goldicedance

It was a long struggle to get Provigil approved. The approval came today. I have no complaints about my health insurance. However, Provigil was quite difficult to get approved. Got turned down based upon neurologist script and extra justification. Finally an outstanding POTS specialist in Ohio told me that recent research suggested that Provigil was good for combatting chemobrain. When I went to the oncologist, I got a new script. He provided the extra justification. It was a real hassle. No one should have to have had chemo to get this drug. Lois

Am wondering about the following: Do any of you take Provigil? Any help?? Does anyone taking Provigil = does your insurance cover this medication? Thanks, A Much Fatigued Frog

Try 2 cans of V8 in the morning before you get out of bed. Also try tilting your bed up before rising. A strong cup of caffeinated coffee helps me in the morning. For some caffeine brings on tachycardia. For others with POTS, caffeinated coffee in the morning helps. What does your doctor say about this?

Nina, I hope this avenue of exploration brings you relief in your suffering and some answers to your questions. Lois

Hi, Jesse...I am not sure I understand your Midodrine dosing. The "typical" dosing for POTS is 10 mg every 4 hours when you are upright. Also, my doc even told me to up the morning dose to 12.5 mg. Are you going to a POTS-literate doctor? Good luck, Lois

Oh, Morgan...I am so sorry to hear about the passing of your beloved Chloe, the Westie. Carrie, my Westie, sends you hugs and licks. I know Chloe suffered so. We had a beloved Schnauzer, Christie, who died at a very young age from the same disease as your Chloe. At one time, Christie was taking .2 of florinef every day. I shared mine with her. We also made the most difficult decision to end Christie's suffering. We thought long and hard as I am sure you did as well. It came at a time when I had just gotten home from the hospital after a 2-week stay. That weekend, we got another pup--our Carrie. It made all the difference. I couldn't stand not hearing the pitter patter of little doggie paws. I know a new doggie cannot replace Chloe, but a pup can help fill the void. We can only think that Christie and Chloe are frolicking with the angels, and maybe even telling tales about their mommas. Hugs to you, Morgan! Lois

What a wonderful special delivery indeed!!! How overcome you must have felt! Please tell him that I am in awe of his service to our country. I am so proud of our soldiers. He has my eternal thanks. May he return home safely in January! Lois

Like Nina, I would be very careful about this type of surgery. This may sound cynical: When you go to a neurosurgeon, their job is to do surgery (read $$$$). A few years ago, my husband had an MRI that showed herniated disc in his neck. He went to a respected neurosurgeon who said that yep he needed surgery immediately or he ran the risk of paralysis if he did something to injure his neck. He was scheduled for this surgery right after a vacation we had previously scheduled in Turkey. As luck would have it, he fell down a few steps--dislocated and fractured his shoulder. Quite a jolt to the neck! When we returned from Turkey, I pressured him into seeing a spine specialist at a Washington university hospital. This specialist recommended against surgery. He said that there have been studies showing that if you took a random group of people and MRIed their neck and back, a number would also show bad discs and would be asymptomatic. This doctor told my husband that it was more risky to have the surgery given the possible surgery complications as well as the possibility that he might even feel worse after the surgery. Moreover, he said that the terrible fall in Turkey was certainly a terrible jolt. This spine surgeon belonged to a society of spine surgeons who pledge to stop needless spinal surgery. I hope that this works out for you. But,please be very careful. I would get a few opinions about the Chiari surgery if the doctor recommends it. Lois

Perhaps comments about thinness result from society's view that the thinner the better and that people who are not thin are envious of thin people. They would not be jealous if they knew that some people had underlying medical conditions that cause thinness.

I noticed that we have not heard from Emily (Dancing Light), Lauren (Dizzy Dame), Nancy (Future Hope) for quite some time. How are you doing? Miss you all... Lois

Preface my remarks by saying that I am not a doctor. However the rate of infusion that you received seems pretty fast to me. At an infusion center, it took about 1.5 hours to get a liter of fluid. Why did the emt's deliver the infusion? Is that usual in your area? Perhaps your doctor could write an order for IV saline when needed and then you could arrange to receive it at your local hospital infusion center. When I feel really bad, I then get an infusion. Chat with your doctor about your needs. Lois

I had theQSART done in both Rochester and Jacksonville. And, they were the same. The Jacksonville test I had was done in 4/07. Perhaps when you went they did not have the autonomic lab functioning. Moreover, a cardiologist has joined the staff who is very interested in POTS. I was not too impressed with the neurology department, though. At the end of the day, you, Rachel, will need too make your decision. Lois

Just wanted to say that the Mayo Jacksonville does do the QVart testing, sweat test, etc. There is a new EP specialist who is very much interested in POTS. He actually is trying to get Mayo to set up a POTS clinic. I wouldn't rule them out. If you have never had all the autonomic testing, then go to Vanderbilt. If you can participate in their research at no cost to you, then it seems to be a no-brainer. Of course, at the end of the day, it's your doctor at home that bears the burden of treating you. It is essential that your primary doctor have the willingness to go down uncharted waters with you. Also, your primary doctor has to feel comfortable treating you using the drugs someone else has prescribed, especially if that specific drug is not used for the purpose it is being described. If you have already had the autonomic testing, then I would recommend Dr. Grubb. I think the emotional support coupled with the knowledge base helps affirm that you are not crazy. Good luck in your decision.

