goldicedance

I've been to the Mayo Clinic, but not Dr. Grubb. Dr. Low was able to confirm that the medications I had tried were on target and to make some suggestions for my internist. The Mayo does really good testing and a second opinion never hurts. Basically, as far as the meds go, I think that all the posts here recognize that there are a finite number of meds that might work--some better than others; and not all meds are right for everyone. I have now changed to Dr. Hoeldtke and WVU and have had good results with Octreotide. So well, that I can give up midodrine unless I am being particularly stressed out as well as the beta blocker. The way I figure is that every thing is worth a try. Given that many of the posts suggest that Dr. Grubb is terribly busy and difficult to see even after you have the initial consult, maybe the Mayo is worth a try. At least, you can perhaps validate the treatment you are getting, get other alternatives, and so forth. Good luck!

Nina, My thoughts were and are with Stephanie and baby Kelly. I have put 2 times Chai in the Tzedakah box--one for mom and one for baby. I hope and pray all continues to go well. Lois

Florinef gave me migraine headaches that lasted for about 6 days; each time I was hospitalized. I refuse to take florinef for that reason. It almost killed me. I take Neurontin and zoloft as a preventative for migraines and it seems to have helped. Once a migrine has reared its ugly head, then I move to Maxalt and then DHE. I agree that you should go to a headache specialist to get a diagnosis as well as a "plan of attack" once you sense you are getting a migraine. Lois

I take Neurontin for POTS and POTS-related migraine headaches. I take 3600 mg a day. I guess it helps with the headaches since they come less frequently and with less intensity.

Jessica, Congratulations on your decision to move--either close to your parents or close to David's work if he gets that promotion. You sound like you hae a burst of energy and are a whirling dervish trying to get your house ready to "show." Don't exhaust yourself too much! Maybe you'll be closer to outside the Beltway so we can meet. I still haven't ruled out a meeting place in Leesburg! Feel good!

POTs with hypertension is rare, difficult to diagnose, but quite possible. I am frequently hypertensive when lying down and when I stand my blood pressure falls along with the blunted heart rate increase due to the ablation. Like my friend, Runnergirl, I was worked up for pheocry. I was also worked up for thyroid problems, catcheolmines (spelling), more 24-hour urine analyses etc. It was my cardiologist who diagnosed me with POTS in 1996 who really urged me to see Dr. Low at the Mayo Clinic in 1998 because of continuing problems. The Mayo has a state-of-the-art autonomic nervous system lab. There Dr. Low did sweat test, Qsart, etc. I thought the trip was well worth it. Good luck. Follow the yellow brick road and hopefully you will find the good witch who can wave her magic wand and make you feel better.

Kimberly, I travel 5 hours from Washington, D.C. area to see Dr. Hoeldtke. We must both have been driving him crazy with our ablations and their effects on POTS, So far, I am responding to Octreotide. Perhaps our paths will cross in Morgantown!

Our dear Julie, Oh how you are suffering. We here feel for you. I would definitely get another opinion. Bring your internist into this. How can you wait until September to see Dr. Grubb. I would echo what Sue says and definitely start going for second and even third opinions. Do you live in the same area as Dr. Grubb? Why does he not want you to come back sooner? Have you pushed him on this? I have found that you must be proactive in your care. You need to take the bull by the horns and run with it. You need to feel better and less anxious. Waiting four months is not a solution in my mind. If only I could wave a magic wand and make it maker. Actually, that is a sayng my wonderful internist uses when I am really sick with POTS and she doesn't know what to do about it. When she says that, I know that she is doing consulting with other specialists to find something that will help. Our prayers are with you that you start to feel better!

I think that can happen. However, we are not docs here so I would suggest you give your doctor a call to see what he/she says. There is no reason for you not to do so. An answer from an M.D. (yours) would help eliminate your concern or else result is perhaps a change in medication. If I recall, I did not do well on Toprol but I can't remember why. Good luck and let us know what happens.

I agree with Deb. I might also ask myself what are the alternatives? For example, if you didn't go to Dr. Grubb for a follow-up, who else can provide treatment to you. Also, it seems to me based upon what Deb is saying that it is very trying trying to get follow up care from the doctor and his support staff. I always feel with doctors that their support staff reflects upon the doctor. He/she sets the tone for the staff. Possibly the difficulties in getting answers when you call the nurses is designed to raise your blood pressure and help mitigate your POTS symptoms. That's meant to be a joke. I really can sympathize and understand how you feel. Are you anywhere near Morgantown, WV? And, if so so, you might wish to make an appointment with Dr. Hoeldtke. He is doing studies using Octreotide. If you have good prescription drug insurance and you are willing to see Dr. Hoeldtke, then I would recommend that course. Just a suggestion.... Good luck in seeing Dr. Grubb!

