migraine

All these suggestions really make since. When I was young I could sleep for hours on end. On weekends my Mom would throw open the door at 3:00pm and say, "Are you ever going to get up today!" I'm sure that was blamed on teenage ritual, but I really needed the sleep. My junior year in highschool I skipped a combined total of 21 days of school. These were mostly mornings when my Mom would leave for work and I just couldn't get out of bed. No one seemed to believe I was only at home sleeping. At the time it was blamed on truancy, a nervous breakdown, or some type of mono. Now that I work and have kids I'm simply not able to sleep in. I notice a huge increase in brain fog and an increase in POTs symptoms which I'm sure is also blamed on being a "Mom." One of my doctors wrote my husband. He explained that because I have restless sleep, I need more than 7 hours. I also need to take long naps on the weekends. He stressed that lack of sleep with my history could wind up turning into a stroke. That really scared me. I still have to fight for a nap, but I have learned a few tricks... The "pattern" discussed in the above postings seems to really work. If I rush through the day, get the kids to bed, clean the house, and jump into bed I sleep horribly. If I start a little earlier, do some stretches (I don't go as far as to actually work out) take a bath, snuggle into clean sheets, I seem to get more sleep. Hope this helps. I've also heard you cannot catch up on sleep. I disagree...If I can get a big nap in on Sunday, I find I have a much more restful sleep ahead of me during the week. Drugs just make me groggy in the morning. I think you will just have to find a routine that works and stick to it. Good luck.

Dr. Stillman at the Cleveland Clinic told me about a study about this same topic. This was more in reference to migraines, but he said fair skinned, haired, and eyed women are more prone. I wonder if this links with POTs as well? I'm wondering if the Cleveland Clinic has this article or someone knows about it?

I have heat issues in the summer and cold issues in the winter. I also play thermostat war with my husband. I try to remember that the other four members of my household are not as cold as me. I bundle up in layers. When it's really bad I take a steaming hot bath and that seems to help. As for the summer, my husband used to think it was all in my head. We moved into a house with air conditioning two years ago. Before that, no air, and I went nuts every summer. Three of those summers I was pregnant. I remember being 8 mos. pregnant lugging a 100 pound air conditioning unit inside (by myself) just to cool our bedroom. I remember crying and begging the OB/GYN to please take the baby out. I was so hot that I could not move and I had prickly heat all over. I would step out of a cool shower and start sweating. I had trouble brushing my hair and putting clothes on. I simply could not move. This was like this on off summers when I was not pregnant as well. I have had air for two summers now and it has made a huge difference in my life. My husband and I are on different shifts so he turns off the air when I go to work and I turn it on when I come home. While perusing a web site on POTS about 3 years ago I noticed a statement on POTS patients and heat...and how we NEED an air conditioner. I thought this was so interesting and I was so relieved to learn it was not in my head. Good luck.

When I was in college (not yet diagnosed with POTS) I can't believe how much I drank. We used to walk around with pitchers of beer all night. The room would spin and in the morning I would puke my guts out. Then I would do it all over again the next weekend. I was very good in highschool and I just felt like I was sewing my wild oats in college, going through the same ritual as everyone else. Looking back, everyone else was not puking in the morning and it probably was not very smart. After my first child I noticed I could not have more than 2 beers without becoming terribly drowsy and then getting sick. I have no idea why I even bothered trying. The same effects with mixed drinks, only pain in my neck and back were added to the symptoms. I hate the taste of wine, so I don't yearn for that. Gradually I have cut out all alcohol and I don't miss it. Here's the weird part...during some of my illnesses, doctors have run blood tests that showed signs of alcohol in my system. How is this even possible? I don't know if it's POTs related or not..., but my guess is if we already have weird alcohol issues in our system, then adding more alcohol to that is probably not a very good idea.

