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Lemons2lemonade

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Everything posted by Lemons2lemonade

  1. rama, i take half my dose in the morning and half at night. Mine's a little higher though .1mg twice daily. I definitely found that it helps better to take it twice a day for me.
  2. Also if you could share your first revealing symptom that something was off, that would be great Mine was visual disturbances and a weird sensory feeling.
  3. So dr. G. wants to start me on propanolol. I don't know how i feel about this. I am currently taking florinef and it is working kind of. I am able to move around but it is still challenging. I am hoping that the propanolol will bump me up into a more functional level--it would be nice to have the adrenaline better controlled. However, i am concerned because i used to take metoplerol, and it worked really well for about 6 months. Then all *** broke loose. They kept me in the e.r. to withdraw from it. I also have never taken a low dose of the beta blocker while being on the florinef, so this will be a new experience for me. I just don't want it to drop me down into a dysfunctional rut that i will have to drag myself out of. Also not looking forward to the freezing cold hands and feet. Anyone have any propanolol experience/knowledge that they would like to share?
  4. I think that having pots is such a slippery slope for other diseases. All of the symptoms we get could be caused by a bajillion different things. On the one hand, I want to be thorough with my healthcare. On the other hand, I have to be careful not to let the panic, "what if" type feelings set in, because those are endless. It must be hard in your case. It sounds like you have all the other "fun" stuff thst comes with pots minus the heart rate. As far as your hr jumping up, everyone's does when they stand initially, but with pots it just keeps going, at least from what I have read. Honestly, I never even made the connection of "postural" until my doctor recognized it. But I knew a lot of other things were wrong and the heartrate was the least of my complaints. I don't know what type of tests your doc has run but ruling out emergent cardiac issues like ekg, echocardiogram, holter monitor/event monitor are all things that I did. Then, I went for all the weird stuff: tsh, free t3, t4, parathyroid hormone, magnesium, ast, alt, vip, tryptase, plasma catecholamines, ebv panel, urine metanephrines, ab western blot, insulin, fasting glucose, glucose tolerance test, testosterone, and estradiol. Then there's always the brain mri and eeg. These are all the things that I had done. Mayo repeated some of them. I really wished I had seen one of mayo's endos, I would have loved to hear what he/she has to say about all of this. When I went to my endo he told me I had already searched out all of the tests that he would have run.
  5. I have been on florinef now since July I want to say. I started on .1 and it didn't seem to help much, I was moved to .2 shortly after. If anything, since time has passed, it seems like the florinef is working better. It took over a month to begin working. This could also have to do with disease course improvement, but my bp is going up and my hr is going down. Additionally, my blood sodium levels popped way up, so I know it is working. I took a beta blocker before florinef and it seemed like my body got used to it and that I would progressively need more. So I kind of understand what you mean by tolerance, but haven't had that yet with the florinef. In fact, I am considering reducing mine soon.
  6. Nkcc is a protein that affects sodium, potassium, and chloride balance. It has 2 types nkcc1 and nkcc2. Nkcc1 is necessary for keeping up the potassium rich area around the choclea (inner ear) so that it functions properly. http://en.m.wikipedia.org/wiki/Na-K-2Cl_symporter
  7. If so, before or after pots (or both)? I think I tried canned beets once in my life and haven't had them since. It seems like our ancestors have been eating them for awhile.
  8. Hi! I posted some info on progesterone the other day thst may interest you. When we go into ovulation and menses, our progesterone affects our aldosterone levels. Ok, should have read the article first
  9. Can you only make more than 900 if you are married and have kids. I was told I would only get 900 and that is the most anyone can get.
  10. Hi sonya! Disability kind of works like this: there are two types i think they are ssi and ssdi. Disability is federal. The amount of money you get from social security is determined by how much you have worked in the past. I think that the most you can get is 900 a month. So what you do first: go to your local dshs office and apply for age, blind,disabled through them.This is state level support--they can help you out with things like food, small amounts of cash, and medical while your disability claim is being processed. Also, if your federal disability claim is approved for an amount too small (because you haven't worked much in the past) then the state level will supplement this.Then, you need to find a social security office in your area, go there, and tell them that you need to apply for disability. They will probably set up an appointment for you to talk to a guy, where you will talk about things like your work history etc. There are some rules for applying for disabiliy, this is their website http://www.ssa.gov/pgm/disability.htm "Social Security pays benefits to people who cannot work because they have a medical condition that is expected to last at least one year or result in death. Federal law requires this very strict definition of disability. While some programs give money to people with partial disability or short-term disability, Social Security does not." this is a link to a different site within the same page, that has some other useful info http://www.socialsecurity.gov/pubs/10029.html#a0=1 One thing to consider, is that you can apply initially online, and that this will save you time and also start accumulating money for you. How it works is that they determine an amount that they are going to pay you. Then you go through a claim process that can take A LONG time. Mine took 6 months. Usually, everyone gets denied the first time. However, you can appeal this denial, at which point, you hire a lawyer who takes their payment from your accumulated cash balance.
  11. Title typo Progesterone increases during ovulation and also during the menstrual stage. Perhaps another reason we feel terrible. Progesterone is a highly potent antagonist of the mineralcorticoid receptor. It prevents mineral corticoid activation by binding to this receptor with an affinity exceeding those of aldosterone and other corticosteroids such as cortisol. Elevated levels of progesterone reduce the sodium retaining activity of aldosterone resulting in reduction of extracellular fluid volume. Progesterone relaxes smooth muscle (digestion), widens the bronchi, acts as an antiinflammatory and regulates immune response, reduces gall bladder activity, normalized vascular tone, cell oxygen use, affects gum health and tooth decay, plays a significant role in insulin release and pancreatic function. Its supplementation is being researched as a use for ms patients.
