Wendy C.

I totally relate to what you said! I also have felt like a different person the past 2 years, but have not forgotten or given up on getting back to the tough and energetic person that I used to be. I will not accept a life in the pit, I will escape the pit. I will never give up either!!! Wendy P.S. sorry this is so short but I have killer migraine this afternoon.

Interesting. I've had a similar thing happen this past year, with swelling or lack of swelling. In Sept of 2011, I had an ablation and lost 7 pounds without trying in the 6 weeks afterwards. I was diagnosed with POTS 2 months after the ablation and went on an extreme amount of salt, Gatorade, and water and never had a bit of swelling and didn't gain any of the weight back (and felt horrible for 6 months). Well, the past 2-3 months, I have gained the 7 pounds back and even have a minor amount of swelling in my lower legs and fingers. I wondered if it meant I was getting better, too, although I still have bad days and don't feel back to normal yet. I cannot seem to lose any of the weight either, I've cut my calories and am doing yoga/Pilates literally almost every day. That always worked for me to lose weight slowly in the past, usually a pound a week, but now it isn't working at all. I also had a second experience with this when I first became pregnant in 2010- I lost 7 pounds in the first 3 months and I certainly wasn't trying to lose it. We had no idea about POTS back then, though. It must be all water weight or maybe blood volume? I don't know why the number was 7 pounds both times. Anyway, it is interesting...

My highest was 117/70 and that was on Midodrine, Florinef, high salt and wearing compression hose. Typically, it is about 108/65, but there were a few months there where it was consistently only 95/60. Oh, all of these numbers are from when I was standing up, too. Laying down it is much lower.

Salt tabs every 2.5 to 3 hours, salty snacks twice daily, magnesium every 6 hours, midodrine twice daily, alternating Gatorade and water all day-even when not thirsty, thigh high compression stockings, staying indoors if it is hotter than 80 degrees outside and especially if there is no breeze, being careful not to overschedule my day or my week-only leaving the house for errands or get togethers maybe 4 days out of 7 and not usually on back to back days, avoiding activities that involve standing still, and having hope/positive attitude that I will one day get better! I have already gotten significantly better than I was in the Fall of 2011, so it seems to be working! I hope that you can find some things that will work for you.

Good luck on getting pregnant! If it doesn't work out this month-there is always next month! It took us almost 3 years, but he was worth the wait! I was on Metoprolol during my entire pregnancy and also on Flecainide, a calcium-channel blocker.

That is great! I hope it keeps up for her! Yes, I feel better on days when it is below 82 or so. The past 10 weeks of mostly 95 degree temps have been hard, with only a few days below 85. Even though I stay inside almost all of the time and have our A/C set on 72, if it is above 82ish outside, I am much more symptomatic. I had to increase my Midodrine dosage and almost double my salt tabs and it still wasn't enough. I am so glad that Fall is coming. I have also been able to start up my full exercise routine again the past 7-8 days, whereas the past 10 weeks I could only do small portions of the routine and certainly not every day.

Thanks. I have a call in to my Electrophysiologist, the one who prescribed it to me. I do recall her saying initally that it could give you a strange rash on your neck, but I thought she meant goosebumps or the tingling.

Yes, I cannot tolerate collared shirts or heavy necklaces anymore, along with sitting down in jeans or even my bra line hurts as well, later in the day. But, I can tolerate thigh high compression stockings, spanx-type high-waisted biker short things and even some neoprene abdominal binders at times. We are so weird, huh?

That definitely sounds like an awful way to have to live and I hope that it is only temporary for you. I have seen all of your other posts and it sounds like it is pretty bad for you. I really hope that you can find some meds or supplements or compression or whatever that will help you to improve and feel better. The only way I found several methods that helped me were to research, visit doctors, experiment with dosages, etc. My thoughts on your question are: - it will probably be hard because your muscles are likely very weak after 5.5 months of not walking (I haven't seen you mention in any posts that your legs are paralyzed, so I assume they will technically work for you, if I am wrong, forgive me) - there is really only one way to find out what will happen - try it, with your husband right there to catch you if you do happen to fall - fear and worry can be great immobilizers and most often what we fear will happen actually doesn't - walking is unique in that nobody else can do it for you, it is something you have to do yourself Good luck! You can do it, I know you can!!!! Let us know how it goes. Wendy

