Wendy C.

Hi Jackie, Congratulations on the baby! Yes, the same thing happened to me. I was walking briskly 5-7 times a week, doing yoga 4-5 times a week and felt great beforehand. Weeks 5-37 were awful, with a tiny reprieve for only two weeks at around the 6 month point. We had no idea about me having OH/POTS back then either, so nobody knew why it was happening. They had me on Prilosec, a beta blocker and a calcium channel blocker. In that regard, look at the bright side - at least you know what it is and can try out some of the known methods that help with it. Perhaps you can research salt, electrolytes, compression garments, etc - things that don't involve meds, since I see in your signature that you like to avoid those. Are you seeing a perinatalogist, instead of a regular OB? That might help, too. We want to have another baby soon, so our son has a sibling, but I am so scared that it will cause another huge relapse for me. I am trying to get as back to normal as I can before we start trying, but I have a feeling it'll all be for not because the pregnancy will likely set me back anyway. I am hopeful that a second pregnancy might be better though, since I have so much more info about OH/POTS and have a lot of methods that help me get by, all things that I had no idea about during the first pregnancy... Best of luck to you!!

Yes, I was thinking that salt amount was high, too. I take 7-8 salt tabs per day, along with 40oz of Gatorade, salty Cheetos or popcorn for snacks, plus whatever salt is in my meals and I think I am still under 10 grams! I am fortunate that it doesn't tear up my stomach, especially if I take the salt tabs with food. The water guzzling has helped again today. I took my toddler with me to the grocery store and got through it alright, since I drank about 10 ounces before getting out of the car and again when we got back in. I feel it starting to work after 3-5 minutes and it lasts maybe an hour. It is always nice to find something that works, especially something simple and natural!

Since they already know you are feeling so bad and considering going on medical leave, they might be receptive to reducing your hours each day? I did that back in 2006 and it helped somewhat. I went from ~ 45 hours per week to 27, so it was only 5.5 per day. I had to wrap up most of my projects first and we handed over some of my duties to others, since I couldn't be expected to still do my full job in only 5.5 hours a day. That might be a good way to transition towards a medical leave? I ended up quitting completely when we moved 2.5 hours away for my husbands job, even though I could've worked from home, and I felt so much better after about 5-6 months of physical and mental rest. (until a mega relapse when I got pregnant in 2010!). Good luck in whatever you decide.

In the "Changes" video posted at the top of the forum, Dr. Thompson mentioned the reason why we have trouble raising our arms above our heads, something about it putting pressure on the arteries or veins that supply our heads. I forget exactly what he said, but I remember thinking, 'oh, that makes sense.' I tried some squats and lunges today at home without weights and they both made me very lightheaded.

I stumbled across this good article while researching: http://www.ccjm.org/content/77/5/298.full It has a lot of great info on orthostatic hypotension, including many of the treatments they recommend. Most of the stuff has been discussed on the forum before in pieces, but this is a good summation. I even learned a few things. In addition to planning on trying abdominal binding, since leg compression isn't enough for me, I tried the quicker drinking of water tip today (rather than continual sipping like I usually do) and it helped several times. I hope this article helps someone else! Wendy

You could look into magnesium and vitamin D as well. Magnesium has helped me in many ways, including a reduction in pre-ventricular contractions and tachycardia, muscle tightness, dizziness, etc. I've noticed a better ability to digest carbs and some mood stabilization on vitamin D3. But, those two supplements plus fluid/salt loading still weren't enough for me, so after 4 months of trying to treat it naturally, I gave up and began Midodrine and 2 weeks ago added Florinef. Only fractional doses of each, but they help. Good luck!

Congratulations! J/k... Magnesium has helped me with the constant dizziness. I don't remember the exact details, but it has something to do with the muscles in the inner ear and behind the eyes being too tight if you have a magnesium deficiency, causing dizziness/vertigo, and magnesium helps to relax those muscles. (it helped my tight neck and back, too) I used to have quite the problem when moving quickly from one position to the next, shopping in a place like Walmart and looking up to see which aisle to head to next, or while looking up from my plate to the tv. Since taking magnesium 3 times daily, it has gone away.

Rissy, I took Cephalexan/Keflex for a sinus infection a few weeks ago and I was noticing how I felt better during it, too. They also had me take Advil every 6-8 hours, too, to help the antibiotic get past the swelling. So, I don't know if it was the 10 days of antibiotics or the Advil, but it was nice. I kind of dismissed the feeling better as just part of the antibiotics getting rid of my infection, but i did wonder if it also helped my POTS for some reason. I feel like I have another sinus infection this whole week, worse than the prior one, so I may be going back to the doctor soon and may get on it again if they think I should. Let's see if it helps again...

