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imapumpkin

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Everything posted by imapumpkin

  1. thanks for the story! gives us hope =)
  2. I only met my anesthesiologist about 10 minutes before my surgery, but I was able to communicate everything I needed to in that time and he was very receptive. I wouldn't think less of your surgeon for thinking a meeting is not necessary. If you feel like it's something you need to do, by all means make contact with the anesthesiologist but in all likelihood, your surgeon doesn't think it's necessary because she's confident that your care will be under control given that she knows what your health situation is. but I definitely second what corina says, putting your mind at ease is very important so certainly do what you need to so you're in the best emotional/psychological space going into your surgery.
  3. i had a totally different kind of surgery (cardiac) so obviously it wasn't exactly a similar experience, but it was quite an invasive procedure as a hysterectomy is. Everyone reacts differently to the trauma of surgery and since my surgery was a different type than yours I can only speak to a few general things. As far as the anesthesia goes, make sure your surgeon and anesthesiologist are made aware ahead of time that you have dysautonomia and tell them that your vitals should be monitored even more carefully than normal, and that you will most likely need extra hydration via IV fluids during the procedure. Sometimes anesthesia can make people sick, (nausea, vomitting, etc) but that includes EVERYONE not just people with dysautonomia. As far as pain meds go, I'm the same way; most of them make me sick and I had a severe chemical sensitivity to both morphine and another morphine-related narcotic they gave me post-op so i did all of my recovery on a high dose of ibuprofen. I'll be honest, it was pretty uncomfortable, but certainly doable. I don't know if this would possibly apply to your situation but I found the thing that helped my pain the most were lidocaine patches, so perhaps that is worth inquiring about? sending good vibes your way.
  4. I resisted midodrine for a long time. when i eventually tried it, it gave me a kidney infection. something I've found helpful in terms of boosting my bp without pharmaceuticals is taking licorice root extract supplements. you can get them places like Whole Foods. I also have found my brain fog and fatigue are lessened when I wear knee-high pressure stockings or cuffs. As katie and corina have stated, everyone responds to treatments differently so it's about finding what works best for your body. I also take a beta blocker that gets my HR and tachycardia under control but thats what works for me. The pressure cuffs/stockings are non-pharmaceutical treatments so they're no risk of a negative chemical sensitivity.
  5. i don't know levine's protocol but I know that when i am feeling up to it, exercise is helpful and i have definitely benefited. when i am very fatigued, it makes me worse and "pushing through" it is simply not worth it. before my POTS flared up and my only symptoms were tachycardia and mild fatigue and I was fully functioning (working, going to school, exercising with no interference from POTS) I found that if I went a few weeks without getting to the gym, my fatigue got worse, so I'd start going to the gym again and I would feel better, and I never was set back afterwards. Now that my POTS is flared and I'm not fully functioning (unable to work, wake up before noon, be on my feet for the whole day) I only go for short walks and do recumbent bike for 10-15 min a few times a week. If I do this on my good days, I feel the benefits of the endorphins, the toning of my legs to help prevent pooling, and a tiny boost in energy.
  6. I find my symptoms get worse around my period (so during the week I'm off the pill). That being said, I can't say that I think the pill has made any difference to my POTS whatsoever. When I have been off the pill for a month here and there my POTS symptoms get worse around my period as well. I've been on birth control for almost ten years and my POTs seems to operate independent of my birth control.
  7. I still feel debilitating fatigue around the clock even after a full nights sleep...and obviously its hard to tell what's POTS and what might be being caused by the beta blocker lowering my BP...but no beta blocker i'm pretty much housebound. with the beta blocker I can do stuff like go for short wants and do 10 min on a recumbent bike. i am able to do short errands like going on a grocery store run whereas before the metoprolol i couldn't handle walking around a store. it's also about balance. when i left the hospital after my surgery i was on 50 mg of metoprolol because my HR was really high. once my HR stabilized my blood pressure started to drop so my cardiologist cut my dose down to 25mg, then when my HR adjusted to that, my BP started dropping again so he cut my dosage down to 12.5mg. That seems to be a good balance because it keeps my HR under 100 all day, and my BP doesn't really get much below 100/60.
  8. I have an appointment with my integrative medicine doctor is two week thank goodness; it couldn't come soon enough! my GP doesn't really know what to check for and when I come to him with worsening fatigue (that is, worse than my baseline POTS fatigue) he just checks my iron and tells me to exercise. My integrative medicine doctor will check everything he can, although I'm sure my b12 is not low because I take injections every few days. angelloz- i also had a relatively easy summer in terms of symptoms flaring from the heat. normally once fall rolls around my body is SUPER happy and rewards me with increased energy. it's bumming me out on many levels that for some reason it hasn't yet, especially since fall is my favorite season.
  9. I take 12.5 mg of Metoprolol once a day and it keeps my tachycardia under control. It stops my heart from racing and causing excess fatigue from running a heart marathon all day. In general my body feels much better on the beta blocker although it does drag down my BP slightly. It is worth noting that I tried propranolol a few months before the metoprolol and while i was feeling better on it, i started reacting badly to it, so I had to stop it. I was put on Metoprolol after my surgery and have had only good results. So just because one beta blocker might make you feel worse, another might help since they are different types of BBs.
