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ks42

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Everything posted by ks42

  1. Yes, that was a huge issue for me, especially in the beginning. Oddly (and this is somewhat unusual) because of the type of HyperPOTS I have, the beta blockers actually caused my blood pressure to go up even more, so we had to stop them. What actually helped was taking something that helped lower my adrenaline output. For me, that ended up being Klonopin. I noticed much more stable blood pressures after I got to a good dose. However, I've also discussed things like Clonidine (helps with POTS and lowers adrenaline/norepinephrine) and labetalol (alpha/beta blocker that lowers BP a little better in hyper POTS supposedly) with my docs. Haven't started these yet, but I know they're helpful for some people with orthostatic hypertension.
  2. Katybug - I was blown away by that "autoimmune testing is useless" response too! She seemed surprised when I said there are options such as IVIG, immunosuppressants, etc that treat the underlying autoimmune disease (and sometimes help POTS in the process)!! Also, our POTS doc we consulted is worried about a fungal lung infection, so to me, it seems important to have that diagnosed and treated. So I don't know. I'm hoping maybe she didn't quite mean it the way it sounded, though. I might try your approach and see if we have better luck going through different specialists. Although, we've tried finding a cardiologist to prescribe the cardio meds, but so far, because we live in a town with a POTS neuro, the cardiologists that we've seen have told us they have a policy that they don't treat POTS, they refer all cases to the POTS neuro here (who we can't see anymore). Now I think I will keep calling around though, because there are a ton of cardiologists / EPs here, so hopefully I can find one that will at least do the cardio stuff.
  3. I know a lot of us probably don't live near POTS specialists / major medical centers, since there aren't a lot of them, so I'm guessing some of you have to manage your POTS through local doctors who may not necessarily be autonomic specialists. But, how do you find a PCP who is comfortable prescribing meds and learning about POTS (or who is POTS savvy)? I've reached a point where I can no longer see our local POTS doc, so my spouse (who also has POTS) and I have been consulting with a POTS neuro from out of state (recommended and approved by my PCP). My PCP then becomes responsible for prescribing meds, ordering tests, etc. She originally said that was fine, but once she actually got the protocol recommendations sent to her from the POTS doc, she said the tests for autoimmune disease & pulmonary infections were useless so she wasn't going to order them ("there's nothing we can do if they come back positive so why run these tests") and the meds were too dangerous for her to be comfortable with (migraine meds, Atenolol & Florinef for my spouse, etc). She's been wonderful and open minded up to this point, so this is definitely confusing and disappointing. I don't have another specialist familiar with POTS (and I don't think there's one around here) so my only option is to try and find a PCP willing to treat my POTS, or work off of an out of state specialist's protocol. How do you all deal with things like this? Are your PCPs or other non-POTS specialists generally willing to manage your POTS? If so, any tips on how to find a good one that will work with an out of state doc? Or, do most of you have to travel long distances for medication management & follow-ups with POTS specialists?
  4. I've been taking it for over a year. I started it 2-3 months after I got diagnosed with POTS. Benzo's like Clonazepam (Klonopin) are tricky because of the risk of dependency and difficulty of withdrawal. However, for me it was very much worth the risk - it's been very helpful. I was very, VERY hyperadrenergic when I was diagnosed. I couldn't roll over in bed without triggering a huge surge of adrenaline (and my adrenaline - epinephrine - levels were extremely high). I couldn't sit upright, or even stand for 30 seconds. I wasn't sleeping either - not even an hour a night. At 0.5mg taken every night, I've been able to sleep, and have been able to be much more functional during the day. It lowers the adrenaline output for me which in turn actually lessens my POTS symptoms by lowering my standing heart rate a little. It improves brain fog, reduces that weird shortness of breath/"can't breathe properly" feeling, helps my muscle pain / muscle twitching a little. It doesn't fix everything 100% - I still have breakthrough adrenaline surges, and I'm still sick enough with my POTS that I'm disabled. But, I would be a lot worse off without it. As far as side effects, I think they are very dependent on you individually and the dose you take. Dizziness and grogginess are really common. It's a long acting drug, and if you're tired a lot, or super sensitive to meds that make you groggy, even taking it at night might affect you during the day. It can also lower blood pressure a little and I think cause very slight vasodilation, so at higher doses, I could see it potentially worsening POTS or orthostatic hypotension (if you have that). I did notice it worsened my POTS slightly when we tried to increase my dose to 1mg (which helped with my breakthrough insomnia but did make me a bit groggy and more POTSy, so obviously that was too much for me!). Of course, there is always an issue with dependency/withdrawal with benzo's. Some people have issues with withdrawal long after the drug is stopped. However, I've been on and off benzo's before, and when I stop, I taper down by about 1/4 to 1/8 of a pill every 2-3 weeks, and I haven't had any withdrawal issues so far... although that's not the case for everyone.
