Merrill

Mary, are you still awaiting test results? I just read some old posts and saw that you were waiting for results in early December! They should have them by now ... doncha think? Maybe the doctor's office didn't call b/c the results were negative? Check!!! It seems a shame to hold off treatment for other symptoms... Also, are you taking a beta blocker? Just curious, m PS to Persephone--I don't have a blood pressure cuff so I'd never know if my bp shot up like yours or not. Like Mary, I don't think I'd feel it ... Sorry!

You can download this very informative book for free (pdf version) http://www.ndrf.org/Reference.htm it's quite a lot of pages to print out, but you may find sections to print (as opposed to the whole thing). Or you can buy a copy. Check out the home page at http://www.ndrf.com. This is a very useful/informative web site.

Hi, all. I got the following update (and OK to post) from Emily's mom today--I think it may have been sent to family and friends, updating everyone on Emily's condition post-gallbladder surgery. If you post a reply, I'll make sure that she gets your message! Keep a good thought, Merrill Note from Renee, Emily's mom: The road to recovery from surgery has hit some unexpected bumps in the road. Since a week ago Sat. (Jan 29th) Emily has been too weak to do anything more than get out of bed to pee and to sit in her recliner. We were frustrated trying to get any help locally and ended up paging the specialist at Johns Hopkins last Sun...He has been awesome and we are s-o-o grateful to have him helping us. His guess was that Emily was malnourished b/c she was still having digestion problems and losing weight and that she had a urinary tract infection from all the times of catheterization in the hospital. After starting antibiotics on Sun. nite and getting the prescription food supplement he recommended on Thurs., she still was not doing well and she paged him again on Fri. He got her started on IV fluids and she is doing them every other day this week. We are hoping that by the end of this week there will be significant improvement --she will be finished with the antibiotics, which also upset her tummy, will have had 4 days of IV fluids and a week of food supplementation. She will also have had lots of "watching" by Asher....He is so-o anxious and he doesn't know who to watch or what is happening...Yesterday after a particularly upsetting day on Fri., he threw up a couple of times!!!! Just what I needed!! However, with the sun shining and temperatures more like spring than winter this weekend, he did get his first walks since 3 weeks ago and he seemed to be happy with that. It felt good just to get outside a bit. Fri. was a crazy day, b/c I had asked the doctor I saw for accupuncture on Thurs. for some pain meds and he gave me some samples that ended up making me too dizzy to get out of bed on Fri. morning. So-o-o we had a house of "dizzy" and "dizzier"....Every time I tried to get up to get something for Emily, I fell back into bed....Poor Asher....he crawled up on the bed in-between the two of us!! Emily wants you all to know that she misses you and prays for all the wonderful family and friends in her life. Right now she is too tired and weak to be on email (the computer has gotten a long rest) or to chat on the phone with you, but she has enjoyed all the wonderful cards she has received. We've put them up all over her bedroom and den where she can look at them all the time. The specialist at Hopkins said he has seen this happen before and that in 6 months Emily will be very glad that she had the surgery....the gall bladder was definitely causing a lot of problems. So while the recovery is going to be longer and slower than expected, we hope things will start to improve somewhat this week. Thanx to all of you for keeping in-touch and keeping us in your thoughts and prayers. Love to all from the house of dizzy, dizzier and wild child. Emily, Renee and Asher

Hi -- I was just reviewing your past posts b/c I wondered whether you'd been diagnosed with POTS ... it doesn't seem so (unless I missed something or unless you didn't say...) I have pots and was put on beta blocker a few weeks ago to slow my heart rate ... my heart rate while I'm awake, whether sitting or standing, is always over 100 (but it goes much higher when standing). In my 24 hour holter, it didn't go below 67--and that low was during sleep. The beta blocker definitely keeps my highest highs when standing to around 130 or less, so it's helping in that regard. Most people on this board who have pots will likely report problems/experiences with tachycardia, not bradycardia. When I was at physical therapy last week, I asked the woman who was helping w/my exercises to check her pulse. She was standing around--and it was 64 bpm. Mine was 120, and I was seated and doing isometrics. All this is to say, since normal is considered 50 to 100 bpm, you're probably doing ok--especially since you're on beta blocker which would slow you down a little anyway. Do you feel bad at this heart rate? Best, m

Dawn, can't they give you a schedule of appointments in advance of your visit? I've never been so I don't know ... but it would seem that they'd want to repeat most tests unless the ones that you had were done quite recently. Things can change for people like us rather quickly ... (And if you have had tests recently, then I'd wonder why you'd choose now to go to Mayo...) Anyway, it's good that you live reasonably close; I'm sure you'll find a way to work your schedule. Sounds like you just need more information about what's ahead, and only a scheduler at Mayo can tell you that! Good luck, Merrill