  10. Ever since my heart valve repair surgery in January 2013, I have experienced a trend of improvement in my POTS. I have felt that I am constantly getting a little better bit by bit over time with occasional setbacks exacerbating my fatigue. Usually I start to feel better but then overexert myself with an overly-active weekend and am knocked back on my butt and am usually set back for several weeks after the fact, but then I start to improve again. Suddenly I'm noticing a downward trend. My blood pressure is pretty good. My tachycardia is well controlled. I am eating much better and have eliminated high-sugar foods and anything with yeast in it. I go for walks and try to get to the gym when I can to use the recumbent bike to strengthen my lower legs. The summer is over and the heat and humidity are gone. Under normal circumstances, my energy level would be leaps and bounds better. However, for no reason that I can figure out because nothing else has changed, I feel even more weak and lethargic. I feel so frustrated because I'm doing everything "right" but things are getting worse and I still wake up every day feeling like I've been hit by a truck, exhausted AND achey. I never really used to get myalgia, it was just debilitating fatigue. I have no idea how to cope with this because nothing I am doing is making any difference in my feeling better. Anyone have an insight into what could be going on given that nothing has changed in the past several months? I feel really defeated.
  11. My whole body got a boost after going on a beta blocker. Not only does it alleviate the tachycardia, but by slowing down your heart rate, you're giving the muscle a break. If your heart is constantly racing, your fatigue is going to be worse because it's like your body is running a marathon all the time. I don't think it can resolve other symptoms, but given that fatigue is such a huge symptom of mine, it's definitely worth it for the relief i get from tachycardia.
  12. thanks so much for checking back in! gives us hope =)
  13. stephsurf-- My fatigue is definitely better than it was prior to taking any b12 injections even though I seem to have plateaued on my levels. My fatigue is miserable and constant, but there are days i feel better and days i feel much worse so it's hard to gauge just what is helping it. In general I believe that continuing to take the shots even though I don't get an energy boost from it anymore is still helpful for me. Not only do I start to feel worst if I miss a day (I take it every 3 days but if i got 4 days with out it, i feel it) and it also makes the rest of my body feel better, and I can't really explain why. I just feel less sick and more well overall, if that makes sense.
  14. i don't know much about aortic leaks because i had mitral valve leak but don't freak out too much! just because you have a mild leak doesn't mean you will need surgery. (Trust me, worrying about surgery will only make this SO much worse). Please don't worry about possible surgery or even the possibility of needing to survive a surgery. Every surgery has risks of course, but there are some AMAZING doctors and hospitals out there that would provide outstanding care. As far as the leak recurring, I don't know anything about EDS affecting or causing valve leakage but as far as surgery goes I believe it depends on what kind of valve surgery one might potentially have. If the valve is repaired, there is always a small chance of the leak recurring but it is just that...small. and cardiologists would keep a very close watch on it post-surgery. if it is a valve replacement, it could be a bio-prosthetic valve (likely bovine) that needs replacing every 8-10 years, but a mechanical valve would likely be a one-time fix while taking blood-thinners indefinitely. Again, PLEASE don't rush to start worrying about the eventual possibility of heart surgery. There's an excellent chance you will never need it, and if one day you do, you can cross that bridge when you get to it. I am right there with you in terms of going to worst case scenario, I am exactly the same. But having gone through surgery myself, I have to say that one of the absolute worst aspects of it was the waiting and worrying once I was told I needed a repair. I was terrified, couldn't eat, had to force-feed myself, I was loosing weight and essentially wasting away because I was so frightened. I would not wish that experience on anyone so unless or until your doctor says to you "I think you should see a surgeon" please please don't stress about this.
  15. exactly misstraci! i always feel like the little girl who cried POTS when something else could actually be going on. katybug- i could just suck it up and go to my PCP but i feel like he kind of already thinks i'm a bit of a whistle-blower because I'm always going in thinking i have a UTI when really it's just my POTS causing inflammation in the bladder making me have to constantly run to the bathroom.
  16. Watches that give you your HR and pulse oximeters (like I use) are very sensitive and will fluctuate with the smallest movements, or deep breaths, or even if you swallow while wearing it. they're not going to be as precise as the monitor you might see at the doctors office/hospital so as long as it's not going 60 to 84 to 57 to 112 i think the small fluctuations are not worrisome
  17. Relaxation videos on YouTube help me so much, particularly ASMR videos. I watch them before I go to sleep because they help quiet my brain especially when I'm stressed.