  5. Thanks corina - we're staying positive and hoping for some answers at some point down the road! Kellygirl - that's awesome that you had a toxin workup. I haven't so far - I had the autoimmune and degenerative disease panels, but no toxin testing or anything like that. I'm definitely thinking that's something we need to push for. Thanks Katie. Fingers crossed that something comes of it... I know it's very, very hard sometimes to find a cause for POTS, so we're both aware we may never find anything. But we're staying hopeful anyway. At least now I feel like we're getting something done
  6. Thanks everyone for suggesting possible exposures. I've been looking for an occupational med doc, and have found a Shoemaker-trained mold physician in my area thanks to all of your suggestions, so we're looking into having some of the mold testing done ASAP. Additionally, my spouse and I both recently went to a new cardiologist whose mind was blown by the similarity of our symptoms. He sent us to a medical toxicologist. We (and our doctors) have to jump through a million hoops to get the actual appointment set up, which is going to take awhile, but once we get everything in place, I'm told the appointment will be extremely thorough in looking for environmental exposures and potentially even overlooked infections.
  7. I happen to like the taste of salt water, lol, so my drink is basically 1/4 teaspoon fine ground sea salt in 16 oz water combined with about 30 drops Elete electrolytes. Sometimes I'll use more salt depending on what I need that day. If I want to flavor it, I'll infuse it with strawberry or cucumber or something, or I'll just add a little bit of juice. Or, if I use a different electrolyte packet instead of Elete (like the electrolyte-only Emergen-C, Celtic Sea Salt electrolyte mix, or Nuun which has stevia), I will get enough flavor and sweetness from those without sugar. I don't usually use Nuun, though, it's just an occasional thing, as I don't do well with much stevia. For variety, I also drink at least 8 oz of broth during the day, and 8 oz coconut water (both have sodium and electrolytes). I think those both really help a lot too. Also, I alternate sodium/electrolyte drinks with plain water as per my physician, so I do get a break from the salt, fortunately
  8. Sugar is a trigger for a lot of neurological and metabolic conditions for many reasons. It flares me so badly I can't have it in my diet to the point where I even have to cut out high glycemic foods, like certain fruits, honey, molasses, etc. As far as the salt tablets - I can't take them either. The salt in salt tablets is sometimes mixed with large amounts of other things (like potassium chloride). Technically, potassium chloride is good as it offsets the potassium depletion you might get from Florinef, and is an essential electrolyte to balance salt intake, but my doctor actually told me some patients can't handle that much potassium chloride (at least not in the form / amount in the Thermotabs I was taking). The other issue is a lot of us have sensitivities to chemicals and additives. There are a lot of additives in some salt tablets (like maltodextrin and other things) that can also flare POTS for some people. I was one of those patients - taking salt tabs made my tachycardia worse for several reasons. I find I handle sea salt the best, so I use mostly sea salt, sometimes table salt, and make my own electrolyte / sodium solution with sea salt and an electrolyte formula (like Elete). That's worked the best for me so far. I do know some POTS patients have had amazing luck with salt tabs, though, so maybe trying a different kind, or trying less at a time (can you cut the tablets in half or quarters?) might help.
  9. Sarah - yep, they did the labs before giving fluids. It will be interesting to see if the next set of labs is normal (fingers crossed). My creatinine and glucose were normal, fortunately! Interesting that it's happened to you too. I do wonder if it's a dehydration or low blood volume thing. And thanks - I do feel MUCH, much better.