Lisa, what were your tilt results? You said they indicated "severe pots" and I'm wondering what that means. Take care, m

Maybe syncope wasn't a side effect to the immodium -- but was a side effect of low blood pressure and dehydration, loss of electrolytes etc? I was going to mention the BRAT diet as well -- but I'll add a couple details (ripe) Bananas (which have the most pectin) (white) Rice (not brown--too much fiber, too hard to digest for now) Applesauce (my doc suggested applesauce and not apple juice, but I can't remember why ... you wouldn't want to do raw apples either) (white) Toast (same reason as the no brown rice ...) best, m

Why are you afraid to take immodium? It's GREAT ... I always take it when I get the runs (I have IBS-type symptoms too sometimes, the feast or famine thing) ... If you have gastroenteritis (or a stomach flu like thing), the immodium will either slow things down just a little or it won't work at all. The bug will pass, usually in 24 hours or maybe less. (I just went through this ). But otherwise, if it's the runs and no virus is involved, you need to get them to stop ... it's impossible to stay hydrated and to keep your electrolytes in balance--which makes the POTS symptoms much much worse. I always start with a 1/2 tablet, which is 1/4 the adult dose... and it's enuf to do the trick. Runs that lasts weeks? Time to call the doctor and ask what to do!

I'm Merrill! Hi! Too funny to see my name in headlines! No, I don't have any problems with carbocaine afterwards. And Stacey's right--as I wrote earlier, it doesn't stick around nearly as long as novacaine or other numbing agents. It definitely works and can get you numb enough -- How much you need will depend on how deep the decay is and how close you will get to the nerve as well. (It's a pretty individual thing anyway!) I'm pretty sure I've also had root canals using carbocaine ... Sometimes I've had to get a root canal before the crown--your dentist won't know in advance whether that will be necessary. (If you're in significant pain now, you may have a dying nerve and a root canal will be necessary.) Here's the trick: if you feel ANYTHING during any dental procedure, wave your hand and tell the dentist you want more carbocaine. Pain itself will certainly get your adrenaline going and make your heart race as if you'd mainlined epinephrine ... so make sure you're not in pain during the procedure! By the way, JLB, what "happens to you afterwards?" There's no reason to be afraid of going to the dentist (unless you don't have a good one) ... Remember, no pain. The only thing to contend with is the boredom of sitting with your mouth open, which isn't always super comfortable. At least you don't have to stand!!! As Stacey says, staying relaxed is key. Bring your favorite CD (chances are great s/he'll have a stereo and can play it for you) or your own cd player ... One more tip: I always make sure I take a full breath and exhale through my nose while he's giving me the carbocaine. It really helps me stay relaxed and get through that first icky pinch. Counting works during these seconds as well. Good luck ... and don't delay another minute! It's not worth being uncomfortable!

Hi--sorry you're feeling so poorly. Pain's no good for anyone, dysautonomia or not. Here's a string I started back in October; maybe it will help you. http://dinet.ipbhost.com/index.php?showtop...&hl=dental+work Best, m

What's "sed rate" and what does it have to do with postural orthosatic tachycardia syndrome?

Blackwolf, It would be great if you could figure out the source of your pain ... there may be a cause (other than dysautonomia) that could be treated at the same time you're getting relief with a med like neurontin ... If your pain is centered in your neck, shoulders, back, even legs, for example, you may be dealing with bulging disks, arthritis, etc in your cervical spine that Nina and I and others suffer from ... and physical therapy can help with that. (Leg pain/sciatica could be related to disk problems in your lumbar spine--or it could have a muscular source.) Have you had an Xray and/or MRI? Forgive me if I'm forgetting some stuff you've written in earlier posts ... And I do hope your doc gives you the darn meds--what's the harm in trying for a month!? I've never heard of anyone making the patient find the research ... grrrrr... Best, merrill

Tea, I just signed on for the first time in days and saw this thread ... I haven't read all the posts, but I just wanted to say how sorry I am that this hasn't YET worked out the way you want it to. Keep the faith, doll--something good will come of this because you will make sure that it does. That's the kind of beautiful person you are. As you would advise, do something for now that is soothing to your spirit--whether that means a warm bath or dining by candlelight or baking challah on a Tuesday. Take care, OK? m

Sounds like you got what I got, Nina. My report wasn't much different ... arthritis (spondylosis) and bulging disks -- (the narrowing is part and parcel of all that) and you had said you had reverse curvature too, yes? Glad they're letting you have the PT lying down for now ... that means lots of nice massage and manipulation and manual stretching where the therapist does all the work and you focus on staying relaxed, right? (My personal favorite part...) Don't head into those strengthening exercises too soon--but then, you know that already. (I just came from mine...and it's exhausting.) When do you see the orthopedist for follow up? One thing at a time--get some meds for that sinus infection and take 'er easy. Best, m

