goldicedance

Ernie, What a lovely and inspirational story to have shared with us. While I have been a member for several years, I never heard your story before. I hope that you have many more birthdays to come and that your remission lasts for many a year. Lois

Just wanted to post that I had my endoscopy and colonoscopy done today at Mayo Jacksonville. My pcp had no problem arranging for my admission to the hospital so that I could get IV fluids during the preparation for the colonoscopy and thereafter until my discharge the same afternoon. The GI doctor arranged for an anesthesiologist to be administering the anesthesia due to POTS plus my complete pacer dependency. For any of you with a colonoscopy on the horizon, you should talk to your pcp about your concerns about fluid loss due to the preparation. Lois

I'm confused, too. That study seemed to be conducted on healthy volunteers. It seemed to say that epogen was acting in a way comparable to ssri's (anti-depressants). My oncologist was very concerned when I went on a trial of epogen for POTS. I had used it during chemotherapy treatment. Persephone, could you explain more about this study? How are you doing? We haven't heard much from you. Are you progressing in your doctoral studies? Lois

I used octreotide for POTS for several months.I had great response except for the following: I developed sludge in my gall bladder which my have been caused by the octreotide plus I developed very high blood pressure. In some people, octreotide can cause diahhrea. I can't remember my dosage. By the end, I was taking a slow release that lasted a month. It is an extremely expensive drug. The injections are painless. I would give it a try. You can always stop it! Any questions please let me know. Lois PS I was travelling about 4 hours a visit to see Dr. Hoeldtke at University of West Virginia. I believe he was one of the first to pioneer the use of that drug. You can google on Robert Hoeltke and find out more information.

I don't think that you can make a diagnose of DI without the water deprivation study plus some additional 24-hour urine tests. The nephrologist diagnosed me with DI based on the water deprivation test (I was in the hospital and nothing was working). DDAVP works. However, when I saw my endocrinologist in Washington he referred me to an expert on DI at Georgetown University Hospital. After additional tests, he said I did not have DI. He said that DI is pretty rare. My regular endocrinologist said that there are not too many DI specialists around. I understand that alot of us here have problems retaining fluids. The more we drink, the more we urinate and then some. I had been charting my input/out for months at one point in my illness. DDAVP is helpful to us. I save it for those times when I am really in a hole. Many reference texts on POTS cite problems with retaining fluids. I have heard different explanations. I wouldn't rush to judgement thinking that you have DI --at least not at this point. What does Doctor G have to say? Lois

My only comment is start with the most tested drug and work your way up to Zofran if you need to. During chemo, I first tried phenergran, then Reglan and finally Zofran. I just think if older drugs work why take a chance on a newer more powerful drug. Good luck, Lois

I used to take Ambien CR almost every day. When I was diagnosed with sleep apnea, my doctor at Mayo did like the idea of using Ambien CR on a regular basis. I take 2 Benedryl (generic) at bedtime. It really helps me fall asleep. The CPAC machine helps me stay asleep. Lois

Flop, my friend across the pond: The situation here is the same with Lyrica. It is much more expensive than Neurontin. I was on Neurontin for some 10 years. My neurologist says thet the effectiveness of Neurontin seems to diminish the longer one is taking the drug so that the dosage needs to be increased. Insurance companies like the cheapest drugs, particularly when the patient will be on them for a long time. Provigil is another drug that is difficult to get approved. Lois

ditto The good news is......; the bad news is.... Aren't we are unique group? Lois

The doctor is a "she." Lois

I was on very high doses of Neurontin for POTS, including migraines. I was taking 3600 mg a day. I have now switched to Lyrica (150 mg twice a day). My doctors, including Dr. G, thought Lyrica was a much "cleaner" drug. Lois

Cheryl, When figuring out your total expenses, do not forget to tally (talley?) up your transportation expenses getting to and from the doctor. Include lodging costs if you spent overnight to get treatment. I would certainly try to get a letter from your doctor to document your income tax filing. It might be helpful to the doctor if you could provide him with suggested text to help him/her along. At the end of the day, if you don't claim it, then you'll never know. If you do claim it and you get audited and the deduction gets tossed out, you'll have to pay the additional amount. Lois

