Eli6596

Thanks for sharing your favorite salty foods. I want to branch out and try new salty foods. You guys gave me some good ideas. I think I will try the V8 with the salt chaser and beef jerky. I did not think of those. I just love trying new foods, especially things that make me feel better! Karyn

I am lucky that I am not required to go to any parties, but I do occasionally need to or chose to attend a nightime meeting or conference which is work related. The only way I have been able to make it through the rest of the week without crashing is to take a day of vacation the day afterwards. I lie in bed all the next day. I have learned the hard way that that is the only way for me. I hate using my vacation days for this purpose but it is better than taking a last minute sick day and inconveniencing everyone else at work. At any social gathering I do avoid standing around while everyone chats. I open up my seat cane if I want to talk while they stand. When it is time to sit down, I prop up my feet on a chair or my seat cane. I definitely don't drink any alcohol, not even a sip. I leave the meeting as soon as I can. Can you just make an appearance at the parties, and leave early? Karyn

I am worse at night too. I just figured that it is because I am out of bed most of the bed. I usually lie down at night. I take my last dose of midodrine at 5pm to avoid the risk of high blood pressure while sleeping at night. I know my midodrine only lasts for 3 hours before I start to feel the effects wear off. Therefore, I think the worsening at night is in part due to wearing off of midodrine. I conserve my energy by not running errands at night. I save any errands for weekends, usually sunday when after I rest all day on saturday. I am exhausted at the end of a work week. I slowly piddle out by friday. Karyn

I have an idea for a relatively easy gift and it can be overall inexpensive if you find coupons for Sears. Each year for christmas my husband, I and my two children get photos at Sears. I give them as presents to all my in laws, my parents and my brother. That is the only present that they get. Although it cost 100 dollars this year, that cost provided gifts for 9 people plus we have photos for us too. They love it, and I don't have to shop at all. I only shop for my husband and children. Karyn

Wow, that is amazing. I am lucky if a doctor knows what POTS is, much less a non-medical person. It would be refreshing if more "people on the street" knew about POTS. I am on a mission to explain it to as many people who seem interested. I get tired of explaining it though and just say "I pass out when I stand up too long" Karyn

What are your favorite salty foods? Which foods give you the most salty "boost"? My all time favorite is pizza. On my worst days, pizza will give me a lift. Has anyone tried anchovies? Karyn

Wow, you guys are making me think I do need a sleep study. Thanks for the info. about having sleep apnea despite not fitting the "typical" profile. It would be nice to sleep properly again. Karyn

The more I read posts on this forum, the more amazed I am that we all have so many symptoms in common! I find that I have symptoms that I never realized were linked to POTs until I see that you all suffer from similar, if not identical symptoms. These symptoms are not properly discussed in the literature. You all continue to be a gold mine of information. I too awaken several times a night. It seems like I awaken after each dream or sometimes "half awaken" during a dream and act it out. Melatonin and elevating the head of my bed help so that I don't awaken as often. I always awaken at least a few times a night for the potty trips. I don't snore and am not obese, so I have doubted sleep apnea. However, I worry that I might not fit the "typical" profile for sleep apnea and don't know it without a sleep study. The sleep problem bugs me a lot because my daytime POTS symptoms are directly linked in severity to how I slept the night before. Well, I am off to bed. Sweet dreams. I love my flannel nightgowns and knee high thick, pink striped, fuzzy socks. Karyn

I have seen Dr. Lowe as a POTS patient. His staff have told me more than once that he is seeing fewer and fewer patients. Instead I assume that he is focusing more on research. Therefore, the notice from Dr. Lowe does not mean that you don't deserve assistance or that you cannot be helped. It just means that HE cannot help you. There is a big difference. Also, I have referred my neurological patients to Mayo and had a referral declined in the past. I was told that Mayo's patient load was so heavy that they would only take patients who they thought that another neurologist could not handle. I would not want to be seen by any doctor who does not want to see me. A doctor-patient relationship is very important and both partners (both the doctor and patient) should be fully vested, not grudgingly going through the motions. I would recommend finding someone who wants to see you. You deserve a good relationship with your doctor. Karyn

Vicoden is an abortive medication. An abortive medication just means that you take the medication when you have the pain. Triptans (imitrex, maxalt, zomig, relpax, axert, amerge, frova) are usually the abortive medication of choice for migraines because they USUALLY work the best. As you have discovered, they can have side effects though. I take axert because I can tolerate it better (less nausea) better than zomig, maxalt or imitrex. Often, the patient needs to try more than one triptan before finding the right fit. Vicoden is usually used as a last resort because of the addiction potential, and because usually the triptans work better. There are over the counter natural preventative medications for migraines which can be better tolerated than prescription preventative medications. Ask your doctor about the options of: 1)magnesium 400 to 500mg daily, or 2)vitamin B2 400mg daily, or 3)coenyme Q10 150mg daily, or 4)butterbur or feverfew I have had good results from magnesium. Hope this helps. I too suffer greatly from migraines Karyn

