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Amyschi

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Everything posted by Amyschi

  1. Hi Missy, Welcome - so sorry you have to be here, but glad you are, as it is very helpful to talk with others who understand what you are going through. So sorry too that you have had to quit working so young, but it is certainly understandable. It is impossible to work when dealing with so many issues. Hope you will be able to see the autonomic specialist soon. I found that sometimes they will tell you later than they can actually get you in. But I an in US - not sure where you are. In other countries with less specialists, indeed it may take longer. I don't have an answer about the pupillary dysfunction, but I think I've read that pupillary accommodation problems are common with dysautonomias in general, but hopefully once you are seen, they can put all the pieces together and be able to alleviate some of your symptoms. Hang in there.
  2. Hi Lucy, Welcome, and please do keep in touch. I recently joined, and the folks here are so helpful. It helps just to be able to "talk" to others who understand!
  3. Hi Roxy, So sorry you have so many issues to deal with; best wishes to you, and for finding the needed help. I'm sorry that I don't have any experience with that, to be able to offer any suggestions. However, just wanted to mention to anyone out there (this is probably not your situation), but you cannot apply for work-related SSI if you have not worked for the last five out of 10 years. Even though I was ill, I had on my own taken a few years off to care for my elderly parents, and by the time I could go back to work, was feeling too poorly, but it was too late to even apply for Disability. So to anyone out there, please watch your dates carefully if you need to, unfortunately, leave the workforce .
  4. Thanks for the response, Katybug. I'm so glad that you don't have it; one less thing to worry about!! I'm sorry about the migraines, though. Oddly, I don't get migraines, but do get severe tension headaches coming from problems with stenosis in the neck. I know migraines are even worse, and feel for all who have them. Wow Lewis, I've never noticed the increase on breathing in, but I'm sure it's possible. I do notice it increase on swallowing or any movement; not necessarily always tachycardia, but more just a pounding of the heart. I think it has to do with the release of adrenaline maybe, in response to just a super-sensitive response on the part of the autonomic nervous system in all of us, but just my guess. I notice you see a cardiologist; I wonder if he/she could confirm that? Interesting that you can take the beta-blocker as needed; I have wondered about that and would prefer not to take it all the time due to side effects. When did he/she advise taking it - at the onset of your tachycardia or before exercise? Good luck with it.
  5. Wow, I am reading all of your posts on this with amazement, but sadness too. For sure, any activity, even mental calculation, as you were saying "states of," is a stressor and can bring symptoms on. if I am having a more symptomatic day, I am even afraid to initiate calls for something necessary to check on, as I am not sure I can finish it without getting real faint. I just plow through and pray to get through it. I think even neurologists don't understand this, and if you try to tell doctors or family, etc, it understandably sounds unbelievable. Sadly, no one can understand just how much this condition can affect a person, down to the most basic activities of daily living. I always say to myself that I am grateful for all the things I don't have, but it is a very limiting and disabling condition to try to function with, isn't it? I honestly don't know how anyone with this condition works or goes to school; I would think it would be almost impossible. I don't think anyone can truly understand unless they have lived with it. It's hard to plan on going out or even starting something like a baking project. I don't know about all of you, but I can change from minute to minute too. I'll think I am doing baseline and pretty good, and "I'm okay and can cook this," and then in the middle have to stop. Just curious if any of you have had a "bubble study" done? I just had this as part of a transcranial Doppler test, and it came back showing that I do have a PFO, which is a patent foramen ovale, or a hole in the heart. They say it doesn't cause these dysautonomia symptoms, but it is another issue with incorrect blood flow, so you have to wonder. I know that they have connected mitral valve prolapse with dysautonomia, so I wonder if there could be a connection with this too. They say one out of four people have this, it is a congenital heart defect, but most will never know they have it unless it causes a stroke. Just curious. Thanks.
  6. Lewis, that is really "interesting" how your symptoms could be so different at different times, but that is good at least that you don't have it all the time and can sometimes do activities that you love! I am that way too; some days not tachy at all on standing, for instance, and then other days it is real symptomatic. I think it must be like catching colds maybe; sometimes the body handles it, and sometimes you catch the virus. I myself, however, find that any additional "stressor" will bring it on consistently, i.e. having a virus, an upset stomach, a lot of pain, etc. It's almost like that additional circumstance pushes the dysauto over the edge. That might be the case when you get the exercise-induced arrhythmia at times. Just I thought, as I certainly am not an expert! I have read, though, that the symptoms of dysautonomia can vary daily, even from hour to hour, and that is certainly so true, isn't it? Hopefully your appt will go well - thanks.
