MightyMouse

BTW, I take the fenesin generic b/c it does not have sudafed in it, which the name brand items DO have (in addition to Entex, there's Duratuss--which is comparable). Most of the OTC "tussin" cold and cough remedies have some guafenesin in it too. Nina

fenesin (Entex is a name brand version) and mucoprin are both Rx items. My allergist has had me on this stuff for about a year. My ENT surgeon just had me start putting a small amount of the mucoprin into my sinus rinse--so far, so good. Nina

I take a 500 mg extract in soft gel form. As for E, I take 400 i.u., and then make that 800 i.u. during the target week. Nina

My Gynecologist has me on Evening Primrose for the week before my period...and Vitamin E for the entire month, doubling the dose in the week prior to my period. I've had no side effects, other than some good ones: bloating and tenderness isn't as bad as it was before I started her regimen. It's worth a shot a relatively low risk as long as you don't take more than is recommended. Nina

Oops, sorry about that--now that I re-read the post you started with, I realize that the florinef & proamatine were Ethansmom... I get easily confused Let us know if your doc writes the Rx for the test Nina

The basic overview of the article Michelle posted is this: Ablation can make things worse in some patients--much worse. For most people with POTS, treating the symptom of high heart rate is like only treating the last step in a very long string of steps the body goes through before getting to the high hr. For most of us, a better route is to work on building total blood volume by increasing salt intake and fluid intake, by tricking the kidneys into keeping more fluid (florinef), by assisting venous return via compression stockings, by increasing baseline blood pressure via meds (promatine, dexadrine, ritalin, caffeine)...etc. Also, long term use of some antidepressants seem to help stablize the ANS. There's probably more that I'm missing, but my brain is fried tonight... If you've not been tried on all of above or combinations of the above, then ablation is probably not something to think about yet. For most of us, the high heart rate is FUNCTIONAL--it's the protective mechanism the body uses to keep the major organs and brains protected with blood flow when ones blood pressure falls. By ablating the nerve(s) in the heart that tell it to pick up the pace, some people with POTS end up having more fainting episodes or near-faints because the heart can no longer shoot up the rate to compensate for unstable bp. Hope that make some sense. Keeping all that in mind, if all you've got going on is a high heart rate and no other problems (no falling bp, for example), ablation might be a decent option. At this point, I'd suggest finding a doc who knows ANS stuff, not just an arrythmia specialist. Ablation is not reversible and not a choice to take lightly. Nina

Oh...you should know that in order for you to get an accurate diagnosis on a TTT, you'll need to be off florinef for at least 10 days PRIOR to the test--and you should do so by tapering. Some docs believe that stopping suddently could cause some problems with the adrenals. Proamatine is a short acting med, so being off for only a day should be fine. YOu'll have to be off of caffeine for 24 hours too--and nothing to eat after midnight before the test... at least this was the protocol they used when I took the test at Columbia Pres. in NYC at their Syncope Center. Nina

Those test are only valid if you've been eating gluten-containing products for at least 14 days prior to the test--more time, however, is preferred. I had the blood test (which was negative, but I'd only eaten gluten for a few days after being off of it for 4 years). I haven't yet had the sigmoidosocopy (not endoscopy)...they need to biopsy the sigmoid colon to check for inflamation. Nina

Many people with ANS problems do well with caffeine in moderate amounts--in fact, one the treatments for pots is Ritalin or Dexadrine--both are stimulants, like caffeine. Others are very sensitive to stimulants and cannot tolerate them. I would see if you can start first with the TTT--it'll at least let you know if your body reponses are measurably unusual. Also, just becuase your bp isn't typically all that low, doesn't mean it wont be out of the normal range on the test; for example mine crashed completely on the test and that's very unusual for me in day to day life--probably because I drink a BIG mug-o-java at least a half hour before attempting to leave the house and the test required I be off of caffeine. Typically, my bp isn't just low--it's irregular. My heart rate also goes all over the map, but will have leaps where it stays high for bit, then drops...then back up again, over and over all day long. Depending on how your test progresses, they may or may not add the IV medications during the test. I would just ask your GP straight out--tell him /her what you think and ask him/her directly if you could get a TTT. If you've got a good relationship, you can bring some documentation with you. Nina

sea salt is fine. You just don't want iodized salt. It's about a teaspoon of each per cup...it's nothing that exact. If it burns, add more water. If it's too weak, add more mix (if it's too weak, it's a unique sensation, but you'll learn to recognize it). It's kept me in pretty good shape for a long time. Since starting rinsing, I've had much longer time spans between major infections. Also, it's really helped me LOADS during allergy season. A final suggestion is to shower before bed during allergy season, especially if you use any hair products. Those products tend to attract dirt, pollen, etc. which you'd rather not have all over you face and pillow whilst you attempt to sleep. nina

