goldicedance

Pat, So sorry you are having to deal with social security disability claims. It is probably not unusual for your file to have been sent to Idaho. Sometimes, if I recall from my earlier days at work, files are transferred from one state that is experiencing a backlog of cases to another state not in that situation. That could explain why Idaho got your file. It seems like you are waiting a long time. My suggestion is to write to your congress person. That sometimes help move the file ahead. Good luck. Lois

Last summer our finances were really strained when we had already settled on one house but hadn't yet sold our home. We borrowed money on my insurance policy. When I looked over the paperwork, I discovered that many years ago when we took out this policy, we purchased a feature called "disability benefit." I called the insurance company and learned the following: If they determined I had a disability when I stopped working in 2005, then I would not be responsible for paying insurance premiums for this life insurance policy. Today I learned that I had been approved. I was determined to have a disability back to 2005 and thus I became exempt from paying the premiums back to 2005; however, the life insurance policy is still in force. Yippee! Bad news - I have a disability Good news - I no longer have to pay premiums I decided to post this topic since it is possible others out there who no longer work because of disability have a life insurance policy with a disability benefit. Lois

Has he been losing weight? I was hospitalized for about 10 days. I constantly put out more than went in, lost some weight, but not enough to count for the imbalance. There are some 24-hour collection tests that are also done. Be sure he sees a doctor who is a DI expert. Lois

Anna, The water deprivation test is one, but not the only, tool to diagnose DI. I underwent that test (I was hospitalized and was quite ill during the test). The nephrologist diagnosed DI on the basis of that test. However, I was referred to an endocrinologist at Georgetown University. He did additional testing and said I didn't have it. DI is pretty rare. A number of POTS people do have frequent urination, particularly during the night, and use DDAVP. But, that seems to be part of the POTS complex. Lois

Mary, That is the same med that my sleep doctor recommended. Perhaps we are seeing the same doctor. I go to the Mayo Clinic Jacksonville. PM me is we are "doctoring" at the same place. The benadryl is working cool for me. Lois

So sorry to hear the problems some of you had with the sleep study. Before I had the study, my doctor knew I had problems falling asleep so he ordered Ambien CR. That seemed to work. Also, the nurse was really good about my comfort--made the room very cool; got rid of their fancy comforter (which others had used) and gave me some clean hospital sheets. Also, I would be interested to know if any of you had the oxygen saturation test at home before you had the sleep study. Having the test before the sleep study gave my doctor valuable information. Every time, the CPAP machine's pressure gets adjusted, I have to do the oxygen sat test and then see him again. Lois

Recently there have been a number of posts regarding sleep apnea. I would really urge everyone to speak with her/his doctor about the possibility that you may have it. Perhaps you can convince him to have the first part that you do at home by wearing an O2 sat machine on your finger overnight. That way they can check not only you Oxygen levels but also your heart rate. If indicated, a full sleep study including a trial with a CPAP should be done. I can't begin to tell you all how much better I am feeling. No more multiple bathroom trips during the night, hence a better sleep in itself, and a way to help retain those fluids so I am not fluid depleted when I wake up. I finally feel that my sleep is better and I feel somewhat refreshed when I wake up. Moreover, to combat sleepiness during the day, a prescription for Provigil, which is an accepted use of the drug. Please investigate this possibility...just to close the loop on sleep apnea, and move on to other things. Lois

My sleep doctor did not want me to continue taking Ambien CR because of its addictive qualities. First he tried me on tramozone (spelling); however it made me feel woozy both during the night and day. Moreover, I gained about 7 pounds in 5 days--all fluid retention. Then he recommended I try benadryl. Now I am using good-old fashioned benadryl-two capsules at night. I fall alseep easily, get up about 1 time during the night, and don't wake up with a hangover. Did you know that benadryl is the addition to Tylenol that makes it Tylenol PM? Lois

Did you have the overnight oxygen sat study that you do at home before you had the sleep apnea study? Also, for both of you two ladies who just had the sleep study, did the technician see how you slept with the CPAP machine? That was an integral part of my study at Mayo. It's a shame you have to wait a few weeks to talk to your doctor. The Mayo protocol...arrive at 9 p.m., get attached to the gozillions worth of electrodes, and then go to sleep. At about 3 am, wake you up to see how you do on the CPAP and then boot you out at 6 a.m. However, the appointment with the sleep doctor took place that morning. I hate when you have to wait to discuss the results with the doctor. Press on!

I tried Coreg. No problems. However, I have found a do better on Labetalol, which Dr. Grubb prescribed. Give it a try...if it doesn't help, then you can try something else. Lois

I have mild sleep apnea. My numbers re O2 saturation sound similar to yours. In fact, I only slept about 4 hours. Then, the tech came in and put me on a CPAP machine. I slept for another couple of hours and was then out the door. The CPAP has helped me enormously...less fatigue, one trip to bathroom at night versus the 6 I used to need. I am surprised that the lab didn't try out a CPAP machine to see if your scores improved. If you do need a CPAP, I strongly suggest that you try out different style masks before settling on one. I find the nasal cushion one to be the best. It takes a while to get used to the machine and the mask. My husband says I sleep much more calmly. Also, it seems that I don't have to use airconditioning in the winter to feel like I am getting air in my nostrils. Good luck and not to worry! Lois