  10. Interesting. Thanks for that suggestion, I haven't taken any new meds or anything, but I do have a few supplements that I kind of tend to take on a very irregular basis. I might stop all supplements for a little bit and see, since none are essential. Maybe I'm even starting to react to something I'm eating, or something in my environment. I'll try to think back to any changes like that when it started. Also, we think we have ruled out mast cell, but I know it's a really hard diagnosis, so I'm thinking we can't be 100% sure. When I talk to my POTS neuro next week I might ask about revisiting the mast cell idea. For now, my primary care doc re-ran the labs - hopefully they're normal, so we won't have to investigate any further. She also said it's possible I just wound up with a bronchial infection, so she gave me an antibiotic (azithromycin) and said it's my call if I want to take it or not. I'm currently trying to decide if I want to go that route, as I tend to react to SO many meds.
  11. Interesting. Come to think of it, I flared at the exact same time last year - in fact, I think I was in the ER at this time last September too. My spouse (who also has POTS) was just in the ER a week or two ago for a flare as well. We're both kind of useless right now I've only had this for a year and a half (ish), so I didn't put it together before. Fall flares must be a thing?!
  12. Last night I went to the ER because I'd been experiencing left sided chest pressure with a nasty cough for about two weeks, and it suddenly got worse (along with some new chest pain). Along with this, my POTS decided to flare completely out of control, and every little move I made (even sitting up in bed) would send my heart rate up past 130, which is really not typical for me anymore. Adrenaline surges every few seconds too! EKG and chest x-ray were OK, but the weird thing was that my labs came back with low CO2 and high anion gap, indicating some sort of acidosis. I also had ketones in my urine (highly unusual for someone who's not diabetic or starving themselves!!). My blood sugar and the rest of my electrolytes were fine. The ER doc chalked everything up to typical POTSy dehydration, gave me fluids, and discharged me. The chest pressure, chest pain, & cough are still there, so I'm following up with my PCP today (and probably cardiology too). Is there anyone else who knows if they've ever had acidosis or abnormal blood gas levels (CO2, anion gap, etc)? I'm discussing this with my regular doc today, I was just curious if it really does happen sometimes when us POTsies get dehydrated. Also, has anyone ever had chest pressure that lasts for an extended amount of time? I've had it before, but only very intermittently; it's never stayed constant this long. It's driving me crazy. Right now, it feels like my 40 pound puppy is sitting on my chest (which has happened before, so I actually have a frame of reference, haha).
  13. OK, thanks. Also, I see now where you had already said in your previous post that they're not the same - I must have glossed over that before (it's a big brain fog day for me too!).
  14. I've been flaring lately too. My POTS was really well controlled over the summer, and now all of a sudden everything is going haywire! My HR and BP are unusually volatile. IV fluids really help me through a flare the most (I'm in the ER getting fluids as I type this, due to a huge flare & dehydration). Sometimes if my adrenaline is surging I'll increase my Klonopin dose for a day or so to calm things down. I can't think of anything else that I would suggest right now (brain fog's bad today), but will update if I happen to remember anything else that helps me.
  15. So, is neurofeedback the same as biofeedback then?
  16. I've talked to several POTS patients who can do small amounts of caffeine, as Katy mentioned. I personally cannot. I'm so extremely hyperadrenergic that even a sip of a caffeinated beverage can send my heart rate over the edge (although I might be exaggerating a teensy bit when I say a sip - might be more like a few sips). Yeah, my POTS doc didn't believe me about my intolerance to compression at first - I had to show him. I guess it's really not common!
  17. First of all, I second what Katy said about complications from the LP. Symptoms of head pressure, backache, blurred vision can indicate a complication from the LP, like a minor spinal fluid leak (which are sometimes hard to catch), or it could just be that she's having a rough recovery from it. The compression stockings might work better after she's had a couple weeks or so to recover from the LP, although they actually don't work for everyone. They make me worse because my vessels are very near the surface and collapse too easily, so they reduce my circulating oxygen below 90% (not good!), even at mild compression, making me nauseous, dizzy, and on the verge of passing out. The don't decrease my standing heart rate either. The other thing I thought of, though - it looks like the backache may have started before the LP, is that correct? If so, did they thoroughly evaluate her kidneys? Kidney evaluation might include imaging tests like ultrasound or CT, urinalysis or urine culture, bloodwork, and a physical exam where they tap on the mid-back region to see if the kidney area is tender. Kidney infection, kidney stones, and other similar issues could all cause back pain like you describe, and could be brought on or exacerbated by a high salt intake. Of course, that may not be it at all - there are a million other things that can cause back pain like that, but it's something that might be worth considering.