Hi Ladybug, Oh I'm so sorry to hear you are going through this so young. My POTs started (undiagnosed) when I was about two. I had peti-mal seizures that came out of no where. I did not shake, but I would hear a loud buzz, the room would go dark, and occasionally I would pass out. I had a grandmal seizure in junior high, went through series of painful and annoying tests, and then gave up on doctors. For me things sort of changed for the better as I entered college. I still had the headaches though, but the seizures went away. I was officially diagnosed with POTS about 3 years ago. Because of my past history with seizures I was put on Topomax to prevent seizures and Toperal (beta blocker) for my POTS and to prevent migraines. This concoction really seemed to work for me, maybe it would help you as well. As for the college thing....I currently work at a college. We have a Center for Learning Assistance. I'm sure a simple doctor's note regarding your headaches and seizures would qualify you for learning assistance. This could mean having permission to miss classes for illness, and doing homework and assignments directly from your computer instead of attending classes. If you have a disability, I believe the college must make acceptions to its curriculum in order for you to fullfil your requirements. Please look into this before you give up hope. You may also wish to look into other nursing options. My Mother works for our local hospital as a Parish Nurse. She organizes volunteer nurses at area churches to check on their parishoners and give weekly tests and blood pressure readings. I'm sure you will find many options in nursing without having to work in a hospital on your feet for 12 hour shifts. Please don't give up hope. I just joined this site and the people here have so much more knowledge than I. But I do know that these POTS things seem unanimously to move in stages in each person's life. Mine was very bad as a child, fabulous in my 20s, and have moved on to migraines and other things after having children. I don't think it's ever really "over", you just wake up one day and say, "Hey, I don't feel like crap today!" It sounds like your family loves you and understands what is going on. I'm sure you would do the same for your children. Hang in there!

Hey, I think I just had an epiphany on this whole water/salt thing (for me)....I drink 8-12 cups of water a day. It makes me very cold and I don't always feel that great. I usually end up drinking a diet pepsi and then it feels like my body picks up. I don't think it's necessarily the caffeine. Maybe it's the sodium. I usually don't like to put salt on stuff. So...maybe if I drink these specialty waters with electolytes in them and sodium....I won't need diet pepsi so much. I'll go buy some of that water and let you know.

Oh boy, the crying thing! What is up with THAT! I used to be soooo emotional. If something went wrong at work or a co-worker and I would butt heads I would ball like a two year old. How unprofessional. I would tell myself, "knock it off and grow up!" but the tears kept coming. I know I lost so much respect from my co-workers. I also remember crying over tests in college. I would be sobbing uncontrollably with tears sprinkling down on my paper. I was also a poor loser. While I tried to be a good sport, I couldn't help but cry like a baby if I lost a game or did not make something I tried out for. I was a vocal performance major (which is really funny since POTS patients aren't supposed to sing.) and was terrified at the thought of performing my senior recital. Before I was ever diagnosed with POTS I was given two beta blockers to get me through the recital. They were great, no stage fright and no crying. I should have known then there was something to those pills. As soon as I was diagnosed with POTS I was given a beta blocker. I only wanted to end my migraines. Imagine my surprise when I slowly noticed I was not a big cry baby anymore. That really threw me for a loop and I realized that I was not an emotional mess. My encounters on facing adversity have become more like a Seinfeld episode instead of a soap opera. My doctor told me I was very lucky to find a medication that worked so quickly. He said most people take a long time to find the right drug concoction that works for all of their symptoms. Best of luck and hang in there.

Oh yes, I get this every so often. Fortunately I have three kids and am able to blame the depletion of brain cells on them. I am also pregnant now and can pretty much blame all of my POTS symptoms on that for public explanation. My fogginess seems to come about once per month for about a week (With or without my monthly visitor.) I have not really found anything that helps, so I sort of just shut down for a week. I figure it's my brain's way of telling me I need a rest. I clear my calendar as best as I can and steer clear of a great deal of social interaction. I tend to zone out with some tear jerker movies and let the house become a disaster. By the end of the week I usually perk back up and join in life again. I used to think this was PMS but it doesn't really follow a pattern. My weirdest problem with the focus is talking to people and looking them in the eye. I don't know how to explain this but it's like I have to squint and try so hard to look at them. I usually have to look away or look down at the floor when it gets really bad. I usually say really stupid things too because I'm focusing so hard on my eye issues. When I can't stand it anymore I simply say that my contact is falling out and try to fix my eyes. I don't really have a cure, so my only advice is to lay low:)

