MightyMouse

I did not have any side effects with Migranal Nasal (made by Novartis), which is a form of DHE. It used to only be available in the hospital in an injection form (or IV?). It worked great for me for a while. I had less side effects with Amerge than with any of the others in the same class (Imitrex, Zomig, etc.), but it definitely made my POTS /NCS stuff WAY worse for a few days. I always used to joke that the drugs don't really work at all on migraines, they just make you feel like you're going to die so that once you realize you're not dead, the headache doesn't seem so bad. Nina

The typical tests include a total blood volume (nuclear medicine study) and a tilt table test. Here's a link to the POTS symptom list: http://www.potsplace.com/symptoms.htm and here's the link to the NCS/NMH list: http://www.potsplace.com/NCS/ncs.htm#symptoms The major difference is that some people with POTS do not have a fall in BP, rather, the mostly have tachy (oh, and your doc is wrong, POTS is NOT that rare). NMH/NCS typically have faint or near faint episodes assoicated with a drop in bp of 30 or more mg of mercury upon head up tilt/standing. NCS/NMH may not have tachy. All of the above being said, I have a confirmed dx of both disorders, diagnosed during a TTT done at Columbia Presbyterian in NYC, Syncope Center. I was seen by their head of EP Cardiology. I have most of the POTS symptoms and most of the NCS symptoms. Many doctors believe there is overlap in the syndromes--probably moreso than those who think they are perfectly distinct disorders. You should probably download NDRF's free handbook on dysautonomia for an in-depth explanation in reader friendly language. http://www.ndrf.org/NDRFHandbook.htm Hope that clarifies things for you. Nina

The short answer is yes and no. Sorry to be confusing, but there is still some debate with regard to the *experts* about that. I happen to have a dx of BOTH. Go figure! If you haven't read through the info on the main DINET site, you may want to do so--it could help you to better understand the differing criteria. Also, you might want to check out the dx info on the NDRF site, http://www.ndrf.org Nina

I try to drink 2 liters a day--some days I do better than others. Nina

Yup. On some of my more symptomatic days, I get woozy sitting -or- standing. Only lying prone helps on those days. Dizziness is a primary symptom of POTS. If you haven't already tried the siimple stuff, you may want to do so: increase fluid intake & salt intake. Nina

Pamyla, It'll be a while, but I can ask my step dad next time I see him--he's a dentist. I used to work for him in the summers. I have sealents, btw, on my molars. Nina

The stuff they paint on is a "sealant". I would love to say that I know about sedation dentistry because I'm a genius... BUT, there are two commercials for two different local sedation dentistry practices that I hear nearly every day on the radio either on my way in to home from work. Nina

Hilf, I'm sending the item to you now. It should work. Nina

I'm feeling a little better. Doxy isn't really that strong, so I have an earache still, but my killer headache has backed down and I'm about half as queasy, which is a decent improvement. Thanks for asking. Hey, even if you have a viral thing going in your sinuses, the doc may be able to help you w/ draining stuff out, or giving you a non-medicated system to rinse with to keep things flowing...or even guafenisen, which thins the mucous and allows it to drain out. Nina

It is pretty normal after the vaccination to feel a bit sickly. The shot sets off an immune response. I usually get lots of aching at the injection site and feel really tired the next day or so, along with a bit like I'm coming down with a cold but not quite that bad. Nina

So glad to hear that you're doing well after your surgery! That's great news Be sure to follow the doctor's instructions about not lifting or overdoing it...and get enough rest; rest and your attitude are your best healers (I say that from personal experience). Nina

He's a really good guy...not the best conversationalist, but definitely cares about his patients. He uses some pretty nifty technology in his surgical procedures...I had a computer visual assisted surgery with a special map they'd made of my sinuses using a CAT scan and a helmet like item that helps with positioning. Nina ps. I was joking with him when he had that straight scope in my nose and he said I was "gunky"...I said something about being full of "nose goblins", which are better than having "tooth beavers" and he cracked up. How can I not like a fellow Ren & Stimpy fan??? Happy Happy Joy Joy Happy Happy Happy Happy Happy Happy Joy!

I didn't have any side effects, but I have several friends who stopped taking florinef because of what you are describing. Also, if you haven't been doing so already, check your bp when you're feeling aggitated... it may be running too high. Although some folks have no outward symptoms w/ hypertension, some may feel irrititble or aggitated. Nina

I went to my ENT doc b/c my ears were really bugging me. I had green mucous, but before that, it was mostly bleeding or bloody mucous that was often clear. The bleeding can be a sx of a staph infection, which I've had a number of times before. The other thing was that I could no longer do my sinus rinse routine w/o inducing lots of pain and pressure. I think you live w/in my area --Philly, yes? I use Dr. Joel Blumin at U of Penn, across from the hospital at 8th & Spruce. He's the one who did my sinus surgery last year. http://www.entconsult.org/bios/bioblumin.html The staff has been very nice to me there--and I've usually been able to get an appointment within a day or so of calling. Nina

An arterial line is like an IV, but in an artery. It's a bit invasive in that it involves a pretty decent sized needle in your arm and a special, pressurized bag that keeps the blood going in as opposed to out. They gave me a whole bunch of lidocaine to minimize the pain I had while putting it in... I know this much after having this done several times. I have a major nerve that runs next to or on the artery they like to use in the right arm--and every time they tried that spot, it REALLY hurt. All the others were done on my left arm, which was MUCH more comfortable for me. Everyone is a little different w/ regard to their anatomy. For many folks, it's no more uncomfortable than an IV. Also, mine was already removed when I woke up in recovery, so I really wasn't awke for the discomfort except during my participation at the NIH when I was FULLY awake for both times that I had the line in.

