Jump to content


  • Posts

  • Joined

  • Last visited

Recent Profile Visitors

502 profile views

res's Achievements


Newbie (1/14)



  1. Minor stress, whether it's good stress or bad stress, can completely wipe me out physically. It's like my body has an extreme overreaction to things that other people wouldn't even notice. Is there anything I can do? Anything anyone has done? This has worsened as my POTS has worsened, and causes similar fatigue symptoms to being upright for too long. I haven't found psychotherapy to help with stress reactions (or with anything, although it did worsen trauma-related issues). I've had many different tests looking for the cause of my POTS and nothing has been found. I use compression stockings, midodrine, fluids, Vyvanse, and row 45 minutes 3x/week, which lets me function at maybe 40% of what a healthy person would on my good days, as long as I am not having a migraine, avoid being on my feet as much as possible, avoid sitting up for long periods of time, avoid stress very carefully, am very very careful about eating regularly, and do a bunch of other things.
  2. I've had a couple major health improvements (going from housebound to able to work part-time) because of supplements that I figured out on my own, but whenever my health improves the demands on me go up, too. There's never more than a brief period where I can actually do what I'm expected to do. It's emotionally draining and physically very rough, to an extent that's difficult to convey - I don't think most people can imagine what it's like to use all your coping abilities and still have frequent emotional and physical breakdowns and have that continue for years and years. I don't know how to change this except to stop working or somehow fix my health. I know that every time I'm unable to work I risk permanent unemployment. But I don't have the mental or physical resources to look for another job while employed. I also think that if I stop work, the relief will be so great that I won't be able to force myself to get another job. I've been trying to fix my health, but when I describe symptoms to my doctors they give me a blank look and say "I haven't heard of that before." One of my doctors even told me that my problems were "unsolvable by Western medicine". I know that I'm supposed to go from doctor to doctor until I find someone who will listen, but I'm not able to do that while also working. I kind of feel like my doctors expect me to go home and just not have treatment, but that leaves me with the same problem as before - the demands on me exceed what I'm able to do because they go up every time I'm able to do more. I have a lot of coping skills which can get me through temporary crises, but those coping skills don't do anything to affect the primary problem where whenever my health improves, I'm expected to do more than I can do. I don't know what other people do that makes their lives so tolerable despite being so sick and being pushed so far beyond your limits. What is it that you are doing that makes your lives so bearable?
  3. For anyone who's seen major improvement on ubiquinol/ubiquinone/coq10: What are your diagnoses/misdiagnoses and symptoms? I have been diagnosed with POTS and autonomic neuropathy. I have had several periods where I rapidly got worse and developed new symptoms, but I think I have been having symptoms for at least 20 years if not more (I am 33 and have been struggling to "fake normal" for as long as I can remember). Listing all my symptoms would take forever, but the most recent ones were muscle weakness that worsened with everyday activities like preparing food, and waking up in the morning with severe freezing/shocklike/burning sensations triggered by any movement. My past diagnoses include IBS, Asperger's, ADHD, and bipolar; I believe those are accurate except for the bipolar, since my symptoms were not typical and involved 3-4 days of severe low energy followed by 3-4 days of anxiety/agitation, and I believe the cycling was a consequence of forcing myself to function whenever I had any energy and then crashing. I have also had loss of appetite and extreme difficulty maintaining weight for nine years. I began looking into ubiquinol because of overlap between many of my symptoms and mitochondrial disorders (in particular, an autism spectrum diagnosis and extreme difficulty maintaining weight, plus gastrointestinal problems and dysautonomia). I began taking ubiquinol three weeks ago along with some other supplements, and had major improvement right away - was able to begin walking again, 3k steps the first day, then 7k, then 10k every day after that. Then, this last weekend, my husband wanted to put the ubiquinol in the fridge since it's a "squishy" supplement. Sunday I felt horrible - incredibly fatigued, barely awake, depressed, miserable. Monday and Tuesday were the same. Late Tuesday afternoon I went to take my afternoon dose, looked at the bottle, and thought "wait, this isn't my ubiquinol." I'd been taking my husband's fish oil pills by mistake! I took a double dose of ubiquinol and fifteen(!) minutes later felt completely normal again - not my crappy "normal" which is like someone else's bad day, but like other peoples' normal. I have energy, I can think clearly, no more oversensitivity to sounds when I wake up in the morning, I can listen to music again, I can have conversations, I can even exercise. Everything is different. My husband said that both the decline and the improvement have been extremely striking. I still have some orthostatic intolerance, but it is far less severe. 100mg at a time is helpful, but not as helpful as 200mg. The effects start after 10-15 minutes, last for several hours, and then decline to the point that I don't feel well enough to work, although not to the point that I can't walk places. This occurs despite my having had normal levels of Coq10 when tested in January. I had also been on Coq10 (not ubiquinol) several years ago, at a lower dose, and it did not do anything. This seems to be extremely unusual, and I'm hoping I can find someone else who has a similar response, and who might have seen other specialists or have had other diagnoses. I am continuing to seek care because I don't know whether the ubiquinol is treating a root problem, or whether it is treating downstream effects of some underlying problem that increased in severity until I was mostly housebound for two months prior to starting ubiquinol. I also don't know what specialist I should see. I have a cooperative but not pro-active GP; he takes me seriously, and is willing to refer me to specialists, but doesn't know what specialists he should refer me to. My autonomic specialist's office is severely overloaded with patients, and they have made multiple major errors in my care and were disbelieving and uninterested when I described my improvement.
