Eli6596

Persephone, You have given me the courage to step out of the closet. Last year after the flu shot, my POTS symptoms really took a nose dive. It took me at least two weeks to get back to baseline. The "real" flu would probably leave me with permament damage. I know it is a complete gamble not to get the flu shot. Karyn

Lauren, It does sound like you could have reflux, but your doctor should be the one to make that diagnosis, as you know. Even though your doctor is gone for 2 weeks, he or she will have another doctor "covering" for them. I would recommend calling the office on monday to describe your symptoms. You could even ask if a trial of over the counter prilosec, or something else would be OK. I have reflux and have swallowing problems because of it. I recently started prilosec and it really helps. It kicked in for me within a few days. I know that digestive problems are associated with dysautonomias, but has anyone's physician acknowledged that our reflux is linked to POTS? Gwedolyn, I really like your list. Thanks for sharing it with us.

Hi I have never studied at a desk at home. Since childhood, I have studied while sitting or reclining in bed. My dad used to always think I was wierd to study in bed. In retrospect, it may have been an early telltale sign of POTS. Since my pregnancies, I am so much worse. Now despite tons of medication for POTS, I need to elevate my legs and walk around periodically to get through 45minutes at church or a movie. Driving more than 30-45 minutes is not possible because I have to sit straight (not elevate my legs). I am grateful for having the above function though. I know it could be worse. Karyn

Hi Vanessa had a good point. Make sure you are wearing the correct size. When your weight changes get them refitted. Also, I think getting a new pair every year is wise because the elastic might get stretched out from frequent use. After wearing them for years and washing them in Woolite, I was finally told that Woolite breaks down elastic. For all of the above reasons, I erroneously thought my compression stockings were not working anymore. I don't think that I have ever developed tolerance. They really do help me on my "bad days". If you are going to Disney World, ask about a special pass for the disabled that could allow you to jump to the front of the line. My children want to go to Disney World, and maybe we might go when it is not too hot. I bet motorized scooters might be available for rent down there too. I saw a recent report that shows that even young, healthy volunteers had an increase of their heart rates to the high 100's, so I know I will forever avoid the rollercoasters. I get motion sickness anyway. Karyn

Hi Ramakentesh, Thank you for this fascinating information! I am so grateful to researchers like him. Unfortunately, the time that it takes to develop a new drug is several years. I have seen some drugs in neurology take more than 10 years to be tested, and then approved by the FDA. I don't mean to be a party pooper, but I just want to make sure that no-one thinks that a new drug would be available quickly. Thanks again for the info. Karyn

Sunfish, I find the multiple terms for one disease to be annoying. I think that some of the problem stems from involvement of BOTH cardiology and neurology in this field. Each field prefers a label for the same thing. Also, the terminology keeps changing, and it is hard even for health professionals to keep up with the new lingo. The American Academy of Neurology might be able to suggest guidelines which most neurologists might follow for terminology, but then the cardiologists might never see the guidelines or ignore them. Karyn

Oh yeeeees, I know what you mean kitsakatsa. That is so funny. The longer I stand to try to decide what to buy, the harder it gets to make a decision. I am trying to learn NOT to buy anything when I get that brain fog. I too must just walk away! I have found that the secret to getting help anywhere, including Walmart is to bring my seat cane everywhere. It lets others know that something is wrong, and serves as a handy seat just in case. It is too bad that people are so ignorant. I really hope you do write that letter to Walmart. It could help others too. I hate having to feel like I have to explain my illness to get any help. The seat cane is my ticket to help without glares, and stares. I try to avoid buying a lot at Walmart because I have had to wait forever for someone to help me to my car to unload my items for me. My local grocery now usually unloads my grocery cart for me onto the conveyor belt without me asking, takes the cart to the car and unloads it. Their attitude is great now that they see my cane! Walmart has helped the hurricane Katrina victims well though. My parents and brother were devistated by the hurricane and Walmart was right there helping. The Red Cross by the way was worthless according to all my family down south. I know you all know that this lack of compassion thing has nothing to do with Walmart, but rather society at large. Karyn

Oh, that is very interesting. I did not know that Dr. Grubb is a cardiologist. I had always assumed he was a neurologist. I learn something new everyday. karyn

