goldicedance

I do, too. Florinef gives me migraines that land me in the hospital for a week at a time. Midodrine makes my head itch and gives me chills. Beta blockers make me really tired. Life can be a drag with POTS, but it beats the alternative. Keep searching! We all root for each other!

You are certainly not a wimp! What wimp could survive what you are going through? I agree with the last post. As "Migraine" said, staying in bed all day or most of the day aggravates POTs. Staying in bed most of the time would not be good for anyone even those lucky people without POTS. Lying down causes deconditioning which only aggravates POTS. Have you tried sitting up with your legs stretched out? For example, on a lounge chair? What treatment are you currently on? We're with you, Valiant!

So, so sorry about your POTS and the things that you are going through when you should be enjoying a better quality of life. Questions: Have you tried Midodrine? Do you try to increase your sodium--i.e., salt foods, salt pills, V-8 juice? Where did you try Octreotide? What kinds of reactions did you get to Octreotide? How about Neurontin? How about Celexa or Zoloft? I have been suffering with pots for 8 years...have tried numerous meds. Sometimes they work, sometimes they stop working, and sometimes they give me more problems. Keep trying....Don't give up! We're here for you?

Great study! I participated in it! I hope this study provides some good evidence as well as validation for how awful POTS can be!

Lori, Welcome to this club of elite people trying to cope with conditions that are not at all well understood by doctors. Sometimes the road is very difficult, but with the support of your family, friends, and your DINET friends, you should know that you can always visit with us, vent your feelings, and seek advice and support. Good luck with your consultations! Don't give up! With perhaps additions of medications and some dietary changes (i.e., extra fluids, salt) and rest, you'll hopefully be feeling a little better each day. Stay in touch with us! Lois

Nina, You are absolutely amazing. You have accomplished so much--amazing for a person with no medical problems--super amazing for you. You need to tell us all how you do it. What keeps you so motivated, in focus, and on target? You are indeed a role model for us all! AWESOME!!! Lois

I am on my second pacemaker. Some 40 years younger than your father-in-law, I was in the hospital less than 6 hours. The initial insertion is more difficult. The replacement is simply switching batteries, rather than installing leads. Good luck to you and your family!

On the other hand, I think insurance companies are the blame. If you look at what insurance reimburses the doctor, you c an see why docs need to find different ways to increase their revenue. This past fall, I was going to an EP who closed his office because he couldn't afford to keep it and his family going. He now works at NIH and is content on a government salary despite all the years of training and the gozzillions of tuitions he owes. Let's try to ease up a little on the doctors. There is plenty of blame to go around, I am afraid!

Ditto for the problems with health insurance and doctors...I am always puzzled and angry that it costs the patient more to have something done as an outpatient that it does as an inpatient even though it is obviously costing the insurance company less. It always is nice to be able to vent with people who have similar problems. We just keep on chugging. Keep a positive attitude although at times it is hard! We're with you all the way as we move down the POTS road.

WOW!!!! You really should be proud of yourself. Explore your options. Can you try freelance photography? Also, about going a little further and pursuing a paralegal degree. I understand that is a growing field and that there are opportunities for part-time work. You are so bright! Feel good!

I am curious as to how you all manage when your next appointment is 4=5 months away. It must be very difficult when you are going through POTS flareups. Can your primary care physician consult with Dr. G?

Oh, Danelle...I feel so bad for you. You had such anticipation of your visit only to find out that you did not get all the attention you deserve and need. Have you thought about an appointment at the Mayo Clinic? While the work-up takes about 3-days, you generally feel that you have gotten a good dx, quality time, and some good ways to progress. I think that some of the heart things he thought may be normal in the aging process. But, please go to a thorough cardiologist--one at a teaching hospital is really best in my way of thinking. Take it easy with the midodrine and the florinef. Drink plenty of fluids. Feel better!

Thanks, Michelle, for this information. The rheumologist suggested seeing a geneticist. Maybe I should follow up. I am waiting to get the results from a comprehensive blood test. Then, I'll have a better idea.

AprilMarie, So sorry that this is one of the bummer days. It happens. For a while one course of medicine works and then something happens and voila it no longer works. My suggestion for today: Sit with your legs propped up. Drink a nice big glass of V-8 and munch on a bag of pretzels while you watch a movie. I think that laying down all day in bed worsens the symptoms (although you might feel better while your so doing) because laying down may cause you to go to the bathroom more and deconditions you still further. Feel better! Your friends hear are rooting and praying for you! Lois

Thanks everyone for sharing your bruises with me! Actually, I did look at the US and the UK website. But---I didn't see where there really was anything you could do to treat EDS. I know the EDS group that involves thin arteries etc is certainly a problem. My bruises are humongous--I have one on my hip that is now starting to fade but I bet it was the size of a postcard. Have any of you tried Arnica salve to help clear up the bruises?

A rheumologist thought I might have it because he thought my joints were really flexible for someone my age. That was just a casual exam. I never mentioned the problem with bruising though he did find a couple of strange cigarette burn scars. I never got the blood test for it. The feeling at the time was there is really nothing that can be done. What do you think about EDS and what can be done about it or for it? I would welcome your input. Thanks

Does anyone out in Potsville experience humongous bruises--bruises that you don't remember being caused by a bump in the night? Ha, ha...Would be interested in knowing.

The Mayo sweat test is unbelieveable. First, while in your birthday suit, you lie down on a bed. Then they make a "bikini" out of towels. Next they sprinkle you with powder (I can't remember the color) and put some temperature gauges on you. Next they slide you into the "incubator:--that's the best way that I can describe it. You cook in there until your temperature reaches a certain degree. Once cooked, they take you out and take digital pictures of you. Whereever, you sweat turned purple. They send the digital pictures to your doctor for him to review. It takes about 3 showers to get the powder off of you. You can always tell when someone has had a sweat test by the purple powder that is the most difficult to wash off.

Swimming is reccomended by some for POTS given the gravity difference.

I take 250 mg. 2-100's and 1/2 of 100. I take it because of migraines as well as POTS and I think it helps. If you take it before bedtime, that may help with the grogginess. Give it a try if that is what your doctor suggests. BTW, I worked up to that amount gradually.

I think I was in there about 30-40 minutes. The main thing, though, is not how long you've been in the incubator but how well or poorly you sweat. Did you change color all over? Was your sweat test positive? Those are the important questions.

I developed asthma when I was pregnant. However, shortness of breath is also associated with POTS, I believe. Walking up hills, walking upstairs can do me in. Get checked real good for asthma associated shortness of breath.

similar effect using Ritalin. hope you're success continues. let us know!

Migraines are a downer. I think changes in "female" hormones have a big role to play in migraines. I also know that migraines are one of the conditions that form POTS. I am on a migraine regimen. As my neurologist says, the best way to treat migraines is not to have them. I take large doses of neurontin and zoloft. That seems to keep the migraines at bay. I no longer have the marathon migraines that put me in the hospital for a week at a time. I use maxalt when I have a headache along with percocet. If the headache persists, my doc gave me a schedule of when to switch to DHE injectables and so forth. Good luck with your pregnancy. Three children and one on the way is enough to give anyone a headache.

I can sympathize. My problem is at night--I can go numerous times. I use DDAVP periodically when things flare up. I too am curious about all the water. I think it is natural that if you drink so much in the morning and you are sitting in a car for that period you will have to go. Your bladder can only hold so much. Have you tried drinking V-8 in the morning--that may help because it is sodium-loaded. Caffeinated coffee in the morning may also help. Florinef will also help you retain fluids. I think that frequent urination is a simptom of POTS.