goldicedance

I have gotten some relief from procrit during the past few months. It has helped prevent near faints. I am going to have my third injection (I get it monthly, not sure of the dose). My doctor is now concerned about the longer term of effects of procrit. My hematocrit (?) is not 37. My doctor wants me to see a hematologist to discuss the effects. Here are my questions: 1. What dosage are you taking? 2. Frequency of the dosage? 3. Strength of the dosage? 4. Hematocrit levels? How frequently are they tested? 5. Who administers the procrit? Oncology center? internal medicine? cardiologist? self-administered? 6. Do you get a prescription for it so that it costs less than if you got it at a specialized center like oncology center in hospital. My questions might not be crystal clear, but I hope you get my drift. Thanks Lois

sorry you are having problems. Florinef put me in the hospital for 10 days due to headaches. Neer again. I assume that you didn't try the florinef and the midodrine together. Midodrine gave me tingly scalp but not goose bumps. Good luck at the Mayo Clinic. Have you tried Mestinon? The Mayo seems to often try that drug. Let us know how it goes. Lois

Amazing. I think I'll give it a try. I laughed about the yellow. When we go to an Indian restaurant, I am certain to get something that has tumeric in it as it always stains. I would love a copy of the referenced article. Thanks for bringing this to our attention. I'm in! Lois

Glad you made it down and up safely (no puns intended). The purple stuff is a bear to get off. You can always tell who has had that test. It seems like an awful lot of people have that sweat test. Makes you wonder if it is a big money maker. Hope you get some results that will be useful to you as you continue your journey! Lois

food: ramen noodles; canned soupes; pickles; pretzels; chips; salted popcorn; V8 (not low sodium)a hot dog every now and then start the day - before you get out of bed - take your beds and drink giant glass of v8. Do not spend the day laying down - that will get you even more conditioned. Use a reclining chair! Find a hobby to help you stop from counting all your heartbeats Avoid taking blood pressure every few hours unless your doctor orders it. You will become so focused on it that it might make you think you feel worse when you see strange blood pressure readings. Some thoughts Lois

I too would suggest Mayo Clinic. You really need to get the ball rolling as it is not so easy to get the initial appointment. I have been very pleased with the Mayo Clinic Jacksonville. Lois

I want to thank Sunfish and others who brought to my attention a B-PAP machine. I had been using the CPAP (Sp) for a year or so. I was doing ok with it. However, when Sunfish noted that she had been switched to that kind during her struggles with infections and found it "easier" I decided to broach it with my sleep medicine doctor last month because of my asthma. I had a new sleep study done which indicated that I might get better results from the BPAP. I have just switched and do prefer it. Thanks, POTSPLACE, for providing me with this information. Lois

Hi, Ernie... I hope that your trip to Rochester is going ok. I have not been on POTSPLACE for awile so I missed sending you my wishes before you left. Know that I am thinking of you as you continue along the journey. Lois

Appreciative as always to Dr. Grubb for the contributions he has made not only to us our patients but also for his contribution to the medical community for furthering and expanding the knowledge base on POTS. Cancellations are difficult particularly when one has waited a long time and has expectations for help. Please bear with Dr. Grubb...he is only one person. He has his own/family needs to deal with just as we have our own. I would add to this list of knowledgeable doctors in this area of POTS: Dr. Kusumoto, Mayo Clinic Jacksonville. He is listed on the DINET medical site. He definitely has an interest in POTS, which is certainly more than a lot of doctors. He is perhaps not at the level of Dr. Grubb but certainly has a good understanding of POTS and the difficulties we all have in management of the myriad of symptoms. Moreover, he has the other services of the Mayo Clinic available to him. Good luck at the Cleveland Clinic. As others of said in the past, I repeat that there is no magic bullet unfortunately for the treatment of POTS. It is more in the area of finding a cocktail of meds that might work and then tweaking them when necessary. False expectations are a reality for us, I am afraid. Unfortunately/fortunately many of us know more about POTS than many of the doctors out there. DINET is one of the many reasons for our expertise. I think that the most any of us can do is really go to the doctor armed with the information from DINET, including Dr. Grubb's well-done articles on POTS and its management. Sorry for my rant... Lois

