migraine

MomtoGiuliana: I'm going to play devil's advocate a little (and I hope I don't sound like I'm downplaying your rough experience - or offend anyone else)...but that could describe anyone's pregnancy experience. I belong to a Mom's group and several of these ladies (without POTS) have had all or at least one of these problems. I have read several of these postings and there seems to be so many negative responses in regards to POTS patients having babies. I was not diagnosed until after my third child, but had I read these postings prior to becoming a Mom I would have been terrified to conceive or deliver. It's my (non-medical) oppinon that many doctors are telling POTS patients that they can't get pregnant or shouldn't just because they don't know enough about POTS and pregnancy. Many of us have mild (but annoying) symptoms that would not affect a healthy delivery; or very severe symptoms - i.e. if you can't walk across the room without passing out...you probably should not try to deliver and carry a child. Just like women (without POTS) each person should take into consideration their current health situation and evaluate and educate themselves on the etire experience with and without POTS. I think it all comes down to an individual basis and I don't think we can really say one way or another POTS patients should or should not become pregnant. The book "What to Expect When Expecting" is an excellent resource for possible situations described by MomtoGiuliana. I also extended my research to some areas of this web page as well as reading others' postings regarding POTS. My newest hobby is watching the discovey channel with all day episodes of "Birth Day" and "Special Delivery." It seems many women these days are experiencing erratic and high blood pressure during delivery, but it seems fairly common and treatable and I think they are able to handle the BP fluctuations of POTS patients as well. This weekend it was very hot, and while attending a healthfair I felt very dizzy. A couple nurses were quick to fan me and take my pulse and blood pressure. They freaked out because my pulse seemed to be erratic. Assuming this was all POTS related I brought it up to my OB/GYN who was not impressed. He said most women have this problem in their last trimester. I'll be the first one to blame many of my illnesses on POTS, but I also have to admit that the ones I'm suffering from now seem to be just plain old pregnacy related.

Uh, well I guess I could answer based on my own experience if POTS gets worse...yes...and no... My main symptom is migraine. With the delivery of each child I had severe migraines; about once every 3 months after my first, once per month after my second, and 2-3 times per month after my third child....leading me to finally be tested and diagnosed for POTS. My other main symptom was fatigue, although no one has really taken that seriously with 3 small children My children were all about 2 years apart. Towards the end of my second year, my body seemed to recover and just as my POTS and other aches and pains started to subside I got pregnant again. I guess everything was feeling better I guess my opinion is that it could get better or worse, but give yourself a couple years to recover and make sure you have family support just in case. Unless you had a tramatic experience with your first one, I don't know why you couldn't have any more children. For me it was worth the extra migraines

Well, stage fright I am used to, but I didn't expect stage fright for my child! My oldest who is 6 performed in her first talent show. I was excited to be at the other end of the spectrum as a spectator. I was so nervous for her and I could feel that racy heart feeling start going. I thought I was going to explode because it was taking such a long time for her turn. Once she performed I could breath again but was shaking up until they announced her as the winner. I wonder if my heart would have exploded if she lost. I tried to be cool about it and luckily I was in the audience while she was backstage so she couldn't see her Mother turn into a spaz. My Mother was yacking about this or that and I just wanted her to stop talking so I kept snapping at her. She knows how I get when I'm nervous, but I guess she did not expect me to be that nervous for my child. I even got my POTS weepies and cried a little while she was performing. Luckily I had a camera over my face to hide it. Well, the beta blockers seem to work for me, but it looks like I'm going to need to pop an extra for all my kids events now

Yes, I am about 7.5 months pregnant now and feel like I have been taking a little vacation from my POTS. I am sort of dreading post-pardum because I know my symptoms will creep back. I have been educating myself about POTS and pregnancy, I have a team of doctors ready to jump at any sign of trouble, and I have a history of good deliveries as this will be child #4. So, I'm thinking positive that everything will be fine. I guess it depends on the seriousness of your POTS and your symptoms.

