tag:blogger.com,1999:blog-8651943964119399209.post8747410274741458169..comments2023-10-23T15:39:50.048-04:00Comments on Where Did I Get This Lemon?: What is Dysautonomia? What is POTS?Lauren Butare-Smith, DVMhttp://www.blogger.com/profile/11946665842214870896noreply@blogger.comBlogger32125tag:blogger.com,1999:blog-8651943964119399209.post-16225383096628601022018-06-18T07:38:32.342-04:002018-06-18T07:38:32.342-04:00You should take part in a contest for one of the b...You should take part in a contest for one of the best blogs on the web. I will suggest this website! <a href="https://online-casinos.us.org" rel="nofollow">play casino</a>moshrabbi121https://www.blogger.com/profile/09196655542415341085noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-44719540990417489412016-05-12T11:29:50.463-04:002016-05-12T11:29:50.463-04:00Does anyone else's symptoms flare when you eat...Does anyone else's symptoms flare when you eat hot(temp) food?Dysautowhathttps://www.blogger.com/profile/13298382824547015155noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-34742416088496230852015-07-22T06:16:58.707-04:002015-07-22T06:16:58.707-04:00I like the site very much. It broads my mind. ...I like the site very much. It broads my mind. <br /><br /><a href="http://www.unisonbiomed.com/index.php?route=product/product&product_id=269&search=Toshiba+PVT-375BT" rel="nofollow">Toshiba PVT-375BT</a> <br /> Anonymoushttps://www.blogger.com/profile/16710131686065196125noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-81649852384247249122014-01-20T18:14:52.154-05:002014-01-20T18:14:52.154-05:00I'm so sorry that you are having symptoms that...I'm so sorry that you are having symptoms that may be related to dysautonomia. I believe that you emailed me as well, so I will reply to your email instead of posting more here so that I can respond more in depth.Lauren Butare-Smith, DVMhttps://www.blogger.com/profile/11946665842214870896noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-10335203796082995932014-01-15T10:47:28.008-05:002014-01-15T10:47:28.008-05:00I believe I have Dysautonomia and I am so scared. ...I believe I have Dysautonomia and I am so scared. Symptoms appeared after a routine D & C operation three years ago. Is this possible?<br /><br />I have a five year old son. I am so scared.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-70642896131802934422013-11-05T11:55:06.739-05:002013-11-05T11:55:06.739-05:00I agree about gluten. I don't have celiac dis...I agree about gluten. I don't have celiac disease, but I feel a thousand times better when I remove gluten. And you're right, you have to do it 100% for at least 10-14 days to notice any difference. I'm glad to hear that it has helped you too!Lauren Butare-Smith, DVMhttps://www.blogger.com/profile/11946665842214870896noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-48995163353605711712013-10-22T10:15:47.058-04:002013-10-22T10:15:47.058-04:00Trina Rose,
You are right about being gluten free...Trina Rose,<br /><br />You are right about being gluten free. One responder to you indicated exactly why gluten free didn't work for her when she stated she tried to limit it as much as possible. It doesn't work that way, it must be 100%. don't rely of tests for gluten. They are not 100%. I tested negative too! With me gluten has a 2 day to 2 month delay in onset of different symptoms. 2 days for neurological, 4 days gastrointestinal, etc. Cure yourself by removing gluten and follow the Specific Carbohydrate Diet or Paleo, look it up. Ignore your doctors. I have my life back, so can you.<br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-32333039250513300622013-04-22T17:38:37.655-04:002013-04-22T17:38:37.655-04:00Just found out about your blog post recently and I...Just found out about your blog post recently and I am think that perhaps dysautonomia is a more technical term for "sensory defensiveness." Any thoughts?ChristianZhttps://www.blogger.com/profile/10926523379961771939noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-8282689585281462182011-10-05T11:20:12.408-04:002011-10-05T11:20:12.408-04:00Hi Ashley
