how to control my breathing, and focus on the meditational aspects. The shivasana at the beginning and end of class is both centering and relaxing. The poses people mentioned are way more advanced than anything that would be tried in my class (which assures me, actually, that I'm in the right place)! Don't try anything that hurts, and go super slow when you roll up from a bent-over-at-the waist position (to avoid getting too dizzy). I hate poses where there's repetition of holding/stretching my arms over my head and then lowering them down; I can feel the blood rushing down my arms and it makes my hands tingle in weird ways. But I do em anyway... and I stop some poses early or don't do some of the positions at all. Of course, you must cheer yourself on every step of the way, and pat yourself on the back for trying a new form of exercise that will help you inside and out. (And remember not to feel bad if you must make accommodations for yourself; I told my teacher about my POTS so he'd know why I was pooping out sometimes, and you may want to do the same.) Congrats -- I hope you're able to stick with it!

I wake up with a headache every now and then--don't know why. I take ibuprofen and it typically goes away. Sometimes it will stay with me throughout the day, no matter how much ibuprofen I take--going back to sleep usually helps it to resolve in that case. My mom wakes up with headaches regularly (she doesn't have pots/dysautonomia); headaches in the morning is one of the symptoms of sleep apnea--and since she snores, it's possible that's what's going on for her. (She's never had a sleep test and doesn't intend to--it's not that serious. She takes pain relievers and is fine. Hope you feel better now, m

JLB, I can't tell from your post whether you've had any autonomic nervous system tests yet, the tilt table test being the most important of these. Your cardiologist--even one who is not an electrophysiologist (mine isn't) is able to prescribe this and should be able to interpret the results. It IS helpful to get a POTS diagnosis (or diagnosis of other forms of dysautonomia) for sure--if only so you can get people to stop patting you on the head! My autonomic tests were ordered by a cardiologist when I wanted to finally track down why my heart rate was so incredibly high all the time. After ruling out cardiac problems, we looked at dysautonomia. Anyway, good luck with your decision, merrill

I hope you (or your son) can get a withdrawal schedule from the prescribing physician--the other post was an example of what tapering could look like, but it may not be what's recommended in your particular situation and for the medication you're taking. Supervision is absolutely mandatory--the doctor may put you on something else as you taper off the med you're on. Keep us posted, Beala--let us know what you've decided to do. (PS is it 100% sure that it's the ssri that's causing the "brain fog?")

On this erev Rosh Hashanah, I want to wish all my friends here on the forum a sweet and healthy (healthier?) new year. All the best, Merrill

What about taking something like Colace regularly, say, twice a day? Just a thought. Hope you feel better soon, m

Hi, Sommerrose--Did you not talk to your doctor about the safety of taking these meds while breastfeeding? Seems like that would be a good idea; also, perhaps, talk to your baby's pediatrician. I just did a quick web search and found this on Drugs.com: http://adderall.drugs.com/ The drug is passed through breast milk ... it's a class C drug and it's not known whether it would harm a developing fetus (which means it would never be prescribed for you if you were pregnant). You're smart to be asking these questions before you start taking them ... I wish I could offer more advice at this point (I don't have direct experience with these meds, but probably others do.) Take care, m

Shanna, I hope you're feeling better, and I'm glad to hear that you'll be talking with your doctor soon about what's happening in your emotional life and whether the meds you are taking may be a contributing factor to your feeling depressed. Given the feedback others have given you, it sounds like there could be a connection. (But it's a catch-22, isn't it, if the florinef helps with your pots symptoms ... maybe the dose can be adjusted?) I was struck by this line in your recent post: "also one of my close friends is leaving for the military, and i truly love him. this has a big impact on me lately and im just to the point i want to collapse and stay in bed all day... " Boy, that would sure knock me down and out too! There's a connection not just between feelings of depression and coping with a chronic illness and the interaction of the medications we may be taking ... but with the events and stressors of our everyday lives that would make just about anyone feel like crawling in a hole and staying there! I think--in fact, I know!--that stress (especially hugely stressful situations like the one you've briefly mentioned) can cause major (downward) turns in our physical wellbeing; our systems are so sensitive! I hope you and your friend will be able to find some ways to stay in contact during his term of service--and that new and old friends and interests--including this forum--will be able to step in and fill the void left by his absence. Indeed, you must make sure that this happens! You can't stay under the covers forever...you don't want to miss the autumn show of color, or the election, or the season's new sitcoms, or whatever else may strike your fancy. Hang in there; we're not going anywhere! We're right behind ya. Merrill

I know what you mean about motion--and being sensitive during takeoff and landing. I find it helps to shut the window blind (and no fair looking across the plane and out the window on the other side ) and then to look straight ahead or just keep my eyes closed. I also practice some kind of breathing and/or meditation during those transitions (takeoff/landing) ... repeating something like "Breathe in calm, breathe out fear" during inhalation and exhalation. Sometimes I focus on singing a little song in my head...anything to focus my attention and keep me centered. These are also things I do during flight if I start to get a little panicky and my hr increases... close my eyes, breathe, focus my mind on something else--picture a beautiful scene maybe or even just picture a number, tracing it over and over in my mind. I also bring light reading on the plane--a funny novel (I'm just finishing Crossing California, which is set in my neighborhood in Chicago, and it's a blast) or a magazine... portable cd player with favorite tunes also helps keep me calm when I get the jitters. But it's best to stave off these episodes than to battle one once it arrives! I just flew to and from California over the holiday weekend and actually did great on the plane. Much better than usual, and so much better than expected. Happy trails!