goldicedance1

Glad you seem to have it worked out. When you see Dr. Kusumoto, give him my regards. My real name is Lois. I'm the one who got the Biotronik and had to have the St. Jude taken out of my abdomen and the Biotronik put back where a pacer once had been in my right upper side. As he told me later, I threw him alot of punches. All told, the surgery took him about 7 hours.

Fibromyalgia may be a possibility. Drugs used for POTS are frequently the same...SSRIS and Lyrica/Neurontin

On further thought, I might even consider going to the ER if I had a migraine for a month and couldn't get to see a neuro for a month and my primary was of no help. You can;'t take tramadol constantly.

Are you taking florinef? That gave me a n on-stop migraine. I will never take florinef! You need to take something right now to stop the migraine. There is something called DHE nasal spray that usually works well for an intractable migraine. Migraines can be part of the POTS syndrome. I started off using zoloft and neurontin (worked my way up to 3900 mg of neurontin a day); then switched to Lyrica. Now, I am using pristiq and Topamax. I rarely get migraines. And, when I do, I use Maxalt. You need to get something to stop the migraine other than a pain medicine. You might even be getting rebound headaches.

Sorry that you have to make that trip again. The good news is that hotels may be cheaper after the winter. Appointments should be easier in a few months when the snowbirds leave. I would urge you to try to get them to schedule all your tests and appointments now that you know what you need in a block whether it be a month from now or 2 months. More than likely you will need even a few more days after the few for which they have scheduled the appointments. You should probably allow about 7-10 days for your next visit, realistically speaking. That's what they tell you in Rochester and I think that is what they say in Jacksonville. Sometimes it's a matter as to how well your referring doctor has prepared the doctor you are seeing at the Mayo for your problems. If your referring doctor was concerned with the hypoglycemia and not the dysautonomic, that may be the reason the other appointments were not scheduled. I don't think they are picking on you. They do their best to compactly schedule appointments. Its actually computers doing all the scheduling, not people. The computer tries to fit as many as it can in. This time of the year--winter--Jacksonville Mayo is really busy--even for people like us who are "regulars" and use Mayo for all our medical needs. You are dealing with all the snowbirds who are in Florida and Georgia for the winter. There are a limited number of doctors and appointments. Like I said, I would wait for Dr. K, not for the neurologist. With the neurologist, he will schedule you for a tilt table test. I do not know whether they do the sweat test in JAX. And then, propose the usual cocktails..midodrine, florinef. and later possible Mestinon. He follows Dr. Lowe's protocol. When I saw him a few years ago when I moved to Florida, he even commented that I seemed to know alot since I had already been to Rochester in 98 and had seen Dr. Grubb. It was only by accident that I found Dr. Kusumoto and that was because of my pacer. I learned during that visit with him that he was really interested in POTS and seemed very creative in his approach to it. Like I said before, his nurse practioner is very knowledgeable as well. Stand-by is sometimes helpful for some tests but not often. Summertime they are usually less busy because of the heat. Be patient. I hate to throw water on the fire. But, no one really has an answer to the POTS problem. It is really a trial and error approach. See what works best. You can only be patient when trying things because you need to know how you react to each thing.

10 mg x 4 times a day. I guess it depends what you're blood pressure runs without it. I have the unusual type of POTS where I run high blood pressures. That made it hard to diagnose. My personal feeling--goosebumps, scalp tingling, chills--those are all very common side effects of midodrine. Believe it or not, I was in the clinical tirals of Proamatine many years ago. Again, my personal feeling--you put up with those things, if it gives you the ability to function. It enabled me to continue to function and lead a professional life. I used to tell my colleagues at work--if you see me scratching my head, it is not because my hair is dirty, nor is it because I have lice, it is because of the medicine I am taking. Elfie raises a good point..the "crash" that you may feel at the end of the day is probably the result of your return to your usual POTSY self. The good thing about Midodrine is that it is extremely short lasting. My doctor tells me that once you get used to taking it you can tweak your dosage. You may feel you need more in the am if that is the point at which your symptoms are worse. For me, generally, the mornings were the worse and as the day wore on and my body became more "fluid loaded" I began to feel better and later in the evenings worse again and tired as well. Listen to your body with midodrine. I must be the unusual bird but I am willing to put up with some strange side effects if it enables be to function. If I get no benefit in terms of being able to be upright, then that's a different story. Goosebumps, itchy scalp, chills, anxious feeling..heck that's nothing. Crampy feeling..hey, I can live with that. V8 is another good way to start the day--has plenty of sodium. A good cup of caffeine-laden coffee helps too. Some of tips that kept me going until I retired. I did have flare-ups, for sure. But I kept working until I developed breast cancer and being eligible to retire, I thought enough is enough. Retirement did help since I can take rests.

Take him up on the offer to see a cardio...Dr. Kusumoto is great on POTS!!!! There are a couple of others, I understand, with a real interest in POTS. I would put my $$$$ on DR. K rather than on the neuro they will probably refer you to. You probably know as much about POTS as the neuro. He knows alot but is not very creative. He seems to listen to what you are saying. But adds not much to the mix. Dr. Kusumoto is a cardio with a genuine interest in POTS. He reminds me a lot of Dr. Grubb. I would definitely ask for Dr. Kusumoto. His nurse practiioner is also super. Dr. Kusumoto is worth the wait. He sees alot of POTS patients. There is a general cardiologist who specializes in women's cardio issues who is excellent as well. Dr. Landolfo. Feel free to email me. I live about 60 miles from JAX so I am quite familiar with the Mayo and their horde of doctors. They do like to order tests, for sure.

Elfie, The Biotronik is the only pacer, I believe, that can do this. While it is a big step, it depends how much the bp drops bother you. My new pacer is expected to last about 8 years. That is a short span because I am totally dependent on it. For those who are not totally dependent, the Biotronik can probably go for about 12 years. If your cardiologist is skillful at using the Biotronik in terms of the tweaks that are necessary to adjust it to your specific needs and if your quality of life is really adversely affected be your BP swings, well then........

Florinef the all time worse for me....migraines landed me in the hospital for 10 days! The best....it depends on the tweaks.....the usual midodrine at first. When really bad flares, Octreotide. At worse flare, Octreotide gave me my life back. Interesting note....doctors at Mayo refused to administer Epogen because of its potential for stroke and heart attack risk. They don't even use it for those undergoing chemotherapy except as last resort. When I was undergoing chemo, Epogen was routinely given. I was using Epogen at May Jax for about a year for POTS until the Oncologist put his foot down. I then switched back to Octreotide. I used to take Octreotide when I lived in Maryland but stopped when I developed gall bladder problems from it. With no gall bladder, no problem using Octreotide. Once I restarted Octreotide, my friends could tell that I looked better and felt better. As far as beta blockers, Labetalol seems to work the best for me. Not many seem to use it here. I have dug myself out of a gigantic POT hole that started in October.

Midodrine does make my head feel itchy, gives the chills, etc. Never take it at night unless you know you are going to be upright for at least 4 hours. For those of you who said you come off of Mestinon abruptly--have you tried the slow release (I forgot what that is called). I take that at night at bedtime, per Dr. Grubb. That seems to work for me.

Good luck! Who will you be seeing? I hope you will be seeing Dr. K....in cardiology. He is extremely knowledgeable and caring, very interested in POTS, and has an extremely knowledgeable nurse practiioner. I found him way more helpful than the Neurology Department. There is another doc in rheumatology who knows quite a bit about POTS as well. There are some excellent endos as well. Let us know how everything goes. We're hoping you get the answers that will help you!

I can't. But you may wish to google on Biotronik and dysautonomia; Biotronik and Blair Grubb; This is far too complicated for me. You may be inrested in these articles. The pacer does raise your HR rwhen your bp is going down. Thatis different, I think, then other pacers I have had. The Biotronik has something called CLS (closed loop stimulation) which allows it to do this. The Biotronik is a German pacemaker. I am sure there are many other articles; I just don't have the energy to find them. http://www.ncbi.nlm.nih.gov/pubmed/19937372 http://www.medscape.com/medline/abstract/19937372 http://www.medscape.com/medline/abstract/19937372 I see you are taking Octreotide as well. I am surprised I don't see many others here taking it. Have you had any gall bladder problems with it, Corina? I developed a sludgy gall bladder and had to have it removed. It was worth it considered the value I get from the Octreotide.

For those of you with POTS and numerous faints, etc, and nothing seems to bring relief....have you asked your cardiologist about the Biotronik CLS pacers? Just a thought! They are difficult to adjust to get the right settings but many, including myself, have had good luck with them. Dr. Grubb is now using them for some POTS patients and so is my doctor as they can adjust the HR to autonomic changes.

It doesn't give me much confidence...the letter was actually dated January 2011. I used to work for the US Government. It would take umpteen revisions to finalize a letter at this level. Yet, no one bothered to check the date of the letter. They are going to do what they are going to do. What amazes me is that the generics are still being sold! The generics do not work for me so well.

I too have been diagnosed with fibromyalgia. The doctors believe there is alot of overlap with POTS, Before I moved to Florida, I was on, among other things, a regimen of Lyrica as well as Zoloft to help with POTS, included with my POTS cycle was also migraines. When I was referred to rheumatologist at the Mayo in Jacksoville, he indicated that he preferred for his POTS&Fibro patients Topax and Pristiq. Those 2 drugs seem to work the same as Lyrica and Zoloft for me. PLUS, I lost quite a bit of weight triggered by Lyrica.

First, Brye, good luck on your upcoming pacer implantation. I have had pacer(s) since 1996. I just got my newest on October 31. Do you know what kind --i.e., brand--you are receiving? I strongly recommend you discuss this with you EP before the scheduled surgery. The Biotronik-- the only one in the world -- can make changes in heart rate in response to changes in the autonomic nervous system. Dr. Grubb has been using this pacer on some of his POTS patients for a few years. My EP at the Mayo in Jacksonville has also been using it on his patients. The latest model is the Evia DT. I would be sure that your doctor explains to you why this model is not appropriate for you given your need for a pacer coupled with your POTS. After a follow-up visit with Dr. Grubb in 2010, he wanted me to have my pacer changer then to this new type of pacer. But, since my current device, still had a couple years remaining, my Mayo doctor was concerned about the risk of infection every time you have surgery. Therefore, I decided to wait until my current pacer needed replacing. The pacer recommended by Dr. Grubb is a Biotronik Evia DR-T. It requires a doctor who is skillful in making the various adjustments to tweak it to your situation. So far, I have had 2 adjustments done and am feeling much better. My specialist has been in contact with Dr. Grubb about the best settings. Dr. Grubb has even published an article in an EP journal about the Biotronik Closed Loop Monitoring system and its adjustments for autonomic system dysfunction. Google Biotronik I would be sure to speak with your doctor to be sure you are getting the best pace maker for your condition. I have bradycardia (brought on my a sinus node ablation in 1993 when they couldn't figure out what was causing my tachycardia and POTS was not as "well-known as it is today." I also am totally pacer dependent due to an AV node ablation due to junctional tachycardia. The BiotroniK Evia (and its Cylos) is also the only pacer that monitors your pacer every night to be sure that it is functioning properly. I have a little device on my nightstand. I don't have to do anything. Everynight this device checks my pacer and is able to tell if it and my heart are working properly. If it detects something out of sort, it sends an alert immediately to my doctor. Every week, it sends a weekly recap to my doctor telling him that everything is working well. Gives me a bit of assurance. Please feel free to get in touch if you would like some more information.