Please feel free to contact me at labuta...Hi Ashley<br />Please feel free to contact me at labutare@gmail.com anytime! I may take a little time to get back to you, but I will respond. I'm happy to help if I can.Lauren Butare-Smith, DVMhttps://www.blogger.com/profile/11946665842214870896noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-11051129308250103542011-09-30T19:59:47.196-04:002011-09-30T19:59:47.196-04:00Hi, My name is Ashley and I'm 18 and my doctor...Hi, My name is Ashley and I'm 18 and my doctor thinks I have pots. I'm terrified, my mom is scared and i also have ehlers-danlos, would it be possible for me to contact you through your blog or a different way?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-73670372575911345282011-09-08T12:01:47.966-04:002011-09-08T12:01:47.966-04:00Sure Ursula, just email me at lmbutare@yahoo.com. ...Sure Ursula, just email me at lmbutare@yahoo.com. I'm not always the fastest at getting back to you, but I promise I will! I'd be happy to help if I can.Lauren Butare-Smith, DVMhttps://www.blogger.com/profile/11946665842214870896noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-53245286951691174262011-09-08T00:17:16.548-04:002011-09-08T00:17:16.548-04:00Lauren, Is it possible to contact you off this blo...Lauren, Is it possible to contact you off this blog? I would have many questions to ask..., of course if you have energy to answer them. I am at the beginning of my dysautonomia diagnosis' journey. Your blog is very helpful - I appreciate the time and energy you invested into it.<br />Thanks -UrsulaUhttps://www.blogger.com/profile/06907424686922715644noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-11181465478647788402011-08-30T15:40:28.282-04:002011-08-30T15:40:28.282-04:00I got my diagnosis at the Mayo clinic in MN. I co...I got my diagnosis at the Mayo clinic in MN. I couldn't find anyone to help me or had any idea what they were doing until I went there. It was a lot of expense and time (2 weeks of testing for me), but worth it in the long run b/c I finally knew what I had. Hope this helps.Lauren Butare-Smith, DVMhttps://www.blogger.com/profile/11946665842214870896noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-34528593535500635082011-08-28T16:29:40.725-04:002011-08-28T16:29:40.725-04:00Sara, MD. Your suggestions are great. Where and ...Sara, MD. Your suggestions are great. Where and how did you get a diagnosis? I have been trying for over a year, lost my job and my symptoms are getting worse. Take care. BrendaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-36661753638757634672010-10-18T22:27:22.078-04:002010-10-18T22:27:22.078-04:00Lauren, wonderful blog! My daughter has POTS and i...Lauren, wonderful blog! My daughter has POTS and is at the Mayo for their Pain Rehab Clinic to try to learn to cope. <br /><br />Sara: Fatty foods are the worst for my daughter. Anything cheesy, buttery, fried is the WORST. Milk is awful too. I'd lay off the cheese and fatty food for a while and see if you feel better!Abby Brodyhttps://www.blogger.com/profile/00751843634763548789noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-40229151758692916622010-10-01T11:06:13.187-04:002010-10-01T11:06:13.187-04:00Hi!
ISSUE:WHAT MAY HAVE TRIGGERED THIS RELAPSE????...Hi!<br />ISSUE:WHAT MAY HAVE TRIGGERED THIS RELAPSE???? Opinions welcome!!!!<br /><br />I wrote to all of you 2 weeks ago.<br />I kept trying to overcome the dysautonomia flare up and mysteriously symptoms disappeared for 1 week. <br /><br />Then I suddenly relapsed since sept 28 without any obvious reason!!<br /><br />Symptoms predominantly include: Fatigue, very strong heart beats (no extreme tachycardia), Orthostatic intolerance (luckily not fainting).<br />Some tachycardia appears when standing but fortunantly it keeps below 110. Post prandial (after eating) strong heart beats an fatigue are remarkable.<br /><br /><br />Things I can think of as triggeners:<br />1)Three consecutive days of 30 min walking without over exercicing or feeling tired during walking. Then did 4 sets of 15 sit ups and 4 sets of push ups(8 repetitions each time).Enough recovery time was allowd between each set of sit ups or push ups.<br />No post exertional fatigue was felt after sport the first 3 days, but fatigue and dysautonmia symptoms flared up at the fourth day.(no exercise at that day because of fright of becoming worse and because of fatigue.<br /><br />2) ALong the 3 previous days before symptoms and fatigue flare up I ate: gluten (pasta, bread, 5 beer (non alcohol beer), sugarless chocolate (3 pieces), half a glass of red wine, swiss cheese fondue, mexican quesadillas (ham,cheese). No other remarcable things that I can remember. Does any of these sound suspicious for causing symptom flare-up?<br /><br /><br /><br />What may I have done wrong to become sick again? <br />Opinions fully welcome!!!!....<br /><br /><br />Sleep was normal and mood was very good and relaxed. No anxiety felt during those days or on the relapse day.<br /><br />Please feel free to comment about this mail and possible relapse triggers.<br /><br />Thanks!<br />SaraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-32850623847431509852010-09-17T13:12:40.670-04:002010-09-17T13:12:40.670-04:00Thanks for your comments Sara and Trina!
