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margiebee

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Everything posted by margiebee

  1. I get like, spacey and wired at the same time. Like my brain is spacey but my body is wired. My doctor says its all standard pre-syncope symptoms, when you're not having as much blood flow up to your brain you'll get a bit spacey. At least that's what happens to me.
  2. bambamjr2013, I mainly treat it by avoiding my trigger foods, which I determined by an elimination diet before I was diagnosed with POTS. This involved going on a diet of chicken and rice for a week, and then slowly reintroducing foods and finding which ones caused symptoms. Slow and exhausting, but very helpful if you think you might have food sensitivities and want to treat without medication. I can't eat tomato sauce, strawberries, peppers, anything with high fructose corn syrup or artificial sweetener. My doctor has no clue as to why these trigger me but its some kind of sensitivity/allergy. Probably mast-cell related, I will probably never know. Other than that I use peppermint oil tablets to relax my GI system which is proven to be as effective as meds like Bentyl which I cannot tolerate due to my POTS. I also take a daily probiotic which seems to help as well. So far I have had more success treating my gut issues than any other faced of my POTS, but it is a pretty straightforward answer in my case.
  3. This is interesting, does anyone know if there's any literature on gut issues in the more "hyper" forms of POTS? My doctor is now thinking that I do in fact have hyper POTS, and my digestive issues are quite different from this. I managed to avoid the dreaded "IBS" being put on my medical record because they actually termed it "spastic colon" (which I find hilarious), but basically I've got the opposite of gastroparesis going on. Food goes right through me, so fast that my doctor actually thinks its causing some of my nutritional deficiencies. I can somewhat manage it by avoiding certain foods that I seem to have a minor allergy to, but I always wonder if this is typical of a certain subset of POTS patients.
  4. On the flipside, I become more symptomatic when my sugar drops, which I understand is basically hypoglycemia. I've heard that lowering sugar is good for POTS so I tried it once and yeah, never felt so bad. It isn't the primary cause of my symptoms but for me it doesn't help at all.
  5. Okay that does make sense, I know they did draw blood to test catecholamines during the test but I never was told what the results were so just assumed it was normal, although you never do know, I've discovered lots of things years after they've been tested so I always try to keep up haha
  6. I recently got a letter from the doctor handling my POTS explaining all of his official findings from my testing, so basically nothing. But one thing did sort of stand out to me, it says "normal autonomic cardiovascular reflexes with augmented postural beta adrenergic activation" does the augmented part suggest that part of the test was abnormal? or does that mean something else? hyper POTS was suspected in my case so I'm just curious as to what that bit means.
  7. I had success with Tranxene (clorazepate), a long acting benzo like Klonopin but milder. For me it was able to keep my HR down without decreasing my BP, and I think that's the main reason it worked for me. Most of my symptoms come along with the high HR, whether they're actually caused by it is debatable but when my HR is under control the other symptoms usually are too. That's my only clue as to how it possibly worked for me. I was originally prescribed it before I was diagnosed, when I had a severe episode in my doctor's office that included pretty bad shaking and a heart rate of almost 200, and my doctor prescribed this specific med because he thought it would help with the shaking. I feel like this would suggest that I have hyper POTS and the med was treating that but my norepinephrine levels tested out as normal so I can throw that theory out the window for myself. I haven't tried a beta blocker but my guess is if I found one that didn't make me fatigued it would have a similar effect as a benzo drug on me. It really doesn't help me convince people that I'm not suffering from anxiety when the only drug that has ever helped me is an anxiety med, ha ha.
  8. Well I have gastrointestinal issues that my doctor says are caused by it, fatigue, some more minor breathing issues, some vision problems that we haven't been able to find a cause for yet. Basically my heart rate doesn't increase upon standing but everything else has stayed the same. I do also still have BP in the 90/60 range so that's even still the same. That's why POTS is such a narrow description in my opinion of what this illness actually entails.
  9. Just so you know you aren't the only one, I wrote a couple of months back that when I had a second tilt I no longer had a drastic increase in HR or drop in BP like I did on my first tilt. I had been seeing improvements so it made sense. I still have lingering dysautonomia symptoms and also occasionally will still have POTS flares, the triggers are usually very obvious now. My doctor says this does not affect my diagnosis, I had onset with puberty so it will probably become less and less severe as I age but still linger, I will always have to stick with the lifestyle changes that helped me get better.
  10. It seems promising that vitamin D will help for CFS and Fibro symptoms, at least I'm pretty hopeful. I've been reading articles about how its actually linked to fibro specifically, so I really hope this is a treatment that works for you as well as myself! I'm also trying an herb for my fatigue called Rhodiola and so far its actually worked pretty well for me personally.