Hi Jeff Personally I find your thoughts very interesting. To me they are refreshing. Better understanding of our illness someday could lead to more powerful treatment. Even though we may not be the ones doing the research, perhaps we might spark interest in a "hands-on" researcher who could do something with the idea. After the astronauts come back from weightlessness in space, they have similar symptoms to us. If researchers can figure out how to prevent this problem in astronauts, it might have some bearing (sp?) on us. I think I recall that they are trying to find an answer to this problem for astronauts. Your antigravity comment made me think of this. Karyn

I use light therapy for my seasonal affective disorder. That means that I get depressed in the fall and winter when we have less sunshine in the midwest. I don't think the light has any effect on my sleep. It definitely helps with my mood. I have a light on my desk at work. You can order a light from "Northern Lights" company. Karyn

IF you believe in evolution, then my thoughts might be interesting. When we transitioned from walking on all fours to being upright, our nervous system needed to evolve to allow blood flow to the brain. Perhaps our bodies did not evolve properly. We continue to have children because the illness is not deadly, so we pass the illness through the centuries. We were not "selected out" of the genetic pool. I know evolution vs. creation is controversial, so I hope no-one is offended. I personally think that evolution AND creation occured. Karyn

Topamax recently got an approval through the FDA for migraine prevention but neurologists have been using it very successfully for a long time for this purpose. Take it with food to minimize the chance of side effects. Taking it with food will slow how quickly it peaks in your blood, but not interfere with its effectiveness. Hope it helps you. I suffer from migraines and POTS too. Karyn

Thank you sooooooo much for the smiles you gave me. I LOVE the poems! I want to print them too if OK with you all. You both have a gift. Heh, they would be GREAT on a Tshirt for a fund raiser!!!! Karyn

Hi again, I just spoke directly with Dr. Low this am per phone conversation. He said that the drug he is researching is MESTINON. As we know, it is FDA aprroved for myaethenia gravis but not for POTS. Karyn

Ernie, That is wonderful!!!! Savor the victory. I think it is outstanding that you made something good come out of something bad. You made lemonade out of the lemon diagnosis of pychosomatic disorder that you were given. I always like to think of the "good things/things I have learned" that have come out of my illness. It comforts me. Karyn

I take midodrine 10mg 4 times per day. My cardiologist initially told me I could raise the dose to that level about 3 years ago. When I added mestinon, I was able to decrease by 5 mg. After I got a recent cold and then the stress of hurricane Katrina devastating my family, I have had to increase the dose back to 10 mg 4 times a day again. It worsens my migraines, but the beta blocker and magnesium help the migraines. The FDA approved dosage maximum is 10mg 3 times a day. Often drugs are raised above the studied limits for severe cases of whatever illness (epilepsy, depression, etc.). Dr. Low wanted me to try to reduce the midodrine with the help of mestinon because he worried that my BP might shoot too high on so much midodrine. I have a BP monitor and my BP has been OK. My BP just shot up to systolic of over 200 when Dr. Low had me stop my beta blocker and midodrine for the tilt table test, etc. My BP shot up to over 200 when I first stood up and then plummeted to less than 100 in less than a minute with a HR of 170's, so that the test was aborted. Life without these medicines would mean being bedridden for me. I thank GOD for medicine. Karyn

Chad, Congratulations! Thanks for sticking your neck out and giving us the information. I pray that he really has found such a "miracle pill". I hope Dr. Low was not talking about mestinon either. When he last saw me as a patient, he did not mention fluid balance in regards to mestinon. Mestinon just acts in the peripheral nervous system to increase acetycholine, the main neurotransmitter for the parasympathetic nervous system. Increasing the activity of the parasympathetic nervous system would then help to downregulate our overactive sympathetic nervous system. I have had some small benefit from mestinon. A lot of us have had our hopes dashed in the past, so I better be careful not to shed tears of joy just yet, although that was my first inclination. Karyn

