goldicedance

I too find it difficult to rid my house of things that I don't use anymore. Here are some tips: * If you have career clothes that you no longer need or can use, find a program that provides career clothes to women who are looking for a job but do not have appropriate attire. (I, too, was depressed when I looked into my closet and saw a world of Talbotts and Chicos clothes that I would no longer need because I no longer was able to work. * Donate items to a charity - that makes me feel good. * Try selling some things on Ebay. If you can take a picture and write a description, you can probably sell the item on ebay. One person's discards are another person's treasures. Selling items on Ebay provides one way of boosting your morale, particularly when you can no longer work outside the home. It provides you with a sense of "professional and personal" worth. If you get positive feedback, which is more than likely, your sense of worth and confidence will receive a big boost. Finally, you can earn some money...so that you can buy more things (just joking about that). Selling on Ebay also allows you to do things in moderation, when you want to and when you feel up to it. I started selling on Ebay when I got a digital camera and wanted to learn how to download and edit pictures. I hope my ideas will help you climb a bit faster out of your funk.

You are really dealing with the run-around. I first got sick in 1994. I managed to work 5 days a week until 1994 (?) when I just couldn't go any farther. I needed to be able to put my feet up; take rest periods, etc. I too worked for the government. My agency went out of their way to help me. I worked at home 3 days a week (could have been 4 if I was potsying more than ever. They gave me a computer, fax machine, printer, 2 telephone lines. I came to the office 2 days per week. I continued on that schedule until I finally had to retire in 2005 despite the accomodations made for me. Why are agencies so different? Are they saying that even if you worked at home you couldn't work a 5-day week and they need you to work a regular schedule? Has you POTS doctor written a convincing letter about why you need to work at home, including such factors as better controlled temperature system, reclining chair, nap, etc? Keep pushing! Lois PS I finally retired at age 56. If I would have retired in 2000 when I was feeling at the bottom, my pension would have been higher. Who knew?

I always put up with the strange feelings from midodrine - chills, tingling and itching scalp, etc. Midodrine enabled me to keep on functioning in employment for several years. I used to do alot of international travel--I would tell the head of the agency I was travelling with about my condition and the effects of midodrine..particularly, I didn't have lice, dandruff or any other scalp condition that caused me to itch my head. If I remember some of the reports from the clinical trials with midodrine, most of the people taking the drug had similar side effects. However, weighing how awful one felt without it, most opted to continue. Chill, tingling and itching should be the worst you feel from midodrine. The Chills actually were pretty good when it was 95 degrees out and you are wearing a sweatshirt. You gradual dosing schedule may be a very good idea. By the time you take the second dose (2 hours later), you are halfway through the impact of the first dose. The main thing is to keep track of your blood pressure and heart rate during your period of experimentation. Lois

Glad that they found the culprit! After I had my first sinus node ablation, my heart rate was going bonkers for a few days. The doctor told me it was from the ablation--irritant. I hope this makes you feel noticeably better. Keep us informed of our progress. Lois

I think the difficulty is that you are taking such a low dose (2.5 mg). I used to take 12.5 in the am and then 10 and 10 and sometimes another 10 when I was working. Frankly, I would try the schedule you are suggesting while checking my blood pressure every couple of hours. I wonder if your doctor will even know the answer unless he is experienced in prescribing midodrine. Lois

Based upon my experience with Midodrine, I would see no problem given the small amount that you are taking. I had been taking 10-12.5 mg every 4 hours when upright. As long as you monitor your blood pressure and as long as you do not exceed 40 mg a day, you shouldn't have a problem. Of course, you should check with your doctor unless DoctorGuest or another doctor who monitors this site has any information. Your best bet would be to check with your doctor. Lois

Question: For those of you with EDS, how exactly were you diagnosed? Did you have any biopsies? Was the diagnosis made on the basis of flexibility? bruising? certain scarring of skin? Thanks.