I'm sorry about your dissappointing night out. Recently my husband got a free set of tickets to a TUBES concert. They were before both of our times but they sang a song called "She's A Beauty." They are probably in their 60s now, but we heard they still put on a great show. Anyway, for a couple of weeks my husband has been so excited to go. He just assumed I wanted to, but a crowded smokey bar, standing room only, does not sound appealing to a pregnant POTsy woman. I ended up trying to promote a boys night out so he and his brother could use the tickets. They had a great time and he was still able to go. Unfortunately I have had to cop out on several events like free (Cleveland) Indians tickets, Shania Twain, camping, etc. I seem to have found ways of finding alternate activities or letting my family go without me. I think it must be harder for you still in your twenty's. I have also met many understanding people at church. Many of these women are much older than me, but seem to be more my pace and I enjoy talking to them. I have only a few close friends around my age and they are totally fine going to a dinner and a movie or just hanging out and watching the kids play. Yes, maybe our partying days are over, but we have other things to look forward to right

Oh my gosh Opus88, sorry to get off the subject here, but I can't believe there's another music/singer person on this sight - I'm so excited. We'll have to exchange e-mail so we don't bore everyone else with music stuff. It seems very weird because you would not think POTS patients would be singing or performing because of the very examples we have listed. Yes it seems like a slap in the face to be given a talent and letting it lay dormant. I guess I have been too tired to think about it much. There are times I feel really depressed about it. I should have known from the Opus88 that you were a music person. I have had (undiagnosed) POTS my entire life and have always had stagefright no matter how many concerts or appearances. Once out of college my auditions became unbearable and each one sucked every bit of life and confidence out of my body, but I needed to keep going to get jobs and feed myself. While doing summer stock, my husband rode along on his white horse and we got married - he was/is a guitar player. We started a country band together (A far cry from opera or musical theater) and we performed 2-4 times a week while I worked part time temp jobs. He convinced me not to be nervous because he was up there with me and that most everyone in the bar was drunk and didn't care what I sounded like. He was right and we had a great time and made pretty good money. Once the children started coming and the POTS symptoms getting worse my main problem was staying awake long enough to perform the long 10pm-2am sets...I couldn't do it now if I tried - especially standing that long. I finally quit the band after my second child was born. I actually don't miss it really, although when they play really big outdoor shows I still wish I could be up there. My 6 year old has started to play drums in the band. She has a talent show tonight and I'm actually nervous for her. She gets so many compliments and her father-guitar player is always complimented for passing on the music gene. Selfishly I want to cry out...hey I used to sing, I guess that's what hurts the most right now. It has helped me to focus on the girls' music or sports talents, because I know there is still a glimmer of my old self passing on to them. People don't realize that being a music teacher or conductor is such a physical career. Many of us with POTS have had to quit our jobs because of this illness. I am lucky to be able to keep on with my current job, but I don't think I could ever take the physical aspect of singing, teaching, or conducting again. I tried to switch over to teach kindermusic and other music classes at the YMCA. I litterally had to take a nap after each class. I can only imagine how you feel losing that gift and energy level. I still sing at church or in the car and notice my voice getting warbly. I know what you mean about memory. I'm almost scared to be in a show for fear I would forget my lines or something. I have not quite accepted the fact that my singing career is probably over. In the back of my mind I keep thinking that my energy will come back and that I will rejoin the band at some point. I currently work full time at a College Conservatory of Music. My work is very enjoyable and I am inspired by the students that I see up and coming. I would feel like a failure if I didn't have music in my life at all, but working here has made me feel like my Bachelor of Music wasn't a total waste of time. I 'm glad you are able to keep your choral group going and keep some music going in your life. We'll have to chat some more. Sorry to everyone else for getting off the subject

Jessica, it sounds like this move has you really freaked out. If not a shrink, I think you really need to sit down with a good friend and vent...or have a nightly venting session with your husband before you go to bed and get it all out so you can sleep. When I moved into my first house (no kids yet) I had so much energy and was so excited. Every box was labeled and packed just so and I was completely moved in with everything put away in about a day. My second move was not so pretty... Having 3 kids I came home from work and stared at the house and everything that needed to be packed, planned, and organized. It was so overwhelming that I simply didn't do anything at all - totally out of charactar for me. My husband was in shock at my inability to "get moving." I ended up running to a grocery store (on moving day) for boxes and simply throwing anything in my path into boxes. 2 years later and we are still unpacking boxes and re-discovering property and cooking utensils we forgot we had You will get through this move somehow right? They say the most stressful things you will ever go through in life are a wedding, moving/house, birth, or death. You can do it! Hang in there...and then get some sleep