I was taking 1.25mg of Midodrine twice daily for a few months, then went up to 2.5mg twice daily, and a few weeks ago, I went up to 3.75mg twice daily.(that is 3/4 of a 5mg pill, in case you are wondering) The weeks on end of of 90 degree temps caused too much pooling, thus my increases. Right around the time that I increased to my current/highest dosage, I noticed this 'mark' on my neck. It has remained the same in appearance and does not go away. Sometimes it itches. It is raised, red and sort of in the shape of an upside-down fork, with another small line next to it. The fork-shaped bit is about 1 inch long and the single line is maybe 1/3rd of an inch long. It has been there for probably 3-4 weeks now. Has anyone else experienced such a thing with Midodrine or is this probably related to something else? It is not the same as the goosebumps or scalp tingling/pain you can get with Midodrine, because I get those, too. Also, I Googled it and there is nothing clear about it, only mentions rash as a side effect, but that is usually in reference to allergic reactions to the drug and this doesn't seem like a rash to me. I will check with my doctor soon, but I have a feeling they will just send me to a Dermatologist and that will take weeks for the referral and appointment setting, etc. Thanks everyone! Wendy

Hi BellaRose, Congratulations! Don't get yourself too worried about not being able to play with the baby yet, you never know, you may feel a lot better after the birth. I had quite a lot of relief from my insanely awful symptoms about 6 weeks after my son was born. Really, even 24 hours afterwards I felt a noticeable change. When they are young, the first 6-8 months, all they do is lay or sit around since they aren't mobile, so you can lay around with him/her or sit on the couch together and play. There are lots of great toys and activity gyms that are made for the floor and you can just lay near them and interact if you aren't feeling good. There are also Exersaucers, door jumpers, Bumbos, walkers, etc that you can place the baby in and they can have so much fun while you watch them. All they really want is for Mommy to be with them and interact together, they don't care if you can't run around the house. (that comes later, when they learn to walk!) Basically, you will figure out a way to do it once it is happening - you'll find a routine that works for you and your baby and a strength and patience that you never knew you had in you. Also, the baby will nap a lot during the day and you can use that time to rest and work on yourself to hopefully find some good treatments that will help reduce your symptoms. Regarding the baby shower, hopefully you have a couple of good girlfriends who will plan and throw one for you. Mine did, but I had to give them some specific instructions on what I could and could not handle. For example, I asked them to setup the room so that my seat would be directly in front of the window a/c unit (it was in August), I asked for no games that involved me standing up or walking, I asked if the preteen daughters of one of the shower-throwers could hand me each gift and set it aside for me after I opened it since I was so weak, and I even brought my own chair to be sure I could sit comfortably. You mentioned reclining, so maybe you can plan it to be held at someone's house (not your own, too exhausting to clean and prep for!) who has a recliner and just mention at the start of the shower to all of the guests that you are feeling so sick that you'll have to recline the whole time. You don't have to explain POTS to them if you don't want to, just say something to the effect of it being a miserable pregnancy and they'll understand. You can also ask the guests, or the young girls who may be in attendance, to get you drink or food refills, too. They will be all too happy to help you! I had stressed out and dreaded my shower for weeks in advance because I could only leave the house for doctors appointments for almost the entire pregnancy, but I actually ended up having a pretty good time! I hope the same for you. Just try to get through each day the best you can and take it easy, ok? It will all work itself out in time. I wish you the best of luck! Wendy

McBlonde, how long have you been on Florinef? My guess for your dilemma is that if you've only been taking Florinef for a few weeks or months now, your body has finally changed/adapted to it and can now retain water and salt, like it couldn't before the Florinef. Now, with fluid and salt retention occurring, you are getting the subsequent high blood pressure. I recall a post on here where someone (Kimbellgirl maybe?) said their doctor recommended a certain dose of Florinef for a few weeks until the body stabilized, then a lower maintenance dose. I noticed that I only needed it for about 5 weeks for my body to do somewhat of a reset and begin to retain fluids. It wasn't as drastic as yours sounds, though. It only changed my BP from around 95/60 to 115/65, so it caused widened pulse pressures for me. Anyway, just a guess for you....

Mine has been as low as 29 and as high as 60, but usually runs in the 35-40 range. Whenever I am on Florinef it is always high, in the 50's.

I don't know how to answer the permanent damage question, but I do notice that I feel so much worse here in CO on the days when it is hotter than about 88 degrees. We have had an exceptionally hot summer, with weeks of 95+ and I thought I was having another relapse, but then when it got cooler (low 80's), I felt good again. Then, it got hot again the past few days and I haven't felt good again. So, I hope that it is only the heat causing a worsening of your symptoms and that it will get better after the summer or if you move back to cooler temps!!