Thanks everyone for your thoughts and ideas. Goldicedance: You triggered such a reaction from me when you mentioned standing in lines. I like to refer to these happenings as my "Drugmart" epidsodes. I realize that no one likes to wait in line, but I feel like I am exceptionally sensitive to it. Not only do I get dizzy, but I start to shake, get sick, and have anxiety issues. It's like blood is literally boiling in my body. I'm not the type to say anything to anyone, but I have visions of pushing people out of my way, throwing money on the counter and leaving. One of my worst episodes was when a lady in front of me (One line only open) decided to purchase 100 phone cards at Drugmart. Each card had to be rung up separately (She used a credit card) and then run through a scanner separately to add the minutes. I went completely bonkers. I couldn't bring myself to leave because I needed the product I was buying, so I just stood in line and cried. That is officially a POTS related, "Drugmart" episode! Justme: I'm sure I have some type of syncope. My Grandmother has that and has a pacemaker. She passes out at least once per month. So I must have a genetic POTs. Anyway I have not officially passed out since college (singing in a choir.) I have learned to sway, change positions, and lean on whatever I can find. Occasionally I bend over to get blood to my head. So I have managed to find a little system, but it is still so hard. It's like I'm playing this little video game inside my body an no one around me has a clue what's going on. This disease is just so hard because it does not appear as an obvious physical disability. During another topic several people commented on having a positive outlook and what phase we are in in accepting this condition. I feel like I've always accepted it and moved on. I just can't seem to get over my perception of myself as someone who makes excuses. Maybe if I just start saying, "Oh, I have a cardiac condition" others will understand and I'll let myself off the hook. Thanks for the advice.

Hmmmm, I can't remember an exact reason for failing the tilt table. They just said, "Yup, you failed, it's definately POTS but we'll fix you up." What is NCS?

My Catholoic church announced a few months ago that we would not be doing the whole sit, stand, kneel, stand thing. (I think it was some sort of Pope decision throughout all Catholic churches.) Instead, a little after the Gospel we stand for basically the rest of the service (1/2 Hour). I do fine walking or in motion, and usually sway through the songs...but standing for that long makes me feel like I'm going to pass out and makes me sick! (Hence my tilt-table failure.) It's not just me, I see little old ladies dropping like flies throughout the service. The problem is I'm not an old lady. I'm 32 and I feel like everyone is staring at me when I end up sitting down. I feel like I owe the church an explanation or something even though the big guy knows what I'm doing. Should I write a letter or something? This happens not just in church but other places as well. When my kids are outside playing, neighbors usually stand around chatting. I usually have to ask for a chair or bring one with me. While chatting at work or in any social situation I am constantly looking for a chair. Forget attending any type of standing room only event. I usually kick small children and teenagers out of chairs at the mall or family events. I feel terrible, but I really must sit down. My husband gets so embarrased. My husband teaches guitar lessons. At his students' recital I left my coat on my chair to take one of my girls to the bathroom. When I came back a parent was sitting in my chair. I had to ask her to move and I know she was very upset. It was this sudden onset of anxiety and the urgent need to sit down! How weird! So my question is what do you say? No one knows what POTS is. Do you say you have a cardiac condition?