Morgan, dear...how sorry to learn of the passing of your poor kitty. I know how you must feel. Last August, our little siamese--Violet Ann--died at the ripe old age of 16 and, to think, she never got her driver's license. We still have her lifetime companion with us, Nescafe Snickers. He joins in sending condolences. My big suggestion to you is to get another 4-legged companion as soon as possible. About 5 years ago, our Schnauzer passed away after a long struggle with a pituitary tumor. Her death coincided with the time that I had just gotten home from the hospital because of POTS. That weekend, we went through the papers trying to find a dog. I knew I really needed to have another pal around the house. We were going to have a pup in our household by the end of the weekend. And we did! Being sick and suffering from the loss of my Carrie only compounded my grief. Our new Westie perked me up although she was quite a handful to train. People without pets don't realize how much they mean to us with pets. Our pets love us when we are happy, cheer us up when we are sad, and try to make us feel better when we are down. It is so sad when your pet dies. Be reassured that you did everything you could and probably more to help your kitty get better We're with you, Morgan!

To both of you....What lovely happy families! It is always nice to place a name with a face. I wish I was savvy enough to put pictures on a web page--I'de share some with you all. Perhaps we can have a big social reunion sometime!

Nina, All the best on your presentation tomorrow! I'm sure you will do well--with your vitality, personality and persistence how could you not! Let us know how it went! BTW, what was the subject? Daughter in MA this weekend too--looking at her new house as she gets ready to go to graduate school at Brandeis and trying out for an iceskating synchronized skating team! Be safe!

Have any of you found good ways to cope with the heat of summer other than to stay in airconditioning? Summer is a real drag!

Another question, Valiant... When you were in the hospital and the decision was made to keep infusing you with additional fluids, what was your input/output like? Were you negative in that you were "putting out" more fluids than you were taking in? One doctor thought I had diabetes insipidus because of the excessive fluid output when it was really related to the extensive amount of IV fluids I was getting. Would be curious about the rationale for the prettry continuous IV infusions... Please feel better!

I take credit for raising this topic to the radar screen. What I was really trying to get at is the following: Can you attribute your POTS flare ups or onset to a loss of weight? Or, a gain in weight? This is immaterial to your normal weight. I somehow see a correlation between sudden and severe weight loss to exacerbations of POTS. Any thoughts?

I agree with Futurehope that a female assistant should be in the room with you when you are alone with the doctor. Moreover, I would want to be sure that he is using technically correct procedures to accurately conduct the test and make a diagnosis. His testing procedure sounds a little too-makeshift for me. On the other hand, when I have had the test done, it is performed by a technician. You are slid into an incubator box and then heated up until your body reaches a certain temp. Then the technician pulls you out and takes digital pictures which are then entered into your medical records. Then, your next visit with the neurologist, you can see yourself on the computer screen. WOW! What an image! Think of the test as a day at the beach without sand getting between your toes.

Gee, Valiant Effort, You really have been through the ringer. Curious as to why you only take 2 midodrine once a day. I had thought (but then again I know things differ) that the dose was generally every 4 hours when you are upright 9or want to be) and even that could be bumped up again if need be. Now for the pacemaker--I had a pacemaker put in for bradycardia that was caused by a bad sinus node ablation. So that is a different story. If they are just talking about a pacemaker (without ablation) to help with the bradycardia, then, in my expert non-medical advice, might not be so bad. I would certainly get a third opinion or even fourth opinion before going down that road. Feel better!

Glad that you joined our group of POTers. Many of us have found that symptoms do progress and that they wax and wane. Go for a good diagnosis. Explore all avenues. Don't be satisfied with less than the best. You are not doomed to a life of nothingness. We all do the best we can to do whatever we can. Many of us still work but have good days and bad days. Life is not measured by paid work. Life is measured by the good that you can do for others and the enjoyment that you get from doing whatever you can be doing. Keep in touch with us so that we know how you are doing.

Dear Perfect Circle, Don't take your diagnosis as the kiss of the evil vampire. Deal with things that you can control. What is, is. But make the most out of what IS! You'll have good days and bad days. We all do. We are with you for support in whatever way we can. Live life to its fullest! Goldicedance

Wish you much success on the South Beach diet. I tried Adkins and had success weightwise. However, after being on Adkins for a few months, my POTS symptoms got really bad. I don't know if there was any correlation between the two. I think that I will look into the South Beach diet. However, it is interesting that doctors have different views on diets. One doctor told me that the high lievels of protein with Adkins was good for us POTers. Another told me that it wasn't. Others said that the "grazing" plan was good. Who knows? Only our own bodies know for sure. As they say, whatever floats your boat! Has any of my friends out here noticed that they feel better at a heavier weight? Feel better when they take off pounds. I am not referring to how we feel mentally about the extra weight gain but rather the physical POTs feeling. Would be very interested to know.

