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Posts posted by Elfie

  1. I gained about 10 pounds, mostly over time--- I was super active before, and always had a ton of muscle, which kept me fairly lean. However, I did have a horrible period where the doc I was seeing did an elimination diet and even eating 3,000 calories a day I was still losing weight like crazy. I dropped like 23 pounds in a little over a month and was only a pound or two from being underweight. However, I also had my highest weight up 20 pounds from my regular weight (and 30-35 from my pre-POTS weight). Turned out that I was in the early stages of heart failure, so it came off fairly quickly. I still am holding on to my 5 pounds of less active weight and my 5 pounds of b.b. weight though. My body is actually really good about trying to stay close to its "set point" weight wise.

  2. My most debilitiating symptoms all seem to be related to lack of blood flow/oxygen to my brain.

    I have tachycardia, which is fairly under control with a b.b. and low bp, that is usually undercontrol with midodrene. I also seem to be having NCS episodes, or just periods of time where my bp drops (but not immediately after standing) and my hr no longer can/will raise enough to compensate (sometimes I get indicators to prevent a faint and will sit to do so, but on occasion I've gone down without signifcant warning as "feeling crummy" and "feeling crummy and going to faint" aren't seperate enough).

    Because I am not fainting much or running a hr of 150-200 bpm all the time I consider myself pretty "able."

    However, I am still having huge issues with cognitive type stuff upon standing (even when my bp is "ok"). I physically can stand/walk for a long time without passing out when I use countermaneuvers, but even after a short period of standing or walking I start having "brain issues."

    I'm having problems with dizziness, balance (swaying, walking like drunk, spacial perceptions), thinking, talking (finding the words, cognition of what has been said to me or what I read, slurring words, stuttering, being able to express myself), memory (things like my name or birthday, memorizing new things, putting the orange juice in the shower and the body wash in the fridge, remembering where I am or which direction I need to go to get to somewhere else), fine motor skills (chopping, using a stove, signing my name, getting a key into a doorhandle, shaking), controlling my emotions or what I say, ect. These are all fairly significant anytime I am on my feet for more than a couple of minutes. Once I'm experiencing the symptoms, it can take between 20 minutes and several hours for them to subside-- and I tend not to be as clear mentally even after the worst symptoms subside as I was prior to standing.

    At this point I'm not sure how to proceed in encouraging my doctor to treat these symptoms--

    However, I do know that they are making me miserable and keeping me from doing things that there doesn't seem to be a physical reason that I couldn't be doing.

    How do you treat these type of things?

    Are there other accomodations or coping mechanisms I could be using?

  3. I wasn't being taken seriously about persistent dizziness and "issues" when standing (and even sitting, or lysing down depending on circumstances). However, on of the things that I was able to drive home seems exactly like what you are describing . . .

    I was constantly cutting and burning myself while trying to do food prep/cooking. Chopping veggies was a nightmare.

    After years of doing my own eyebrows, I find it almost impossible to pluck them (fine motor skills, spacial perception) unless I haven't done any standing or are otherwise having a "good day."

    Taking notes can be difficult, or writing--- I have to repeat things to myself like a kid because it feels like I am writing so slowly.

    Reading when standing is not good for me--- then again, I forgot my birthday and tried to use a screen as a credit card machine after waiting in line for the pharmacy the other day.

  4. I'm not sure what to answer---

    My POTS symptoms appeared suddenly (after what I thought was a series of infections and viral "bugs") and then got progressively worse over the course of 3 years (although part of this I also attribute to an extremely stressful situation that was remedied shortly before I began getting treatment). I've made some improvements over the past 1.5 years, but attribute this mostly to medications and a little with an exercise regiment. If I quit the exercise and the meds, I'd probably go back to feeling how I did prior to meds (esp. considering how I've felt when I've had to be off them for even a day or two). I've still had some symptoms get worse or pop up brand new--- and there are several symptoms that I seem to go in cycles with where I go through periods of time with no problem and then have them come back, sometimes with a vengance. Stress and illness cause crashes/flares. My cardio also seems to think I have NCS.

