goldicedance

Stacey, Happy Birthday to you!!! We understand how birthdays can also bring up thoughts of sadness. We bring you birthday cheers. I am really concerned about you. Have you exhausted all possible treatments, medications, doctors? Have you visited the Mayo Clinic, Cleveland Clinic, Vanderbilt, West Virginia University Hospital? My suggestion is that you leave no stone unturned. Hopefully, something will work and make you feel better. If you would like to contact me, send me an email via the forum.

You will be in my thoughts and prayers!

I find that caffeine helps in the morning. Also, have you tried to drink V-8--it is loaded with salt?

I sure feel for you and your family with what you all are going through. I've been to the Mayo (Rochester) and consulted with Dr. Low and others. Dr. Low was my "primary" at the Mayo. My cardiologist had made the referral to Dr. Low. The Mayo is great at diagnosing conditions and validating treatment or else making other suggestions. It is well worth the trip. I was coming from the East Coast and found it very useful indeed.

I know that this is easier said than done. Paradoxically while it feels better to remain in bed, in effect, from what I understand, you are becoming more and more deconditioned as anyone--even those without POTS--would become. That is why my doctor urged me to sit in a lounge chair with my legs up rather than to lay down in bed. Good luck!

Oh, how bad you must feel and oh how bad we all feel for your. Have you thought about going to a gastroenterologist or a neurologist to find a treatment for the nausea. Perhaps it is not necessarily related to POTS, but some other entity going on at the same time. Just a thought! Perhaps you should look into a career that is more sedentary and less strenuous, but that is still medically related. How about a transcriber of doctors' notes. I know someone who started a work at home business doing just that. Such a business would provide you with necessary rest periods. Since you have a medical knowledge, you would be one step ahead of the game. Let us know of your progress!

check out the Ticket to Work Program: www.ssa.gov and then click on Ticket to Work!

Oh, I can really feel bad for you. You need to first break the migraine. Have you spoken with your neurologist? When I had a long-lasting migraine, the only thing that helped was intravenous DHE. My neurologist says the best thing to treat migraines is not to get them. She has put me on a prevention plan: neurontin, zoloft, and ritalin. That seems to be holding back the number of migraines. Moreover, when I do get a migraine, the attack can be resolved using maxalt. It took a while to get to this system but it works. My doc also gave me a plan as to what medication to take in what order and what dose when I get a migraine: First maxalt and percocet; then double maxalt, then DHE nasal spray, then go to the emergency room for IV DHE. Please call your doc and get some treatment. You can't keep having migraines!!!

Sorry about the angry face. My finger went beserk. It should have been a happy face!

Hi, this is Goldicedance reporting on octreotide! I have been taking octreotide since December, through the expert care and service of Dr. Hoeldtke. It has made quite a big difference in my life. As my internist has said, she hasn't seen me look as well for a number of years. The biggest problem with octreotide is its cost. The monthly injection I am on and so is Denabob is roughly $2,500 a month, supplemented by short acting octreotide. Fortunately, my health insurance covers it; otherwise, being a mere mortal, I don't think we would have been able to pay out of pocket. I travel about 200 miles each way for my trips to West Virginia University Hospital. The first few months were pretty brutal as I had to stay there for a few days at a time to monitor my reaction to octreotide. Good luck! Let us know how it goes. I hope you don't have to wait a long time for an appointment. Please feel free to contact me for a more personal read on octreotide.

My suggestion: Call the Mayo Department of Neurology directly. You can probably find the number on the Mayo Clinic web page.

Congratulations to you, Futurehope. What a relief!

Any concern that cerefolin might permanently exclude you from long term insurance--given its use for Alzheimers. Ha, ha...with our problems how could we get or afford long term care insurance. Goldie

Try putting hyrdocortisone cream on the irritation. Also, ask the compay if htey have hypoallergenic patches. I know how itchy and stingy those patches can be. Good luck! Don't give up!