  18. So I've been wondering this at various points over the last two years since my POTS flared up...How exactly are we supposed to be able to tell if something besides our POTS is going on with us when so many symptoms are indicative of other illnesses? I ask this specifically because I can never tell if I should be concerned I might be anemic (I have a history of anemia) because most of the tell tale signs of anemia (fast HR, lightheaded, severe fatigue, paleness, weakness) are all things I experience ALL the time. My fatigue has been particularly horrendous the past few weeks since I attended a wedding and was more or less forced to overexert myself...but at what point should I be thinking this isn't just POTS, it could be something else? Because my POTS has been all over the place the past two years and my symptoms and progress were intertwined with my MVP and then recovering from surgery, I really don't know what is "normal for me" in terms of my POTS. I guess I'm asking at what point do we stop assuming it's just POTS being awful and check in with the ol' GP to see if it could be something else as well that might be making it worse? Any thoughts?
  19. In Jan 2013 I underwent a mitral valve surgical repair. Technically speaking my valve is no longer prolapsed and it is repaired, but the diagnosis stays with you for your whole life because you need to keep an eye on it. Here are the best answers to your questions I can give. 1. I don't know the source of my POTS/dysautonomia. However, following the surgery my MVP symptoms resolved, but my POTS did not. I was diagnosed with MVP at age 19 but wasn't debilitaed with POTS until age 24, and it's been 20 months since my surgery and my POTS is still sticking around (I would think if the MVP had caused the POTS, my POTS would have improved much more following the repair) Whether or not MVP caused my POTS or my POTS made my MVP ten times worse, they definitely fed into each other and made each other worse. I saw a geneticist who claims that I got MVP from an "unspecified connective tissue disorder" but that is based on no evidence OTHER than my MVP, so I am inclined to believe that he is full of bologna. 2. It is hard to tell what cardiac symptoms were from the MVP because POTS manifests so many cardiac symptoms as well, but these are the symptoms resolved since my surgery: Frequent heart palpitations, frequent localized heart pain that felt like a stabbing needle,occasional shortness of breath, specifically the feeling of "air hunger" and an audible murmur that only appeared 4 months before my surgery. 3, Regurgitation is not something you can physically feel. The way the doctors determine the amount of regurgitation in your heart is based on your Ejection Fraction (the fractional volume of blood pumped from the left to the right ventricle with each heartbeat) in an echocardiogram. By the time I was told I needed repair surgery, my EF was relatively high but could not feel it. 4. Nothing brought on my MVP symptoms, they were transient and pretty much showed up whenever they felt like it. When my POTS flared up and I became unable to work, that is when my MVP symptoms were made worse and essentially precipitated my need for surgery. My EF was normal 4 months before my flare. I was told I needed surgery 2 months after my flare. 5. Salt intake had no bearing on my MVP symptoms 6. I started taking propranolol for my POTS when it flared up. Though I had to stop taking it after 2 weeks because I couldn't tolerate it, it did not help my MVP symptoms while I was on it. 7. When my MVP got bad enough that symptoms were interfering with my life, nothing else helped. Just the surgery. I hope my answers were helpful. What symptoms are you experience from your MVP? Do you think you are experiencing MVP syndrome? If so definitely talk to your cardiologist.
  20. bellgirl- if MVP could be a cause of POTS, would it stand to reason that once the MVP is repaired or the valve is replaced, POTS would improve? I underwent a mitral valve repair surgery a year and a half ago at age 25 and my POTS has not resolved. Much has improved but my heart is doing very well and my POTS is not. blue- You may not have developed MVP after your POTS diagnosis, it -- many people go their whole lives without even know they had MVP. You can have MVP with or without an audible murmur. I was diagnosed with MVP at age 19 but there was no murmur until I was 24...only months before I needed repair surgery. Murmurs can be cause by many different factors. They were hearing what they called a "rub" right after my surgery because I developed pericarditis (inflammation of the pericardium) from the procedure. in general there are many things taht could be causing the murmur, and the murmur can come and go depending on the cause.
  21. congrats on getting approved! honestly, it's such a weight off your shoulders to not have to worry about getting denied and just have the process behind you. i totally get feeling relieved but also resisting the idea of it. i found that it was such a wonderful relief to be acknowledged that what we have is in fact disabling, but i worry of course that when i am able to reenter the work force i'll have to explain why i haven't been working, and who wants to hire a person with a chronic debilitating illness that flares up? I know its not legal for an interviewer to ask about those things, but i worry it will work against me. the way i think of it is this is a temporary situation and doesn't mean i'll be "disabled" forever. i also got approved on the first application.
  22. My integrative medicine doctor tested me for Vitamin D deficiency last fall and found that my vitamin D was extremely low. He put me on 20,000 IU a day and by February my levels were high and I had to stop taking it. I can't say I noticed much of a difference in how I was feeling on the vitamin D I don't remember if he tested for low vitamin b-12 but he put me on methyl-b12 injections for fatigue which made me feel 100 times better for several months until my levels plateaued and now I don't really notice a difference when I take a shot.
  23. I never watched this show (not really my generation's thing) and just happened to read today about how Bea Arthur's character on Golden Girls had CFS. I googled it and found this gem. It makes me wish we all had Bea Arthur to have a talk with every doctor who has told someone that their illness, be it POTS, CFS or what have you was "all in their heads." https://www.youtube.com/watch?v=Zovd9eKvy8s
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