This site has a few links to articles... http://www.sciencedaily.com/odp/Top/Shoppi...hroat/Sinusitis and...because I'm a wine nut, I just had to post this one: http://www.winespectator.com/Wine/Daily/Ne.../0,1145,2158,00. Nina

Yes, apparently it's the large quantity of saline that washes out irritants, bacteria, etc. The little squirter thing can actually help to spread infection if you can't clean it thoroughly between uses. I probably use about 8 oz on each side of my nose per rinse. I make my own saline solution using equal parts of kosher salt and baking soda. My ENT has now had me add a bit of Batroban (mucoprin), which is an antibiotic ointment. He said I could do that or add a small amount of betadine--just a little squirt. He likes me to try that before using an oral antibiotic. So far, so good. Here's a site that my doctor suggested to me--mostly because we may start me on the SinuNeb system soon. Nina http://www.sinusitiscenter.com/studies.html

Sorry it didn't work for you Dan. What about something like Strattera, which addresses both serotonin and norepi? Have you tried any of the older anti-depressants, like elavil (I think that's in the tricyclic group)? Nina

I'm with Justin...the doc was serious. Rather than say "I don't know what's wrong" (thereby acknowledging that you still have an undiagnosed problem), he's been trained to say "there is nothing wrong because I can't find anything wrong." Don't be completely disheartened about it--there ARE some gems of doctors out there--clearly, this guy isn't one of them. If you haven't looked at the DINET physician's listing, you should do so to make your odds a bit better. Also NDRF has a physician listing too. Here are the links to both http://www.dinet.org/physicians.htm http://www.ndrf.org/physicia.htm Certain areas of the country seem to have more resources than others. Most of the doctors are in NYC, Boston, Baltimore/DC area, Toledo, and a few others at Vanderbilt and Mayo Clinic. I live in Philly and it's taken me years to find a team of good specialists--but it can be done. I've got a great Gastro, Cardio and Neuro now...along with a decent (but not great) family doctor. Sadly, my GREAT family doctor moved to Virginia last year and I had to start over on that search. let me know if I can help you in any way. Nina

Hmmm. Not sure if your issues sound exactly like POTS, but it certainly does sound like you've got some ANS issues. There are a whole host of disorders...including a problem with your sinus node that could provoke tachy, or even a genetic disorder that impairs the body's ability to appropriately handle certain chatecolamines, such as epinephrine and/or norepinephrine. A tilt table might help to shed more light on what's going on...but it may not answer all the questions either. I would think a TTT would be in order and then take it from there, in conjuction with your doctor. Nina

OH Yes, I questioned myself until the day I took the tilt table test and saw the results (that, and the doctor's surprised expression as I completely lost diastolic pressure but was still conscious--felt sick as a dog though). Up until that time, my family doctor kept trying to convince me it was stress/my type "A" personality, Chronic Fatigue, Depression, yada yada yada. After a time, I started to think..."well, maybe he is right...?" ...But then I realized I didn't have anything but the physical signs of depression--I was not hopeless, in fact, I am an eternally hopeful person and i really WANTED to get out of bed but my body just wouldn't play along with my wishes. I told my doctor I thought he was wrong--that I was having a physical, not a psychological problem. At his urging, I went for TWO psychiatric evals, both said the same thing: physiological symptoms of depression, but as a result of chronic physical illness that had yet to be determined. Both the evaluators noted my hopeful attitude, and my will to plug along despite feeling so terrible every day. That was so validating, but it was still several years away from my ultimate diagnosis became apparent. During those intervening years, I again doubted myself MANY times. Were it not for a friend to took me to the doctor and then to the TTT, I may have let the issue go for a while. As you all know, hunting for a good doctor (a good detective) is hard and tiring work. Nina

Hi Again, yes, you are right, some parents could probably bring their kids and you'd never know they were there. Unfortunately, the "no kids" policy that our groups had often stemmed from meetings in which kid noise took center stage. The babysiting service I had for our groups cost our company money in that we paid our teachers to come in at night and do the sitting. We were fortunate to have some donated monies to go for this service, otherwise it would have been out of reach for most of our meetings. If you plan on putting together a group of your own, may I suggest planning for the $$ any sponsorship proposals you might make ot funding sources. We got donations of space and of money from some interesting sources, including banks, local hotels, restaurants, clubs like the Elks, etc. Most banks have meeting space they'll donate, and in return, they get to write off the cost. Hotels sometimes donated meeting rooms and light snacks. Nina