  12. Any input on this synthesis pathway...? Anyone ever had their progesterone/cholesterol turn up abnormal?
  13. Don't know what meds you take but florinef makes birth control ineffective. Don't know if the local hormones are different than the systemic but I asked Dr. G about this and he didn't comment that an iud was an exception.
  14. Awwww sorry wasn't trying to be rude. I just want you to have what's best for you. I was talking more about myself with the whole magical thing. I had knee surgery in high school and expected the pain to go away. It got worse for me, and I just don't want to see that happen to you. Another time earlier this year, they found lesions in my brain, thought that I had ms, and gave me a steroid dose consistent with that of an ms patient in a full blown flare. I thought it would cure me. The next 3 months were the worst I have ever had in my entire life. It made the anxiety and tachycardia worse. And I started to hallucinate from it. And they couldn't do anything for me because it was already in me. I had to be sedated and that sedation made it worse.
  15. Jen, I think there is a point where science and mind come together. For example, say you cut your leg badly and are bleeding. No amount of thought is going to seal your wound. However, you can stay calm to reduce the overall blood that is lost until the wound is sealed--either by a clot or a stitch. I think that when we are ill, minimizing stress is imperative. To me it can make or break a day. However, paying a whole bunch of money for gimmicks that claim to help you might not be useful. But then again, the placebo effect exists for a reason. Because it is an observable phenomena. Honestly, I don't care if it is fake as long as it makes me feel better. So, I would say yes and no. Yes, reducing stress has a greater impact than we could ever possibly imagine. But also, reducing stress can only take us so far. In this, I remember taking anatomy and physiology in college. I remember thinking to myself--it is nothing short of miraculous that this thing (body) even exists, let alone functions. Moreover, our understanding as a species of our own bodies is useful but limited. Therefore, I think our bodies/minds are capable of much more than we realize. Further, if I am capable of recognizing that my immune system is functioning via awareness, then why can't I communicate back through the electrical impulses from my brain that allegedly are the controllers of my body. As far as overreacting, you only get one body here. And if there's anything I've learned from this disease it is that I know it best. I have insurance so that I CAN get things like mris and biopsies. Why wouldn't you get it done if it can't hurt you?
  16. Hey goodnuff, I am sorry that your condition has gotten so out of hand and that you are suffering. Whichever you decide, just make sure that you have realistic expectations of what the results are going to be by putting the pacer in. I think in modern days, we expect surgery to be this magical procedure that makes everything better. If I were you I would talk to your doc and those with pacers about what will and will not be resolved by an implantation.
  17. Hey all! So i found a job that i may be able to work. I am going to go by and drop of my resume tomorrow. It is a receptionist position friday through sunday 8 hrs each day. I would have preferred to have less hours more days but it may be nice to have the rest of the week to recooperate, we'll see. This is kind of a test i am putting myself through to see whether or not i am going to be able to do it. It's not a high paying job, but also its not an extremely important job, where i'll have to worry about lost experience if i need to quit. I am overqualified for this position, so hopefully that will take some stress off. Its not going to make me a lot of money, but its a start. The other bonus is that there are nurses in this facility and also a defibrillator, so that should help curb some of my irrational fears. I always used to joke that i should get a job in the E.R. since whenever i have a pots attack, that is where i want to go. Then i could say, "no, i need to go to work!!" Anyways, haven't gotten hired yet or anything, just dropping off the application but i feel like that is a huge step for me. Does anyone who works with pots have any pointers for me?
  18. This is a good question anna, because it also happens to me.
  19. I feel like this has to do with muscle use and metabolism. I think its not only our brains lacking in oxygen, but also our muscle tissue, which is why we may feel so weak most of the time. Going uphill requires more muscle strength, and there just doesn't seem to be any behind it, does there? Also, another component to consider is that the whole activity of going uphill makes the body have to work a lot harder in general. And, to a certain extent, it is kind of like a tilt, wonder if this is behaving like a mild ttt. It happens to me to though. I've found its actually easier for me to run up a hill, then it is for me to walk up one.
  20. I posted a topic awhile back about holding your breath and not realizing it. At first, I thought this was just some periodic autonomic malfunction attributable to the nervous system. However, the more that I think about it, the more I wonder whether or not this breath holding is an intentional move by the body, in order to affect the acid base balance. Lung function and kidney function are huge players in acid/base i.e pH maintenance...
  21. So the diamox--pots is an abnormality in acid base regulation in the body....? Or just because it reduces intracranial bp?
  22. Jen, thank you for sharing your experience, you are a very brave and determined woman! I read about the expensive helmets that the drs want you to get. Have you ever tried a cheaper helmet?
  23. I agree that explaining your situation through other means helps others understand. My boyfriend, who has been very supportive during this, got the flu last week. He said, "do you feel this bad all the time?" I giggled and said basically only add a really fast heart rate and the feeling you get when someone jumps out at you-- over and over again. It got me to thinking that a high fever is a good way for me to describe day to day pots. You REALLY don't feel good and you get the weird brain feeling like you do with a fever, but you just aren't hot. And you have to function under these conditions. Sometimes I have my days with pots. Screaming and crying. Other days I am violent and frustrated. And then sometimes I am depressed and regretful. But none of these feelings are going to make my pots go away. I have learned that these feelings correlate with my symptom severity and also my stress. You should find something you enjoy doing that can help combat this. And remember sometimes a positive attitude can go a long way.
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