Before I retired, I always had a cup of caffeinated coffee in the morning on the way to work. I couldn't leave home without it. Lois

I am a bit puzzled by your question. Drs. Low and Grubb are perhaps the most knowledgeable in the US about POTS. I went to both. The Mayo Clinic works mainly as consults for you and your doctors back home. Dr. Grubb seems to have more of a patient practice. Personally, given the wait, I would try to make appointments with both. You generally need your doctor to request the referall, regardless of insurance. Have you checked Dynakids (spelling)? Good luck, Lois

Deucy, Exactly what type of accomodations are you requesting. Somewhere in my files I have a letter my cardiologist wrote several years requesting that I be permitted to work at home a few days a week so that I could continue working. I still had a full workload, but at least I was able to start and stop work when I needed to, put my feet up, and keep better hydrated. My work involved a lot of reading so I could do that while reclining. I also had to accomplish discussions with counterparts outside the U.S. Given the time zone differences, work at home was a better option. My agency provided me with a laptop, gigantic printer, high speed fax, telephone and computer lines. They were great. Are you asking for me than work at home? Most agencies have flex time. Work at home also enabled me to cut off a couple hours a week in commute time. My offer of consultation still holds. I have yet to hear from you. Lois

I must be overly sensitive...but please don't refer to breast cancer as being in remission. As a breast cancer survivor, I prefer to say that I am a breast cancer survivor. The breast surgeon and the oncologist do not refer to breast cancer as being in remission. As far as the treatment goes, it is aimed at destroying cancer cells--not putting the cancer in remission. Optimism is a big part of living with breast cancer! I realize breast cancer cells may appear in other areas of the body. I am a 2.5 year survivor!

I agree with Sophia. Melatonin is a hormone. I think that women of reproductive age should not take Melatonin. Also, I think that you have to be certain that you are taking synthetic Melatonin. Lois

As many of you know, migraines had been a terrible way of life before finding the "recipe" for success...i.e., preventing migraines in the first place. As many doctors now accept, migraines are part of the POTS complex. Here is what works for me (I now only have a couple of migraines a month and they respond to my first weapon in the aborting migraine arsenal: 150 mg Lyrica twice a day (had been on Neurontin 3600 mg a day) 250 mg Zoloft When I get a migraine, I find that Maxalt is the drug of choice for me coupled with percocet. I take a maxalt at the first sign of a migraine. If, after 2-3 hours, no relief, then take 2 maxalt. The list goes on...including DHE and finally hospital. The plan takes about 48 hours before giving up and going to the hospital for IV DHE. My headache specialist thinks that Topamax has more potential side effects than Lyrica and Zoloft. I assume that you are not taking Florinef. That drug prompted a migraine attack that lasted 7 hospital days. I will never ever take Florinef. Good luck.

Ernie...I had been suffering from severe diahhrea for some 3years. It was determined that I was VitaminD deficient. With the ingesting of massive amounts of Vitamin D - 50,000 each week for 8 weeks and now 1400 per day, the diahhrea has pretty much stopped. Occasionally, I will have an urgent bout where I better be near a bathroom. I no longer feel I have to wear Depends if I have to go out. Lois

Dani...I stand with you in our fight as breast cancer survivors! Lois

Sorry we have to meet here but welcome aboard. I too get very bad migraines and POTS. My headached neurologist told me the best thing to treat a migraine is not to get one. I have been on a vigorous medical regime to prevent migraines and happy to say it has been working. Before last year, I was taking mestinon, neurontin (3600 a day), zoloft (250). Now, I am still taking mestinon tr, zoloft but have switched to Lyrica 150 twice a day. Both my POTS specialist and neurologist believe that Lyrica is a "cleaner" drug than neurontin. I have also been told that the SSRP Zoloft needs to be taken at a high dose to help with POTS and migraines. I also have a plan in place to deal with a migraine once I feel it coming on. Maxalt with percocet works best for me. Then there is DHE nasal spray/injections, etc, and finally a trip to the hospital for DHE IV. So far, I've made it to step 4 (no trip to ER) for very bad headaches. good luck!

Ritalin is used for ADHD and POTS. I am not sure about Provigil, being used for ADHD. It is being used for POTS. Lois

And, Nina, how did Wilbur make it to the burbs of NJ from Missouri?

Hope you get some relief. BTW, have you tried Mestinon? Lois

You're right, Morgan. Have you had junctional tachycardia? For me, that developed about 2 years after the lst ablation and the pacer. Frankfully, while I am pacer dependent, I do feel better after I got rid of that junctional tachycardia. I am paced at 84. I cannot do telephone checks...in person only. Lois

Morgan, You and I are in the same boat with regard to pacers and ablation. I had to get my pacer when I developed bradycardia following a sinus node ablation back in 1996, before POTS became to come into its own. For the next two years, I could feel every heartbeat, etc--some felt really strange. My EP doctor did his darnedest to get the adjustments right. What seemed to help the most was when I go my AV node ablated. While that made me totally dependent on the pacer, it also got rid of the junctional tachycardia. I still get some bigeminy but that is nothing to what life was like before the AV node ablation. Also, is your top rate set high enough? or, too high? Finally, I believe that virtually all of us here are more aware of our heart and can feel its beats much more closely and discernible than the non-POTS person. I try not to focus on my heart beats or the beating as I would go bonkers. Lois