My husband had gstric bypass surgery last fall. He drinks 2 shakes a day. They need to be low in sugar and high in protein. They need to be made of whey protein. The nutrionist says that soy protein drinks can be harmful. Soy food is ok but soy protein may not be good. He likes ISOPURE. He buys COSTCO's store brand in chocolate and likes that and the price is pretty good. He also uses Dr. Adkins protein shakes when he goes out. Feel better!

Let me please be the first to warmly wel come you to your new group of good friends here at POTSPLACE. As they say, it's a shame we have to meet here this way (i..e, b ecause of POTS) but nevertheless you'll hopefully become completely endeared to us as we are to you. POTS has many symptoms, can go away, and varies sometimes on a day to day basis. You'll find that you won't be alone in your symptoms. I always am cold when others are hot..pretty good symptom in the hot summer except the heat sometimes makes us feel worse. There is a slew of medications to help relieve some of the symptoms. It is quite an exercise trying to find the right nix of meds at the right dose for you. We are here with you in the worst of times and the best of times. Feel free to rant about how miserable you are (hopefully you're not miserable) or when you feel that people don't understand you. WE DO!!!! On the other hand, we are also here to share the good times with. Well I gotta try to go back to sleep. Also, forgive my typing but I am wearing an elbow splint and can't more my left arm so the typing is not goot! The main thing is, don't give up! Moreover, sounds like you have found a good doctor. Have a happy and safe 4th!

Great news, Nancy! Keep us informed of your progress!

I go to Georgetown University Hospital and see a headache specialist. Effectively that is there headache clinic. I have finally gotten migraines under control.

I think that was a wonderful initiative. I've been meaning to write to the health editors of many "women" magazines--Family Circle, Redbook, More, First, etc to drum up some interest. Notes to health editors of local newspapers wouldn't hurt either.

Avoid the sun and the heat--that's the best advice. Stay in air conditioning! Many of us with dysfunctional autonomic systems have problems with sweating. If you can't sweat properly, you'll do miserably in the sun and heat! Besides, the sun is bad for your skin!

Welcome aboard, Corina! It's nice to know that you have friends all over the world; unfortunatelym, it's a shame we have to meet like this. What treatment are you on? Perhaps we can learn from you. I remember my former cardiologist sharing with me an article by Dutch researchers on exercise and POTS. In particular, I remember the section on crossing your legs when you are standing. It really helps! Keep on talking! We're with you all the way!

You've really been run through the mill. I've had two EP studies. The lst study is when they did an ablation. Afterwards, because of bradycardia resulting from the ablation, I needed a pacemaker. A few years later I had another EP study to see whether an ablation of the AV node would help with junctional tachycardia. The doctors thought it would. I thought about it for a couple months and then decided on the AV node. In for a nickle (bad sinus node - need pacemaker) in for a dime (ablated AV node - permanently pacemaker dependent though I have no junctional tachycardia. Don't rush into pacemakers. Remember you can never have an MRI because of a pacemaker unless science discovers how to make pacemakers without metal. Today and in the future, MRI's are being developed to help diagnose loads of things. I frequently feel disadvantaged because of it. Good luck! Goldicedance

Suggestions: V8 juice - has loads of sodium; pretzels; even salt tablets. I've been told that ice water is really good--a self-transfusion. Oodles of noodles has plenty of sodium. Just some thoughts, from Salty Dog

Hi, I'll preface my remarks with the statement that everyone is different, one should check with and respect the opinion of their doctors--in this case, with regard to flying. I have been diagnosed with POTS since 1994. I have flown a multitude of times since then--most international flights of significant duration. I wear compression hose, sit on the aisle so I can easily get up and walk around, stay hydrated, never drink alcohol, try to sleep on the plane and when I get to my international destination, take my medication, and try not to sit near someone who is coughing and sniffling. I try to elevate my legs--not always possible. I don't find the bulkhead seats that much better. I wish you luck in your plight with flying! Lois

I take Ritalin when I am very fatigued. I take the short acting Ritalin. I didn't like the extended release--I didn't get as good results. The Ritalin really seems to help beat brain fog in the morning. That does seem to give me a burst of energy, no horrible let down effect, and helps control Migraines as well.