Eli6596

Wonderful!!! You have won a huge battle Karyn

POTs was triggered by my first pregnancy 12 years ago. I was on bedrest for 2 months. After delivery I thought I returned to normal, but in retrospect I was more tired than a normal person. Then during my second (and last!!!) pregnancy, the POTS was triggered again. During the second pregnancy, the POTS was tons worse. I required up to 200mg of metoprolol, a beta blocker, just to be able to stand long enough to go to the bathroom. After delivery, I expected to do well again. The super surprise was that I am now permanently left with severe POTS requiring 200mg of toprol, 40mg of midodrine, mestinon, salt tablets, compression stockings, and a dramatic change of my ability to work. At least my children are healthy, but I cannot go to all of their games. I cannot take them shopping, except infrequently. Perhaps pregnancy triggering the POTS is an autoimmune process. I do not think anyone knows for sure. Karyn

I dream a lot about not being able to find my midodrine. I get weaker and weaker so that I cannot move or talk. In my dreams I cannot make enough sound to ask for the midodrine. Karyn

Try elevating the head of your bed by 45 degrees. Are our meds wearing off by bedtime? I know that my midodrine and mestinon wear off by bedtime. In addition, I suspect that dreaming could activate our sympathetic nervous system. I know that I will wake up sweating with my heart pounding after a nightmare. My heart races just driving when someone pulls out unexpectly in front of me. Karyn

I found an article about migraines and autonomic nervous system function. The article is: Migraine and autonomic nervous system function, Neurology, 2002:58;422-427. I have never learned how to provide a link for an article in an email. Sorry to admit that I am not computer gifted. I will have to ask my 11 year old to teach me someday. Karyn

Hi, There is thought to be autonomic nervous system dysfunction in BOTH migraines and POTS. Dr. Low at Mayo told me that himself. I know that I have read that in at least one migraine research article recently. It made so much sense to me that I did not save the article. I know that the book written by Dr. Low about the autonomic nervous system lists migraines as having a high incidence in POTS patients. Whenever my POTS is bad, my migraines are bad too. THey go hand and hand. Karyn

Hi, After I spoke with our hematologist at my clinic a few years ago, I changed from giving B12 shots to giving B12 1000mcg orally daily to my patients. If the level is very low, I will give the shots until the level is normal. I then change to the pills and recheck a level to make sure the pills are keeping the level normal. There are studies to support this. If you google vitamin B12, I bet you could find them. Karyn

Hi, No-one really knows the answer to your question, but I can share my personal experience with POTS and pregnancy. I was on bedrest during the last 2 months of my first pregnancy due to POTS. After delivery, I could not breastfeed for more than a month. I think the breastfeeding wore me out too much due to POTS. I recovered well within 3 months of delivering so that I was fully functional without medications. My second pregnancy resulted in bedrest for the last 2 and 1/2 months AND I needed 200mg of metoprolol during pregnancy just to allow walking to the toilet. After delivery, I improved but POTS was so much worse than before pregancy. I have never recovered and am limited in my daily activities despite huge doses of toprol, midodrine, mestinon, salt, etc. However, I have remained stable over the past 6 years. Any improvements in the last 6 years were due to adding yet more drugs, not to improvement of the underlying disease, if you know what I mean. No-one knows for sure why I did not recover after the second pregnancy like I did after my first. I have healthy children, but having a second child devastated my health. I don't hope for improvement with age. I expect that age will bring more health problems. Already I have high cholesterol, for example, despite a normal weight and avoidance of fastfood. Karyn

There is no problem with taking xanax and tylenol together. Karyn

It is too bad that one of us did not have a chance to post a comment before the opportunity for comments closed. I would have loved to send a comment. I felt like screaming that neck pain can trigger migraines. Migraines and syncope ARE comorbid conditions. At least florinef and pindolol were very reasonable drug choices. I am appalled that the neurologists did not have a clue that neck pain, migraines and syncope are related! Karyn

Wow, this is a great topic. I will definitely try the fingerless gloves from Target. I never thought of a kitchen stool on wheels. I love to cook and that idea may change my life! I worry about rolling it over the grout in the kitchen ceramic tile though. I found really thick warm socks in the hunting department. The pressure from the socks helps with the tingling in my feet, not just the coldness. I have learned so much from all of you. Karyn

Hi, I am so glad your trip went well. I use earplugs that look like corkscrewers. THey equalize the pressure. I think they are called "earphones" or something like that. Karyn

Hi, I know that this is some of the most awful pain that anyone can experience. I would recommend calling your doctor as soon as possible. You could ask if there is room to increase the lyrica. If not, many patients with TN respond well to tegretol. If you have failed several medications, there is surgery for trigeminal neuralgia. It is performed by neurosurgery and can be very effective for relief of the pain. Karyn

Virginia, I am so sorry that you struggle with such a burden on top of your illness. It is easier to brush off insensitive comments from people who do not really know or love us. It is a deep stab when it comes from your own mother. As we grow older, sometimes we realize that our parents are not the people that we thought they were. I have gone through that myself. I bet your mom's anger comes out of her fear that you will not be able to take care of her. She also probably does not want to admit that her child is really sick because as a mom it is hard to deal with such a thing. She must know deep down that you are sick if you were in the ICU. It is probably just easier emotionally to deny your illness. I suspect that no matter what you say, you might not convince her of your illness. Perhaps she is also dealing with her own inside demons telling her that SHE is lazy. I know that anger devastates my POTS. I pay dearly if I argue with anyone. If you can, I would try to remain calm at your mom's insults and let her know that her anger is not helping her own illness or yours. I would stick to what you know is right about driving for your safety, your mothers and everyone elses on the road! Unfortunately, it sounds like you will need to look out for you because not even your own mother is not strong enough emotionally. Follow your instinct about what your body needs without outside useless, damaging chatter. Know that I understand, and you are in my thoughts. Karyn

Hi, I would recommend seeing an opthalmologist (eye doctor with an M.D.). Strange visual disturbances can occur without the headache phase in migraines patients. However, your description does not seem typical for a migraine aura. Karyn