I can't answer your question about the diastolic pressure being too high--I can only tell you that I frequently have the same thing. If I'm remembering correctly, they would say your total reading has a low "pulse pressure", meaning there isn't much difference between the systolic and diastolic pressures. Here's some info: http://www.fpnotebook.com/CV113.htm Nina

Thanks Michelle-- I call out sick a second day yesterday and finally went to the doctor. No wonder I felt cruddy--have a double ear infection and a sinus infection, so I'm on antbiotics and keeping my fingers crossed that they work b/c tetracycline/doxycycline is kind of wimpy and the only one I can take. I got to stay in and watch the snow...and now we're getting even more. Our neighbor was very sweet and did our walks and driveway with his snowblower

Kimberly, that really sounds like something you should tell your doctor. I get transient weakness in my arms due to spinal problems and nerve compression, but it typically doesn't have a sudden onset/offset for me... I can usually relate it to breaking the doctor's rule about lifting beyond a certain weight limit (permanent 20 lb limit), of overdoing physical activity in general. nina

I am DX'd with both POTS and NCS. I have a very dramatic drop in BP that coincides with the rise in HR. My lowest conscious bp as measured during a test in a hospital was 30/--. I have lost consciousness a number of times, but mostly I get enough symptoms in advance to lie down before I crash to to floor (tremours, sweating, head rush, neck/shoulder ache, nausea, and dizzy/lighteaded). My HR typically slows just before I faint...so in combo with my very low BP, it's just not enough to keep my brain and vital organs perfused with blood...so the body protects these organs by putting me in the horizontal position. The body really is an amazing set of mechanics. It's a wonder that the majority of humans function perfectly rather than the minority with system glitches like ours. Pretty amanzing to me anyway. Nina

Hey there Timbo. I've had that procedure--I had a lipoma removed from my shoulder-blade area about 15 years ago. I had no problems with the local---and the procedure was a breeze. I suppose if your lipoma is large, it might be a bit more of an ordeal. Sadly, mine grew back and I now have to have it done AGAIN. The darned thing sits right where my bra strap goes and it's constantly feeling like I have a bruise on my back. I've procrastinated at getting it done; I got the referral for the surgical consult well over a year ago and still haven't made the appointment. Let me know how it goes for you. Nina, aka *Procastination Queen*

I thought I'd let you know that both niccotine and caffeine are stimulants with vasoconstriction properties (they can raise bp)-- some doctors actaully reccomend stimulants as a treatment for POTS (but not smoking, of course). My doctor DOES reccomend caffeine in moderation. I was told to take my florinef with my coffee. I no longer take florinef, but I am NONFUNCTIONAL without a cup of coffee. I only have one cup, and I generally do not drink caffienated beverages throughout the rest of the day...only if my BP is really sagging and I need an urgent boost, I'll drink a cola and maybe eat a salty snack to get the double assistance from fluid retention w/ salt and bp elevation with a stimulant. Nina

Hello Texas Lady, you may want to post your questions to the group using "new topic" button--sometimes when folks post questions embedded within another topic, they may not get as many replies because others may not know the question is there. Nina

Oh, also, here is a link to Chris Calder's site, where he goes over all sorts of things that can cause POTS-like symtpoms: http://home.att.net/~potsweb/POTS.html

I giggled a little because one of the autonomic guru's (Dr. Grubb) tells patients it IS all in your head. Particularly, the basal ganglia, which control autonomic functions. But, back to you, hmmm. I'm not a doctor--despite having wanted to be one as a kid However, you may want to consider being checked for spinal compression or chiari malformation. Also, there are many other things that can mimick some of the symptoms of a basic autonomic problem, including pituitary tumor. On your tests that ruled out POTS, were there any changes in BP or HR? here are some sites to check out: http://www.yvy69.ukgateway.net/1/home.htm http://www.cfids.org/about-cfids/orthostat...intolerance.asp http://www.wacma.com/ Lastly, not sure what your insurance or financial situation is like, but you may want to consider a trip to a place like Mayo Clinic in Minnesota, where you could have a comprehensive evaluation all in one stay (usually a week or so) and figure it out. If your symptoms are significantly interfering with your ability to function on a daily basis, quality of life, etc. (which I'm guessing is a YES), it might be worth the time and expense. I hope your find your way to an answer that has an easy solution! Nina

Oh well. Didn't make it through school. Left at the half way mark... and I've called out for work tomorrow. Running a temp now. Looking more and more like a bug and not the POTS. Doesn't it stink sometimes having to bother to figure that stuff out??? I do suppose, tho, that there could be much worse things in this world to have to cope with. Trying to think positively despite my head filled with snot! at least I'll get to sleep in tomorrow. Nina