Hi Ann, Yes I do have these weird little anxiety bouts. I feel uncontrollably hyper, yet a little sick at the same time. My heart is probably racing, but a weirder sensation is a sense that I am starving or something. My doctors used to think this was a hypoglycemic attack but the food didn't really seem to fix it. It usually lasts 1-2 hours once or twice a day for about a week....therefore I always thought it was a PMS thing...especially because I usually become very snappy and emotional. Since being on my beta blocker it does not happen as much, and when it does I try to keep to myself so I don't accidentally bite someone's head off or something. When its really bad it will sometimes lead me into a migraine and then I'm a waste of flesh for a couple days. What is really funny is that I used to be a singer (POTS patients, I guess, are not suppose to sing.) During really big concerts I would get so nervous I had to run or something just to release energy. By the time I performed I was usually short of breath and my entire body was shaking. I remember once I played Maria in West Side Story. During the scene on the stairwell where Tony and Maria sing "Somewhere" my Mother was amazed at the special effects of the wind blowing my white gown in the breeze. I laughed, that was no special effect...that was my leg shaking throughout the entire scene. Anyway, in college (even before my POTS diagnosis) I was given a beta blocker to help me get through my senior recital. It worked wonders. I have not been tested for the catecholamines so I don't know much about that. Now if these attacks get really bad I take an extra beta blocker for the day and it usually subsides. Anyway, I guess I know what you're saying and you feel a little crazy like you need to crawl out of your skin for a bit. If it happens often, you may need to try some different perscription combos with your doctor. Good Luck.

Yes, I too invested in a better mattress and pillow. I bought one of those tempre pedic mattresses and it came with a pillow. I must warn you that going from my comfy, squishy, old mattress to this firm relentless intruder was quite an adjustment. It took me an entire month to get used to it and I even called to take it back. They made me keep it for a month insisting that it would get better, and that it took that long for the foam to loosen a little. It did, and now I really feel a difference if I sleep on a hotel bed or something. I fall asleep much quicker. My joints (especially for POTS patients) feel so much better. My feet used to crack and ache in the morning along with my hips and they don't anymore. A lot of my neck problems have also gone away since using the pillow (also hard to get used to.) Anyway, it's quite an investment, but if all else fails it might be worth looking into.

Hey Merrill: The nurse that read my results was very nice, but I could tell she was in a hurry. I really didn't get any specifics. Maybe the next time I actually go to my cardiologist he will give me a copy. She did mention something about a quick increase in weight gain. I think my symptoms are definately worse because I am pregnant, but I am guessing I have always had this. I have been snoring as loud as an old man since I was a toddler and have always had sleep issues. The lady at the insurance company said someone will set me up with my machine and probably after I deliver it will need to be readjusted and turned down. Here's a couple funny things...I had a follow-up appointment with my neurologist yesterday. Appauled by my weight, I stopped looking at the scale at each doc's appointment...I don't even want to know! Apparently I weigh the same now as I did three months ago. I have a huge belly full of baby, so the doctor can only figure that even though the baby has grown...I have lost weight - sounds great to me! He was just concerned that I was dieting or something. Not really, but that inspired me to start walking again and I bought about $100 worth of healthy food - no McDonalds today! It's amazing what a little possitive reinforcement will do. The other thing that scared me a little was his sudden concern about my delivery. When I first saw him 3 months ago he said not to worry about the delivery and he and the cardiologist would would be on call if anything happend. After reading the sleep apnea report though (and maybe doing a little further research) he and the cardiologist would like to be notified and on stand-by when I go into labor. He said he is not concerned, but would like my heart monitored after delivery. I guess better safe than sorry. The lady at the insurance company actually has a CPAP. She said it's a little like sticking your head out of the window of a moving car and breathing the air. I'm sure It'll take some getting used to. So now do you think my POTS symptoms are worsend by the newly diagnosed sleep apnea?....or do you think my POTS symptoms might assist in causing that sleep apnea? - that is the question????

