MightyMouse

You must weigh surgical risk in conjunction with your doctor. Use common sense pro's and con's as well. For example, if it is a mass in your abdomen, the likelihood of it being cancer left untreated is pretty devastating--moreso than the risk of surgery with POTS.

Yes, I've been under general anesthesia at least 10 times... during most of my prodecures, I was prepared with an arterial line in addition to an IV. This way, if I had an unexpected loss of pressure, they could bolster my bp quickly with blood volume.

I was cleared prior to surgery by Dr. Grubb. His suggestion to my surgeons was this: just do careful monitoring and handle me as they would any cardiac patient. My biggest risk that is different from the general population is a sudden drop in bp or heart rate, or vice versa. And, in comparisson to my risk of a severe allergic reaction to medication, my risk from POTS has been quite small.

Bottom line is to decide if the need for surgery to protect your health outweighs the surgical risks. Actually, most docs wouldn't recommend surgery unless they believed this to be the case for you.

Nina

Thanks EarthMother,

I can't have rye due to the gluten issue. However, in the past several years, most folks who treat celiac and other gluten problems have approved oats for consumption--the only caveat being that if the oats are processed in a place where they also process barley, rye or wheat, there may be cross contamination.

My nausea problems have been much worse at night--not sure what that's about. Planning on calling the doctor today....off to run to work.

Nina

I don't think that your doctor's term "full blown POTS" is necessarily a technical description. In looking up that set of words using Google, I've not found any information. Did you ask your doctor to describe what he means by those words as opposed to just saying you have POTS?

The only thing I can think of is that perhaps he meant that you have most, if not all, of the hallmark symptoms of POTS.

Nina

I suppose it *could* be the flu--but it's been 2 weeks and I've had no fever or other symptoms. I also was really careful not to cheat w/ gluten over the holidays. I even had stuffing made with rice bread!

Dan, I have a pretty good prescription plan--the most I would pay is 20$.

I'm thinking I'll probably call my gastro--I've been avoiding that because I KNOW that he's been dying to do an upper endoscopy on me. I've been seeing him for 3 years and thus far have managed to get out of it...

Oh well. A-scoping-we-will-go...hi ho hi ho

Nina

Oh my goodness, the past few weeks have been very queasy. It's so intense that I've been having chills. None of my normal stuff is working. I'm at 2 nexium per day--I have levsin sublingual, but I usually only take that for spasms and pain...this is more just rolling nausea. Ideas, anyone?

I seem to do well with Celexa--although it took me several weeks to stabilize. The first 2 weeks were particularly difficult, but most of the side effects disappeared after that.

There are a bunch of other SSRI's, including:

Lexapro, Luvox, Zoloft and Prozac

For some people, the only way you may find out what works for is to try something while under the care of your doctor. It's also possible that SSRI's just aren't the way to go for you.

And, there is also Straterra, which is an SNRI (acts on norepinephrine instead of serotonin). Some people with POTS have reported good results with it.

Nina

you might want to consider sedation dentistry...you'd be out during the procedures so that the failure of the local anesthetic wouldn't be an issue.

I have EDS III--I seem to do okay with local, although with my last surgery, it did wear off part way through the procedure. I also had a root canal done where they couldn't get me numb--in that case, the issue was actually not an anesthetic problem but due to swelling/edema in the area, which impedes infiltration of the drugs into the tissues. In that case, they gave me major antibiotics, created a small hole in my tooth for the infection to drain and left it alone until the swelling went down a few days later.

FYI, I've had TONS of dental work & periodontal work. Right now, I'm in the final phase of a 1.5 year process to replace a tooth that broke below the gum line due to resorbtion (my body just decided to take back the tooth). They needed to do lots of work to stop the resorbtion from invading my jaw bone--I've now had 2 grafts of bone matter in my jaw to build up the area enough to allow for the replacement tooth to be put in this February.

Nina

Proamatine is very short acting--only 4 hours in the bloodstream. I did well on it, but I was on a higher dose than you at 12.5 mg ever 4 hours while awake. I've taken as much as 15mg at a time. At some point, I was on both Proamatine and Florinef.

You should keep in mind that Proamatine may not be your optimal treatment--or may be able to work better in combination with other medications or low-tech treatments such as high salt intake, increased fluid intake, compression stockings, etc.

You may want to check out the "What Helps" section of the DINET site--and/or download the free PDF book from NDRF called "Handbook of Dysautonomia".

http://www.dinet.org/what_helps.htm

http://www.ndrf.org/NDRFHandbook.htm

Nina

Lisa, florinef was my miracle drug for several years. I only gained about 5 lbs--not too bad really.

Keep in mind that each of us may have a different set of medications and treatments that give the best effects...and, over time, what works for you may shift. I can no longer take florinef as it sends my blood pressure a bit too high.

Some people experience headaches when starting florinef. I didn't have any side effects other than the 5 lbs of fluid--but others have significant problems and stop taking the medication for that reason.

I'm so happy for your having found a knowledgeable doctor! Welcome to our board. Nina

I'm so glad that you'll be able to save some cash! We're they quick with shipping you the medications? Also, were the shipping costs reasonable? Just wondering.

Nina

Hello, and welcome to the board.