Tearose, I am so glad that you can move to a 1-story home. Fortunately, laundry is on the first floor. I only go to the second floor for beddy bye time. I very rarely go downstairs. I think you made a wonderful decision as the change should certainly be beneficial. Don't overdue the packing and unpacking. Goldicedance

The pacemaker was not put in to slow the heart rate because it cannot do that. The pacemaker was put in to alleve the bradycardia. However, the sinus node ablation was not complete so my sinus node sometimes goes off on its own and tries to accelerate. Hope that this is useful to you. Also, you may wish to check out the NDRF website and read the NIH study about POTS. It provides good information in user-friendly language and suggests some treatment possibilities. Good luck in your search... Lois

It's me again! The sinus ablation caused many problems in its own way. First, I developed bradycardia in addition to tachycardia. A pacemaker was the only solution for the bradycardia. I then got these other strange beats--junctional tachycardia. I tried living with that for a year or so by adjusting beta blockers, etc. Finally, I had an AV node ablation which stopped the junctional tachycardia, and then became 100% paced and dependent on the pacemaker. When my symptoms are bad, I still get these strange beats because my autonomic nervous system is telling my heart to beat faster but it just can't. My pacer is programmed to not exceed 140 beats/minute. However, once my HR goes to about 90, my Heart rthym goes bonkers--thus confirming that POTS is well and alive. Florinef was definitely the trigger for migraines even at a low dose. Midodrine gave me the goose bumps/itchies/chills but I could live with that, provided there wasn't a better alternative. I can't remember the dose of Florinef but it was low. I know that I started by splitting the pill so I only took half. As I had POTS with HBP, florinef sent the bp over the roof. Midodrine--I started 1 pill (5 mg) every 4 hours and then worked by way up to 10 mg (I think those are the sizes--I always get confused when talking about mg). As Nina says, reactions to meds are strictly individual. As my wise old doctor once said, everyone reacts differently to meds and that you can experience some effects that the drug company does not include. Have you tried Neurontin? I still take that along with Octreotide. I am taking 3600 mg of Neurontin and it does well in controlling migraines and I suppose helping with POTs. Have you had a clonidine challenge test to see whether you would be a candidate for clonidine? At one time, clonidine was a first line approach to treating POTS. Keep exploring! And, good luck. And, most importantly, feel better!

Dear Danelle, I join my fellow POTers in their advice and support. Hang in there, babe, as they say. I agree with Merrill (who incidentally wrote a wonderful message of support that I could never hope to duplicate) that you need to try the medications. Like Nina, I would say that Midodrine would be a first line attack given its short life span in your body. Also, as others have said, doses should start out small and then increase depending upon your symptoms and your reactions to the meds. At the beginning stages of POTS, life can be pretty scary. There are other meds that can also help with POTS--for example, neurontin, celexa/zoloft, clonidine, phenobarbitol, ritalin, octreotide, etc. You will find that there will be good days and bad days as well as good months and bad months. It is important, as I am sure you know from your nursing experience, to consult with various specialists. When I first developed tachycardia (back in 1994 before POTS was really on the radar screen), my internist sent me to an endocrinologist for a series of tests to rule out such things as a pheocrysitoma (spelling way off), as well as other endocrine disorders. The number of 24-hour urine collection studies were endless. She also thinks that Lyme disease was a particular trigger and put me on iv antibiotics. After several bad flare ups with hospital stays, the endoctrinologist was able to rule out Cushings/Addisons disease. I also have high blood pressure so that meds like Florinef and Midodrine make it more problematic. Florinef gave me horrendous migraines and midodrine gave me the chills and itches (which you can live with as long as it helps with the real POTS symptoms. I also was taking beta blockers to smooth out the sinus tach, help with PVS and PACs and help with the blood pressure. My EP said that given that my blood pressure was lower at night when I was in a supine position that the spikes during the day were not a real cause of concern. Keeping as active as you can also helps. Even though you sometimes feel that you would feel the best staying in bed all the time, that is probably going to worsen how you eventually feel. This type of deconditioning does not apply just to POTS people, as I am sure you know. However, with POTS, the deconditioning accelerates and pretty soon you are on a downward spiral. The road ahead can be long and winding but keep the faith! Eventually, I hope, you will find doctors who can help you. Don't settle for less than the best. Change doctors if you have to. Worse thing is for them to tell you it is "in your head." That is always the quick and dirty response. We're with you all the way! Good luck!