    This summer (late June) will be my 3-year diagnosis anniversary, and in late October I will have had POTS for 5 years (I've had unusual fibro-like symptoms since November of the year before POTS struck-- also after being ill). My cardio seems to think that I will recover, but constantly extends the amount of time that might take and seems to be frustrated I'm not "getting better" already. He has treated POTS patients before, but it seems like they were easier to treat and recovered faster.

  5. I get numbness, for me, it is related to lack of blood circulation to the area. Not quite the same as having your leg "fall asleep" because you were sitting on it (pre-pots) the sensation isn't the same, but the cause is, for me anyway. I move and fidget constantly, especially while sitting if I am having one of those days.

    Laying down or sleeping, I sleep on my stomach with my arms tucked up near or under me rather than "hanging" down by my sides. Mine tends to take slightly longer to kick in though.

  6. CC-- we sound very similar in some respects. I mentioned my BP issues because at first docs did not think I was having any, and it wasn't until we could consistently keep my hr around 95 sitting that my bp made a show--- I still generally don't have incredibly low bp, especially when I am well enough to go out and go to the doc (I generally get low bp in the mornings and evenings). I was severely dizzy but my bp numbers weren't low enough to be causing it. Still, my dizziness improved on midodrene even though my bp is not much higher--- don't know why? Probably due to vasoconstriction somewhere. However, there are definitely types of POTS where there is no bp involvement.

    I also get headaches, and I have had migranes since age 12 (they appear to be genetic from my father's family).

    Fatigue is a huge issue for me off meds, but both metoprolol ( I only take 50 mg and was able to impact my hr with exercise over time to bring my hr down lower rather than continue bumping my bb up-- it did take 5 months to see a real impact though, but isn't a cure, and I was conditioned at the time). However, each b.b. increase really impacted my fatigue . . . it put the natural pots fatigue over the edge.

    My hr was much higher than your initial heart rate-- I've only gotten my seated hr to stay between 85-110 after b.b., midodrene (50 mg 3x a day) and 9 months of cardio (swimming w/fins, riding recumbent bike and weights). With b.b. alone, I couldn't get below 130-150 standing (even with higher and higher doses).

    Either way, I do hope you explore other mechanisms that could be exacerbating the trouble---

    POTS patients are so variable, but there is hope!

  7. There are stimulant meds that pots patients use. However, most docs (cardios and others that don't specifically specialize with POTS patients) aren't comfortable perscribing them to POTS patients, especially those who mostly have tachycardia (rather than those that have tachycardia caused by low-bp). Sometimes for the obvious hr implications, sometimes because that is an off-label usage of a controlled substance in a condition they probably aren't that familiar with. There are some docs that will. Stimulants can sometimes raise bp, which is why they can be extra-beneficial for those with low bp. However, they can also cause tachycardia and make it worse--- if I remember right you say that you are having problems controlling your tachy at work still?

    I can't speak for you, but I know personally I originally didn't show low bp readings, but that was because my hr was super high compensating for the bp-- this is what was contributing to my dizziness. Yours may just not be low. Both low bp and high hr can independently make fatigue worse. Both can sometimes be improved with exercise. Often docs will require you to try an exercise protocol to see if that improves hr and fatigue before they put you on a controlled substance. Docs also probably will want you to have better control of the tachycardia (your main "textbook" symptom) or at least figure out what is going on more in depth before they put you on a drug that can cause tachycardia.

    I've often had better luck with nueros willing to deal with symptoms like fatigue-- my cardio is excellent, but doesn't want to treat non-cardio symptoms, even ones that are worse because of cardio meds like beta blockers. Sometimes nueros are uncomfortable messing with things that might affect cardio meds.