Hi everyone, Pooh I am so glad that you heard about your friends. Isn't it just the best present? I got to talk by phone to my grandma in New Orleans a few days ago for the first time since the hurricane. It was so good to hear her voice! Her house was miraculously not flooded and she is still there. It sits 3 feet off the ground in case of hurricanes. My parents' house finally got electricity for the first time yesterday! They have hot and cold running water now too! They got their first hot meal in 2 weeks a few days ago. I was able to breath a sigh of relief. They lost most of their posssessions in the flooded house in MIssissippi, but they still have their lives. My brother of course cannot know about his house in New Orleans. I bet it is lost. Well, figuring out what to buy them for christmas should be easy this year... for once!!! My parents always try to tell me not to buy them anything because they have everything they need. They cannot give me that line this year. Too bad it takes a hurricane to make shopping easier. My dad says he has been washing himself off across the street with a hose. The traffic passes him by and he poses for them! He wants to make them laugh, and he does. My dad can be soooo goofy. A sense of humor triumphs. Karyn

Persephone, I am so sorry that it feels that no-one is caring. Please know that I and others here care about you. It helps me to try to understand why people don't care. I think it is because so many people are just too self absorbed. Also, some people with good health have difficulty understanding what it means to struggle day to day with a chronic illness. If they don't understand, sometimes it is difficult for them to care. Some people just never learned CAPACITY to care. I don't really mean to sound cynical. I feel sorry for them. That is what helps me to deal with them. Also, there are a lot of people who can and do care. I hope you run into THOSE people and keep them around you if possible. I have to take midodrine 5mg two tablets four times per day. I don't know what your other medicine is. Is it a beta blocker? Maybe your medicines are not working because the doses are not high enough for you? I would ask your doctor. Karyn

Tracy, I hope your son just has growing pains. My daughter has had them. Her pediatrician told me that increasing calcium intake can help. When she drink mild 2 or 3 times per day, she does not have the growing pains now. Whenever she slacks off from the milk, the pains come back. Karyn

Hi Hope you don't mind if I bud in, but I can really relate. I volunteered myself to give a lecture about Alzheimer's disease to my colleagues after one of them suggested that they could really benefit from it. That was about 5 months ago! In the old days, I would have wipped it out in a weekend of ernest, focused work. Now everything seems like a mountain. I do a tiny bit at a time. I have been beating myself up. You guys' emails have been the first thing that made me feel a little better about myself on this topic. Now, I am finding it really hard to get motivated when I am worrying about my immediate family in New Orleans and Mississippi. Karyn

Hi I still wonder if an immune system alteration could tie all of our triggers together. Physical and emotional stress lowers the immune system. Hormonal changes such as during pregnancy and menses are stressful to our bodies. Our immune system is altered by infections such as mono, flu, etc. Karyn

Hi everyone, I just found out last night that my grandmother and uncle are alive! I thought for sure that they were dead. They are still in their house in New Orleans. It only is flooded with 5 inches of water. It seems like a miracle to me. They have a generator, food and water, at least temporarily. My mom, dad and brother are living in their next door neighbor's barn. They will not come to stay with me in Illinois, because they want to protect their house across the street from looters. Their house was flooded to the kitchen countertops with water. I have only been able to talk with them twice about 5 minutes each time since the hurricane. I cannot reach them by phone to tell my mom that her mom is alive. She is crying because she thinks her mom is dead. I am grateful that they are alive but still worried about their safety/health. I feel helpless. My health is not good enough to do anything more than I try to do on a regular basis. Even the holidays or a simple cold sends me to bed. I wish I could be there to help but my health would not allow it. I have been a source of information for family and friends who have been able to contact me at least. I have developed a network with my cousin in Pennsyvania, and my brother's girlfriend who fled New Orleans. Everytime they get a shred of info., they call me and vice versa. Pooh, I am so sorry to hear of your coworkers death. Too many have died and are suffering still. Karyn

Hi Yes, it can be used as a cane too. I have seen different models. I just asked my local medical suppy company to get them in stock so I could see them and then decide which one I liked best. I don't really need the cane. I am short so for me to use it properly I would have had to shorten the end. I did see one more expensive model that allows an adjustable height. Karyn

Your question makes me realize that we really take a lot of things for granted. There must be everyday things in UK that the US have never heard of too. Gatorade is a sports drink. It is sold just about everywhere. It is a flavored drink with electrolytes and minerals. It helps to prevent dehydration in athletes, but lots of other people drink it too. It is not as popular as soda. Karyn