I take a ton of extra vitamins (esp. vitamin C & B complex & zinc) And I also take zicam (homeopathic cold remedy available at almost all drugstores these days). Here's a link to a conversation we had on this topic earlier this year; there have been others ... you can try a search and go back farther than last 30 days. http://dinet.ipbhost.com/index.php?showtopic=1447&hl= hope you get some relief too. Sleep as much as you can m

I thought y'all might be interested in this article: http://www.weather.com/activities/health/a...=tenday_trigger

Hi, Sue. Glad you decided to show your tweetie-bird face and say a real hello. Been thinkin' bout you too and hoping you're doing ok. I had just 2 days of weekday tv, and I must say, it can probably get addictive! I've always loved Ellen Degeneres and was glad to finally see her show, and I watched Dr. Phil out of curiosity but decided that if I were home, I'd be a regular there too. I hope you're able to stretch your legs too, though--are you able to get out and take those doggies for a walk around the block? take care, m

Hi, Stacey -- hope today is a brighter day for you and your family. Thinking of you and wishing for all the best, merrill

Thanks for your concern, Mary ... I had asked the pharmacist about the take w/food directive, and he said "to prevent stomach upset." A couple weeks ago, I asked my cardio whether it was true that beta blockers could be taken on an "as needed" basis (I had heard several people on this very forum say that this is how they take the drug), he said "yes." And that I could stop if/when I wanted to.(Actually, this was the cardiology fellow who told me this--the one who led me toward autonomic testing and original pots diagnosis--not the guy who said IST and put me on the beta blockers to begin with.) So gee, I dunno. I know what you're saying about not missing doses (and I feel likewise--esp. when it comes to antibiotics; I'm not all that familiar with other medications!) I guess I should double check the info I was given! Can I go to sleep now? My desktop isn't nearly as comfy as my new pillow!

Hi, guys. Missing everyone too ... Been down and out with a bad stomach flu the past couple days. Ugh. Sooo tired! Found out a goofy way that beta blockers work: missed a dose b/c I hadn't eaten in a gazillion hours (and direx say take w/food and I was not about to do that before I was ready ...) Some 40 hours later I was ready to try a little chicken soup ... and my heart went nutso standing at the stove. Very very intense! So I ate, took a pill, rested some more and then stood for a while later doing dishes etc and no ferocious/fast pounding. Woo hoo. Anyway, on the mend except for the exhaustion part ... So hello out there ... And here's a little hello to Melach and Herdswoman, whose humor I miss... Geneva, how was that colonoscopy? R U OK?

Can you tell us how you were diagnosed with "antibodies for M2 muscarinic acetylcholine receptors"? Also, have you consulted with a high-risk OB yet? There may be someone within your cardiologist's practice that you can talk to -- s/he may have worked with other pots patients in the past. I too am sorry for your losses; I've suffered them too, but I do not believe POTS was the cause. I may, of course, be wrong...and I will never know.

Quick update on miss emily ... She's struggling still with her recovery, but at least she's home now. She's coping with continuing diarrhea, little appetite, and weakness ... getting help with bathing and wishing the elephant sitting on her chest would get the F*#% off already ... (my word there... she's much too sweet ) But she's hanging in there ... said to say Hi to everyone and to thank you for your kind thoughts and good wishes.

I can't speak for others -- but I can tell you that I was diagnosed with POTS and now IST -- and where I live (in a major US city with great access to medical care), medical tests for hypovolemia are not readily offered; they might not even be possible. (Maybe at Mayo in Rochester or Vanderbilt ...) My cardiologists focus their care on treating symptoms with non-medicinal actions (suggesting compression hose, salt, water, exercises to strengthen legs) and beta blockers. I don't think I'll ever know for sure whether low blood volume is to blame--because the salt and water contribute to increased blood volume and overall well being. Does that make sense? m

Tearose, you are the BEST! What a lovely post ... very moving indeed! I'm grateful for your every post. Cheers right back at ya, m PS I wish I could smell real roses ... mine are buried in 2.5 feet of snow! But I can dream... Mmmm. By the way, did you notice how light it was outside at 5:00 pm? There's definitely hope, and it's right down the road. Be well, friend.

Hoo boy am I glad I never went through with the emg my neurologist ordered a few months ago ... the scrip is still sitting on my dresser! Sounds pretty awful ... and for me, wearing a wrist brace for a while helped with the carpal tunnel pain. Sorry you had to go through all this, Nina ... wishing you better days, merrill