Eli6596

Hi Thanks for the great info. Tearose, it was good to laugh at the post about the worst jobs for POTS. Humor really is one of the best medicines! Being a surgeon would be a pretty bad job too. I used to try to weasel my way out of assisting in surgery as a student. I did not even realize at the time that it was not normal to feel dizzy after standing for hours. I am so much worse now that those times seem like heaven. Don't we take good health for granted until something happens? I think I will start staying away from splenda after reading the link provided by Gena. It is really not uncommon for dangerous side effects to be discovered years after a medication is FDA approved. Just a few weeks ago, a drug for multiple sclerosis, tysabri, was pulled from the market after one death and other serious illnesses. The drug had been "fast tracked" by the FDA after only one year of data because the drug looked so promising. I think I will stay away from licorice root too. I already take 35mg a day of midodrine which carries the risk of increasing my blood pressure. It is good to be informed about alternative meds though. Gena, I love gardening too. It keeps me sane. I plant all sorts of vegetables. I have to watch not to overdo it though. I pulled a relatively small amount of weeds today and had to lie down for hours. I use straw as mulch which saves me a lot of weeding and watering. Patience and pacing myself are key, but so hard! Karyn sister in POTS

Hi I am new to the forum but not new to POTS. POTS was triggered by pregnancy in 1996, and again in 2001, but stayed with me after the second pregnancy. Yesterday I typed my story, "Karyn's story" for the website. It felt therapeutic. It is still in the discussion forum under "aspring writers wanted". I feel very emotional and near tears when reading the discussion forum. So many people have struggled with so many things that I have. My symptoms do worsen with nutrasweet, but splenda seems OK,maybe. What has anyone else experienced with this new sweetener? I know it is real sugar with a chloride molecule attached to prevent absorption of the sugar. I see that some people are taking licorice root. How does this help? Please tell me more. Karyn sister through POTS

Hi I am new to the forum too, but not new to POTS. I also have had significant worsening of POTS around my periods. I would also get PMS and more migraines. My periods are now suppressed with continuous alesse. I don't take the blanks. More than one GYN has told me that this is safe. One GYN said I should have a period at least once a year, but more recently my GYN said I never need to have a period. My POTS and migraines improved and my PMS vanished. I recommend asking your GYN about supressing your menses. I take midodrine at a total of 35mg per day, a huge dose. It does make me a bit jittery but I think that is offset by 200mg of toprol a day, huge dose too. Midodrine has made the difference between me working 2 hours a day and working a full day (most sitting). However, everybody is different. I hope you and your doctor can work together to find the best medication plan for you as an individual. Good Luck and welcome, Karyn

Beta blockers differ by their lipid solubility, and by how many types of beta receptors they block. The more lipid soluble beta blockers get into the brain better. They cross the blood-brain barrier better. Inderal (generic is propranolol) is more lipid soluble than toprol, atenolol, and corgard, but it has more cognitive side effects for some patients. Dr. Low thinks inderal works the best for POTS. Cardiologists like to use toprol because they are most familair with it. Neurologists tend to be more familair with inderal because it is also used for migraine prevention. I take toprol 150 mg XL daily plus metoprolol 50 mg daily(generic immediate release form of toprol). The immediate release metoprolol gives me a little jump start in the morning, I think. Inderal made me fall asleep like a sleeping pill. Hope this helps. Of course, you should always ask your own doctor this question. Karyn

I feel for you. I can attest that disability for POTS is obtainable. I received temporary disability with the help of my local cardiologist, specializing in electrophysiology. During my first pregnancy 9 years ago, POTS was triggered but then "resolved" shortly after delivery. During my second pregnancy 4 years ago, POTS was again triggered, a hundred times worse. I received the disability during the second pregnancy while nearly bedridden for 2 1/2 months despite a huge dose of a beta blocker, and for nearly a year after delivery while medications were being added and adjusted. I have private disability insurance through Northwestern Mutual so that might make a difference. I was released from my job because of my illness. I was lucky enough to find another job that accomodates my illness. I take high doses of a beta blocker, midodrine, mestinon, suppress my menses and take salt tablets but still struggle everyday. I saw Dr. Low at Mayo and had always assumed that he would help me if I ever needed disability again. I was off disability by the time I saw him. This is a shock to hear his policy. I cannot withstand any more pregnancies but I worry about getting the flu and deteriorating. I empathize with you. Not feeling understood or cared for hurts. I think it hurts so bad because we are already delt a blow by the illness itself. Then, friends and even family have a hard time understanding the illness because we can LOOK young and healthy. I get stares and shakes of the head when older people see me park in a handicap space. Our employers sometimes don't have empathy for something other than cancer. But, through all this we assume that at least our physician will care and maybe rescue us. Unfortunately, just because someone is a physician does not mean that they have compassion. I am not referring to any specific physician. Thank God there are people out there who care who can be our friends, family members, and physicians. We just need to find them or stumble upon them. I know how it feels to be in a sad, down place. It is natural and needed sometimes. However, it makes my POTS symptoms worse so I try to crawl out of the dark mood as fast as possible. After I have a good cry, I shift gears and try to focus on the things for which I am thankful. I literally count my blessings. If any of what I have written helps you, I can count that as a blessing too. I wish you all the luck, blessing, and strength that you need. I would give you a great big hug if I could. Karyn

Hi I have had success with alesse, a low estrogen birth control. I found that my POTS symptoms worsened during my menses, so I am taking alesse continuously without the "blanks". This supresses my menses. I would give the new pill more time. Karyn