Sara,
I...Thanks for your comments Sara and Trina!<br /><br />Sara, <br />It's great to see your ideas for coping. Some really good ones in there and many that I depend on myself! Although I can't say that I can do that much exercise, but I'm trying to work my way up. Also, are you still able to practice as a doctor? If so, I am jealous! I'd love to hear more about your experience. Feel free to email me anytime at lmbutare@yahoo.com.<br /><br />Trina,<br />I'm so glad that you've had so much of an improvement on a gluten free diet! I was tested and was borderline, so I suspect I may have intolerance but not an allergy. I tried a GF diet for a month or 2 and unfortunately didn't see an improvement. I try to limit the amount I get each day, but it's a challenge when you feel awful. I'm so happy for you and your recovery!!<br /><br />And I totally agree about Vitamin D3. I suspect that almost all of us have a deficiency of some degree (I know that I do) so it's definitely something to get checked by your doc.<br /><br />Thanks for your info girls!Lauren Butare-Smith, DVMhttps://www.blogger.com/profile/11946665842214870896noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-77895561852832132552010-09-17T12:33:38.387-04:002010-09-17T12:33:38.387-04:00I was never tested for celiac, or if I was, it mus...I was never tested for celiac, or if I was, it must have come back negative because I was never called in by a doctor to address it. I found out by going off gluten (and other common allergens - elimination diet). I noticed an improvement within 4 days. First my nausea lessened and my bloating went away. Then my dry eyes started to clear up and my energy levels started to increase. Within a week I was standing around the house just because I could! I would say I was about 80% better within a couple of weeks.TRhttps://www.blogger.com/profile/14876058355300178658noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-90408559287208587132010-09-17T10:55:46.244-04:002010-09-17T10:55:46.244-04:00Hi Trina,
Which kind of celic test did you have e...Hi Trina, <br />Which kind of celic test did you have exactly? <br />Anti transglutaminase antibodies (serum)<br />Anti endomisial antibodies(serum)Type IgA or IgG?<br />anti gliadin antibodies<br />small intestine biopsy<br />other?<br /><br />thanks!<br />saraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-36765029495189589912010-09-17T10:25:11.931-04:002010-09-17T10:25:11.931-04:00Thank you for responding! I just wanted to mentio...Thank you for responding! I just wanted to mention that if you got a celiac test, it may have been a false negative. Only 5% of gluten intolerant people test positive for gluten intolerance. I had to get my kids tests through enterolab.com because their celiac tests came back negative but I wanted to be sure. And sure enough they are both gluten intolerant!TRhttps://www.blogger.com/profile/14876058355300178658noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-4628172434024503322010-09-17T06:16:38.557-04:002010-09-17T06:16:38.557-04:00Hi Trina,
Happy by your great news!! I was testet...Hi Trina, <br />Happy by your great news!! I was testet for gluten intolerance but it was not my case. Anyway, because I just studied the subject recently (CELIAC DISEASE), please keep en eye (with your doctor advice of course)on Vitamin D levels. Its intestinal absortion may be impaired when celiac disease is active. Low vitamin D levels may cause severe symptoms as fatigue, muscle weakness, depression, bone pain, etc. Vitamin D is usually checked as 25 Hydroxi vitaminD (25(OH) Vitamin D).<br />Good luck and enjoy health again!!! CONGRATULATIONS for being brave and having kept an eye on looking for answers!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-42333126157680406992010-09-16T20:29:30.771-04:002010-09-16T20:29:30.771-04:00Just wanted to share my news! I recovered from POT...Just wanted to share my news! I recovered from POTS after going on a gluten free diet! To learn more about my recovery you can see my blog at www.dontmisdiagnoseme.blogspot.com. But if it worked for me, then it can work for others too! I hope by sharing this some of you may find your solution too. Please feel free to email me if you would like to at annie@nakedtruth.ca. I feel compelled to share my story so others might recover their health like me. It's like being born again. xoxoTRhttps://www.blogger.com/profile/14876058355300178658noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-77098864224152214732010-09-16T18:07:13.245-04:002010-09-16T18:07:13.245-04:00This comment has been removed by the author.Unknownhttps://www.blogger.com/profile/14742306202780118668noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-20006819898627888532010-09-16T17:57:35.146-04:002010-09-16T17:57:35.146-04:00Great job with your blog!! THANKS!