I would like to re-emphasize my point. Unless you have a primary care doctor comfortable in continuing to treat you following another doctor's orders who is out-of-state, it's a moot point. The Mayo Clinic Rochester provides limited to no follow-up care. They do the gamut of dysautonomia testing, talk to you about the results, and prepare a detailed letter to your doctor with their recommendations. A major problem for me with Rochester relates to the uncertainty of when they can get you appointments with other specialists outside their discipline. For example, the neurology dept. could get me into to seeing a cardiologist 2 weeks past when I was scheduled to leave MN. Pretty hard to stick around another 2 weeks at least. If you already had had the Tilt, the 2 sweat tests, etc and it is confirmed you have POTS, I would see Dr. Grubb. However, when you can see him once or twice a year, your treating PCP has to be willing to let you continue with his medications. It is hard for a doctor 900 miles away to treat you throughout the year. It seems like your doctor already has a pretty good understanding of dysautonomia. Do you know if he read Dr. Grubb's article that included a chart showing the various medications used to treat POTS along with their pros and cons? If so, he may be able to work quite well without seeing Dr. Grubb. Finally, not to be the pessimist (which I tend to me), there is no magic cure; no magic pill; no magic want...that will alleviate all your symtoms. Some may work for a time; some only in combination with another, and some are ok but the dosages need to be tweaked. I don't think I remember see a list of meds you take or have tried. You might want to refer yourself to Dr. Grubb's article to see if there are any that you haven't tried. I have seen doctors at both Mayo Rochester and Mayo Jacksonville as well as Drs. Grubb and Khurana. The docs at Mayo recommend different drugs that Dr. Grubb and others. The Mayo docs are not in favor of using DDAVP, IV saline infusions, and certain drugs to treat POTS and migraines. They did not seem to really think outside the box. The Mayo is generally great at diagnosing but how can you really expect that to serve as you doctors on a regular basis. If you want a doctor to confirm your diagnosis, then by all means go to the Mayo. At the end of the day, it is a decision you will have to make. Good luck, Lois

If I could cycle a block, I would feel grateful. If I could walk a block without getting short of breakand tachycaradic , I would be so happy. You have make such progress. No wonder you may be tired--25 miles cycling, running a mile...that would make anyone tired. You are blessed!

Sorry for your problems. Have you tried DDAVP? That sometimes works to help reduce urinary output. I use it in low dose (pill form) on an as-needed basis. That seems to help. Lois

I think that you need to get yourself to a doctor sooner rather than later. I am no doctor, for sure; but your symptoms seem quite severe. The fact that they went away gives me more of a fright...you could have had a serious event of some sort. Get thee to a doctor! Lois

I would go to a doctor who could actually provide guidance to your local doctors. I do not have any experience with being in a research study at Vandebilt so perhaps others could chime in. If they are only going to put you through a battery of tests but not later be in a position to provide consults with your physician, then I would choose Dr. Grubb. Have you looked into the Mayo Clinic at Jacksonville. There is a cardiologist there who is very interested in POTS. He is fairly new to the staff. Lois

Hope you are feeling stronger each day! What a load taken off your chest!!! Lois

Angela...That's the best new I've heard all day. I hope that helps you. Cheers, Lois

Good vibes to you, Nina, and to Pat! I'll keep both of you in my thoughts. Lois

I was just joking about the amount of garlic I was consuming. Wanted to see if someone was paying attention!

Thanks, doctorguest. I guess that I should not continue eatting a bowlful of crushed garlic each evening. It is great for preventing colds, etc...no one wants to get near me! Just kidding...thanks for your input. Lois

Has anyone ever been told that people with POTS should avoid garlic? If so, why? Thanks.

According to one source: Selective serotonin reuptake inhibitors (SSRIs) - such as fluoxitine (Prozac) sertraline (Zoloft,) and paroxetine (Paxil) - have been used to treat POTS. When effective, the tricyclics and the SSRIs appear to do more than merely control any depression that might accompany the dysautonomias. There is some evidence that they might help to "re-balance" the autonomic nervous systems in some patients.