Wow, so much support in just one posting. Thank you everyone! Michelle & Ling: Yes I have low blood pressure. Most of my doctors think this is great. I have an OB appt. today. I am going to try to get them to take a sitting AND standing blood pressue to see if there is a difference. I was not too keen on the demeral idea anyway. Besides how am I suppose to take it for migraines if I spend most of my time throwing up? I was so surprised to see so many of you who have had problems getting pregnant. I realize how lucky I am and how that should have been an issue for me as well. When I was younger I was an athlete in several sports and rarely got my period. Before I was married I completely stopped. (I thought it was just stress.) (I'm now reading that this could be POTS related.) I had some testing done at MCO. I was told I would have difficulty getting pregnant and that I should start on the pill to force my body into a cycle. I was told this would take about 5 years to kick in. I was to alternate three months on and three months off. Well, wamm! I got pregnant on my first 3 months off cycle. I did get headaches from the pill, but my little girl was worth it. The rest of my children were born 2 years apart so my body just sort of got on it's own cycle. This past summer I'm sure my body thought it was supposed to be pregnant. It went out of wack and I have not had a period since June 2003. In January 2004 I went back on the pill. I called my OB to let them know the pill was just making me too sick and I was throwing up in the morning...surprise I was pregnant! Yes, we are bracing ourselves for the comments regarding my 4th pregnancy. In fact I have told no one but this forum. I am 14 weeks and we plan to tell our family, friends, and work on Easter. The reaction to my 3rd pregnancy did not go over so well. My husband and I both work (we are sort of on different shifts to stay home with the kids) and I think our family felt like we were in over our heads. My Mother, who is a nurse, worries about my health issues and stress level. I can already here the "breeding" comments now along with "don't you know what causes this by now!" I was an only child, so I have always immagined a large family and we're doing OK. When you get married everyone keeps asking when you are going to have a baby. After the first one everyone expects a second. After that you're pretty much crazy right? Anyway, I love my kids and the best of luck to everyone trying to have their own. Sorry this is sooo long. As for the weird birth and postpardum experience. I really had a hard time with needles. Each pregnancy I was poked at least 11 times. They had trouble finding the veins or the blood would just quit flowing. They also had difficulty with the epiderals. They strangly never seemed to take. The last child they attempted 3 times and finally got it. I know there were some blood pressure issues with the epideral, I was usually pretty out of it. I don't react well to drugs & alcohol, so when I was given nubane with my first pregnancy I really went for a loop and swore never to do that again! During the transition fase I would get very sick and shake. This appears normal to the nurses, but it feels more like a seizure to me. Now that they have discovered the POTS I'm sure that they will monitor this more carefully. After the delivery I felt great. A few hours later I would get chest pains and shortness of breath. They usually just said I pushed hard. I'm going to have them watch that one a little more closly as well. By coincidence I had large volumes of fluid during each delivery. After reading about POTS and pregnancy I have come to understand that this is essential to a good delivery, so I was lucky. I have not had a C-Section, but I'm a little worried about low blood volume and pooling if I ever need one. I think that's it with the pregnancy stuff. Nina: I have had trouble finding a neurologist in my area let alone someone who specializes in POTS. Thanks for the web sites. I will try out my new Dr. Patel and see how it goes. I just want someone who listens carefully, actually investigates this disease, and remembers my face upon my next visit. Ling: I used to have heat issues in the summer. I am finally in a house with air conditioning and am doing much better. I used to be so hot my body would swell and itch. This winter I can't seem to get warm. We went to Florida for Spring break and I wore a winter coat and jeans the whole time I was there. My hands are always freezing. I have been trying to walk about 1.5 miles each day and I can't seem to break a sweat. I'm not sure if there is a cure for this. I wish I could take something for this. Along with the halter monitor, I do a yearly stress test. They can never get my heart rate high enough. I'm usually in a hard run on a high incline by the time I finally quit. Is this because of my low blood pressure? or could it be because of my beta blocker? My theory is since I can't break a sweat and get my heart rate up....I can't lose weight. I have gained 20 pounds with each pregnancy. I eat OK and am fairly active. Any ideas? Briarrose: I think I have just lived with my symptoms so long that my husband doesn't really think I am sick. He thinks if I lose weight and work out I will feel better. One doctor that deals with Syncope actually wrote him a letter saying I need more sleep and that if my fatigue continues I could stroke out. He doesn't really take notice until I throw up or pass out. This is just such a frustrating non-distinct disease that we're just going to have to deal with day by day. This forum is awsome though. It really helps. Oh boy, Immitrex. I had a very bad reaction to a shot of that during a migraine. This is the one time I ended up in the ER. I was very frustrated with the doctors because they acted like it was just a headache. They gave me reglan in my IV to help ease my stomache. All I wanted was to be knocked in the head with a frying pan! I finally ended up on some cancer pain treatment and slept for 5 hours. I wish I knew the name of that stuff. Alcohol makes me sick...but my greatest weekness is pop. Before my pregnancy I was up to about 12 cans of diet pepsi a day. Now I am down to 2-3 cans. The weaning process has been literally a headache. I hope I can get down to 0 cans soon. I know this will help my POTS and pregnancy. Well I think that sums everything up. I thank everyone so much for their comments and support. I will be checking this forum out to learn more about this crazy disease. Thanks again.

