MightyMouse

Hey there Michelle, I did a little more searching on NDRF and still can't find the darned post. However, I did find one useful site via a few google searches. I also looked on epionions.com for any consumer reviews of Canadian pharmacy services, but found nothing. http://www.canadian-online-pharmacies.net/reviews.html Nina

I remember a thread by this topic a while ago, which I think was on the NDRF forum--I searched but can't find it Anyone have suggestions? Nina

Nicole, the SSRI's also seem to help some people with POTS--some doctors think that it's effects on the central nervous system have a mediating effect on the ANS... so, in addition to possibly helping you with depression and/or anxiety, it is possible the an SSRI could help with some of your ANS problems. Now, that being said, there are many folks who don't tolerate SSRI's very well as I'm sure some of them will be glad to tell you! If you've taken them before, than you probably also know about how the initial weeks of treatment can have side effects that subside as your body adjusts. Hang in there! Nina

A great example of the resillience of children! I hope that the teacher finally learned he was WRONG. A gracious adult would have also apologized... but perhaps that is too much to wish for. Nina

Hi Dan, I just applied--I don't know anyone who's already finished this particular protocol...except, perhaps Ernie on NDRF's forum? Not sure. Nina

To those that have joined iGive in the past few days, I extend my personal thanks! BTW, if anyone has questions about iGive, the security of making online purchases, or Network for Good, please let me know. I'll do my best to answer, or at least find out where to get the answer. Nina

Hi Everyone, I was thinking about the fact that the holiday season is fast approaching. I'm writing because I want folks to know about a few of the options for giving toward the growth and maintenance of this forum and the main site. DINET is a registered nonprofit--and is relatively "young" and has very little in the way of financial resources (i.e. such as the $$ to pay for the hosting of this site). A percentage of the dollars (or other currency!) you spend online can be given to DINET. I have been doing this via iGive for several months. Even if you only shop on the web ONCE, your purchase is added to that of everyone else who has selected DINET as their recipient. It adds up over time. Every time money builds to 25$, iGive sends a check to DINET. You can join iGive for free by clicking here. It is also possible to donate to DINET directly. DINET can now accept a credit card donation through "Network for Good." And, of course, there is the old-fashioned way-- a check. I've linked to the information page on the DINET main site: http://www.dinet.org/how_you_can_help.htm. I know that finances are tough for many of us--myself included. Donations of time are just as valuable The link above lists some of the other ways to support DINET (for example, translation of information into another language).

My neuro dropped my CFS dx once I got the POTS and NMH. From what she said to me, POTS and NMH made for a better explanation of my symptoms than CFS. She did keep my fibromyalgia dx. I never asked for more info than above. I don't have any friends who have progressive illness with CFS/CFIDS once the initial loss--that's not to say it can't happen. It may. I think there are probably many people who have true CFS/CFIDS...and then there are folks who get dumped in that category because their doctors have failed to figure out what's up, or it's an as yet unidentified ailment. However, with autonomic problems, I have had one friend die as a result of his GI system's motility slowing down--and then completely stopped working (gastroparesis). I know one member of this board who very easily could have died if he'd not taken some serious steps to deal with gastroparesis. As an added bit of info, I don't think I actually ever had fibromyalgia. I believe my pain and tenderness was a direct result of my spinal injuries sustained in a major vehicle accident when I was 10. Much of that pain disappeared after my surgeries to repair my spine. Nina

The test is not typically physically painful, except for the IV. If he faints or has a near faint, he might feel kind of icky, but once that happens, the test will be almost over. My test was only 15 minutes long because they could see what they needed on the readout that quickly. It really will help the doctors plan the right course of treatment and confirm the diagnosis--if they don't confirm it, than it may mean that there's a different reason for your son's symptoms that might require an entirely different approach than what you'd do for POTS. Nina

Hello Ling, I sure can understand what you're saying. While cats don't tend to always be as lovey as dogs, my two cats have helped to keep me smiling when things have been very rough. My oldest cat is now 14--she likes to sleep just above my head--and purrs if I just talk to her. Sometimes, she'll crawl onto my back (I sleep on my belly) and sleep there or just purr. The other one is a lilttle younger and more energetic--but also was the one who sat on my lap for the months I was home recouperating from my spinal surgeries. Made me not feel so lonely when I spent my days housebound--and giggling when they did silly stuff. My elderly kitty thinks she's a dog sometimes, playing fetch and chasing her tail. Isn't it nice to have unconditionaly affection like that you get from a pet? I'm so happy for you that you have something so positive in your life. Thanks for sharing your happiness with all of us. Nina