I remember when I first began Midodrine, a 1.25mg dose, it did work within 30 minutes the first 2 days and I was so excited about it. Then, I went for a couple of days where it didn't seem to work at all, then it went back to working again and stabilized after about a week. So, you may just want to give it a few more days. I take 2-3 doses of it now. It does help a lot, like making it easier to stand up longer while drying my hair, etc or doing kitchen stuff, but I wouldn't say it makes me feel back to 'normal.'. Good luck!

Oh, I hope this is just a temporary flare for you and that you don't have to quit school. I couldn't tell from reading this exactly which kind of pain you have, but I'll tell you something that helped me with my chronic pain issues. I discovered through my usual trial and error experimenting, that I was getting too much calcium (which causes muscle contraction) and not enough magnesium (which causes muscle relaxation), so my back and neck were always super tight, with lots of nerve pain in my thighs, hips and wrists. Now that I've drastically reduced my calcium and increased magnesium, the pain has gone away about 95%. (along with soooooo many other benefits from the magnesium!) If I have a day where I eat a lot of calcium, the tight muscles and nerve pain come back. Also, when I was experimenting with my magnesium dosage, I found that if I took too much, I would have major body weakness and the muscles didn't seem to work right, maybe they were too relaxed, but not in a good way? No idea if this is your issue or if this will even be helpful. I do hope it gets better for you soon!

Interesting! I'd love to try it or at least hear from anyone else on here who may get to try one. Perhaps someone knows an EMT who can let them try it?

I've wondered that, too. Maybe our blood is pooling more in the ankle or calf and not letting enough circulation get to the foot, so it becomes cold? Just a guess...

Thank you, that does seem to be a nice website! I just read The Spoon Theory article on there and will check out some more later.

I get cold feet often, too. But, if I wear socks or slippers for very long, then they get too hot. I have found that if I tuck one foot under the back of my knee while sitting, or sit cross-legged with one tucked, I can warm up the toes enough to last for awhile. I switch feet to get the other foot. Although the area behind the knee is a little warm, I think that what truly helps it is the pressure it puts on the foot. The reason I think that is that it works for my freezing hands, too - if I place them under the back of my upper thighs while sitting, they warm up much better than with any heating pad or blanket. I wonder if it has to do with either pooling or lack or blood flow to them, that pressure fixes somehow? If I remember, I'll ask my Electrophysiologist next week at my appointment.

That's funny, Amy! I have a pair of the same style you mention, from Juzo instead, and they only slide down maybe an inch every couple of hours. So, that isn't a big deal for me to pull them back up. They do get better/tighter for the first day after I've washed them, I notice. I wonder if maybe it is just the brand you have that doesn't hold up as well? Or maybe they are too big (or too short?) for you? I am 5' 9" and I thought that maybe they'd be too short, but so far, so good. Are you taller than me? That could be why, if so. I'm glad they help you. Mine are great, too!

Here is one more interesting article that talks about air pressure and the inner workings of the head. It is referring to air travel, but it is relevant, I think. I tried holding my nose and forcing air outward, the way you do to 'pop' your ears, during a storm today and it did give me a few minutes of relief from the headache. Gum helped a little bit, too. I couldn't force a yawn. I'd like to see more info about barometric pressure and our blood flow, etc, but at least this stuff might explain the headaches. http://www2.gi.alaska.edu/ScienceForum/ASF13/1308.html

Here is a good set of Q&A about barometric pressure and headaches. There are 3 questions about it, all towards the bottom: http://www.usatoday.com/weather/resources/askjack/wabiomet.htm (I hope the pasted link works, this is my first link pasting using an iPad) It is interesting that today, we are having a crazy wind storm that looks like it will bring rain soon, but my headache is only mild compared to the one from yesterday, which was a very wimpy storm.

I definitely feel worse before and during some/most storms. I live at 6035ft above sea level, at the foot of The Rocky Mountains in CO. I have only recently began (begun?) to correlate the storms with increased symptoms, such as: head pressure, sinus 'pain', chest tightness, joint pain, fatigue, etc. I will be having a few good days in a row, where I think that things are getting better and that I may be beating this thing called POTS - and then I will wake up one day and everything is back and sure enough, there is a storm either building up over the mountains or already over my house. Et voila, when the storm has fully passed over my house and I can see it's end out East, that is around the time I start to feel better. It happened just today and last Wednesday and... I checked Julie's link for altitude air pressure and it says that a normal day for my altitude is 616 mmHg. The conversion tables I found in a quick search don't even go that low, but for 675, it is 26.57, so mine is lower than that. It also said there is only 81% oxygen available here, as compared to sea level, nice! I guess I am used to it though. The only time I notice trouble breathing is when I am returning home from an airline trip to a much-lower-elevation locale. Or when I used to hike in the mountains and would get ridiculously out-of-breath right away.

