Lemons2lemonade

Rama, what are some of your tricks for working?

Hi all! Just to check in, a storm blew in the other day and knocked me down for 2 days of sleep. But got back up today cleaned the house for an hour, made lunch, visited with family from out of town, and drove down to an Irish pub to go enjoy some corned beef, cabbage, and trivia with friends. One thing I have noticed is that my legs are taking longer to get stronger than they used to. My legs are sore like if I used to run, and this hasn't really gotten better yet. Had some weirdo chest pains/ shortness of breath last night, but pushed through it.

So marshalls research is inaccurate, but the idea of pathogen based autoimmune diseases is also supported by other research?

Researchers are learning that perhaps the plethora of naturally occuring bacteria within our bodies may lead to a new perspective on autoimmune diseases. http://mpkb.org/home/publications/marshall_dnaday2011 "Thousands of species live in the cells and the tissues of the human body." It is thought that some bacterial forms, ebv also does this, are knocking out a nuclear receptor or vdr( vitamin d receptor) in order to inhibit the immune process and prolong their life/reactivate. The human body exhibits vdr dysfunction in depression, ms, arthritis, lupus, sarcoidosis, thyroiditis, diabetes, dementia, autism, and schizohrenia. In addition estrogen reception beta is also knocked down. Estrogen receptor beta is responsible for the vdr precursor protein.

http://www.ncbi.nlm.nih.gov/m/pubmed/11020457/

According to some info I have heard from a barista, coffee grounds are thought to aid in cellulite reduction by improving circulation when applied to the skin. I looked online and found some info on this, none of it too scientific. I wonder what would happen if potsies used this to help with circulation? Here is an article from discovery health: http://health.howstuffworks.com/skin-care/problems/beauty/cellulite5.htm

I too have thought about the himalayan salt lamp. Anything that would help, right?

Hey rich, don't know where you are in n.j. but I think there are some good pots specialists up in NY. I think Stewart is up there. Not sure though.

Hi potluck! I have been dying to talk to someone like you. Can you tell us about your temporal lobe epilepsy? What was it like and how was it similar and or different than your pots? When I first got pots, I was convinced it was a weird partial seizure. Are your docs planning on continuing the propanolol?

This is really interesting. When I think about it, it probably took at least a month for the florinef to work for me. And I didnt see any differences until we upped it to .2

Sleephunter, well put. I definitely know what you mean about the build up. I have the exact same thing. It's like you know its coming. "Looming" is the perfect word.

Haven't slept yet, killer headache is keeping me awake and I am exhausted. A little chest pain too. Not a good combo. I hear a storm raging outside so I'm going to bet that's the culprit. I finally bit the bullet and took an ibuprofen (A little dark chocolate for the caffeine too). What is up with the headaches? It's only the back of my head that hurts--it seems like every 6 weeks or so I get a bad one. I want to tell my body, "No! It's the rest thst you are supposed to constrict!"

Sonya, oh yeah. My whole family is a problem. They all expect me to be healthy and I can't be. This starts a lot of arguments.

Hi summer! I'm sorry to hear about what you have been going through. It can be very scary, but the best thing you can do is keep your chin up. We are all here for you. Have you ever heard of polycythemia? My doctor thought i had this before he diagnosed me with pots. He ran a jak2 mutation blood test on me for polycythemia vera--a rare condition. But really i was just dehydrated. Some other questions i would ask the doc is how your kidneys are functioning. A lot of times when people swell badly, it can indicate kidney involvement--they play a large role in retaining/removing fluid from your body. Erythropoietin is a hormone found in the kidneys that is responsible for regulating red blood cell production. Probably, the reason they are sending you to an oncologist, is because there are tumors that can secrete erythropoietin abnormally. There can be other causes for polycythemia too. I wonder, since the swelling has begun, has your tachycardia gotten any better?

i have no experience with this. However, i was getting bad diarrhea after an antibiotic and i found that a probiotic helped me. The bacteria in your abdomen are responsible for digesting lots of your food I also was passing whole chunks of food. So i suspected these bacteria weren't doing their job.

i don't think so, sometimes mine used to take over and hour to get going i.e. tachycardia --before i was diagnosed. I didn't even recognize that it was postural.

that is excellent news rich, hooray!!!

one thing to watch with fludrocortisone is that it can drop you potassium levels too low, and that can make you feel MISERABLE. Have you had your potassium levels checked? Also, i found that i needed .2mg to help, .1 didn't seem to do anything for me. I also was advised to have more salt. I hope you start feeling better soon! I'm sure you've already discussed this with your doc, but do you take meclizine? Also naomi is right about the fluid, its something to consider... i hope you start to feel better soon.