As someone who used to organize and supervise 9 support groups for parents of kids with disabilities, I can speak from my own experience in that regard. I think you're asking a lot of a group to be able to operate effectively and have the kids in the same room at the same time. Many folks come to those meetings as the only "adult" conversation they get to have without their kids...or spouse...or others who may be taking care of them. Most support groups are provided at a free service, by individuals who volunteer their time, and often in a space that is donated, such as at a public building, a hospital, library, etc. Many of these locations have limitations they impose, such as cleaning of the premises, promises not to serve food, promises to vacate at a specific time, etc. Also, many of the speakers, moderators, etc. are there on a volunteer basis, or are recieving pay that is way less than the going rate. As an organizer such meetings, I can tell you it's very hard to make a meeting that's kid-friendly. Unfortunately, some adults just don't feel comfortable sharing difficult info, and/or listening to guest speakers when there are kids running about, crying, making noise, etc. With some groups, I was able to offer babysitting in a separate room...usually free of charge or sometimes for a very reduced fee. This seemed to be the best "kid friendly" possibility to please everyone. One of the groups came up with their own babysitting system that was free--attendees with kids each took a turn "volunteering" to babysit for several children. This meant that each month, one or two attendees would miss the meeting info, but in return, had many other meetings where they could focus their full attention. Hope I didn't offend you, but wanted you to be aware of what the issues are in getting a support meeting together. I suppose my message is that a support group is not able to be everything each participants wants, so the organizers often have to go for a "happy medium." Nina

Oh, Nancy, we must have been posting at the same time...I just realized you asked me a question...sorry The rinse lasts anywhere from a few hours to the entire day, depending on how badly congested I'm feeling. Here's the two systems I've used. I like the NeilMed one better, from my own experience, although the Salt Air system holds more fluid and is probably better in that regard. http://www.neilmed.com/ http://www.natlallergy.com/allergy/product...nus_Relief.html In combination with a mucous thinner, like guafenisen, and an antihistamine like zyrtec, it's really made allergy season tolerable for me. Okay...one other thing...my sinus surgery earlier this year has also helped a great deal as I'd usually already have a raging infection by this point in the season...so far so good let's hope it stays that way! Nina

I dunno Justin...I've been to Toronto and I love winter. That, and it's only an hour from the Falls. Can't beat that! Seriously though, I've heard from other Canadians that it's really hard to get to see a specialist in ANS problems; I think there are only one or two...I know of one who's in Montreal, but a friend told me it would be well over a year to get in, if at all. She's also had trouble getting to see a cardiologist. Nothing like that reality check to remind me that maybe paying bills for eternity might not be as bad as it seems right now. And, yes, Michelle, you're correct. I think it's always been hardest for me to cut myself a break--I'm better at doing that for others, but I'm learning. Nina

Thanks Tim. I'll just continue to write my checks for what I can afford. I agreed to 150$ this month, but after that, I'm going to keep going with my "divide and conquer" payments. Actually, I had a lawyer who offered to help me with a case about the disintegrated graft...he eventually dropped my case saying that he didn't think he could make money on it. Grr. Okay, there are some good lawyers out there, but I've not met any yet. Nina

Unlikely that it is the florinef. The amount of steroid contained in it is miniscule. Steroids usually will make you feel pretty happy, elated, extra energy (I ought to know...I've had HUGE doses of solumedrol to stop allergic reactions) in the first few days...and sometimes a bit quick to snap. I took florinef for years without noticing any change in my threshold for anger/frustraion. However, if it's working at bringing you BP up, and brings it a bit too high, you may feel a bit aggitated, headachey, etc... Also, there are lots of other things that may make you more likely to "snap"--including the fact that you've just had a bout with a viral tummy bug that's probably got you a bit worn down. Also, are you getting enough refreshing sleep? Other life stressors will add to that issue, including life changes (even exciting ones like getting a new job ). Lastly, as your son gets older and more active, he's probably getting more challenging...and asserting his own will on a regular basis (which may be very different from what Mommy knows is the safe or right thing to do ) Hang in there. Nina

Oh Dan, that stinks. I had the yawning, and nausea, and also my whole body was all "torqued-up" until about the 2 week mark. You did report one of my early wins -- sleep. I did get more refreshing sleep and was able to stay asleep longer for a good period of time. That wore off some time last year, but I don't think my sleep problem is fully POTS related--I think it's perimenopause. Hey, that's a good thing you don't have to worry about DAN! Try to hang in with Paxil if you can--it may help settle things down in another week or so. The only caveat being that you'll get some of the side effects back each time you bump up the symptoms. Nina

Dan, my allergist swears the hepa filter is useless. (we have one too) He has told me to shower before bed because it gets pollen and other allergens out of my hair so that it wont get all over my pillow as I sleep--and be aggravating to my sinuses. The allergist also had me cover all my bedding with mite covers (mattress, box spring and pillows) and wash everything, mite covers and all, in very hot water to kill dust mites. We've been using only washable comforters with a duvet cover for years now...and in the Summer, we use a washable quilt. Also, he also suggested not using any scented laundry products. I love the "good smelly" stuff, so that was the toughest thing of all. Nina

I use guafenisen--which thins the mucous and lets it drain. The other thing is to rinse with saline--like I've said before, not a saline spray...a saline RINSE. NeilMed and SaltAire both make systems that are reasonably priced and easy to use. I also take singulair and zyrtec every day. The only thing is that I take the Zyrtec at night because it does make me a little sleepy. Nina