Yes! We saw it only 36 hours after the Aurora shooting and only 1 hour south of where it happened. We were not going to let the horrible actions of one psycho stop us from living our lives to the fullest. It was really good! We saw it in IMAX and this time, it didn't give me very many physical troubles, maybe since it wasn't in 3D? I did let myself run out of water at one point, which was dumb and I felt it, but it was just so good that I didn't want to leave the theater for even 1 minute. Which part(s) do you relate to your medical trials and tribulations, was it what happened in the pit? Trying not to give any spoilers, of course. It didn't make me think of my medical issues, but more about the state of our country and the types of things that are threatening it right now and how important it is that we overcome them. In that way, it was very motivating for me. Wendy

Thanks, McBlonde! I ordered them today. Worth a try...

Compression running pants? Please tell me more? Thanks!

Fascinating article, thank you! I am going to see if I can get this to my Electrophysiologist.

That is great that you found a good product to help you! I Googled that exact name and couldn't find it, but is this basically what you mean? http://www.maidenform.com/flexees/collections/easy-up/flexees-easy-up-pull-on-waistnipper-2368 That must mean you have abdominal pooling, too. I keep trying different products like this or the kind that goes to the thigh, so I can wear dresses or shorts in this hot weather. Wendy

My experience with a 3 week trial of Florinef 2 months ago is that it did something to finally give my body that push to be able to handle a small amount of caffeine and occasional alcohol again after many months without them. The only thing I can think of with your Florinef scenario is that maybe you weren't taking enough extra salt and potassium and since alcohol can deplete your body of electrolytes, maybe the beer just sent you into a further electrolyte-deprived state that was just too much? There are a lot of prior threads on this site about taking extra salt and potassium while on Florinef, you may want to look those up. I am curious if caffeine would be a good replacement for you, instead of the alcohol? Not a Red Bull, but maybe a Coke or single cup of coffee, for example? How does caffeine seem to affect you? I wonder if the 3 pm candy bar's good effects are due to the caffeine content? I have a similar need around 3-4 pm for chocolate. Wendy

I know you guys are going to think I sound like a broken record, but correcting my magnesium deficiency has almost completely eliminated my sensitivity to sound, smells, chemicals and light. Something to look into...

Hi Mully, I have no idea if they can help you or not, but I met the owner of a local service dog place here in my hometown a few months ago at a social gathering and she seemed to have a good organization. It is called "Angel Service Dogs" and is in Colorado Springs, CO. I think her main focus is on nut allergy dogs, but I do recall her saying that they do train them for other stuff, too. Worth looking into, at least. Best of luck!

Congratulations! My tip would be to adjust your chair so that so can cross your legs, sit on a leg, bend your legs up under your butt, etc, without hitting the keyboard tray or desk bottom, to reduce blood pooling. I think you have pooling, since I've seen you talk about compression socks on other posts. Good luck!!!

Consistent magnesium supplementation has worked for me. It took me almost 3 months to get to the right dosage and discover I needed to take it 3 times daily and reduce my calcium intake as well, but now I so rarely ever experience dizziness. In researching magnesium deficiencies, I learned that it can cause tightness of the muscles of the inner ear and of the eye, which can cause pressure headaches and dizziness. Don't expect overnight results if deciding to take magnesium though, it does take time if deficient. Also, I found a trick that helps clear head pressure immediately that results from barometric pressure changes or other reasons. Take a large breath in, then use your thumb and forefinger to plug your nostrils/pinch your nose, then close your mouth shut and exhale the breath really hard. It will pop your ears and release the pressure.

McBlonde, I may have positional vertigo and I am on Midordrine, but I'm not sure if that is what it is or what is causing it. I only notice mine when I wake up from having been asleep for many hours, so I am groggy and still have my eyes closed - but it feels like my eyeballs are rocking up and down inside the sockets, kind of like when you are on a boat in rough seas. When I open my eyes it stops, perhaps because I have control of them and am focusing on the ceiling or wherever. I haven't noticed if it happens more when I have just rolled over in bed, but I am guessing so, since that is typically what I do when I wake up and feel so uncomfortable in the current position. If I am remembering correctly, this began a few weeks before I started taking Midodrine though. Plus, I take my last dose of Midodrine at around 1pm, so why would it take until around 6am to give me the rocking eyeball/vertigo thing? Anyway, I don't now if this helps at all, this is just the info I have so far. Wendy