Hi everyone! Still doing really well on the tachycardia and physical progress. In the next week or two, i plan to go looking for a job, which will be a huge step for me. Some people have asked what type of exercise i have been doing, etc. so i thought i would share. 1. Perhaps the most challenging thing for me to overcome with pots is panic. Knowing that what i am feeling isn't real. The heart rate and blood pressures--yes they are VERY real, and this is so much different from someone who has anxiety "all in their head". However, it was important for me to recognize that despite my wild hr's, bp's, feelings etc. these sensations are a sort of false alarm. Yes, it is possible that my blood pressure drops far enough that i will faint, but i'm not going to die, and i'm not going to just drop dead from this. Further, i have had severe pots for 2 years now, and symptoms for over 5. I know what my body can and cannot do. In this, i have NEVER fainted from pots. I have dropped to the ground many a time, seen stars, blacked out, been half way conscious, had out of body experiences etc. but i have never just clocked out in an instant. I always have warnings, and i am learning how to read them. Understanding these warnings and their implications have possibly been the most helpful and detrimental aspects of my rehabilitation. I have learned that some warnings are fake. They tell me that i am going to pass out and that i need to stop whatever activity i'm doing. Yet, i continue on with my activity and i do not faint. Sometimes the warnings are more serious. These warnings are real. If i do not sit down when these things occur, then i could get myself into trouble. Everyone is different, but what i am learning with my pots is how to ignore the "fake" warnings. Fake warnings try to do some pretty rotten things to me and they feed off of my fear. i have learned that the more scared i am of these "fake" warnings, the more likely they are to occur, both in frequency and severity. They keep me laying down when i should be sitting up, they keep me home when i could be out, they make me worried about going to the grocery store, about going to sleep, about waking up, about showering, and about spending time with friends. They feel terrible, and they are all a bag of wind. Clearly they are wrong, because once i began to ignore them, i all of a sudden became slowly capable of doing all of these things. (Slowly is an important concept to consider and deserves its own attention). Essentially, and more recently, i've learned to look at it like this: I am going to feel terrible no matter where i am or what i am doing. So i might as well be doing something. Further, if i am going to die, there really is no great place to die, so i might as well out be doing something i enjoy if its going to happen. These are the things that i tell myself, that get me out of the house and keep me going. My heart used to beat fast when i stood, but having pots is so much more than just a fast heart rate for me. My heart rate is under control now, i believe from exercise/proper medication, and i still feel miserable every now and then. I have to understand that i might never feel as good as i used to again. And that can be hard to swallow. But i can't let it stop me. Overcoming all of these fears, and understanding what exactly i am working with here, has given me some opportunities. They have helped me increase my endurance and strength. If i listened to all of my "fake" warnings, i would never have been able to increase my endurance and strengthen my body to ensue progress. They would have told me to stop. And if i had listened, i am confident that i would not be where i am at today. 2. Perhaps the biggest mistake i made in the beginning and throughout my experience with pots was expecting my life and body to function the way they used to. First of all, i am not going to have the strength i once had, at least not for awhile, and i also am not going to have the endurance. Doing things like shoveling the garden, going for a jog, lifting the couch, completing all errands that need to be done, going on long drives, sitting up for hours, standing still for prolonged periods of time are out of my reach. Can i do them? Yes, some. Is it worth the toll that it is going to take on my body? Absolutely not. In this, the meaning that i am trying to achieve here is the second thing i have learned. Pace myself, take it slow. I learned that i was expecting my body to just do, rather than work on it. So, i began first by staying awake all day. I could go to bed as early as i wanted, but i had to stay awake all day, whether i am laying down or sitting up. It may sound ridiculous, but this was challenging at first. Second, i began sitting up each day, and pushing myself only slightly more than my comfort zone. Even if it was for 10 minutes. This was a HUGE STEP and it took over a month to conquer. I have not layed down in the past 3 weeks--except to go to bed at night. Third, i began standing. Slowly at first, even if only for a minute. Something like, 1 minute up 30 minutes down consistently. Whatever i thought my body could handle. And then i slowly increased this. Standing soon became walking and so on and so forth. 3. I ditched the pulse oximeter and blood pressure cuff. I still have these things and use them from time to time. However, obsessing about what my pulse and blood pressure are doing is not going to help reduce my anxiety, or overcome pots. If anything, i believe that it feeds the anxieties that come with the pots. There was more than one occasion where i would freak out because of what my pulse ox or bp cuff were reading. In fact, i became obsessive with these items. There was a time where i wouldn't go anywhere without my pulse ox. The reality is, that i already know i have pots, and i already know that my pulse and blood pressure are going to do some wacky things. So why do i need to see this happen? Part of me used to think that i watched these constantly so that if something did go wrong, i would have a warning, and then i could get help in time. The truth is though, i need no warning, because i'm not going to die from this. All that's going to happen is that i will faint, and there's not much any e.r. can do for me that i can't do for myself. I don't need these things to tell me what my pulse or bp are. I've had pots long enough that i know what my body is doing without these things. Further, i've noticed that my pulse and blood pressure have improved upon removal of these items from my day to day life. However, because i am taking lots of salt and florinef, i'll usually check my blood pressure once every few days, or once a week just to make sure its not too high. 4. Exposure therapy I have no idea why pots make being in public places, noisy places, driving a car, the grocery store, etc uncomfortable. It probably has something to do with stress and sympathetic activation. However, i have found that continually exposing myself to these environments has reduced my pots symptoms under these settings. There was a time when i refused to go to the grocery store, and i HATED restaurants. Yet, i continued to expose myself to these environments over and over again, and since i have done that, my prevalence of symptoms in them have reduced significantly. In this, i think of my body as a spoiled brat. If i let it have it's way, its just going to continue throwing tantrums. 5. Relearning. What i find truly remarkable about pots is that it seems to have infiltrated every single aspect of my life, mind, and body. In so much, that i feel that i have had to relearn and retrain my body to live and perform activities without it. This is ridiculous to me, considering that i had performed tasks over and over again in the same manner for 23 years without pots. And it took my body/mind 2 years to completely undo this to the point where i almost could not function or do anything without pots. And the more i assess this, the more i realize that this is what i am doing. I am relearning how to live my life without pots. And it is not easy. Its like i have to rewire every memory, every thought i ever had, every scenario and experience i come across to function without this problem. I think of it like computer code. Someone else wrote a code for how my body is supposed to function and in doing so, at the end, they put in a one line code that corrupted all of the data. I can't go to the end and just remove the flawed code. Instead, i have to go through every piece of data and remove the flawed code (or the pots) from it. It is like relearning how to count when you know you can do calculus. 6. Compression. I wear my compression socks every day and believe that they helped me to achieve the natural muscular compression i now have. To put things in perspective, i washed my walls for 3 hours this morning on my feet, last night i drove around for about 3 hours, went and visited some people, and had dinner in a restaurant. The day before that, i went frisbee golfing for 3 hours, went grocery shopping, and picked up around the house.For the past 2 or so weeks,these have been the activity patterns that i have been capable of achieving. 6 months ago, i could hardly stand.