Coenzyme Q10 is an antioxidant. It has been studied at a dosage of 150mg daily and can decrease migraines. I hear that it costs about 40 dollars a month. In my experience, magnesium at 400 to 500mg daily works better for migraine prevention and is much cheaper. It has also been studied for Parkinson's disease at much higher doses, about 1200mg daily. It might slow down Parkinson's disease but I only know of one preliminary study. Karyn

My most common explanation is "I pass out when I stand up too long" I agree that most people don't want to hear more. If someone seems interested I will explain more. Most people are polite. However, I had a total stranger (selling me newspapers) last month ask me too nosy questions. He asked me "Have you ever passed out when driving?" Is it genetic? Don't you worry that your children will get it? You should tell your children's doctor to watch your children for it. I wish I had told him that he was being rude, but I was just too shocked at the time. Karyn

Folgard is similar to cerefolin, and perhaps your insurance might cover folgard? Folgard 2.2mg is the prescription strength, and I think you could get a weaker strength over the counter. Another alternative would be to take folate, vitamin B12 and vitamin B6 individually over the counter. You can ask your doctor about the correct amounts of each individual vitamin. Hope this helps. Karyn

I have migraines too. Migraines are more common in POTS patients than the general population. The International Headache Society criteria for the diagnosis of migraine requires at least two of the following: unilateral (one sided) location to the pain throbbing or pounding limitation of usual activities due to the pain increase of the pain with movement AND one of the following: nausea or vomiting light and sound sensitivity If you have at least two symptoms from the first list and at least one symptom from the second list, you would meet criteria for the diagnosis of migraines, but consult your doctor. Karyn

1)My trick is to make sure that I have my legs propped up during the entire trip. I need to sit next to an empty seat on the plane for this to work which is not always possible. If a friend or family member travels with you, you could prop up your feet on their lap if they are willing. 2)I also get up and walk the ailses at least every 45 minutes to get my blood moving from my legs. 40mm Hg compression stockings and more water than usual are key too. The airlines won't allow water anymore though. 3)I need wheelchair assistance to get from one gate to another in the airport since the distances are way too far. It is a HUGE stress relying on disinterested airline employees to get me to my connecting flight on time. And, they all want tips. 4)I hate flying because of the POTS. My symptoms flair for a week after the flight so that I spend most of my time in bed, not enjoying anything at the destination to which I have traveled. By the time I feel decent, it is time to fly back home. Due to the increased security at airports, the lines and restrictions will be even worse, so I don't really want to fly again even though I have done it in the past. Oh and if my flight gets delayed, I get the pleasure of lying on the dirty carpet of the airport floor. It is interesting how no-one finds the sight unusual. 5)A sleeper car in a train sounds much better to me, especially if your doctor suggested that you not fly. Good luck Karyn

I get dizzy if I sit for more than 30 to 45 minutes with my legs down. That is a problem in meetings or during a movie. I agree with everyone else's advice. I move two chairs next to each other and prop up my legs. Every 45 minutes, I walk around a little and do 10 deep squats. When we sit too long, blood pools in the legs, away from the brain. Lying down is an even better recharger but is not always feasible. Karyn

Hi I have never heard of humans taking catnip. For insomnia I take melatonin 1/2 of a 3mg tablet. I don't have any side effects. Better sleep always helps my migraines. If you are looking for other natural things, magnesium 400 to 500mg daily works wonderfully for prevention of my migraines. It can cause diarrhea in some people. Its benefit has been supported by clinical trials. It can take up to 3 months to kick in. Good luck. I hope you get some rest. Karyn

How uncomfortable to have to see the jerk again! Do you think he even remembers or recognizes you? Perhaps he treats everyone like he treated you, and so the event does not even stand out for him? Showing fear around aggressive people can sometimes make them more animalistic. I would show calm if you can muster it. I love to dazzle harmless jerks with a big smile and hello. They are completely shocked and speechless. If I think the jerk could physically harm me, I avoid eyecontact and ignore them. If it was me, I would buy mace to put on my keychain for that guy. It would give me a sense of security even if I never need to use it. I think that they are legal. They sell small ones about the size of a cigarette lighter. (No, I don't smoke). I used to carry one a long time ago when I lived in a much bigger city. I would not carry one myself now because I have young children who might get into it. I hope these ideas help. Hopefully he will default on his rent and get kicked out. Karyn