Opus88, actually my OB/GYN suggested a little magnesium to go along with my toprol during my first trimester when I was having awful migraines. I was afraid to try it though because I thought it would lower my blood pressure. I was diagnosed yesterday with sleep apnea which would explain being tired all the time. I will get a CPAP machine in a couple weeks. If that doesn't help then I will look into the Emergen C and possibly magnesium. Thanks for the info

Hey Jessica: Did you happen to catch the sleep special that was on around 8:00pm a few weeks ago? It was on TV on a regular channel. I thought it was very informational. Your story is familiar to me. After I had my 2nd child I felt very restless. I was trying to work, be a perfect Mom, and sing in a band on the weekends. My children were up very early, and I was totally exhausted. At night I just laid in bed and think about how many things I had to do and count the hours that I would not be getting sleep. Anyway this sleep special said the number one sleep disorder is insomnia. If it takes you more than 30 minutes to fall asleep or you wake up several times during the night....then you've got it! This is almost always stress related. You can either take something to help you sleep or go to therapy. I saw a shrink for exactly two sessions...he simply said, "you are doing way too many things, something must go!" I quit the band. That gave me my weekends free and time to clean, think, plan, and be with my kids. Once I was able to prepare for the week ahead...I stopped thinking about it each night before bed. Anyway, it sounds like you're overloaded as well. Once I had the 3rd child I was able to fall asleep about 1 minute after hitting the pillow. Now I can't seem to get enough "restful sleep" and was diagnosed yesterday with sleep apnea. Geez what next! So I guess I get to get started on this CPAP machine, we'll see if I feel any better or its a big waste. Meanwhile, my husband is clearly on the insomnia path so I am really trying to coordinate our sleep habits..... The most important thing they mentioned on the sleep special is your wake-up time. If you have insomnia it is not what time you go to bed that is important...it's what time you get up and get going. I have two definitions of this. During the week I get up at 7:00am and get going to work! During the weekend my kids force me to get up between 7:30-8:00am...but I'm not really going, if you know what I mean. I sort of meander and slowly start my day. I may not even shower until 10:00am or something. Anyway, I guess my theory would be even if you are up at 7:30am every morning...you need to get going. Pretend you are going to work or do an excersice or something. This might help your sleep pattern. Also, I guess you're not really suppose to take much more than a 30 minute nap during the day...otherwise you may be groggy and have trouble falling asleep at night. It was a very informational program. I wish you the best with your routine. Oh - PS, they also mentioned training your body to recognize that you are ready to sleep. Some of the suggestions listed above would work such as drinking warm milk, the smell of lavender, or a warm bath before bed.

Alas...the results are in. I have sleep apnea. I guess I stop breathing about 18 times per night. They are only for a second and then I kick back in. I really didn't think I had this...but here I go with yet another thing wrong with my body. Now I have to have a CPAP which I am not looking forward to and have to jump through circles with my insurance company. I am so sick of having all of these strange things wrong with me. I asked someone who has a CPAP if this really improved their sleepiness during the day and they said, yes, it really does help. We'll see...what a pain!

Hey Opus88, where did you purchase those Emergen -C powdered drinks? I'm sure I have chronic fatigue syndrome, but it has never been looked at seriously...I have had extensive testing that has showed signs of epstein barr or/and CFS, but no one has ever taken them seriously because I have 3 kids under the age of 6 and they thought I was just tired from that. I was also advised recently to do a sleep study and am hoping to get the results today. I think the CFS is often overlooked because we have so many other symptoms from POTS that would naturally make anyone tired. I feel like Huey Lewis when I say, "I want a new drug..." I would love it if there were something out there to give me an energy boost or speed up my metabolism or something. It's just hard because I don't want it to speed up my heart or make me feel hyper either. I'm always looking for something.

I think it depends on your body. There seems to be a lot of struggles and miracles as well regarding POTS and pregnancies. I don't have endometriosis, but I was very symptomatic when I became pregnant this time. In fact, I was having all kinds of POTS troubles and was just getting ready to start another round of doctors appointments when my pregnancy test turned positive. You just never know