  4. How do you handle communication with your doctor when they don't respond to you about major new issues even when you ask them multiple times? They started their clinic only last year and I think they're flooded with patients, and I'm worried that if I'm too pushy they'll decide they're too busy to keep me at all. I'm not sure what's going on or what I should do - I don't know if they're just too busy to respond to me, or if they think my new symptoms aren't severe enough to warrant a quick response, or if they're not symptoms they treat and for some reason they haven't told me that directly, or if they think my symptoms are temporary and will go away with time, or what, but I'd really like to go back to being able to work and to not being mostly housebound like I've been since the start of May! I'm grateful to have an autonomic specialist at all, and there aren't others near where I live and it will take months and travel by air to see another one.
  5. When I wake up, if I move my muscles, I get an instant unpleasant sensation all over my body. It vanishes the moment I stop moving. Some days it's like instantly being chilled to the bone, no matter how physically warm I actually am. On other days it's like my muscles are on fire (not physically hot, just a kind of burning feeling). When it's worse, it can be triggered by normal breathing movements; when it's less bad, I can breathe normally but not deeply. This is new - it began in late March and has gradually happened more frequently. It happens most days, but not all. The last two weeks it's been accompanied by increasing muscle weakness, and has been extending into the day more and more. The last couple days I haven't ever felt entirely normal when moving. Has anyone else had symptoms like this? Have you identified any of your triggers?
  6. My own experience is that POTS plus difficulty maintaining adequate caloric intake caused enormous free-floating "anxiety" that Florinef greatly relieved. In retrospect I think the "anxiety" was mostly actually physiological arousal. When I have anxiety now it usually has a clear cognitive component, whereas the free-floating anxiety wasn't "about" anything. That said, medication prescribed for anxiety has been *extremely* helpful for me, although it doesn't affect my heart rate. It greatly reduced my severe anxiety-type experiences, and helped blunt intense emotional reactions to stressors. I was taking seroquel at a high dose (800 mg) although on Florinef I've been able to reduce the seroquel to 300 mg without a return of symptoms. I also take other psych meds which have been helpful. I'm not currently on SSRIs, although they were partially helpful in the past. Any actual anxiety also makes it harder for me to cope with POTS symptoms, as well as making eating harder.
  7. Hmm... the problem for me is less that pantyhose are scratchy than than the way that it feels when something brushes against my leg (like a skirt). But scratchy sounds pretty unpleasant too. I should probably stick with opaque ones.
  8. I am wondering because the texture of pantyhose makes my skin crawl so I never wear it. I have a pair of Jobst Relief black opaque 20-30 knee-highs that have a wonderful thick smooth heavy feel, and a pair of black Sigvaris Access 20-30 pantyhose that are somewhat closer to pantyhose texture but manageable, and a pair of cheap 20-30 black compression hose I bought off Amazon that are as close as I want to get. I want to order a 30-40 pair of pantyhose, and some of the "sheer" compression hose are cheaper than the opaque ones but they're all pretty expensive! So I thought I should ask about the texture before buying them.
  9. I got my holter monitor data yesterday, and it was surprisingly easy! I called them, asked about getting a copy, and they said I just needed to sign a release and show them ID, and they could either fax the data to me or I could come pick it up in person. I verified that they were giving me the actual data, not just the brief report, and they said yes and that they would be giving me the "trace", which she said meant the readouts. I was in the neighborhood so I went to pick it up in person shortly after. They didn't charge me anything. They didn't give me the entire printout like Peregrine got, just a subset. I put a subset up on photobucket, using *very high-tech technology* to ensure identity privacy, AKA covering up info with construction paper. The first page has a summary of results, mostly in terminology I'm not familiar with (QRS complexes, 2 Ventricular ectopics, etc). It also has my minimum and maximum heart rates and the date/time they occurred on (60 minutes in the early morning, probably while I was asleep, and 158 in the afternoon while I was walking uphill briskly to go turn my holter monitor in). You can see a scan here: http://s367.photobuc...nt=holter_1.png The strip I blocked out underneath "INTERPRETATION" is actually a long bar code. I wasn't sure whether it related to any personal info so I covered it up. The next page (which I didn't put up) says "STRIP DIRECTORY" at the top, and lists 28 strips corresponding to the following 14 pages, each with the time and date and a comment saying what the strip was. The comments are things like "Max Heart Rate", "Iso SVE", "Iso VE", or (for the 21 strips they included