I agree that you should consider your dosage, since it is a high one to start out with. Lots of Potsies have trouble with full doses of meds, so maybe that is the reason. Maybe it has really overwhelmed your system, so to speak. I knew I had those issues with meds, so when I began Midodrine several weeks ago, I started with only 1/4 of a 5 mg pill, so 1.25 mgs, and I only took it once per day for a week. I realized right away that it was helping me so much, but only for 4 hours, so I checked with my doctor and we agreed to add a 2nd dose, then a week later a third dose - all still at the 1.25 mg amount. Then, after about a month of decent success with that, she said I should try to increase the amount to 2.5 mg per dose. Unfortunately, the increased dosage didn't give me any additional relief and began causing new side effects relating to skin sensitivity to heater fans, wind, etc that were causing me to be really uncomfortable in almost any room, so I went back down to the 1.25 mg dose and only twice daily. (I tend to feel better in the evenings, so I opted to not take the 3rd dose since I don't often need it) It really has helped and I feel like I almost have my life back. I've been able to exercise again, do small projects around the house like window caulking, washing windows and walls, etc that I couldn't have even thought of doing before. Oh, I am also using thigh-high, open -toed compression tights and they help, too. Good luck with finding the right dose for you!

Yes, that happens to me, too. Sometimes I am surprised by what the blood pressure monitor and heart rate read, based on how crappy I feel at the time. I also had the same problem with the Holter monitor that they gave me during my pregnancy. The day I wore it happened to be one of the 1-2 days per week when my symptoms were mild. My Electrophysiologist (different one than during the pregnancy) gave me a 30-day Holter in November and that was much better. It confirmed that I have PVC's (premature heart beats) quite often, but it was usually after eating a big meal or a sugary dessert. By avoiding those things, for the most part anyway, I've been able to reduce the PVC's. Also, I have finally gotten to the perfect dosage of magnesium for myself and that makes a big difference. I tried to reduce it a couple of weeks ago and the PVC's came back instantly. Anyway, perhaps you could talk to your doctor again and say that the day you wore the monitor was not representative of your typical days and that you'd like to try the 30-day version of the monitor.

Julie, I hear you about the feeling of not bonding with my baby during his first 3 months because I was so out of it with my symptoms. It feels like a blur and I get sad when I see a really young baby because it makes me realize that I barely recall those times and I feel guilt for it. Logically, I know I did the best I could given the circumstances. Luckily, we have totally bonded over the past 14 months and all is fine on that front. I hope the same for you. Interesting how you said that your bp goes too low if you sleep on your side vs. back-I will have to test mine in both positions to see if it varies. I had those short periods of severe shakes while in bed during the past 2 years, but they haven't happened in a couple of months. It may be because I take 2 salt tabs, drink lots of water and a few sips of Gatorade immediately before bed. I also do my best to sip on Gatorade whenever I awaken during the night. The episodes would usually occur when I was laying on my side and was just about to fall asleep, but reached over to turn off the lamp. Sometimes they happen if I get startled awake, too. I mentioned it to 4 different doctors and they all shrugged and ignored it. I also have to lay in bed for about 45-60 minutes before I have the strength to get out of bed. Thankfully, my toddler is great at entertaining himself in his crib that long, as it really helps me out.

That is great, Lemons! Very exciting! I can't explain the concentration thing-interesting though. Good luck with completing the degree! Mine took me 12 years to complete (between moves, transferring courses to new schools, etc) and I worked full time while doing it, but it was a huge goal realized when I was finally done.

Yes! Sometimes I can't find the right word as quickly as I want to and I know it, but other times I'll say completely the wrong word and realize it just after I say it. For example: "Wow, what a clear, brown sky today. Oops, I meant blue sky.". It happened a lot while I was pregnant. It does mainly happen while standing. I do notice that I bump into corners and walls more than before as well.

That is interesting! I think I've experienced relief from sneezing, too, but never really put two and two together about it. I will keep an eye on it in the future, to notice better if it helps me. I wonder if sneezing is like a violent version of a vagal maneuver, since a cough is one? If I go outside on a sunny day and look up at the sun for a brief moment, I can usually make myself sneeze, so perhaps that'd work for others instead of pepper...

When I am sitting, it is 65-75. When standing, 95-105.