  7. Hi DG, Wow, I was sorry to read of your daughter's additional diagnosis. Hope she is doing better today. She is certainly dealing with a lot. I bet that extreme reaction to the Diamox really scared you. Will send good thoughts your way. The pseudotumor cerebri is probably causing a lot of problems, and wouldn't it be something if that is the "smoking gun" that, with treatment, will help to bring her symptoms under better control? I would check with her doctors as to whether the diuretic is counteracting her other meds to increase volume, as you said; that is tricky. Maybe they will know best how to do that. I don't know, of course, but I would imagine treatment for the pseudotumor cerebri will take precedence. Best of luck with all this.
  8. This is a really interesting topic, in that some of you have diagnosed arrhythmias such as SVT along with a diagnosis of dysautonomia. Have your doctors indicated this is a separate problem or can it be related to the dysautonomia? My sister, for instance, has had SVT, but does not have symptoms of dysautonomia, as I am sure is the case for most people with SVT. I just wonder if we are more prone to them because of the inherent nervous system problems as they relate to the heart? I, too, note Lewis that the ectopics (i.e. pac and pvc's, I guess) will come on after trying to do any activity, or even the heart will just start pounding real hard, even if not fast). I definitely think it is either overactivity of sympathetic or underactivity of the parasympathetic system, as you said - it all relates to just an inappropriate response on the part of the autonomic system. That is how my doctor explained my tilt table test, that the parasympathic system was non-responsive; therefore, I guess, causing an overactivity of the sympathetic or failure to keep in balance, which causes the symptoms. Has anyone else been told that? Can I ask, too, for those diagnosed with hyperPOTS, how high your norepinephrine was on standing? I was not diagnosed with hyper, but my norepi was elevated only in the 900's. I have read where anything over 600 on standing is abnormal, but then I also read where it is normal for the norepi to double on standing even for normal people - anyone have info on this from their doctors as to how a diagnosis is gleamed from your norepi results?. That was the only abnormal result I had out of all the catecholamines tested. Just curious ow that works. Thanks to Sarah for taking the time to post those links - very helpful to be just handed the info without having to search for it!
  9. Thanks, Targs, for all your support!  Have a good day!

  10. Hi DizzyGirls, Glad you researched the cervical stenosis, and yes, it would be good to mention it to the chiropractor as just one more possible piece of the puzzle. I am so sorry your girls are dealing with EDS also; that may very well play into the whole picture, and I think it is great that you have a doctor in your chiropractor who is so good and willing to explore everything. It does not surprise me that adjusting your daughter's neck helps with some of these issues. I'm sorry that you cannot get permission for the upright MRI because, you are right, I think they do need to be done in an upright position to adequately rule out Chiari. I could get insurance approval, I'm sure, but unfortunately there are no facilities nearby that do them. Amen to what you said on the PPPD. I read too where they think it is psychological because what they think happens is that someone has an acute episode of dizziness and then for some reason later it becomes a psychological fear that they will always be dizzy, they can't do the proper physical compensation that is necessary, so it becomes a chronic perpetuating and "self-profilling" problem. There may be cases of that, but you are so right that there is another whole group of people out there. Very interesting about recent articles that have been published, especially by your own doctor, wow. Would be very interested in reading that if you ever get the info. I myself am kind of an interesting case as to whether or not it is due to dysautonomia or whether it is a co-morbid condition, as I basically had dizziness for many years, but not dysautonomia symptoms until the past five years or so, so the question is whether it is all part of the same syndrome with just different symptoms at different times? My hope for your girls is that, being younger, they will outgrow most of this. I find it really interesting that EDS runs in the family and also that your mom was diagnosed with dysautonomia too. There must be a connection there, unfortunately. So sorry for your mom, but also admire her for dealing with it for so many years. I am encouraged that she is still rolling along with it at 72 - there may be hope for me yet! Could I ask how she is affected and how she manages it? Is she on meds? I know there are more "elder-onset" forms of dysautonomia such as multisystem atrophy, but being that she has had it for many years, hopefully that is not the case with her. Amen also for them to find more answers in the near future for all the unfortunate people who suffer from these very life-altering conditions. Thanks for responding!