If you haven't checked out the section of DINET called "What helps", I'd suggest that you start there.

http://www.dinet.org/what_helps.htm

Also, the NDRF has a downloadable book, in PDF format, that discusses everyday-coping.

http://www.ndrf.org/NDRFHandbook.htm

As for phone support, Michelle and I have been trying to work something like that out, but for now I'd refer to you the NDRF, where they do have staff to answer the phones. Also, there are some support groups around the US where you may be able to hook up with other folks who have a similar diagnosis.

http://www.ndrf.org/groups.asp

Nina

Okay, it's "Black Friday", so I just thought I'd give one more gentle nudge that if you're going to shop online, many web retailers will donate a percentage of your purchase to DINET if you join iGive (which is free--and as far as my year long relationship, has never sent me any unsolicited email).

Happy shopping...and philanthropy! Nina:)

Welcome Beck,

another place to get treatment information is to download the free book from NDRF called "Handbook of Dysauntomia". Here's the link.

http://www.ndrf.org/NDRFHandbook.htm

Nina

I have, in fact, survived! Even managed to enjoy myself for most of the time.

Hope you all did at least as well!

nina

Happy Thanksgiving everyone! (and happy 39th birthday to me ).

Dan, I'm sending this post from my mother's house, where there will be 27 of my relatives here tonight. I've already taken 2 Aleve!

I am thankful for all my friends, including those of you on this board. With love, Nina

Hi Ling, just to clarify what Julie has said:

The autonomic systems are responsible for many of the "automatic" functions of the body:

gastric systems, blood pressure and heart rate control, partial control of respiratory functions, bladder function, sexual function, body temperature regulation, etc.

You may want to download the NDRF handbook on dysautonomias from the NDRF website to give to your doctor--and maybe to read for yourself. It reviews all of the areas that the ANS controls.

http://www.ndrf.org/NDRFHandbook.htm

Nina

Welcome to the board. I hope that you find a great deal of support here--and information too.

I don't have panic attacks...but I know that many on this board do have them.

At some point I got a DX of CFIDS (I think I was 24 or 35), which came before my POTS and NMH dx (NMH is a synonym for NCS)--I got the POTS/NMH dx when I was around 32. I've had mono at least twice, the 2nd time in my mid-twenties. I've also had chronic allergy and sinus problems. Oh, and a dx of EDS III, which is a collagen defect...and Celiac/Sprue, which is an inability to digest gluten (a protien). Yikes, in re-reading what I wrote, it looks like I've got a lot going on... I'm not that scarey in person! (well, unless you are my doctor!)

Some people do experience remission. Some don't. Most of us, however, have periods when we have less, but not zero, symptoms. I had one good year when I was less symptomatic--it was 1996. Some people, especially those with sudden onset, may eventually get better. Others, like me, have had problems from birth, and are unlikely to "recover."

I try to keep a good perspective and focus on other things when I can--while still being realistic (i.e. remembering my limitations with regard to how hard I can push myself without paying for it with days in bed).

Nina

Ling, your doctor is misguided to believe that POTS and related disorders cannot be completely debilitating...or even fatal. My friend, Brent Chance, passed away 2 years ago from autonomic dysfunction. His GI functions stopped (gastroparesis) and he lost a great deal of weight. Even with a feeding tube, he was unable to get enough nutrition. Eventually, his other organs gave out.

Personally, I had a one year period when I was unable to work. While my problems have not been as severe as some folks, I've had my fair share of major setbacks, such as my gall bladder ceasing to function, having longstanding GI related pain from very slow motility and spasms, nausea, multiple episodes of pneumonia, swallowing problems (Dan Jacoby can speak to that one, as his have been quite severe at times!), etc. Then, of course, there is my every day dizzies...

Nina

I've had chest pain with a normal echo and stress test. My cardio thinks it was either referred GI pain (I have a long history of delayed emptying and slow motility w/ pain), or nerve pain, or pleural pain.

Nina

Tim, are you sure they made it illegal to ship the drugs into the US? I think what they did was made it illegal to have the storefront places that brokered the shipments from Canada into the US; as far as I could tell it was still legal to either purchase the meds in person and carry them over the border or to order them online or over the phone.

Nina

Hi Ling,

just an example of how we are all different. I never get a fever with a bladder infection. I only get a back ache and frequent urination. I also don't often get a fever with a kidney infection--only if I've failed to get to the doctor when the back pain sticks around for more than a day or two do I get a temp higher than 99.

Nina

I haven't had eye surgery--however, this topic came up previously on another board. I believe the answer was that you are at no more risk than the average person... most of the risk is related to your vision.

If I'm not mistaken, you're not given general anesthesia with Lasik, yes? If you're under going to go general anesthesia you should make them aware that you could have a drop in BP and to monitor you as they would any cardiac patient. With Lasik, however, I think they use a topical anesthetic for the eye while they're working.

Check with the surgeon to find out exactly what type of anesthetics are used--for folks with POTS, that would be what's important to know ahead of time.

Nina

This is probably more than you *ever* wanted to know about urine, but here's a helpful link explaining what changes in color and odor can mean:

http://www.sparks.org/Library/HealthGuide/...asp?hwid=hw6580

Nina

Yes, urine that has a bad smell can be a symptom of infection. It can also be a sign of other things, such as diabetes. If it persists, you should see your doctor--and you should go sooner as opposed to later if you also have other urinary symptoms such as listed on

http://www.urologychannel.com/uti/symptoms.shtml

here's the list for adults:# Back pain

# Blood in the urine (hematuria)

# Cloudy urine

# Inability to urinate despite the urge

# Fever

# Frequent need to urinate

# Painful urination (dysuria)

# Malaise (general discomfort)

Certain foods can change to color and/or odor of urine--so unless you're eating these things daily, the issue shouldn't persist.

Nina

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