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imapumpkin

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Everything posted by imapumpkin

  1. Because I'm so pale I almost always wear some kind of lip color whether it be lipstick, gloss, tinted lipbalm,etc. but I've been noticing lately when I have just plain chapstick on, my lips have a blueish or purpleish tint to them even though the rest of my face is pale as a ghost. Is this a circulation issue? Because my pulse ox is always 98-99% so doubt it's an oxygen problem. Does anyone else get this blue/purple tinge to their lips?
  2. Normally I'm just on three, and only one is for POTS-- Metoprolol. The other two are lexapro and klonopin but I'm pretty positive I'm only on the benzo because I'm chemically dependent. Currently I'm on 4 between my integrative medicine doctor is trying to weed out what my underlying cause is, and so I'm on Nystatin to reduce Candida. That's very unfortunate that your doctor is on your case about medications. If your meds are benefiting you and helping you cope with your symptoms and the side effects or long term effects are not concerning, what's is the objection? And to compare you to other people your age is irresponsible and completely besides the point. Every patient is different. What's right for you and your physiology and diagnosis is going to be totally different from someone else's. Would you consider finding a different PCP?
  3. Thank goodness for my integrative medicine doctor. For several months he has been treating and helping me manage my symptpms (b12 shots, licorice, various vitamins for deficiency) but when I saw him a few weeks ago, he said he wanted to go after what might be the primary cause of the POTS, since dysautonomia is a secondary condition. My bloodwork showed antibodies from strep-throat, pneumonia and other viruses I had years and years ago. He also mentioned that the inflammation caused by any of these could be enough to cause the disruption in the system to cause dysautonomia. He mentioned off-handedly that something as simply as a candida (yeast) overgrowth, particularly in the gut, could be enough to cause that inflammation. I then piped up and said...well, I've dealt with ringworm and other yeast issues for years, to which he responded that this was very compelling information, and in addition to wanting to put me on an anti-viral and antibiotics to knock out whatever might be causing my POTS (if it is in fact viral-induced as opposed to genetic). So my doctor wants me to start the anti-fungal and work up to full dose, then add anti-viral, then explore antibiotics. In keeping with this plan, I started taking Nystatin (an anti-fungal) two weeks ago and I have noticed a MARKED difference in how I feel. I've been feeling a great deal better day-to-day. Instead of peeling myself out of bed a 3 pm still feeling like I haven't slept in days, my body is waking my up earlier and earlier, and I've been feeling much more like my old self during the day. I'm frankly really shocked that something so simple could make such a big difference. Also, it kind of blows my mind how two things you never thought were connected (yeast issues and POTS) could be related to one another. My neurologist is wonderful but her advice beyond taking metoprolol and staying hydrated and exercising is limitted; she likely would never have taken this course of action to aggressively target a viral/infectious/fungal cause that might really make a difference in treating my POTS and how I'm feeling. Just wanted to share my update, and definitely give a RESOUNDING endorsement for integrative medicine and doctors who want to look at the big picture.
  4. http://www.ncbi.nlm.nih.gov/pubmed/15613983 It's not just a livestrong thing. I've been avoiding ginger since my POTS flared up 18 months ago. Plus if POTS is going to be on something like Livestrong, I'm glad it's getting more mainstream awareness, even if it's just a blurb and hardly tells the whole story.
  5. Novocaine just about made my heart shoot out of my ribs. Does your dentist have access to carbocaine? that is what my dentist switched to after we determind novocaine was a no-go. The first time I had carbocaine it took two shots but every other time I've had it, it's worked just fine and gave me no tachycardia. I do feel kinda sleepy afterwards but, hey, lesser of two evils.
  6. because pots is primarily a dysfunction of the autonomic nervous system, i would stick with the neurologist who has experience dealing with pots. yes, it manifests as cardiac, but the cause is really neurological. That's not to say you can't also see a cardiologist and endocrinologist, but the neuro specialist is probably going to be able to suit your needs best.
  7. YES! I was just going to post about this. My doctor asked me why I was on Lexapro the brand instead of the generic and I told him because it upset my stomach. He seemed really skeptical. But it DOES make a difference. I have been on the same generic brand of metoprolol since my surgery a year ago, and last week I picked up my refill and it was a different generic brand. Guess what? It doesn't work. My resting heartrate at night on the old generic is 65-70. My resting heartrate at night now is 85 and was keeping me awake. Also I have a second or third cousin who has schizophrenia and they tried to change what generic brand he was taking. They made him try the new kind and his symptoms, which were well-controlled on the other generic started getting worse. Generics make a difference. They are very differentas different pharmacuetical companies put their own fillers in and there's no control on how the differences affect the patients.
  8. good news! i have good results from b12 shots as well. i'm a fan of supplements!
  9. i agree with katybug, you should not ignore these symptoms...auras with migraines are not unusual but the numbness and slurred speech are things you should call your doctor about IMMEDIATELY.