I hope you are ...Great job with your blog!! THANKS!<br />I hope you are getting better! With your attitude (positive), I think you will!!!<br />I have dysautonomia as well and have learned lots of small secrets to avoid symptoms or to lessen or shorten them. I hope I can Share them soon with all of you! By the way I am a Doctor. Now I am having a relapse but as always.. I am working hard on getting out of it with:<br /><br />1)patience<br /><br />2) aerobic exercise (walking)(tailored to my individual capacity, functionality and exercise intolerance)I began with 10 min every other day and now do 25 min every other day, avoiding post exertional fatigue as much as possible not overtrainig myself.<br /><br />3)No sweets. I try to eat only complex carbohydrates (those which take longer to be broken down into small sugar pieces by your body). Hole grain bread,pasta, All-Bran, etc.<br /><br />4)Not starving, No fasting. It is beter to do frequent meals in moderate amounts. In vaerage each 4 hours (except while sleeping)<br /><br />5)Limiting alcohol intake.<br /><br />6)Not lying flat 100% (always have my head at least 15 cm higher than the rest of my body).At night it helps to sleep better.<br /><br />7)Shower time in the morning: <br />Temperaure not to hot (I know,... I would like it warmer too...).<br />I always take a shower in a sitting position. I have a plastic cube (30 cm high) where I seat above. I keep my knees flexed. All this is to prevent venous blood pooling in my legs. We need the blood in our thoraxes and brains!<br />Before shutting off the shower I take a 40 second cold shower while remaining seated (cold helps pheripheral vasoconstriction).I let the cold water hit my legs. During the cold shower I keep flexing my feet up and down (at the ankle point),helping the blood to return to my thorax and brain before standing up. I can also help it with massages, only ascending type. But muscle movement will work better as venous blood return depends primarily on the muscle pump generated by muscle contraction.<br /><br />8)Brekfast: althogh I would love to have a warm drink I accepted that a cold drink doesn´t kill me as long as a hot drink. I mean,I I take a moderate amount of meal and a cold drink I do not feel like desperaten sleeping(lying flat or dying as much as when when I take a big big breakfast with a big cup of a hot drink.<br /><br />9)I do not rush myself after eating, specially after breakfast.(I do not feel my best after eating). A good idea is sitting in a chair with my legs extended on a table/chair/sofa (at the level of my hips). Now that my blood has been gone to the digestive system, at least I help my body to recover that blood pooled in the leg veins. Not rushing to exercise, to house work or to standing after eating for 15-20 min helps me to cope with postprandial (post-eating) symptoms.<br /><br />Ok, I have to go to a meeting. Hope to hear from all of you soon.<br />Sara.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-35760850440122200412010-05-01T05:52:24.279-04:002010-05-01T05:52:24.279-04:00Hi thank you for your blog.I'm 32 a single mot...Hi thank you for your blog.I'm 32 a single mother of 3 boys. January of this year I. Finally had team of 5 Dr's get together for all my symptoms. The hope is I may out grow it. Today I wait for disability and hope that when the symptoms appear that management will let me have a bit of life. Looking back over my life and health problems. I can see wear I've had my entire life. For last 2 plus years has taken me out of work. So I want to out grow management symptoms.Live my life free from all that goes with it. <br />Yes after 2 LP multiple blood test. ms.<br />3 MRI's. What a path. Your blog made me feel not crazy about living with dysautonomia. I really miss working. This week alone my HR at 97 plus. Spiking to 180 and BP was 73/59. Those are good for me. This has been sleep week and constipated sweating, and more last week was the total different end <br />Now tonight is the first of many with no sleep. The joy's of my body not knowing. What it wants <br /><br />I have found tools for body temperature. Flip flops and long sleeves. Then long socks for cold feet. And most of all the best of the best for me has been only last month ONB (nerve block). I just went to my neurologist and talk symptoms for now they work. