cmreber

Hi Joann! After going to the AZ Mayo Clinic and undergoing 5 days worth of tests, the results showed hyper POTS for me. I seem to be one of the lucky ones, however, because I have had good success with Metoprolol (I take 50mg twice a day); being on this and doing some lifestyle changes has seriously helped me get back to my normal life. Of course, I know that I am not the same as I was before I got sick (I was super active: dirt bike riding, street bike racing, snowboarding, kickboxing, surfing, hiking, mountain climbing, you name it, I did it LOL...) but I can get out of the house, drive, go shopping, and I hardly ever have to flake on my friends and family anymore. I even still travel, which is something that is incredibly important to me. I do work from home, which is nice since mornings are still the worst for me, so it's hard to say if I would be able to maintain a "typical" job, but this works for me. I have been fighting pretty hard to get back to my life because I can't imagine not doing the things that I love, but it has been a struggle. I responded, to your post though, because I wanted to give you some hope. At least in my case (and of course, everyone is different), I have seen drastic improvement from when I first got sick. Before, I had to have a chair in the shower and couldn't get out of bed until noon. Heck, I couldn't walk through WalMart to save my life back then, lol. I still get frustrated from time to time when I have a bad day or a few bad days in a row, but when I look at how far I have come in the past 2 years, I can count myself pretty lucky that I have seen as much improvement as I have. I can only hope it gets better from here too! I really wish the best for you and everyone else on here, and I hope someday we all can look back at our "POTsy selves" and not recognize that person because we are so much closer to being our normal selves again!

I know that my cardiologist (who originally diagnosed me with POTS) mentioned that SSRIs can also be used to treat POTS, not because of depression, but because they inadvertantly help with disautonomia. It seems to me that if they were going to accurately do any sort of TTT, they should have done it without the meds. I know when I did my testing at Mayo Clinic, they had me go off all meds (I take a beta blocker) for 24 hours before hand so they could accurately see what my body was doing without meds. I also agree with Jangle, I know that I had no problem with anxiety prior to POTs, and now I will get the occasional panic attack due to adrenaline surges; for me, anxiety is a symptom due to POTs, not a reason for the POTS.

I just got back from a Christmas Bahamas cruise and had a fantastic time. I have random anxiety issues, but not all the time, so that wasn't too much of a factor for me. (I am also on a BB which helps a lot with my tachy and dizziness, etc). The good thing about a cruise is that you can do as much or as little as you want...which is probably the best case scenario for a POTsie traveling. If you have an interior room, it's totally dark and you can sleep whenever you want. You can lay around and read a lot or join in the activities on the boat, it all depends on how you are feeling. (You can even have them deliever your food to your room if you need them to.) The worst part for me was the fact that we had to fly to New York to get on the ship (I'm in California), but I loaded up on salt and fluids beforehand and wore compression stockings (thigh high) and, aside from feeling kind of a general queasiness, I didn't have too much trouble on the planes.

It's interesting that you brought this up because I was just discussing this with my husband the other day. 2 years ago, when I first got sick, it was the end of December. I have steadily gotten better since then, though sometimes I wonder if I will ever be 100%, but I have been wondering if there is some sort of cycle to it, because it seems that I do start to feel worse come winter time. You would think it would be worse in the summer because it's hot and hard to eat a lot, but it seems that, starting around September, I have more issues. There are some other reasons emotionally why that time of year is difficult for me, so I would also have to wonder if that doesn't play into it too.

From what I have seen on here, there are lots of different TTTs. I was labeled with hyper pots after I went to Mayo Clinic in AZ and did 5 days worth of studies. When I did the TTT, they had me go off of my meds (I take 50mg of Metoprolol twice a day) for 24 hours before hand. They did the QSART and Valsalva testing and then put me up to 70 degrees for 10 minutes. I only made it to about 7 before I felt too awful to continue, but my heart rate went from 90 to 154, and my BP from 126/82 to 155/98. I'm sure there would be a lot of factors...how long they do it, how hydrated /dehydrated you are, and especially if you were on meds or not.

Dr. Goodman classified mine as HyperPOTS and my blood pressure typically raises along with my heartrate upon standing (& when I did the TTT). I also have adrenaline issues, so I think both of those things might be reasons the BB works so well for me. & like you, I don't have to worry too much about my BP dropping too low (although, mine does dip down at random times and has since the beginning, before I was on the Metoprolol).

Like everyone on here said, we're all different, but I have been taking 50mg twice a day for about a year and a half now and I feel like it has helped me function almost like a normal person I don't think I ever really got side effects, other than just a constant fatigue...but I'm not actually sure if that is from the medication or if that's just part of the POTS. I have actually been talking with my doctor for awhile about trying to wean myself off of it, not because I have any problems with it, just that I would prefer to not have to take anything at all. Unfortunately, I can tell when it's time to take my next dose, and if I am late I get pretty tachy and don't feel good, so I'm probably stuck with it for awhile longer. Crossing my fingers that someday I won't need it! Hope it helps you!

I haven't heard about combination POTS. I do have to say that mine doesn't seem to fit in just one criteria. When I first got sick two years ago, I passed out twice, which happened to be the only two times I've ever actually passed out with this. When I first went into the ER, my heart rate was very high upon standing, but my BP dropped. I was admitted because they caught a weird rhythm on the heart rate monitor, and then while in the hospital, both my heart rate and BP would be normal while in bed and then increase insanely high upon standing. I will never forget the look on my RN's face when he saw the BP go up so high along with the HR lol. But then, a couple months later, when I finally went to a specialist in Stanford, he diagnosed me because my HR increased and BP tanked while standing. For a long while after that, my BP would drop like crazy if I stood for any length of time and I would get pre-syncope really bad. But then I went to Mayo Clinic a few months ago, and the TTT showed BOTH my HR and BP increasing drastically... Not sure why, but my POTS seems to flip flop almost in cycles??? Beta blockers have really seemed to help though, along with increased salt and fluids in my diet, and exercise. I also have joint hypermobility and blood pooling issues.

I have actually noticed a big difference with the salt and fluid increase. I don't take in nearly as much salt as they recommend, but I grew up in a household where my grandma had to watch her sodium intake so we never used salt in anything. As I got older, I continued to buy unsalted everything because that's what I was used to, and apparently should have been eating more! lol So, I now use a lot of salt by my standards, but probably not by many other people's. Regardless, the salt increase has defnintely helped, and, more than that, I think the fluids because I always had a tendancy to run a little on the dehyrated side pre-POTS. Now, if I slack off on the salt and fluids, I really notice a big difference...especially with being tachy. k&ajsmom, I wonder if it is an absorption issue for you then? The IV maybe helps because it goes directly into your veins, while the fluids and salt you take in have to be processed and absorbed through the stomach and GI tract?

I also use the Nuun hydration tablets. I get them from our local outdoor sports shop in my town. I can't stand Gatorade and switched to these awhile ago. There are different flavors and it seems to work well for me.

Hi there! I was a phlebotomist for three years before I quit to help my husband run our business (and right before I ended up getting sick). (Unfortunately the vWD test takes a lot of blood to run, though that doesn't make it any less awful for you and recovery after that much blood being taken! ) I know that we would sometimes get people in the hospital with severe anemia, etc. and they would have orders to draw "pedi" tubes (what we draw for infants) whenever possible. Many of the daily blood work they will probably be drawing (metabolic panels and cbc, etc.) do not require much blood to run the tests...at least at our lab they didn't (some instruments may be calibrated differently than others). Because of the vWD they may end up doing certain tests (like PT INR or PTT) which at our hospital did unfortunately require a full tube. I would talk to your doctor about putting in an order for the lab to draw minimum amounts if at all possible. For at least some of the tests this should be doable? On the plus side, you will probably have an IV which may help a little. Also, liver is supposed to have a ton of iron in it, and when I first got sick and had a lot of trouble with anemia, I added that to my diet for awhile. Also, some dried herbs, like dried Thyme are pretty high in iron. Also clams and other shellfish (if you're not allergic), as well as a lot of things others have mentioned. Good luck with your surgery and wishing you a speedy recovery!

I've used one before. It's very weird to use at first, but it definitely helps!

Very interesting! Issie, do you happen to know if the "type" of POTS matters in his theory?

First of all, Mytwogirlsrox, wow! That is certainly traumatic and scary! I've had hyperPOTs for 2 years now. My husband broke his back snowboarding right before I got sick...I was feeling "off" prior to that, though it was definitely a steady decline after his incident. I have wondered if it had anything to do with the stress of that (he had to go by ambulance to see a neuro surgeon because his burst fracture was so close to damaging his spinal chord--fortunately all turned out best case scenario and he healed up perfectly), but my doctor doesn't seem to think that caused it. I got flu-like sick right after staying in the hospital with him, and my doctor thinks I may have picked up a virus while there that set everything off...but sometimes I still wonder if the stress had anything to do with it, at least partially.

I haven't experienced this and don't have anything to add, but I just wanted to say hang in there and hope you feel better!