Tim, I'm so glad for your dad...and for you. My dad had the exact same location and I recall the heart surgeon saying the term "widowmaker" (like all the other stuff wasn't scarey enough!)--unfortunately, though, my dad had been having symptoms for months and did NOTHING until the big attack came. By that time, he was in such bad shape he was transferred to another hospital after they stabilized him...and then again to another where there was a surgeon that was willing to take him on (FYI, if you want to see his cardiac surgeon, just watch the new show on ...hmmm... I think it's Discovery Health Channel--the show is called "Second Opinion", I think--Dr. Oz). Glad, too, that it doesn't sound like your dad is going to need an open heart procedure. Your dad was smart to have gotten treatment as soon as he did! Nina

Hello Ling, Sorry your florinef experience hasn't been good. For me, it was a miracle drug the first time around--I was on it for several years. However, after a period of 2 years without it, we tried again, and it shot my BP way too high. The purpose of taking a medication is to help you be more functional on a daily basis. If it's making you worse, you might want to think about trying something else! If it were working, you would have started seeing some benefit by now. A note about stopping florinef: Some doctors believe that sudden discontinuation or dramatic change in dose could provoke adrenal problems. If you do choose to stop, you should do so by a slow weaning process. You may want to explore other medications and/or lo-tech interventions such as increasing salt intake and fluid intake, lower body exercise to improve venous return, compression stockings, etc. Nina

Nicole--everyone is different. If one drug doesn't work for you, another might (or might not). Proamatine works by constricting the blood vessels (so, making the pipes tighter). Florinef works by expanding your total blood volume (more flowing in the pipes) by tricking the kidneys to retain salt, which in turn means you retain more fluids. Epogen is another way of increasing volume--it causes the body to make more red blood cells. Nina

If I'm remembering correctly...I think Dr. Grubb told me that .3mg (total for day) was the highest dose he was comfortable using with patients (given, that discussion was 2 years ago, take this with a giant grain of salt). I know others who are on .2 mg a day, if that helps you any. If florinef isn't giving you the desired effect, there are other meds to consider to elevate the bp via expanding blood volume, such as epogen. With florinef, as with epo, you'll need to carefully monitor your bp and if it's too high, you need to get in contact with your doctor. Nina

You should speak with your doctor about this... I sometimes get puffy feet in the morning and they are sore to walk upon. Perhaps you are having "pooling" of fluid in your feet? Have you tried wearing support stockings (also called Jobst Stockings)? These help your veins return blood to the upper part of the body. Again, this is something that you should bring to the attention of your doctor. Nina

Hello again, my issues are sugar as much as gluten. I get some very tasty stuff from the Mr. Ritts bakery in South Philadelphia. He has a website where you can download a pdf of all the products--I think he has some sugar free stuff too? Anyway, it's great stuff and they're the nicest people. You can call a few hours or a day ahead of your order and they'll have it all ready for you when you get there. Nina

Tim, I will be thinking of you and your family and your dad. I remember, with my dad, trying to temper my hope with the realities of what the doctors were telling us...and also trying to keep upbeat when with my dad because he was so obviously scared (although he was not saying it--you could see it in his eyes and his expression) . How are you doing, Tim? Has all this stress caused your POTS to flare up?

Today is a new day! Every now and then, you'll be tempted and decide to go for it. It's not to be unexpected; so, afterward, don't beat yourself up--just try to start the next day with a clean slate. Nina

Tim, that's very good news. I'll still keep sending my good thoughts your way and his...surely, that can't hurt! Nina

Tim, unfortunately, I know what you're going through. My dad had a major heart attack 2 years ago; it was a long and slow recovery, but he is doing well now. I will pray for at least that good an outcome for your father. Sending healing thoughts your way. Nina

You can also try rinsing your sinuses with an isotonic solution of salt and baking soda (equal parts of each--about a tps per 8 to 10 oz. My ENT has me mix mine with a Rx ointment called mucoprin aka bactroban. However, he told me I could substitute a squirt of betadine--and I quote him here "there's no magic amount--just enough to change the color of the water to be a bit orange should be fine". The point is, betadine is a topical antibacterial and is preferred to using a systemic antibiotic. In addition to the above, I also use guafenisin, as others here have mentioned. Nina

regardless of what your local docs say, I would keep the appt with Grubb. You'll at least leave the appointment with an accurate dx, or suggestions about what to do to get an accurate dx. Nina

I never passed out during my test and it was still read as abnormal because of my huge leap in heart rate from 80 to 150 something. I happen to be one of those folks who also has a drop in BP, but some POTS folks don't have that, or at least it's not that dramatic. I would wait to hear what the doc says and then take it from there. Also, just an FYI, one should be off Florinef for at least 10 days prior to the test (I think I was asked to be off of it for 14 days prior to my NIH testing, and 10 days prior to my ttt at Columbia). Nina

not sure... I can only say for myself: I have terrible allergies, which is the primary reason I were my medic alert bracelet--I have major medication allergies. I've had sinus problems since my 20's and finally had sinus surgery last year. Nina

Yep, that's a very familiar feeling. When I was very young, I even had a hard time holding my spoon to pick up my cereal once a managed to get out of bed and get to breakfast. Nina