  11. Actually Spinner I think one of my worst episodes recently was triggered by MSG. I've found that nutritional levels play a big role for me, and on the flip side so do dietary intolerances. I am in the process of switching to a vegan diet (and not junk-food vegan this time) to see if that helps my body heal quicker now. I also have the typical CFS reaction to exercise, consistant but relatively light exercise is FANTASTIC for me, seems to have contributed to my success actually, but the "tough" workouts that others my age do are a no no. I'll be in bed with dizziness days after a workout if I push too hard, especially on cardio. I'd say this is my last remaining "big" issue actually, I can go most of the time feeling relatively normal but if I really over-exert myself, I'm back to not being able to walk.
  12. Well I suppose its good/bad to hear that this is an equally common thing here as it is in the general population. I also went back to wearing my compression socks and that has helped slightly with the daytime fatigue, so I think it is a combination of factors going on, as usual
  13. I'm 21 but I've had symptoms since I was around 11 or 12. Its always so suprising to me how some people have had it come on so recently in their lives!
  14. He has me taking a 2,000 IU D3 gelcap and we will retest in a couple of months. I'm trying to soak up sun as I can but Ohio is already going full speed into fall so there's not much opportunity now, haha. I was very surprised though, I had never heard of vitamin D being linked to fatigue, but afterwards my father came clean that he had the same issue a couple of years ago. So I am definitely hoping that's it. My POTS is also genetically linked on my father's side so I do wonder if its all connected in some way. It seems that any time I get too comfortable I get a new symptom/issue that I've never had before, go figure.
  15. I posted months ago saying that it seemed that my tachycardia had gone away and that I had gotten some promising test results back. Well unfortunately things seemingly have started to go downhill again. About a month ago, I was struck pretty suddenly with an overwhelming bout of fatigue that still has not quite lifted. I was tested for anemia, mono, thyroid, etc, as fatigue was never really part of my POTS symptoms before. Well the only test that came back as abnormal was a pretty severely low vitamin D level, the number was around 20 and I had already been taking supplements for it sporadically at my mother's suggestion. My PCP said this could be the culprit, so I've started taking a supplement daily, although I'm still waiting to see if this helps at all. But he also has been throwing around the idea of CFS/fibro being part of my problem. I definitely fit the bill for either of these things, but I've never given them much thought as they seem like even more of a "dead end" treatment-wise than POTS has been. But with this new fatigue issue, I'm basically looking for any answer as to why I'm feeling like I need to sleep 24/7. And I know that both of these things seem to have some ties to what I'm already diagnosed with (POTS). Has anyone else here dealt with a vitamin D issue (or Chronic Fatigue or Fibro)? Its so confusing trying to navigate all of this. Also, on a more positive note I have successfully stopped taking the benzo med I was on, so that's a good thing and I know there were others attempting to do the same. It is possible!
  16. I think its more just a definite sign that I'm entering a recovery period. I know this will always be an underlying thing that I'll have to keep doing what I'm doing to control, but the fact that I've almost eliminated my tachy just with exercise and other natural treatments is definitely encouraging. I do actually still have drops in BP that are sometimes symptomatic but its nowhere near as bad as the full on 150+ heart rate episodes I was having!
  17. It still jumps a little bit, but its an increase going from around 75 to 90-100 rather than 75 to 150. Huge difference. Really. I haven't had catecholamine levels drawn but my doctor says that as long as I can control it with what I'm doing we don't really have to investigate further into that. Honestly I think the diagnosis was the "treatment" for me, because from that I was able to figure out what I needed to change - the right exercises, diet changes, de-stressing, etc. I'm sort of partway treating for adrenal fatigue as well because I have low-ish cortisol. I think all of this plays into it. But I would've never known what to do if I had never heard about POTS. So I suppose maybe I'm just one of those people who can treat it with lifestyle treatments. I also had the "typical" kind of onset with puberty that they claim can get better with age so all in all it makes sense.