    Sometimes it isn't bad to have testing for other problems-- many POTS patients have comorbidities or similarities with other conditions and some people get relief from POTS symptoms by treating adrenal or sleep issues. Also, sometimes POTS patients also have CFS, which can be made worse by overdoing when fatigued, where sometimes POTS patients feel better when they force themselves to get up and move around a little.

    I think it becomes a question of knowing your body-- sometimes trying meds can cause "crashes" so many patients like to try and figure out in theory if a med should work. I have a nuero that is willing to discuss using stimulants, but wants to get more testing first. Like you, I still am able to work (fatigue that makes me feel like I am glued to my bed and all) and she doesn't want to mess around trying meds and possibly cause worse symptoms.

    Maybe it would help for you to describe you fatigue more, since not everyone with POTS has the same fatigue. Are you waking up feeling rested? If you aren't having tachycardia, is your fatigue level lower? Was it lower before starting a beta blocker? Are you still having increased fatigue upon standing even without tachycardia? Can you tolerate caffiene? Does it help with the fatigue? Does it raise your heart rate?

    I would personally say that brain fog, dizziness, and fatigue are my three worst POTS symptoms--- they are also the three hardest to treat/get treatment for personally.

  8. In some ways beta blockers helped-- I was able to do more before my heart rate got so high that I felt like I was dying. However, the beta blockers keep me from exercising as hard as I would in the past or want to at times, because they keep my heart rate low enough that if I am really working out hard I can end up more dizzy because my beta blocker isn't allowing my hr to get high enough to catch up. For me to get my standing/resting heart rate to stay between 95-130 I have to take enough b.b. that it prevents my heart rate from going above 180 bpm or so. Yet, even working out at 180 bpm I rarely am working hard enough to be short of breath or have sore muscles-- but I will get dizzy.

  9. I appreciate the replies.

    I think I get frustrated because all doctors and family members/friends see is what I am doing. I feel very lucky to be able to do what I can do, but at the same time I can either a) work a job in an "ideal" type setting (the kind with very little standing, a very cool work environment, low stress, and little brain power required), B) go to school, or c) kind of keep a house.

    When I was working full time and living alone or going to school and living alone I was barely meeting my class or job requirements (constantly a couple of classes/assignments from dropping out or bad days from loosing my job) and coming home and going to bed. I wasn't cooking, cleaning my house (it often went 6 months between vacumings), was buying groceries in 15 minute bursts, and wasn't going out anywhere. I went almost a year without ever going out to dinner (unless you count going through the drive up after work), shopping, or anywhere else. It doesn't seem to matter that I was sometimes vomiting several times a day at work and having to lay down or squat to avoid passing out.

    Now that I can't find another position where the conditions are ideal enough where I am able to work, I am spending almost all my time doing laundry/dishes/cooking/dog duties/heating the house (I am living with family members and not currently paying rent-- so I am doing 3-4 ppls laundry, dishes twice a day, ect) and recovering from those activities. I still can't clean the house (vaccumning and scrubbing) or do the shopping. Without a full time work or school schedule I sometimes have the energy to go out to dinner or coffee once a week. There are times I don't leave the house for a month. All I hear about is what I'm not and should be doing.

    Still, because I've managed to mostly stay working or in school, can still drive, and because I do well on stress tests/exercise (if I could hike at all times, I'd be golden) I keep getting told that I am too functional to worry about trying more treatments, for using assistive devices or programs and tend to recieve nothing but judgement and confusion from family and friends. It was a huge fight with my doctors to get a handicapped parking permit when I was a full time student--- my cardiologist actually suggested that I sit down in parking lots if I got too dizzy/had syncope or presyncope. I had to break a mirror on someone else's car by falling against it trying to get out of the path of cars in a parking lot before syncope took over to get the point across that I didn't feel safe.