I would first go to the Cleveland Clinic for comprehensive testing if that is first on your agenda. The Columbia doctor is very understanding, a good listener, and very knowledgeable about POTS. I found that things move very slowly in Columbia..i.e., go in, tell your story, hear doc's opinion, and then come back in a few months. If you are closer to the Eastern Shore, I would see about going to Katherine's doctor. I was first diagnosed back in 1996 by a DC doc (who no longer is in patient practice, tant pis!) and then confirmed by Mayo Clinic. The rest is history...medicine changes, medicine modifications, medicine tweaking. Now I see a doc at Mayo Jacksonville who is very knowledgeable about POTS and the management difficulties. I see Dr. Grubb about once a year for his input. Hope my suggestions are useful in making your decision. Lois PS At this point, you might want to consider keeping both appointments and then making up your mind -- provided your finances/insurance permit that direction.

I've had Dr. G as well as a rheumatologist tell me that I have symptoms of EDS - hypermobile. Last week, I had a terrible fall where I plopped down smack on front of my leg (from knee downward), somewhat twist my ankle, and land on the floor. I was extremely fortunate that I did not bang my head into our glass, brass, and metal front doors. I guess I did not break anything since I can still walk on it albeit with pain. I have the most horrendous bruise on my leg--it goes from just under my knee cap to my toes. Right now it is still in the very swollen phase and beginning to turn lovely shades of blue, black etc starting at the sole of my foot. Two questions: I always have bruised easily. My oncologist did a full range of blood tests to be sure I didn't have a bleeding/clotting problem. For those with known EDS: does EDS increase bruising due to problems with the connective tissue. My POTS is feeling worse. Could that be because my blood is pooling and remaining in my injured leg? Any thoughts? Any suggestions? Can you have a fracture but still be able to walk on the leg (with pain)? Right now I am using ACE bandages straight down my leg to my toes. My support hose would not fit over the swollen leg. Thanks for any light you can shed. Lois

Katherine, Like others here, I cannot truly express my sorrow and shock for what your sister (and her family) have been through. Words are difficult because fortunately I have never walked in her shoes. I might add, however, that my mother and my cousin each had stillborn babies in the last two weeks of their pregnancy. I was quite worried when I was pregnant about whether there was some type of familial predisposition to this tragedy. Your sister faces the daunting tasks of recovering both physically and emotionally. Neither are easy. I will keep her in my thoughts. The emotional recovery must be so difficult. When I was pregnant, my mother was adamant that I should not have a baby shower, prepare the baby's room, etc. She must have had in back of her mind how much difficult the whole situation would be if the mother had to come home to an empty crib, etc. Perhaps it was also atradition kept by our Jewish families....stores used to hold baby layettes, cribs, etc. for delivery when the baby comes home. Please relay to your sister my thoughts for her recovery. Lois Is there any connection between placenta abruption and collagen dysfunction (as in EDS)? Would be interesting to know.

Poor, Ami...What a load on your plate! Perhaps you need a visit to the Wizard, Oz, that is to see if he can fix you jaw. He helped the Tin Woodsman, right. I do hope that the docs can get your pain under control. Decades ago, my mom had problems with facial myalgia and she was in such pain. Has Mark been tested for sleep apnea? Would a pace maker help? I didn't think one's heart could stop for 4-5 minutes straight and still go on. BTW, how is your arm and your little banana friend? Please feel better. You don't want Mike to have to drive you around on his bike. Lois

Ernie, I haven't been to Rochester for a few years. I now go to Mayo Jax. Weather can be just freezing in Rochester in February. I don't know how much the Kahler costs. However, it's convenience can't be beat. I would get exhausted having to navigate a shuttle van to the Clinic each day. Then, factor in the wind chil factor, it becomes much worse. In for a nickle, in for a dime. In the whole scheme of things, the extra for the hotel doesn't mean that more when you factor in the chill. The ease in getting back and forth underground (albeit in a wheelchair, perhaps) is well worth it. I would still talk with Dr. Low's nurse or have your doctor in Canada talk to her or one of the other POTS doctors.I found that they have a harder time "squeezing you in for unscheduled appointments" then you would otherwise think. How long do you plan to be in Rochester? Email me if you think I can offer additional insights. Lois