  11. Thanks Yogini. I am so glad the exercising was able to improve your condition. As far as beta-blockers, I think they definitely help tachycardia, but they are a double edged sword because they lower BP too, so those with hypotension find them problematic. My pressure is generally not low, although I checked it a few times and it did lower it; I think the dizziness was just a side effect for me. Thank you Targs, very helpful, and I agree, that there are just changes going on that cause an orthostatic intolerance for whatever reason, not necessarily that we can always relate it to specific change in HR or BP. I just responded to my other thread on "chronic dizziness" i.e. this topic too. Don't feel bad about "speculating" - unfortunately, I think that's all any of us can do with this condition, and it helps just having friends to bounce ideas around with! I am sorry that you deal with the neutrally-mediated hypotension - the drops in blood pressure must be so challenging.
  12. Thank you all for the info regarding your dizziness. Wow, it is amazing how all these conditions go together. I am so sorry to all who suffer from the varying degrees of dizziness because, you are right, it can be extremely disabling. The vestibular migraine and any form of vertigo is especially disabling. Like most of you, I have done quite a bit of research on different causes of dizziness and how it relates to dysautonomia. I am sure there are separate conditions, such as the vestibular migraine, BPPV, and inner ear problems that cause a more severe and distinct type of dizziness from the POTS, but from what some of you have said too, such as Yogini, dizziness can be due strictly to the dysautonomia. You definitely had to go the whole gamut to find out it ended up being the POTS, so like anything else, the cause has to be properly diagnosed in each case I guess. I had to actually ask the neurologist I am seeing to do vestibular testing to see where the problem is originating from. I think he just automatically thought it was from the dysautonomia, probably because I do not generally get vertigo (for which I am grateful, that is so scary and the worst). When I first started having dizziness many years ago, it was not typical of inner ear vertigo, and tests showed a "weakness" in the ears, but nothing was ever definitely diagnosed. So I then saw a neurologist (this was all many years "pre-dysautonomia" diagnosis) and he said, after typical testing for MS etc,, that I definitely had something wrong with my nervous system, but he just didn't know what. (This was over 30 years ago, and I don't think dysautonomia maybe was even a diagnosis back then). Then subsequently I just gave up and lived with it for many years, until being seen for the dysautonomia. So I think it is possible that dysautonomia may initially present this way. DizzyGirls, I am so sorry your daughters suffer from such a degree of vertigo. It must be so hard for them, but they have a great advocate in you, that's for sure. I agree about the "chronic postural perceptual dizziness". This sounds a lot like what I have, and may be separate from the dysautonomia. The one thing I read about this condition that I disagree with, however, is that is has a psychological basis. You can certainly tell from your girls that this is not the case, that they do not avoid activities so as not to become dizzy - just the opposite. I think the anxiety comes from having the dizziness all the time; not the other way around! Same thing when doctors say anxiety is causing your dysautonomia symptoms. I have read also that vestibular problems, not necessarily inner ear disease, are common with the dysautonomias. It probably will turn out, as in your case Yogini, that the circulatory disturbance of dysautonomia causes a general lack of proper blood flow to the head, thus causing the chronic dizziness; that is just my gut feeling, of course. It is a very complicated thing to decipher, and I appreciate all who chimed in. If I find anything out from the vestibular testing, I will let all of you know. I just wanted to mention to Kaitlyn, or anyone else who has cervical arthritis/stenosis, that I find this definitely contributes, but to what degree I don't know. I don't know how severe your stenosis is (mine is like 9.5 mm at C5-C6, I read anything underline 13 I think it was is abnormal), and a doctor friend of my sister's at John Hopkins, who is well known in these issues, felt this could be problematic. So this is, as you said, another piece of the puzzle, as to what is doing what. I had sent him my MRI and he was kind enough to look at it for me. My sister has a friend whose daughter was dealing with dysautonomia for several years. They finally checked her neck and found a congenital stenosis. Well, she underwent surgery at John Hopkins, and was completely cured of her problems. I know there is a lot of research into this area as far as a cause of fibromyalgia and chronic fatigue syndrome also. I find there definitely is a connection, because when I try to type on the computer and my head goes forward in an awkward position, afterwards I cannot even walk and keep my balance, so something is definitely being cut off in the neck. Same thing with the Chiari, of course, you have to wonder how much of that is contributing. Again, very complicated. This friend of my sister's was just a teenager, as your girls DizzyGirls. I am just throwing it out there, and wondering if they have ever been tested in that regard? Of note, too, I read where there have been others with the stenosis that have had surgery but the dysautonomia remained, so that is not always the case. I so feel for anyone here dealing with more than one chronic condition causing dizziness - you are all a special breed! Just a quick question too, has anyone had a "bubble test" done along with a cranial Doppler test? I am a little leery of having that done. They inject you intravenously with a gaseous solution and see how it passes through the heart/lungs and whether it goes up into the brain. From what I read, I guess it is actually a heart test to check for a PFO (patent foramen ovale). Just curious. Thanks!