    I worked for an organization that did work for museums. I've never been to most of the museums that I worked with/for because I can't stand long enough to see more than a small section or two. A senior class I had to take to finish my degree required touring of a museum and in-depth analysis. Even constantly moving I couldn't get through it--- eventually I had to pay/bribe someone to go through and take pictures of all the information and exhibits so I could actually look at them. I'm not an idiot and can clearly see ways that I could have toured the museums, but would have either had to have the support of family and friends, better treatment, or a more understanding doctor.

    There are so many things that I enjoy doing that I can no longer do because I don't have a medical team that thinks my abilitiy to do more than make a living (which is currently compromised) and exercise/sleep is important, and don't have a family or friend support system that is willing to be inconvenienced.

    Now it really does sound like a pity party! LOL-- still, what can you do?

  10. By the time I was diagnosed and actually recieved any treatment, I'd been living with POTS and NCS for 3 years. Then the first real "wave" of treatment took almost a year to work out something somewhat effective.

    Four years is a long time to just have your life stop, especially as a young single adult without a spouse or parental support system. Especially undiagnosed, I felt like I had to keep going until I absolutely couldn't. Yes, I made myself pretty ill, but over time I developed compensation tools and eliminated parts of my life that I couldn't compensate for. There have been some areas of my life that I just kept going in, until something had to give and I couldn't go anymore.

    School for me was one of those things, but I finally hit the wall 5 credits short of finishing. I spent 8 months trying to get those last few things taken care of-- I graduated with a half finished thesis and a small waiver because someone took pity on me. All I got from my doc was a congrats and to ignore my signifgant complaints of fatigue and brain fog; and from family, some criticism at how ridiculousy long it took me.

    I sometimes feel more alone than when I wasn't diagnosed. All doctors, friends, family and even other dysautonomia patients see is the "fuctional" person and never all the things I've had to suffer through and give up so everyone else can see the "functional" person.

    I guess I kind of expected that I wasn't going to have to do this forever-- because it isn't sustainable. I thought I'd have some help and understanding (from family, friends) or treatment that would allow me to recover some of my life.

    Instead it is always hemming and hawing about further treatments, ignoring my complaints, not being understanding about how I can go work out (seated or in the pool) but it kills me to clean the house, upset because I can't find a job, not getting why I can't go to work and then go out, and even why being able to stand for x-amount of time isn't really a blessing if your brain doesn't work while standing.

    Anyone else ever feel like this? Where do you go from here?

    Maybe I am just throwing myself a pity party . . .

  11. I believe this is the type of pacemaker than my cardiologist would like me to consider having, as he mentioned the pacing speeding up when bp dropped. However, I'm not sure if I'm ready for such a step at this time, or if it would make a big enough difference in my symptoms to be worth it.

  12. When I first tried midodrene I got what I would call "withdrawl symptoms" but it was almost like rebound low bp--- as my dose was starting to wear off or in the evening I would end up more exhausted and dizzy that I was on a normal day, although the midodrene did improve my symptoms during the day (although not as signifigantly as your reaction). Over time this has become less pronounced-- not sure why.

  13. I was in a relationship when I was diagnosed. Although me feeling poorly prior to being diagnosed did lead to some arguments, after diagnosis everything went downhill. Suddenly he didn't see the end of the tunnel of having to be supportive-- I was diagnosed with something that had no "cure." My diagnosis also really laid all the cards out on the table as far as explicitly pointing out what I needed help with and should and shouldn't be doing (stuff I already instinctively knew, but had nothing to back up). It meant that he had to step up to the plate in some areas, which unfortunately he wasn't willing to do consistently.

  14. I really feel for you. Although I haven't had doctors accuse me of not having POTS or having a "made up" condition, they have latched on to one or two symptoms and if those symptoms aren't present or under control, then the dysautonomia must not be affecting me, be serious, ect.

    I have had a very hard time getting treatment for any symptoms beside hr/fainting, and it took me several years after diagnosis to get those treated seriously.