I would have been extremely upset too. I have had bad experiences about handicap spots too, but nothing that bad. When someone is that nasty, I think it means that they must be miserable and disgusted with their own life. Happy, contented people don't treat other people like that. Your experience teaches me that I will not confront people in the future verbally. Your experience reminds me of the evil in this world that exists. I could not defend myself either. The police in my town are eager to respond to complaints in general. Some people will never change their inconsiderate behavior until it hurts their pocketbooks, not their conscience. They are too self centered to care about anyone else but themselves. I pity them, so that I can dampen my anger. I try not to give them any of my power by letting them upset me....for too long. Karyn

Not every doctor will feel comfortable being tape recorded. It makes me nervous. Ask permission first please. I bring a list of questions and just take notes when I see my doctors. There was too much walking at Mayo for me. I learned that I could ask to be pushed in a wheelchair from appointment to appointment. It seems like everyone is in a wheelchair at Mayo. When I had to come off all of my medications for testing, I could not sit up without passing out, so they rolled me around on a stretcher. I suggest staying at a hotel that is connected to Mayo, so walking is not too far. I hope you have a good experience. Bring a good book to read while you wait. Good luck. Karyn

I developed symptoms of POTS during my first pregnancy 10 years ago, so that I was on bedrest for the last two months. About 3 months following delivery my symptoms essentially resolved. During my second pregnancy 5 years ago, the POTS returned and I needed a beta blocker to get out of bed at all. I had much more severe symptoms and again required bedrest for 2 and 1/2 months. I worsened as pregnancy progressed. I could not stand up long enough to brush my teeth, and was in a wheelchair to go to the OB visits. After delivery, I never did recover. Mayo says I have severe POTS, but I can work due to very high doses of meds. No-one knows why pregnancy triggered the POTS, or why I did not recover after the second pregnancy. Perhaps it has something to do with the immune system during pregnancy. In retrospect I think I have had very subtle symptoms of POTS perhaps all my life, but I was never limited. In fact, I did not know at the time that I was not normal. Karyn

I'm 41 and not getting any better except with piling on more and more medications for the POTS. I think that the hardest thing for me was dealing with false hope. I have coped with the illness much better emotionally after accepting that it is not going to go away at a magic time or age. Karyn

Hi Dionna, I hope you can find the job that is right for you. I rather that someone tell me right away that they don't want me for the job, rather than be jerks about my illness after hiring me. Hopefully you are weeding out the jerks, and will find a jewel like I did. Sell them on your strengths. Let them know that it is not a degenerative (progressive) disease. Emily, thanks again for the words of encouragement. Yes, I definitely am a better doctor because of my illness. I have no doubt. I truely understand my patients' struggles with chronic illnesses. Heck, I have some of the exact same illnesses as they do.....syncope, migraines, neuropathy for example! I try to be patient and listen. I never leave the room without answering all the questions, no matter how late I am running behind. Karyn

Thanks Emily. All of my work as a neurologist is still direct patient care, outpatient only. However, I no longer have to take call, or do hospital work. I also no longer have to drive an hour once a month to a satellite office. The primary care physicians with whom I work cover calls after hours for me. Before I was hired for this postion three years ago, I was very specific about what I could not do. However, I also sold them on what I can do. My references also were a huge help. Now three years late, it looks like they will vote me in as a partner. My modest salary will not increase but job security is wonderful.....as long as my health cooperates. I pray for that. I had two "head hunters" helping me to look for a job 3 years ago, plus I searched too. There were a lot of places who immediately had no interest in me when they heard my limitations. I am just so lucky to have found an employer who did not want to throw me away because of my illness. They value what I CAN do. My husband took the kids to his parents for a visit. They live one and a half hours away, but I don't do well with travel. It is nice to have the time to write again when the house is quiet. Usually when the kids are here, they get my attention so that I don't have time to write. Karyn

Hi I can't wear contacts either. I last tried them 15 years ago. I am sure things have improved. My eyes seemed too dry when wearing them. Otherwise I never notice dry eyes. My mouth is dry now due to the salt tablets. I need to go chug down some water right now. People with migraines have "hyperexcitable" brains. This means that our brains are more sensitive to things that might not bother someone else. I don't know if this applies to contacts but it seems that it might? I just don't like putting things in my eyes, just like I don't like loud noises, bright lights.....even when I don't have a migraine. Karyn