Oh, Angelika....you must be under such angst just from the ping-pong bouncing from one doctor to another. My advice would be to try conservative measures before surgery. Be strong...your family and friends need you. Lois

I too have been on mestinon since 2004. At around the same time I began experiencing severe diahhrea. I stuck to taking the mestinon because it was helping with POTS. I switched last summer to the time release mestinon, taking it at night. That seemed to help some with the diahhrea. The GI doctor told me to take Immodium up to 8 times a day for the diahhrea. Some help but still did not feel comfortable leaving the house in the morning because of severe symptoms and when I left later I wore depends. Wonderful. A few months ago, I found out I was vitamin D deficient. After the 8-week treatment, my diahhrea got so much better. I now take 1000 units of vitamin D daily. Lois

Melissa, My problem started in September 2005 and preceded gall bladder surgery. After the gb surgery, I developed a c-diff infection. I was hospitalized a few times for the problem. No one could find out why. I tried the whole post-gb treatment for the big D. Nada. During the chemo-radiation year, I had other fish to fry. It was becoming increasingly more bothersome for me.There were times I couldn't get to the bathroom in time. During the month preceding gb surgery and continuing until I had the Vit D megadoses, I went about 4 times a day and ultra liquidy. I began to wear depends when I was leaving the house. In September 2007 I had another GI workup at Mayo in Jacksonville. The GI specialist ran a number of blood tests and stool cultures nothing. A few weeks later, I started the massive Vitamin -D supplementation. That's when my problem seem to get better. I did find on the internet one refererence to diarhhea as a side effect of V-D deficiency. Perhaps this will be helpful. Lois

Thanks, everyone, for getting back to me. Melissa....thanks for your good information and offer. I have a respironics comfort gel. That is what they used at the Mayo Clinic Sleep Center so that is what the home health care delivered. I am now on my second bad cold in a month. I wonder if the CPAP machine could be a contributing factor? I have a Respironics CPAP Flex with humidifier. The nurse at Mayo told me not to use the machine when I have a cold. I'm think the air flow into my nose just hastens the cold germs into my system. I like to watch tv before falling asleep. I am hard of hearing and need tv ears headset to wear. Put that on over the mask is tricky at best. Oh, well, my problems are few in the scheme of things. I will forge ahead.

Lauren, what a coincidence. Once a week for 8 weeks, I took a single dose of 50000 units. I also supplemented that with 1,000 units a day plus what is in my women's once a day vitamin. I need to get my vitamin D level re-checked to see where I am at. Lois

I recently began using a CPAP because of sleep apnea. It is still difficult to sleep with this mask on my face. I wake up in the morning with red creases and even had a bruise. (Melissa, dear, what style mask do you use?) Despite the difficulty of using the CPAP mask (I have to wait 6 months before my insurance will cover a new mask), I have noticed a big improvement--the number of trips to the bathroom--have decreased significantly. Hopefully, I will see some benefit in "fatigueness" and forgetffulness. I would suggest that you may want to consider getting a sleep study if you have not already done so! Lois

I wonder how many of you have been tested for Vitamin D deficiency. I had mine tested in the fall and found I was painfully deficient. The endocrinologist thinks that is what caused my enlarged parathyroid and very strange patterns of bone loss. Once I got loaded on Vitamin D and on a maintenance dose, the big bennie I have gotten is a marked decrease in watery bowel movements. I have gotten less concerned about going out in the late morning for fear of not reaching a bathroom in time. You might want to ask your doctor about it. Lois

Don't use precious energy on cleaning!!! I try to do some knitting so I feel somewhat productive. A cuddly dog and/or cat adds such a great sense of calm and affection. You know they are always there for you even when the going gets rough. During POTS exacerbations, drink alot of V8 (the one with sodium). Ramen noodles are a good comfort food and high in sodium and take very little effort to prepare. I sometimes throw in broccoli and/or carrots (the pre-peeled baby ones). Buy frozen chopped onions and green peppers for stews, etc. Less exertion! These are "just some of my favorite things" to quote a famous Sound of Music song. Lois

I take Zoloft and Lyrica to prevent me from getting migraines. I am on a high dose (250 mg) of Zoloft. The Mayo Rochester's expert says that you need a very high dose of Zoloft for it to be helpful not only in preventing migraines but helping POTS. I guess the jury is not quite out about whether migraines are "officially" part of POTS. I have been on the high dose of Zoloft for about 7 years. I switched to Lyrica (150 mg x day) from 3600 mg of Neurontin . Thank heavens, my migraines are down to maybe one or two migraines. For me, Maxalt works the best in nipping a migraine in the bud. All the neurologists (headache specialists) I have seen are adamant that I start the migraine med as soon as I think I have a migraine. Lois