  10. had heavy periods for a long time but when on the pill at age 17. i've now been on it so long my periods have stopped...gyno says that's not unusual and neurologist says it's not unusual for pots patients to have irregular periods. just rememeber to ask your doctor about your iron levels because heavy periods can contribute to anemia..i've been slightlly anemic ON iron supplements for a year and a half.
  11. i get it the worst when i'm trying to sleep and it's a loud ringing...the only other time i've had it was when i was tapering off lexapro.
  12. Dr. Oz seems to do a lot of fear-mongering...If you don't do this, you'll get heart disease! If you eat this you'll get cancer! If you use mineral makeup it will stay lodged in your lungs forever! I agree with Jan, I don't really trust him because he does seem to jump on whatever trend is out there and then talk about how everything gives you cancer. It woudn't benefit him to talk about POTS because i'm sure it doesn't reach a big enough audience for him -__-
  13. hooray for good days! cool weather is DEFINITELY a friend. glad you are doing better =)
  14. So my mother has been pestering the living daylights out of me to take melatonin at night because both my neurologist and integrative medicine doctors have said it can help people with fragmented sleep get a restoritive night's rest. She went ahead and bought a bottle of the stuff and nags me incessantly to try it. The problem is I don't want to. In fact, not only do I have no desire to try it, every atom in my body is resisting it. I get a tremendous gut-feeling that I should not take melatonin. Yes, I tend to be gun-shy about most new meds/supplements because I'm so sensitive to them and because I've had reactions before, but this is one of those times where i'm not just anxious to try something new...i really and truly feel i shouldn't take it, and really don't want to. With every new med I go through a period of anxiety, then just grit my teeth and start it. Except I can't bring myself to do that this time. I know that two doctors have already said "you can try it" but everything I've read points me towards DON'T DO IT. Apparently it can interfere with birth control (don't want that) can lower blood pressure (really don't want that since I do everything I can think of to boost my bp and don't need something else dragging it down) and can interfere with SSRIs (I take lexapro). Furthermore, I'm already on klonopin, which is a pretty knock-you-out drug to begin with. I don't really want any more "downers" so to speak. It seems so counter-intuitive to take something to make you sleepy when I am already plagued by sleepiness 24/7. I also really don't have trouble falling asleep (with the exception of the nights that my bladder is running in overdrive.) Frankly, I think my mother wants me to take the melatonin because I am a light sleeper and have very sensitive hearing...for instance if it is raining out, I won't be able to sleep because I can hear water dripping from the gutters even with earplugs. Yes, I am extremely fatigued which prevents me from functioning enough to have a job, but I am skeptical that melatonin will make much of a difference given that my whole autonomic nervous system is out of whack. In addition to all of this, I'm 26 years old. I'm a grown up, and I don't feel like taking melatonin. I live with my mom, she takes care of me when I'm sick because I cannot work and can't be financially independent, so to a certain extent, I'm kind of bound to honor her wishes. She also gets very upset with me when I don't do *everything possible* to feel/get better, including this. Don't get me wrong, I am so grateful for all she does for me, but I don't think that entitles her to tell me what substances I should put into my body, particularly if I am having trepidations about something. I had the same gut-feeling about the midodrine I was prescribed. I couldn't bring myself to start it. So I put it off. And guess what? 3 days later my integrative medicine doctor put me on licorice root extract and that bumped up my bp, so I was able to get a supplemental boost in blood-pressure with an all-natural supplement that has no bad side effects. I just can't ignore that gut-feeling to stay away from melatonin as well. Does anyone else get pressured to try/take things they're really not wanting to take? I could really use some advice because I'm seriously considering lying to her and telling her I took it and hated it just to get her off my case.
  15. I started off by walking, for months and months, especially when the weather was nicer. however i was really hesitant to go at a fast pace or anything that would give me a cardiac workout because i didn't want to be far away from home if something were to go wrong...my own anxieties i guess. I started feeling better once I started doing the recumbant bike because I was getting the cardio i needed.
  16. my doctor also recommended recumbant bike starting at 5 minutes and working up. also core stretches and stretches for the lower legs to prevent blood pooling. Good luck!
  17. It makes sense, but it's a giant ** because 1) how is POTS ever going to get recognized unless SS acknowledges that it is a debliitating condition? 2) Nothing about my anxiety is preventing me from working; to approve me for SSD for something I don't have is wrong whether it helps push the application to get approved or not. I want no part in having any official government documents asserting that my medical issues preventing my ability to work are anything other than neurological.