Dear POTSy patients: Not only am I new to this forum, but I have never been in any other chat room or forum. Please forgive me if I go on forever, but it's so nice to see other "me's" out there! Over the past few days I have been reading all of your comments. I have laughed and cried at your similar experiences and am a little frightened of all that I do not know. Now from the beginning - In trying to make a long story short, I have been misdiagnosed since the age of two with epilepsy, diabetes, hypoglycemia, border-line diabetes, and my personal favorite - hyperchondria! I was subjected to numerous tests and diets. I was given a glucose tolerance test and had a grand mal seizure. The most perplexing for doctors was (and still is) glycosuria (sugar in my urine. Does anyone else have this?) None of the diabetes tests added up, so I was sort of in medical limbo until my adulthood. My entire life I dismissed the long list of POTSy symptoms. I thought everyone saw spots, had trouble standing in church, and passed out from seemingly nothing. My teachers were fed up with excuses to get drinks of water and my excessive need to sleep. I had constant headaches and pretty much the entire list at one time or another of everything associated with POTS. Other than that I was a normal active person. After the birth of my first child I began to gain weight, slow down, and have more defined symptoms. I also started having intense migraines. I usually go blind in one eye, throw up for 3 hours, and then have an intense headache for the rest of the night. Total recovery usually takes 2 days. These problems were all dismissed by doctors as being a stressed Mom and getting my body back in wack. By the time my third child was born I felt like my body was falling apart. I was up to 2 migraines a month and just always feeling sick and tired. This really put stress on my marriage, and even now if my husband hears one more thing about POTS or my symptoms he will go nuts! "What do you expect when you have 3 kids" right? I finally went to the Cleveland Headache Clinic for testing. I failed the tilt table test and a few others. I was finally diagnosed as having POTS and cried as I read the symptoms and came to the realization that I was not nuts. I was told that migraines were not normally the main issue with POTS patients, but I was put on Topomax for awhile and a beta blocker. The doctors were very pleased that my migraines went away - down to only about one per year for 3 years since I first started. I also noticed I was not as emotional and had just a little more energy. I still remain on the beta blocker twice a day. Well, I'm pregnant with #4 (and yes I know what causes that) and I'm up to 3 migraines per month. I am also freezing and not sweating and no one can explain that. The Cleveland Clinic says I should be on magnesium and also prescribed demeral for headache pain. I'm not sure about either one of those. - Any thoughts? The Cleveland Clinic is about 1.5 hours away and just too much effort to make appointments and actually get there and speak to a doctor who knows (remembers) my complete history. I have an appointment in a couple weeks to see a new neurologist. Wish me luck. I just want to be closer and more involved with my doctor. I am also trying to get my OB/GYN more involved in this since I seemed to have weird birthing and recovery issues with my other pregnancies. I have just been so frustrated with doctors and telling my story over and over. So that's about it. Let me know if you have any advice. I look forward to reading your comments. Sorry to get this off my chest but it's nice to know that someone out there is going through the same thing.