  13. Thank you, yogini! I think it's great that you are off medications - hope it continues where you'll be able to do that. If I may ask, was it a matter of the medications helping curb the condition enough where you no longer needed them, or did you just decide to go it on your own? I actually did try atenolol, but my main problem is dizziness even more than the tachycardia; the atenolol, unfortunately, made this worse, so I don't take it, but I probably should just for the beneficial effect.. If I had constant tachycardia, I would definitely take it. You are so right, too, that it is a matter of finding the right medication combination (wow, that's a mouthful, huh?).
  14. Just wanted to say, Samantha, that I too have a similar presentation with POTS. I have had dizziness mainly for many years, but then five years ago or so developed the dysautonomia symptoms, (i.e. the tachycardia, palps, weakness), so my course was more of a gradual development and worsening, and not as severe as the usual POTS presentation. However, I am probably a lot older than many of you here, 57. There are more days than not (don't want to even say it!), where I am not tachycardic on standing, but then some days I am consistently, so what sets it off I don't know. I too have wondered whether it can truly be POTS (I was actually diagnosed as a cross between generalized dysautonomia and POTS), so maybe that could be where you are also. However, I find now that if I try to leave the house, or get up and do any kind of activity, my heart will definitely "react" and start to beat harder, etc, even if it is not definite tachycardia or a change in blood pressure. I believe, as Stephanie said, that these is a reaction to release of adrenaline on and off, and I can definitely tell when this is happening. When I tried to research this "on and off POTS," I did read where you can have it non-consistently. I just hope it continues that way for you and others if they present that way! Take any good days you can get, right? I definitely agree with Womble, though, that it will worsen depending on activity level or stresses, or sometimes for no reason at all. I will be worsened just if someone comes over to visit or I have to talk on the phone to a company or something. Even eating sometimes will trigger symptoms; or if I lay down too long and then try to get up, so it's a "Catch-22" situation for sure. And it is not because I am nervous doing it; this may be my family just stopping by to visit. It saddens me greatly, because I would almost rather people not come over because I know how difficult it will be for me to just carry on a conversation and visit, while trying not to show it. And forget about trying to go out, right? I don't know about all of you, but I have a hard time just telling others when they come over, for instance, that I don't feel well (I'm talking here severe symptoms such as tachycardia and weakness, feeling like you are going to pass out) and that I have to lay down. This has been one of the hardest aspects of the illness for me, even more so than the limits it places upon us, or the fact that you have to decline invitations and stop visiting people yourself. But that's another topic, right? Unfortunately with this condition, there would be just too many questions/topics to post! Everyone has been so helpful. I am sorry to read, Stephanie, that you started to have problems after giving birth - I always feel so much for anyone dealing with these problems that is also trying to be a parent; I can't imagine. I hope you have a good support system. And Womble, I am sorry to read of your extremes in BP/pulse and problems with fainting; also just your general worsening in the last few years. I can relate to that. Even though I have had milder problems through the years, I did not worsen until my early 50's, and am so grateful for that better time. I know many of you are much younger and that saddens me, but I too have noticed dramatic worsening each of the last five years, which is kind of scary. Maybe it gets harder to cope with as you get older! The old body is not as resilient as it once was! Don't mean to discourage any youngsters out there - I'm sure you will become much stronger because of all this and be able to handle it even better when you are older! I can relate exactly to what you were saying though, Womble, that before, you had some good days and the symptoms might come and go, but now it is pretty much all the time without a break. I hope that all of us have some stabilization and better days with whatever symptoms we are dealing with.