  18. I applied for SSD in August and last week received a call saying they needed more information. When I spoke with the woman from the office she said their in-house doctor wanted what is known as a third-party opinion, meaning they wanted to speak to someone who knows me very well who can speak to how my medical condition is affecting me. She further said that the cases they want to push through get this third-party opinion so that there is less to be objected to in the process (leading me to believe things were looking good for my application getting approved) They agreed to speak with my mother, with whom I live and who is financially responsible for all my medical bills and who takes care of me when I can't drive somewhere on my own. Apparently they spoke to my mother this morning and when I asked her how it went, she said that the woman she spoked to kept trying to make the issue about anxiety. My mother would try to steer the conversation back to POTS, about how I get brain fog and can't drive certain days, about how my fatigue is so bad I can't function before noon, but the woman kept saying "But let me focus on the anxiety." She asked if I got out of the house, if I felt isolated, as though after all the forms I filled out and all the doctors I referred them to,after all the days I feel too sick to do anything, that this is an application based on Panic Disorder. I am pretty livid. Yes, I have been dealing with anxiety since I was 17, and I am on very low doses of klonopin (half a tablet of the lowest possible dose) and lexapro (5mg, the lowest possible dose) but it has been well-controled and at this point I feel like I am on klonopin out of chemical dependency on the drug, not because I need it for anxiety. I have not had panic attacks since my teens ended and I entered my twenties (I am 26 now). My anxiety is NOT why I can't work. I have held three jobs since age 17, none of which were affected by anxiety, all of which I was able to work. I was independent and living on my own in Washington, D.C (whereas now I am living with my mother in the northeast) when my POTS flared up and the reason I can't work is because I am debilitatingly tired, can only be on my feet for limitted amounts of time and in warmer months I am too brain-fogged to drive on certain days. The fact that this in-house doctor is making this about anxiety is infuriating. For 9 years doctors see that I take anxiety meds and assume any symptom I have is because of it. When I was in the ER for chest pain with a seriously leaky heart valve, the doctors assumed it was anxiety. My mother even told this woman that the POTS and excessive tachycardia flare up caused my MVP that my doctor said would likely never need surgical repair, turn into "You need surgery ASAP so your heart is not damaged.". Still this woman wanted to focus on anxiety. I'm so frustrated, I don't know what to do. I called the woman my mom spoke to and left a message asking her to call me back because I had questions. I jus cannot believe after all the paperwork I filled out about how my neurological disorder was preventing me for workign and living independently and now it seems that the SSD office wants to make it about my anxiety which, I will be honest here, I don't feel is a significant factor in my life anymore, let alone in this decision process. Yes, I believe I qualify for disability, but it is because of my fatigue, my low blood pressure, and the fact that blood is not sufficiently profusing to my organs...not because they think I have panic disorder, which I do not. I would like to be approved, but I need it to be for the right reason. Has anyone else dealt with something like this? Is this "third-person opinion" thing really a thing? I don't want to hurt my chances of being approved but I need to make it clear to them that I can't work because of my POTS, not because I had panic attacks almost ten years ago.
  19. i'm on the exactly the same dosage as you and i've had nothing but positive experiences with it...obviously it lowers my bp but all BB will do that.
  20. I was told in october my vitamin d levels were in the teens (can't remember the exact number) so my intergrated medicine doctor put me on d3 5000 twice a day and I've definitely noticed a marked difference...certainly more energy. It's understandable that my levels would be so low because I avoid the sun in the hotter months (very sensitive, burn-prone skin) and the heat of summer makes me feel much worse so I stay indoors. I also don't eat fish (besides the occasional tuna sandwich) and seafood is really high in vitamin d, so i'm not getting it from outdoors or in my diet.
  21. Sending good thoughts your way MedicGirl! Surgery is a huge disruption on the system in even healthy people without dysautonomia so give yourself a break! Your body needs to heal and sometimes it takes more energy to do so. After I had surgery in January I was completely wiped for weeks. Rest when you need to rest and do things when you feel like you can.
  22. my integrative medicine doctor did a bunch of blood tests and they can tell i have antibodies of certain viruses in my system (like pneomonia which I had at age 7). The problem it's it's hard to tell which of the viruses is what actually caused the POTS. You can also see a geneticist to see if the underlying cause is mitochondrial or metabolic.
  23. Some do, some don't. I had a really hard time with low blood sugar on propranolol so I had to go off it after 2 weeks. I'm on metoprolol now and have been for 9 months and it doesn't affect my blood sugar!
  24. So lately I've been noticing I haven't been drinking as much, even though I am very cognizant of the fact that I need to be guzzling the fluids. The problem is, I'll look over and see my SmartWater bottle hasn't depleted much over the day and realize it's because I haven't felt thirsty at all. Over the summer I felt thirsty, particularly since it was so hot and humid but I defintiely noticed a drop in my thirst level in September and it's kind of getting lower and lower. I am still using the bathroom pretty frequently but I've been noticing things have been more concentrated lately (every since I was very little I have gotten pain during urination when the urine was too concentrated, pretty much alerting me to dehydration.) My neurologist wants me to be drinking 80-100 ounces of water a day...a task I have found to be literally impossible, so I try to just drink as much as I can in a day. Lately it hasn't been that much and even the water I'm drinking I feel like I'm having to force myself to take in. This worries me a lot. The only time I really feel thirst is during lunchtime to wash down food, and that's comepletely it. Has anyone else experienced anything like this? I'm getting nervous
  25. my symptoms get worse before that time of the month, and WHENEVER it is rainy, overcast, high humidity and a change in barometric pressure. It's very common for people with POTS so you are not alone!
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