Hi, Amy.... I used to love hot showers before I became a POTSIE. I think that your reaction is typical of someone with POTS. I understand that a hot shower or bath, as lovely as that is, is a trigger for tachyniess and difficulty standing. I find this helpful: after you are finished showering with warm water, then you should shower with cold water for about 30 seconds. This helps counter the reaction to hot reaction we get. Finally, I find it mandatory to have a shower chair in the tub when showering. It helps protect me when I start feeling poorly. Other times the shower chair is great for shaving legs. I gave that up in favor of compression hose and the side effects of chemo. I hope this information is helpful. Lois

So sorry about your job, or lack thereof. Please check out the FMLA for coverage quests and other FACS. Here is a "Synopsis of Law": Covered employers must grant an eligible employee up to a total of 12 workweeks of unpaid leave during any 12-month period for one or more of the following reasons: for the birth and care of the newborn child of the employee; for placement with the employee of a son or daughter for adoption or foster care; to care for an immediate family member (spouse, child, or parent) with a serious health condition; or to take medical leave when the employee is unable to work because of a serious health condition. Good luck. Perhaps the 12-week leave will help you as you "heal." Also, check out "reasonable" accommodation. Are you eligible for SSDI or SSI? Let us know how you fare. I'll keep my fingers crossed. Lois

This topic may be controversial. Nonetheless, it has been on my mind for quite awhile. I know this forum has provided support for all of us POTSIES. I am grateful for the support which you all have offered as I have gone down the path of breast cancer, etc. Here is my question: To what extent do these forums serve an enabling function. That is, are we sometimes acting as enablers? Just a question to throw out...when does support cross the line and become enabling? Your thoughts, please!

He is an expert on POTS. He is a leader in treating POTS. He is compassionate in dealing with patients. He has a depth and wealth of knowledge few can ever hope to achieve. I can't say enough!!! Besides all this, he is a mensch!

Your daughter gets a well-deserved hug from me for her ordeal. Is there a reason why she had the tilt table test right after the endoscopy-colonoscopy? It would seem to be, based upon my experiences, it took me a few days to recover from the colonoscopy in particular despite the fact that I was hospitalized the day before the procedure to get IV's during the prep for the colonoscopy. It would seem to me that a having the TT right after the colonoscopy and endoscopy would skew the results. Not only is the patient recovering from the dehydration but also from the twilight anesthesia. I wouldn't want to have those back-to-back. Your daughter is a real trooper?

Only smooth sailing ahead, Amy!

The CDC recommends a Td (tetanus-diptheria) booster every 10 years. According to the CDC: Td is a tetanus-diphtheria vaccine given to adolescents and adults as a booster shot every 10 years, or after an exposure to tetanus under some circumstances. Tdap is similar to Td but also containing protection against pertussis. A single dose of Tdap is recommended for adolescents 11 or 12 years of age, or in place of one Td booster in older adolescents and adults age 19 through 64. At this point, I do not not what I had. Unless the Government was planning on downsizing, I would have gotten what is recommended. I note that the CDC recommendation is written in whishy-washy terms. Does one get a Td booster or a Tdap dose? I would bet most adults are not current on their Td or Tdap boosters. Good luck with your vaccination. Lois

I think that in the United States it is recommended that you get a tetanus booster every 10 years. I did a lot of international travel for the US Government in my younger healthier days and a 10-year tetanus booster was the norm. Are you sure you are getting more than just the tetanus booster?

Hi... I have been to the Mayo Clinic 3 times for autonomic testing and consultations. I would say you can count on about 7 days of testing/consultations. I do not think that inpatient testing unless you are admitted as an emergency or there is a compelling reason would be possible. My husband accompanied me. We had 2 airline tickets, hotel room with kitchenette that you could get to and from the Mayo Clinic without going outside, food, and transportation. This doesn't include the boarding costs for my doggie. It takes some time to get an appointment. Good luck. Lois