  15. Kaitlyn and Sarah, Thanks so much for the forum tips. I don't actually see the "Private Messenger" button in the upper left that you refer to, Sarah, but maybe I am on the wrong page, and will double check after I post. Targs, thank you so much for this info on the Midodrine, and also how other medications affect you. It is amazing that I have the same responses with dizziness to anything I take, and it almost makes me want to just handle it on my own and not take a chance with meds. Glad to know that the Midodrine, however, was not too bad in that regard; of course, I realize everyone is different, and I won't hold you to it! Ha! The anti-cholinergic effect makes a lot of sense, and I will look into the Benadryl Allergy, as the Benadryl does seem to help the dizziness when it is extra bad, but boy, if it does contain pseudoephedrine, I would stay away from that I think because of the effects on the tachycardia, I really have trouble with dental anesthetics, for instance, as I'm sure many of you do, and finally got to the point where I asked for anesthetic without it. Had to have a tooth extraction and was really concerned about that, on top of just trying to get to the office for the appointment. Wouldn't it be nice just to be the usual "nervous" about going to the dentist or doctor, and not have to also feel so bad trying to do it? But I don't want to complain, because it could be worse, right? (although some days you wonder!). I don't know about this for sure, and I don't know if all of you experience this too, but I think with this condition our nervous system is just super-sensitive and anything extra that our body has to deal with, just being upright or putting a chemical in our body, such as a drug, will set it off. I find that sometimes, and this is hard to believe, if I just talk on the phone or get a little excited about something, it will set my heart to racing and I'll feel really weak, even if I am not standing. Then I think to myself that it must be that I am making myself nervous, or doing it to myself, yet I know this is not the case. I see where you said that the Midodrine does seem to help you because it helps raise the low blood pressure, so I am assuming your pressure is low when you stand? The thing I don't understand about these medications, both fluticortisone and Midodrine is that they are meant to raise blood pressure, thus prevent the dizziness and/or fainting on standing, but what if you don't have low blood pressure, just dizziness? Will they still help? I think I will start a topic on how many people with orthostatic intolerance but without a drop in pressure take them and, if so, whether it helps. I would be interested in your response on that too Targs. Thanks!
  16. Hi all, and thank you for the responses; very helpful. Good (but I'm sorry) to know that others have this medication intolerance and its not just extra weirdness on my part. I think it's really strange that we also have the constant dizziness too. Again, I have read that any kind of dysautonomia causes this medication sensitivity in itself. I have siblings who can take any kind of medication and get zero side effects - I wish! Everyone certainly is different, but they just think that I wish the side effects on myself; unless you have this dysautonomia to deal with, you cannot understand. . Targs and Kaitlyn - I also read your tags and am sorry that you deal with so many of the other dysautonomia conditions. I admire you just being on here and trying to help others. Targs, I was just curious on how you did with Midrodrine. My doctor has put me on this, but I have not started it as yet. Interesting that you mentioned an antihistamine helping you, as I find that too, that even a very little bit of Benadryl, which is also an antihistamine, helps, but again with the sensitivity, can't take much or else I am knocked out. Which would be okay if I had vertigo and really had to have it, but otherwise if it is the baseline dizziness, even though it is constant while up, I try to handle it. And Kaitlyn, interesting that the benzos help you, I'm glad. I remember years ago the first doctor I saw put me on a low-dose Valium, probably same reasoning - anything that helps the nervous system calm down. DizzyGirls, so sorry that your daughter is going through this - that must be so hard. Interesting about the rate of metabolism possibly affecting her. And thank you YankeeBelle for sharing that additional information on the testing. The idea to take less of a medication is great if you can do it - unfortunately with some meds, like the ulcerative colitis drugs, they are a sustained-release that work in the colon, so have to be given in a large dose - they can't be split or anything. It's funny, but just to show how sensitive we must be, that med is supposed to work mostly topically on the colon and very little is supposedly absorbed by the body, so even stranger why I would react to it that way. They generally have a very low risk of side effects in the majority of people - so I think we in this world of dysautonomia are definitely a breed of our own! Sometimes it scares me to think of what would happen if we had to decide to take chemotherapy or something like that - I can't even imagine with the way we feel at baseline. Would be interesting to know if anyone has had that unfortunate experience. I certainly hope not, but I'm sure many have had to in addition to their chronic illness. Take care all, and thanks. P.S. Being new to the world of forums, I need to study up on how it works here - so sorry, I'm sure there is a way to respond to each individual poster, but if there is, haven't figured it out yet. Any advice appreciated if it's just an easy click.
