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

I think it is nice for one parent to stay at home anyway. I consider myself lucky that my husband stays at home. Before we had children, he used to fly jets in the Air Force, but diabetes ended his flying career. I count myself fortunate that at least POTS did not end my career in medicine, just dramatically altered it. Not taking call does allow me more time with my kids too. Karyn

Julie, Thanks for the spoon story. I had not heard the full story before you. I usually try not to waste my energy on getting peeved. However, the holidays seem to bring out my sulky side. The holidays make me realize how few spoons I have. Karyn

It seems like the worst thing that many people deal with physically is a bad cold. Then they complain about the side effects from the cold medication. I don't even take cold medication because I fear that the cold meds would interact with all the meds that I take. The stuffy nose, runny nose, cough, etc are NOTHING to me (just a minor inconvenience) compared to the worsening of my POTS and migraines when I get any simple cold. Then people complain about being sick with stomach flu for two whole days! What a joke when I suffer with it for weeks when my POTS flairs because I get dehydrated and my pills don't get absorbed correctly. Thank God for DanActive, the new drinkable yogurt with probiotics. It does seem to have strengthened my immune system. Knock on wood. I have not had a viral infection in several months. Karyn

Hi, I have flown several times with POTS. I have learned a lot of tricks. Wheelchair advice: 1)When you check in at the ticket counter, make sure that they have in the computer that you need a wheelchair WITH ASSISTANCE for ALL of your flights. ONe time, I was given a wheelchair with no-one to push me!! 2)Be sure to bring extra cash to TIP the person who pushes your wheelchair 3)If you have a connecting flight, make sure to check the gate at a monitor as soon as you get off the airplane. THe gate assignments can change. One time I almost missed my flight because I was wheeled to the wrong gate. Show the person the gate number in writing since many of them do not speak good ENglish. 4)As soon as you board the plane, tell the flight attendant that you will need a wheelchair with assistance when you arrive at the gate. Do NOT leave the plane until the wheelchair is there for you. Sit in the "comfort" of the airplane until the chair is there. Otherwise, you may wait for several minutes in the cold outside while they forget about you. (That one has happened to me too) 5)Yes, the wheelchair helper will stop and let you buy lunch, but they seem to expect more of a tip. ONe person was blatantly rude to me, telling me that I did not tip her enough! However, others are so nice that they thank me warmly for any tip. I just ask the wheelchair person to take me to the gate if I see that there is any food establishment close to the gate (there usually is). I walk the short distance to the restaurant and then back to the gate. Seating advice: 1)Reserve a "bulkhead" seat NOW, way before the actual flights. 2)A seatcane is a MUST. I put the seatcane against the wall in front of me and elevate my legs during the flight. The flight attendant will make you stow away the seatcane during take off and landing because it could fly around and hit someone if there is turbulance. 3) If there are any extra seats on the plane, ask the flight attendant if you can move to a seat that has an empty seat next to you. You can then elevate your legs comfortably next to you. I am petite so I can even lie down, using the two seats! That is the best of all. Flight attendants have asked other people to move so that I can have an empty seat next to me. Water advice: 1)You must have a note from your doctor if you want to go through security with a bottle of water. Otherwise, they make you through it away. 2)Instead of bothering with the above, I buy the water AFTER going through security. If you buy it after security, they will let you take the bottled water onto the plane. It costs a fortune at the airport though. Luggage advice: 1)I pack light. I only bring a carry-on (a backpack with wheels) so I don't have to wait in baggage claim 2)If you fly in a tiny plane, be careful with the size of the carryon. If it is too big, at the last minute before boarding, they will take your carryon from you. Just in case, I keep all my pills together so that I take them out of the carryon if they want to take the carryon away from me. Attitude advice: 1)I catch more flies with honey than vinegar. I try to be relaxed and pleasant to the flight attendants. 2)Try not to freak out the flight attendants or else they will refuse to let you fly. For example, don't say that you pass out. Just say that you have a circulation problem and that you get dizzy if you cannot elevate your legs during prolonged sitting. Keep it simple and look relaxed. (I almost got kicked off a plane when I said that I pass out.) Rest advice: 1)I plan on one day in bed after I arrive at my destination to rest. After the trip, I rest over a weekend and then take a vacation day from work on the next monday. Train: It is so much easier to travel by AMtrak. I hate flying because of the lack of control. Flights get cancelled and other passengers sleep in the airport or rent a car to drive instead. I cannot do that. I try to travel during the times of the year that are not the busiest or when there is not snow. That reduces the risk of cancelled flights. Good luck. Let us know how your traveling was. Karyn

Rachel, I like the idea of salt sprinkled on the melted cheese. I will definitely have to try that one! Karyn

Pizza!!! It realiably makes me feel better. I have always loved the taste and felt better with salty foods, even before I had significant symptoms from POTS. I wish they would build a Chick Fil A (sp?) where I live. Karyn

I have an idea. If you have not already tried it, how about asking a favor of the doctor who is willing to defend you. The MDA doctor could write you a brief note listing your diagnoses at least. At the end of the note, she or he could write that she is willing to be contacted for questions if they arise. You could use the note in case of ER visits. Karyn

Hi, I know how you feel. Overdoing it or feeling guilty when I don't overdo it are problems with which I struggle too. When people ask me to do something that I know will be too much for me, I simply state that I cannot due to my health problem. I tell them that my health problem keeps me from doing everything that I would like to do. When I keep it simple and firm, people seem to understand that I am serious, and cannot be talked out of it. I try to let go of all my negative emotions because they just make my POTS worse. I try to focus on what I CAN do. I apologize to family when I am grumpy. Take care of yourself, Karyn

Willows, I loved your story. I would love to have my very own spokesperson! I simply tell most people that I pass out if I stand up too long. My body is trying to fight passing out and that makes me tired all the time. I explain in more detail if people seem interested in learning more, but that is rare. Karyn

Hi, I switched to generic toprol XL (metoprolol ER) a few weeks ago. I do NOT notice a difference but I was scared to switch. I talked to a pharmacist. He says that the SAME pharmaceutical company that makes brand toprol XL is making generic metoprolol ER. The company just wants to capture the generic market since they know they will lose business from their brand name drug. THe generic is considered a "clone" because it is made in the same factory and by the same company as the generic in this case. Therefore, it should be exactly the same. The pharmacist says that the above is the case for the 50mg size. I think he said that a different company might be making the other sizes. I did not pay close attention since I just take the 50's. Karyn