    I have issues getting treatment because I went untreated for so many years (developed good coping skills, but that doesn't mean I don't suffer) and have always been a very high functioning person and because dysautonomia can be so variable and manifest itself in such strange ways. I've found ways to "be able to function" because the other choice was end up in a psych ward-- that doesn't mean that I have any quality of life.

    Your kid is very lucky to have an advocate in you.

  15. I thought long and hard about this and realized that this was what was making going to classes so difficult for me. I was having to get up, be functional, then sit for 30 min, get up--- and so on and so forth. To get around I was having to stand and walk long enough to get my symptoms all riled up, then sit (but not long enough or just barely long enough to recover). In situations like this, I may be somewhat symptom free for the first 10-15 min of walking or standing, but once I have symptoms and sit, the next time I stand I am right back to the symptoms in no time. I've written before that I have very little brainfog on days that I do only minimal standing (1-2 min. here and there throughout the day)-- I can sit clear-minded for hours when I am not on my feet. However, it seems like after that first longer period of sustained standing (could be 10-15, even 5 min sometimes) no matter how long I rest to recover my mental clarity doesn't seem to recover.

  16. I've had this happen before. I have no history of signifigant head injury (no concussions) and no dyslexia. Just lovely POTS. I was working on my thesis this past year and had a prof. that required all the candidates to attend a weekly "writing session" where we were forced to sit in those stupid little desks for 4-5 hours. For me, these sessions occurred after a full day of classes and in a building that was hot enough to make my classmates sweat (they had a flooding emergency and appeared to be trying to dry out the problem with the heat! stupid). I wasn't a complete mess physically (although I had issues with chest pain and SOB which aren't usually things I deal with except at night)-- after all, I was still good to drive home after this--- I was a complete mess mentally. This prof had her heart in the right place, but she never got that she was wasting 5 hours of my week.

    Anyway, I'd be writing away thinking I was brilliant or at least thinking that I was puzzling things out and that there would be some useable work. Then I would get home and wouldn't be able to understand pretty much anything I typed. Sometimes there wouldn't be recognizable words, sometimes they would be peppered in.

  17. I worked various jobs, including construction and landscaping type work where I was standing 10+ hours a day in 100+ degree heat at times. Never had an issue with it. My most recent job required a lot of standing and luckily didn't take much brain power. I can stand for a long time wit BP meds and countermeasures and occasional short breaks if I'm working in a cool environment, but I'm miserable and stupid the whole time.

    Had a stressful period of time in my life where I was run down and caught a series of viruses and infections. Started having nerve-related pain after one, and then dysautonomia symptoms after another. Didn't catch on to the fact that the dysautonomia symptoms weren't related to the nerve pain (thought for a while I was passing out from the pain, puking because I was in pain). Reduction of stress decreased the nerve pain considerably--but not the dysautonomia symptoms (although I flare less, but my day-to-day doesn't seem to improve).

  18. The weather? I don't know where you are located, but where I live almost EVERYONE is currently parched. The cold dry air with no snow or rain for weeks on end plus being indoors with dry heat going will literally desicate you. For me, it is just worse than for normal people because of POTS-related urination/dehydration. I can have 8 ounces of water and won't hold onto any of it-- or so it feels.

    But yeah, could just be normal. My perfectly healthy parents have been having the extreme dry skin, dry eyes, dry nasal passages (with frequent blood noses from dry air) issues too.

  19. It is possible that this is not a problem at all-- not caused by POTS, but nothing else dangerous either. It can take some girls years to have regular periods (I personally only had a few a year for the first few years of my period and was told this was completely normal by my docs-- I didn't have POTS). Also, if you are underweight or have lost weight due to POTS that could cause this. I'm not a doc, but I personally wouldn't worry about it unless your periods are causing you unusual pain (or you are having cramping or sharp pains when off your period) or you are bleeding excessively or for a very long time when you get your period.

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