  17. Thank you so much for this information, Katybug. I will certainly research it more. Maybe it is the reason some people (especially those with dysautonomia, I've read), have more trouble with medications. Sure would be nice to be able to take a medicine and have it help, without it seeming to make you feel so much worse. I also appreciate your welcome email - it is so nice to have a place to go where people understand and can offer helpful hints! Have a good day -
  18. Thanks you for the responses and welcome, and for offering to help me fix my title! I discovered after I posted notice of the error, that I could just hit the "Edit" button and change it! Sorry you both have to be here, but grateful and you are so right, this forum is so helpful. I'm sure I will get a lot of useful info and tips. I personally find that it is difficult for family and friends to understand, but all of you do. I find being thankful for all the things I don't have to be helpful, as I'm sure you do too! And isn't it absolutely amazing how having this condition makes you so grateful for little things, like just being able to get up and do something minor! Interesting your responses on the dizziness, and you are right, it is very difficult to decipher whether things are from the dysautonomia or something else, but I personally think it all goes together. I also have what I believe to be fibromyalgia due to severe muscle pain, but, as an example, the neurologist told me that having fibro is often confused with being due to neuropathic pain of the dysautonomia condition itself. Although you are right, Corina, one could have other conditions along with it, such as inner ear Meniere's, but I don't typically have vertigo which would be characteristic of that ( I feel for anyone who has vertigo with their dysautonomia, the scariest). And "mom." interesting, but unfortunate, that you have had the chronic dizziness also, not due just to standing or low blood pressure. Sometimes I will even get what I call attacks where if I get dizzy laying down, my tachycardia will start up big time and I'll get extremely weak to the point where I can't get up, and that is without being upright, so there has to be more of a mechanism going on with these conditions that just getting the symptoms of POTS when you stand. Not sure what your type of dysautonomia has been diagnosed as, but I feel for all. Wishing you a good day -
  19. Hi, another question please. I have a history of ulcerative colitis, and in the last year have not taken my 5-ASA maintenance medication because it makes my dizziness, tachycardia, and weakness so much worse. This was a very bad move, as I recently tried to re-instate it and had a very bad reaction. I generally am unable to tolerate any kind of medication except Tylenol, which I have heard also is typical with dysautonomia, but has anyone had the experience where they cannot tolerate needed medications for other health conditions because of the dysautonomia?. I took it last night and woke up in an extra bad state, which all of you can understand is difficult to deal with on top of our "baseline" condition. Just thought I would throw it out there, in case anyone else has UC and has had this intolerance problem, and what they did to be able to continue with their medication. I have been hesitant to try the treatments for dysautonomia for this same reason, as everything I take makes me extremely dizzy; I would rather almost just deal with it on my own. Anyone else feel that way? I know it depends on how badly the condition is affecting you and what you are willing to tolerate. Thank you.
  20. So sorry, I gave this post the wrong heading. Thank you
  21. Hello everyone, This is my first post, so hope I am doing it correctly. I suffer from dysautonomia, with features of POTS, but my main problem is constant dizziness. I am just wondering how many out there have this as their primary symptom, even when you do not have low blood pressure with standing, but just whenever you try to move or do anything. I can have POTS, but then also many times do not have the tachycardia, but am just extremely dizzy with loss of balance. I have read in other information that vestibular problems are common with dysautonomia, and also that it can be due to the faulty circulation, but just wonder if others present this way. I am a 57 year old female who has suffered mainly from dizziness since age 23, and then five years or so ago the dysautonomia symptoms came on; i.e. the orthostatic intolerance. Just makes you wonder if it is two separate problems, very confusing. Thank you to all out there who share their time and stories. It certainly does help that one is not alone.
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