Fortunately, I am self employed (my husband and I have our own business) and I have worked from a home office situation for the past three years. (I got sick about 2 years ago.) I can take it easy when I need to and can even nap during work hours if it's a slow day as long as I have the phone where I can answer it. (I also write novels in my spare time, but that, too, is pretty low key and not physical, yay!) Before this I was a phlebotomist at our local hospital and I know, at least for the first year of being sick, that I could not have possibly worked at my old job. Now, with the right meds, diet and exercise, I think that if I wasn't working from home I could have at least a part time job...but I certainly couldn't do my old 5am shift! LOL

Very interesting article! You have to wonder about how much of the stuff in our food and evironments is not very good for us! I actually hardly ever drink gatorade anymore, simply because after the first month of it I couldn't even look at another bottle of the stuff LOL. It just has a taste that I can't handle much of...possibly because of the sweetness. So I started going to our local "outdoors" store, where you buy stuff for hiking, camping and all those outdoors kinds of activities, and they have lots of different choices of electrolyte enhanced products (tabs and powders) you just mix in a bottle of water. It's supposed to fight dehydration when you're off climbing mountains...but works great for Potsies too! You definitely have to try a few brands because some taste better than others, but in my book, all of them taste better than gatorate any day...and now seeing that article makes me even happier to use this stuff instead.

Yay!!!! So happy for you! Sometimes I think the best thing for people is to know there can be a light at the end of the long, dark tunnel!

Thank you everyone for your responses! I've never really looked into having any mast cell issues. I know the doctor did mention I could have an autoimmune component, but I think my blood work for the immunological studies was pretty normal. It is interesting to know some of you on here get this too and it does have to make you wonder what might cause it for some of us. It does seem like it may be POTS/dysautonmia related. Possibly the blood pooling like khaarina suggested? Maybe it is different things for different people... mast cells issues for some, neuropathy for others, or pooling blood or a combination. Joyagh, I might just have to try that self massage technique to see it it helps!

Congratulations!!!

So, lately, I have been experiencing random itchy legs, though it is usually only in my lower legs and especially the shin area. This seems to happen mostly at night when I'm trying to go to bed. I don't feel like it is any sort of skin reaction because I have no rash, etc. Lotion and benadryl don't seem to help either. I literally have to stop myself from scratching because it feels like I could just scratch all the skin off and it still wouldn't stop. Eventually, it just goes away or I finally fall asleep. Has anyone else had this? I did read that there can be "deep itching" in people with neuropathy, and my doctor thinks that I do have a neuropathic component as far as the POTS is concerned. Maybe this is what I'm experiencing? If so, I'm curious to know what kinds of things might help to stop it. Have a good day everyone!!!

Like MomtoGiuliana, I tend to also have low potassium. (& low sodium.) When I first got sick and ended up in the ER I had really low potassium, but I'm still not sure what caused it. I eat foods high in potassium and take a supplement besides my multi vitamins. I don't know about high levels either.

I find my symptoms worse at night, before or I fall asleep and sometimes during sleep (that wake me up). I have had the occasional issue while eating, and it doesn't seem to be any sort of food in particular. I get breathless singing in the car, and I've also noticed that blowing my nose (more than once in a row) can trigger a reaction, which I find strange. (I recently had a cold and this seemed to make the breathing stuff ten times worse.) Oddly enough, I find that once I start to panic and I get an adrenaline rush from that, it actually seems to help my lungs feel like the oxygen is reaching them again. I also find when it happens to me in the car, that I have to roll down the window, take off my sweater, and get cold air on me and it helps. If I'm in the shower I have to stick my head out to feel like I can breathe again. I think caffeine and alcohol also have a tendency to make my symptoms worse, which ***** since I love both coffee and wine!

I have been back and forth with the whole coffee thing, myself. For years, I worked 5am shifts and became very dependent on coffee! lol When I first got sick two and a half years ago, I gave it up altogether. I have recently started drinking it again, but I have to be careful how much I have and be sure to have solid food with it. Otherwise I get jittery and my heart rate goes crazy, and it sometimes sets of heartburn for me. In the mornings I have switched to half-caf and that seems to help a lot with the undesired effects.

I feel extremely lucky to have a very supportive spouse and family. I think at times my husband can't fully understand, because no one really can unless they have felt it themselves, but I really do feel that he tries his hardest to understand and he tries to be as helpful and accommodating as possible. He certainly has never made me feel like a burden or like I'm inconveniencing him, which is so amazingly helpful to me! My grandma who raised just passed away in August, but she was so wonderful and caring about the whole thing. She couldn't exactly do anything to help because she wasn't in very good health, but she was always so concerned and asking me how I was doing and so happy when things were going well for me. My brother isn't in the area, but he always asks how I am too. My husband's family is likewise very understanding. My sister in law also happens to be my best friend, so she has been here for me through it all. My mother in law is one of those overly worried mother types, so she has been a little TOO concerned at times lol! The funniest thing is that she is really into hypnotherapy, psychics, past life regression, etc, so she has been after me for two years now to go do a healing session with the famous psychic Sylvia Brown hahaha. I really feel that having a supportive foundation has been instrumental in my progress through this and my overall mental attitude throughout this whole ordeal. My heart truly goes out to any who do not receive the amount of support they need and deserve, so big hug to any of you out there!!!