  18. So today I got the results of all of the tests I got done back, QSART, hemodynamic and breathing. And apparently, everything there was completely normal? So while I do feel a bit ridiculous that I had all that done only to find out its completely normal, and I am a bit confused by all of this, I am glad that I seem to be "recovering", at least for now. I asked my doctor if my positive TTT could've been a fluke, and if all of this was for nothing and I don't have POTS all along. He said that no, there's really no way to "trick" the test, it can't all be in my mind and I was/am experiencing what is technically POTS. But the tests showed no sign of any autonomic dysfunction, so I guess I may never know. I have made some lifestyle changes that seem to have contributed to this, including a pretty strict exercise program, mindfulness practice, etc. I am feeling so much better lately, and I'm so grateful for that. I suppose I'm just confused on how I could have POTS and then somewhat suddenly have it just about disappear. And I feel silly for putting so much effort into trying to figure out the cause when there apparently is none. Anyway, just wanted to give an update, that I am well and hopefully will be trying to move on from this now, whatever this was! Guess it teaches me to have faith that things can get better. And thank you all.
  19. I have a feeling this will be really useful whenever the Clinic finally decides to give me my results
  20. I get this! I consider it to be one of the "triggers" of my symptoms. I remember once when I was younger I nearly fainted and had to leave a show at Sea World because all of the lights and noise were making me physically ill. Similar things kept happening after that. I spent an entire trip to Disney World being sick, if you ever want to find a place that is truely overstimulating that's a good one haha. Movie theaters are also generally pretty miserable as well, unless I'm seeing a very calm film. I was originally diagnosed with agoraphobia but that's not the case at all. A combination of having to stand, bright lights, loud noises, strong smells, these are all triggers for me. I noticed a lot of people mentioned church being difficult, I feel lucky I go to a contemporary type of church that plays only acoustic music and the worship is in a very dim, almost dark, room with soft gentle lighting, perfect for me : )
  21. I have "sensitivities" not allergies but they are as follows: strawberries, high fructose corn syrup, tomato sauce, sulfates, acidic foods (lemonade, coffee, etc), high fiber foods (beans, kale, etc), soy products and tofu, most antibiotics, and MSG these mostly popped up out of nowhere, they cause a variety of symptoms from stomach upset to mouth ulcers. None of it ramps up my POTS symptoms and I can "cheat" a little bit so its not a severe thing. Basically food intolerances. But my doctors have basically said I'm just "sensitive", my gut is sensitive and the rest of my body is also. No answers other than that.
  22. Hi! Sounds like you are on the right track at least. I've been recently diagnosed after having this for a really long time as well. Also, so funny you should mention your dog, mine does the same thing! I've heard there are specially trained service dogs who do this, but mine seems to do it naturally. And since he is so large (150 pounds) he is actually able to stand next to me and help me walk if I need it. He's a Saint Bernard so he has a natural instinct to "shadow" his owner. So funny!
  23. I often appreciate the irony of the fact that I, a person with severe Obsessive Compulsive Disorder, ended up with a chronic illness that is severely under-researched and not well known with so little information out there about it. I think that my persistance due to the manner in which my brain operates is the only reason that I have a diagnosis today, but unfortunately that persistance doesn't end once I've found the sort of semi-answer that POTS is. I constantly worry about what the underlying pathology could be (working on getting an answer), what the final outcome of all of this is, etc. It does overtake my mind sometimes. Since my brain is repetitive in nature (or "obsessive"), I find that repeating a mantra such as "I am living in the present, I am at peace" while meditating to be helpful in slowing the worrying thoughts. The bottom line is I'm being treated at one of the best hospitals and I don't need to be grasping for control like I do, I need to just live and I do have faith that the answers will come. I think its really important to be able to express feelings like this, it really does eat away at you.
  24. I find that it seems like people lack sympathy for me because my illness went on so long without getting a diagnosis, even after going to TONS of doctors, that people around me came to the conclusion that I was making it up. Because surely a doctor would've noticed if there was really something wrong right? My parents claim that I "just found a doctor who was crazy like me" and that's how I got a diagnosis. To me it seems like people would be more sympathetic to a struggle like that but actually they seem completely calloused to it. So in that way, I feel guilty about talking about it to anyone around me. They all seem to hate it. When I have a flare up then they conclude I must want attention at that time. Nobody seems to bother to research the illness and the fact that it is chronic in nature, they just keep asking "if you keep going to doctors why haven't they fixed you yet?". But I try not to feel guilty. I know that truly I am the only one I can rely on to beat this thing. I don't really have support, but that's nothing new for me. I don't feel guilty because I feel proud of myself that I never just gave up.
  25. I get very sleepy from all antihistamines, but my boyfriend (doesn't have POTS but i feel this still applies) has a paradoxical reaction where he gets hyperactive from them and is calmed and sedated by stimulants like caffeine. I know this is linked to ADD/ADHD so if you have anything like that, that could be the cause. Or just an odd reaction. I don't think its too uncommon.
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