I know. I am learning a lot about the garbage that disabled people have to go through. Its not enough that you are sick, but you also have to worry about all these other things too...Including enormous hospital bills.

What is it exactly that you want the Dr. to do, reduce/stop the beta blocker?

Yes, yes yes, all except the leg pain. Chest pain for me can be pretty much take on any form and any duration.

puppylove, yes, and it happens to me in the evening too. I usually interpret it as,"i'm going to die" but, it never happens so i guess the feeling is all hot air huh? I know what you mean though. It's like this pit of the stomach feeling. When i get this really bad, everything slows down, like it would if you were in a car crash or some other life threatening event. It freaks me out. And every single night when i go to bed, it feels like i am going to never wake up again. But, i do keep waking up. And if there is a problem, where i'm not going to wake up, i have done all i can about it. The reality is that one day that will happen to me, and i try my best to not waste my time here in this life worrying about when it is going to happen. It can be challenging though, the feelings are SO convincing. You would think after going through this for 2 years, i'd be over it by now, but still every night, the feeling comes.

me too. Every morning when i wake up there's no feeling in my hands. One morning, it took around 10 minutes to get it back, and i couldn't even move it...weird.

I read something about this awhile back. Wanted to bring it up again. I know that i have been feeling particularly cruddy yesterday and today, and it's a full moon.