out of the 45 notes I gave them), and columns for arrythmia and symptoms/activities (those columns were empty) and a column for comments, which has things like "Standing: Felt light headed" and "Sitting: Felt shaky". There was also a column for arrythmia and symptoms/activities but those columns are blank (the notes were in a column called "Comments" instead). The next page has a strip for my maximum heart rate (158 while walking fast) and a strip for my minimum heart rate (60, while I was in bed and probably asleep). The lower right corner shows my heart rate and the the lower left corner says "tachycardia" or "bradycardia", or is empty if my heart rate is <100 and >60. I don't know what the lines represent but the captions show things in mm/sec and/or mm/mV: http://s367.photobuc...nt=holter_3.png The next page has my "Max R-R" and "Minimum R-R". Don't know what those are. The max R-R was from the morning, when I had been lying in bed (hr=101), then stood for a couple minutes (hr=145), then stood for another five minutes (when the Max R-R was recorded, while I was feeling very sick/light-headed and my heart was pounding and breathing was painful, although oddly my heart rate was only 72 at that time. The min R-R was while I was walking. http://s367.photobuc...nt=holter_4.png I put up one other page as an example (I didn't put up all the strips): http://s367.photobuc...nt=holter_5.png These were taken after I'd been standing for a couple minutes in the morning (hr=145, 143). These are less than 20 seconds apart but the rest of them are further apart in time. After the strips there are a couple pages of summaries (beat counts, ventricular ectopy, various - most of these were left blank, my guess is that they referred to abnormalities that didn't occur for me). The final page I put up has the findings: http://s367.photobuc...nt=holter_6.png The heart rate numbers from the strips are: Lying down: 88, 82, 60 (so avg 77) Sitting: 112, 94, 92, 111 (so avg 102) Standing: 90, 110, 114, 120, 115, 145, 143, 81, and 77. The 77 occurred early in the morning when I was very briefly standing and then gave up and went back to bed, and the 81 was within 30 seconds of when I went from standing to lying down. I think those probably actually represent me lying down, and that the times I recorded from my watch were slightly off from those on the monitor, especially because the 81 and 77 are consistent with the lower numbers I get while lying down when I take my own heart rate. Avg 98 111 with the 81 and 77 included, and 103 120 with them excluded [edited numbers due to dividing by the wrong denominator, oops]. This may underrepresent my heart rate because I'm often reluctant to stand for long periods of time as my heart rate seems to go progressively higher and I start overheating and feeling shaky. Walking: 125, 104, 100, 121, 146, 158, 110, 120, 138 (the last 3 of those were the ISO SVE and VE's). Avg=125.
  10. Thanks for the welcome! (: And the sympathy. I am going to call the place that did my holter monitor tomorrow afternoon and ask them about it, and I will let you know what they say. I am in the U.S. (California). Peregrine - that is super helpful, thank you! I wasn't sure whether it would be pages and pages of uninterpretable numbers, or a file format that could only be read by an special-purpose electronic device, or in a weird proprietary file format, or what...but it makes sense that they would have graphs, or at least the ability to print to graphs. dizzyblonde, I got the brief report from my GP's staff but they didn't have access to the data. The report was written up by the cardiologist but my GP printed it out on their letterhead. AllAboutPeace - thank you for the sympathy...it's interesting that you only found out because the nurses told you - if they hadn't told you, you would just not have found out about it? Frugalmama - yeah, I'm worried that might happen with the cardiologist for me as well. I'm hoping that if that's the case, then if I can get her to look at the correspondence between what I was doing and what my heart rate was, she might at least be willing to convey that to my GP. Cyndi75rose - I don't think they looked at whether mine spiked, but it might or might not have been. When I check my heart rate myself sometimes it goes up right away and sometimes it takes a while. Emma246 - I briefly considered videoblogging the Holter monitor...maybe I should have!
  11. Has anyone had a 24-hr Holter monitor and asked for their actual data? Were you able to get it? Was it in a format where you could see what your heart rate was at different times during the day? My GP's staff said the cardiology people probably wouldn't give me a copy of the data, but I am considering asking for one. My GP was willing to refer me to a cardiologist despite believing that there is nothing wrong with me, and if I can I want to bring the cardiologist information about my lying down/sitting/standing heart rate that was collected by someone other than me. While I had the monitor on, I recorded whether I was lying down, sitting, standing up, or walking around, what I was doing, and what symptoms I was experiencing. This went to the cardiologist, but the only info that they included in the report from what I gave them was that I'd had "numerous episodes of lightheadedness and shortness of breath" and that I'd had no abnormal sinus rhythms or arrythmias. Pretty frustrating since I spent so much time sitting up and standing up and feeling awful, thinking that the cardiologist would look at what I was doing when and at what my heart rate was at the time! ): I checked my heart rate at various times to see if it was doing the 89/lying down 100+/sitting 120+/standing thing (it was), and I have a copy of what I was doing when. Incidentally, I am really really glad that this forum exists. I would not have realized on my own that Holter monitor results could be considered normal even if they show very abnormal changes in heart rate in response to changing position. Dealing with this has been much easier for knowing that.
  • Create New...