Michele, From what my prior POTS specialist told me: - 3 minutes is not enough to see the full POTS explosion (implosion?) - It is not unusual for the BP to rise as the HR is rising as your system tries to compensate for the change in BP. Then it falls (as Nina says). Thus, the poor man's TTT, should certainly last more than 3 minutes! Perhaps doctorguest could comment on this. Lois

In Dr. Low's 1995 (1994?) POTS article, he points out that there is a subset of POTS where the blood pressure can be high. Moreover, as we know increase in blood pressure is not the hallmark of POTS, rather it is an increase in heart rate. Moreover, I don't think one doctor's characterization does not unmake POTS. I always feel like I would have more respect for a doctor if she/he could just admit that he/she does not know or understand the mechanism of POTS. We would all be alot better off! Lois

If anyone needs a superb headache specialist (neurologist) in the Houston area, please let me know. My doctor got married and now lives in Houston. She is also familiar with POTS. Lois

Are you taking Florinef?? Watch out for the migraines with Florinef. Perhaps it is the feeling of no more head tingling that is getting to you with the midodrine. I always call myself the migraine queen. I did not think midodrine caused my migraines. For me, Florinef was the culprit. BTW, how are you doing with your CPAP? Lois

I go by this motto, if you don't try, you won't know. I would suggest getting a doctor's letter stating the medical necessity of airconditioning. A couple of years ago, after our new home was built, we deducted for a swimming pool and a spa. The pool was for exercising due to POTs; the spa was for neck and back problems. I had letters from my POTS doctor and my spine/neck doctor. The worst that can happen is that we will have to pay more taxes if we are audited. Keep in mind that, with the medical deduction, the amount of itemized deductions has to exceed a portion of your income (not sure whether it is gross or adjusted).

Like all who go before me, I too have mixed up doses. The worst was taking midodrine before bed. I had to sit up for 4 hours before I went to lay down. No need, I don't think, about the Neurontin and Zoloft. I actually have been instructed to take Zoloft in the morning. I take 250 mg at once. As far as Neurontin, I took mega doses 3 times a day. There are big 7-day a week 2 per day medicine cases. I used to fill up about 5 cases so I'de have them for a number of weeks. Somehow, I got more depressed filling up one every Sunday. This way I could get all my sadness out on one day! Lois

Actually, I originally has a ComfortGel Nasal CPAP Mask with Headgear. That one doesn't cover the mouth. One of the added benefits of the nasal cushions is the fact that I can read or watch TV with the cushions, somewhat I could not do with the CPAP mask. I originally started at a 6; now I am at a 7. I no longer feel the gush of air in my nose. That was kind of neat.

Good luck with you CPAP machine and mask. I too am a 7. I tried the Respironics mask; it left me bruised, sore, and wishing there was another solution. After following up with my doctor and allowing the requisite amount of time before I could try a different style, I switched to the nasal cushions. Wow! What a difference! No pain. In fact, I thought I had it on wrong so I had it rechecked. I was really delighted to find it is working well. I suggest you wash your mask and humifier tray with warm water and mild soap. That helps get rid of the smell. Let us know how you do. Lois

Maxine, Thanks for the correction. Also, please be careful in the Harbor Hospital on Hanover Street. The downtown neighborhoods can be pretty iffy. Lois

Maxine: I hope that you have an easy trip to Baltimore and find that it was productive. NIH isn't in Baltimore. I think that you are participating in a study funded by NIH and conducted by Hopkins. As a former Baltimorean, I caution you to be very careful of the neighborhood. If you are going to the Bayview campus, the neighborhood is a bit rough. If you go to the downtown Baltimore campus, the neighborhood is very very rough. Lois

It took me a while to adjust to Mestinon. I think you need to give it more time. Lois

Putting on my social security wizard hat: Medicare benefits begin 24 months after the established date of onset. I should point out that attorneys are very happy that there are delays in decisions...they really like hearings where the backlogs can be some 2 years. Why do they like it: I believe they can charge/receive 25% of past due benefits. Delays mean more $$$$ for the lawyers.