Good luck at the CC. BTW, what is pernio? Lois

I get hives from extreme temperatures -- cold/hot weather as well as having my hands in cold water when cleaning up the kitchen. Can you use a topical cortisone spray or cream for the hives. That helps for me. Hang in there! Lois

Good luck at Mayo. I am not sure what the sweat test will tell you. When I have had it done at Mayo, Dr. Low said it was another indication of dysautonomia. You might want to speak with his nurse before you go so that you might have an idea of the tests he is proposing as well as the costs. I think he has it pretty much planned beforehand. If there is a test you would want and it is not on his protocol of tests, you also might want to mention it to his nurse. Besides the cost of the tests, an unknown is the amount of time that you have allotted to your stay in Rochester. For example, the last time I was there, he realized he forgot to schedule an appointment with a cardiologist. If I wanted to see the cardio, I would have had to stay around in Rochester for another week or so. Besides the extra costs of lodging, it would have been costly to change airline tickets. These are the thoughts I had. BTW, have you already tried Mestinon? This is one of his "big guns." Also, I gather from the cardio I see at Mayo Jacksonville that procrit seems to be added to the cocktails they are trying. Also as to sweat test and tilt table, did you have the tilt table where they measure sweat responses as well as do the valsalva (spelling) where you blow into a balloon. The Mayo neurology tilt table is done for only a few minutes whereas if you have had the cardiologist version of the Tilt table it lasts much longer. I found the sweat test (the one someone referred to as the "shake and bake" the worst of the lost. At first, when I was put into the box, I thought to myself this feels good; I can handle it--like being on a Caribbean beach (pretty good diversion from Canadian winters as well as the Rochester winter). After a few minutes, I felt horrible. They heat you up until you reach a certain temperature. I also found it a little embarassing that they were videotaping you the whole time. I hope that you have gotten a room in the hotel connected to the Mayo..the Kahler--there you can get a studio with a kitchenette at Mayo prices. The Kahler is perfect since it is connected underground to the Mayo. That way you can escape the brutal winter as well as easily return to your hotel room during breaks. It is also handy having that kitchenette. Hope you get some more results from the Mayo. Lois

I would bring to your manager's attention that the employee is creating not only a hostile work environment but also one of harassment. Managers are required to take action; otherwise, they might be subject to a formal grievance. It is terrible when there are office bullies! Take action. You have to look after yourself not only healthwise but also workwise. Let us know what happens. Lois

Perhaps you are getting junctional tachycardia? That's what happened to me a few years out from the SA ablation. If your symptoms are new, perhaps you can capture them wearing a holter monitor or a 30-day monitor. Let us know how you are doing, Lois

I had heard a number of years ago from the cardiologist who prescribed it for me in 1996 (before there was a generic) that the company was not happy with the sales of Pro-Amatine. The company thought that it would do much better in the possible treatment for other conditions. I remember back then my doctor gave me all the clinical trial bottles he had left just in case. I assume that with the generic drug on the market the company made its decision based on profitability. Too bad! Lois

Jason, I second what everyone else has opined. I do have a suggestion, though. Can Nicole spend any time in a lounge chair (like a LazyBoy type)? The more time she is bedridden, the more deconditioned she becomes. Even healthy people become deconditioned when they are bedridden. My first POTS doctor always cautioned more: While you feel better laying down in bed; paradoxically you are making things worse. He always urged me to spend as much time as I could in a lounge chair - laying back with legs elevated. Another suggestion....does your insurance cover medical air flights to a hospital that specializes in dysautonomia? She really needs to be seen by a specialist. Thanks for being a caring husband to Nicole. Hoping the New Year brings better heath.

OUCH!!!! I had 4 impacted wisdom teeth and 2 impacted eye teeth. My daughter also had 4 impacted eye teeth. Here in the States, the oral surgeon typically takes them out in their office also under general anesthesia. I recommend popsicles and ice cream@!!! Good luck to Mike! Lois

Melissa, Fish fish in the dish, I bet you know what my biggest wish is?? For you to start to get back to your baseline before this latest bout of infection. Keep swimming! Lois

Oh, Flop, I really am flipped out about the slow return of your kidney function. Keep the sissy coming! Lois

Hoping that you are on the mend! Keep your liquid gold coming! Lois