  18. I was diagnosed with Lyme twice in the past, many years ago. The first time, after a lot of trial and error (and many doctors), I wound up using a Chinese medicine protocol that worked beautifully. Caused a mild herx (headaches, fatigue, brain fog, joint pain) but nothing I couldn't handle. The second time, I was (again, after some trial and error with different protocols) treated with oral antibiotics which worked really well. However, the first thing the docs tried to do (both times) was put me on meds for lyme AND co-infections at the same time, which was WAY too much for my system - I couldn't handle the herx. After that, I changed docs and found ones who were more concerned with treating slowly, and treating only one co-infection at a time. That actually didn't cause much of a herx at all, especially since we started with low doses and worked our way up. Although, it was the co-infection treatment that I believe was responsible for my success; treatment for lyme alone didn't do anything until after I had eradicated the co-infections. Based on clinical symptoms alone, the docs diagnosed me with babesia and ehrlichiosis the first time, and babesia and bartonella the second. My co-infection tests were either negative or borderline (not positive). I didn't have POTS at the time I had Lyme; I've only developed POTS very recently. I have, however, visited a number of lyme docs to see whether the POTS is caused by some Lyme left in my system, or even a new infection. So far, we don't know. It seems unlikely though because my spouse also developed POTS shortly after I did, and so did my former roommate, so that's just weird. One interesting thing to consider - I saw several lyme docs who had successfully treated POTS patients. They were all supposedly able to successfully eradicate the POTS, but said they didn't see improvement in their POTS patients until giving them anti-malarials for babesia (co-infection). I've heard similar success stories from POTS patients on lyme support boards with regard to anti-malarials. Obviously, though, it's very individual, and this is just anecdotal, so I don't know how true it actually is. I felt amazingly healthy after treating for lyme both times. If I knew for sure lyme was causing my POTS now, I wouldn't hesitate to treat again, but I would do so VERY slowly, starting with one antibiotic at a time, at VERY small doses, given the volatile nature of my POTS.
  19. Oh my goodness, that sounds frustrating! I hope the email you sent to your ANS NP might get some results. have been having similar problems with my ANS neuro lately, not specifically having to do with gabapentin, but similar issues. I've gotten frustrated enough that I've looked into switching, although ANS specialists are kind of hard to find! Yes, I've had Lyme before. I'll look at your Lyme thread too
  20. Yeah, this is a really well known side effect - I've been on it twice. The first time, I was on it for over a year for pain from lyme disease. The second time more recently for a shorter period, but it caused cognitive issues and clumsiness both times. And each time, the doctors warned me about this before giving me the prescription. In grad school pharmacology class, that was one of the ways we would remember gabapentin on tests and things - we were taught that some of the most common side effects were cognitive dysfunction (trouble thinking, forming words, memory issues) and clumsiness, so we actually had acronyms and things specifically about that! So I can definitely say you're not alone in this. Granted, some people are lucky enough to never experience these issues with gabapentin (especially those who are on lower doses), but it's definitely pretty common. For pain, I actually found Lyrica worked better than gabapentin, and for me personally, did not cause the cognitive issues that gabapentin did. However, Lyrica's structure is very, very similar to gabapentin, so it still has the potential to cause cognitive issues in some people, and does have its own list of other side effects that can be problematic too. When it comes to nerve pain, those are really the only two medications specifically formulated for neuropathy type pain on the market. There are other drugs that sometimes help neuropathic pain off label - like Cymbalta - but that's an antidepressant (SSNRI) that can sometimes wreak havoc with POTS (although sometimes it can help too, hard to say).
  21. Adrenaline surges can happen in both hyper and non-hyper POTS, so it's impossible to tell without testing. Adrenaline surges in POTS can be caused by a wide variety of things: low blood volume (the body releases adrenaline when your blood volume is low, or even when you're dehydrated), low blood pressure or rapidly fluctuating blood pressure (the release of adrenaline is the body's attempt to normalize blood pressure), rapidly fluctuating blood sugar levels, or of course, hyper POTS. My POTS doc discussed all of this with me on my first visit, and said that almost all of his patients, even those without hyper POTS, suffered from adrenaline surges at some point, especially at night. Most doctors will do a supine / standing test for catecholamines (norepinephrine and epinephrine - the adrenalines). It's a blood test. Some will do it during the tilt test, but my doc preferred to do it separately because the tilt actually could falsely kick up adrenaline due to nervousness and the other autonomic tests they have you do while supine. So they had me lie in a dark room for 30 minutes (no movement, no electronics, etc) and did a blood draw. Then, had me stand for 10 minutes and did another blood draw. The criteria for hyper POTS can vary; typically though, I think it would be normal norepinephrine levels while supine, and elevated norepinephrine levels while standing. How elevated the norepinephrine needs to be can vary from doctor to doctor.
  22. I've got it too. Thighs are the worst, but I do have it in my upper arms and lower legs as well. Makes it hard to exercise - it seems like no matter how many strengthening exercises I do, my muscles don't really seem to get any stronger. We have ruled out endocrine diseases (including thyroid), I don't have any autoimmune markers (no calcium channel antibodies) and paraneoplastic syndromes (like lambert eaton). So, in my case, the muscle weakness is either a symptom of whatever underlying disease might be causing my POTS (which we haven't found yet), or it's just a part of the POTS itself.
  23. Katybug, I've actually had Lyme twice before, and don't know if it was really even properly treated the second time. Currently, my lyme tests are coming back equivocal / borderline (co-infections negative) but they are very close to the positive range, so it's really hard to know if that's what is causing the heart abnormalities. I suspect it might be at least one piece of the puzzle though.
  24. My EKGs have been abnormal since I developed POTS. I do know for sure that all my pre-POTS EKGs were normal, because I was always given a copy of them. I started out with flattened T-wave / non-specific T wave abnormality with ST segment depression, and have progressed to inverted T waves more recently. After my first abnormal EKG, I went through holter monitors, stress tests, and echocardiograms, and everything came out fine, so they told me it's probably my heart's response to a wonky autonomic system that produces too much adrenaline. I do have to have more tests done now though, since it was pretty recently that my EKG progressed to inverted T-waves. I think they're probably thinking of re-doing the stress, echo, and everything else, but I'm hoping they'll still be just as good as they were a year or so ago. I have to admit, I freaked out with the first abnormal EKG. And I mean really freaked out. The computer read it as severe inferior ischemia (immediately impending heart attack) and I was hooked up to a heart monitor at the time. The docs watched my heart rate jump like 30bpm after I saw my EKG printout. It still freaks me out a little - sometimes I wonder if there's an underlying cardiac condition (other than blocked arteries, which is what everyone seems to be most concerned with) that no one has caught yet, but if anything my symptoms have been improving, and so far, no other abnormalities have been found, so I try not to think about it too much.
  25. Yes, Prazosin is an alpha blocker. It's not exactly in the same family as a beta blocker; alpha blockers block alpha adrenergic receptors, beta blockers block beta adrenergic receptors. Because they affect different receptors, that means they really will act completely differently in the body. Side effects will be different, and they will affect POTS completely differently as well. For example, beta blockers reduce orthostatic intolerance by reducing standing heart rate; alpha blockers can actually increase standing heart rate and even cause POTS or orthostatic hypotension in healthy people with no prior history of it. Yes, alpha blockers can definitely lower blood pressure - lowering blood pressure is one of the things they were designed to do. Alpha blockers can actually be helpful for POTS if they are in combination with a beta blocker (for example, carvedilol and labetalol are alpha/beta combo blockers), but alpha blockers taken on their own are on a list of drugs to avoid for POTS patients, as they worsen orthostatic intolerance. They're listed in an article by Dr. Grubb as such (the big POTS guru in Ohio); they're also listed on DINET's "POTS - what to avoid" page. That said, I personally don't have any problems taking alpha blockers. I've only been given baby doses, but they don't seem to make my POTS worse. However, I have hyper POTS with high standing blood pressure to begin with, so lowering of blood pressure in my case isn't necessarily a bad thing. Also, I'm kind of an anomaly with how I react to meds. If you have a POTS specialist, I would most definitely talk to him or her and get the OK prior to going on an alpha blocker. There may also be an alternative med you could take for nightmares that would be more POTS-friendly.
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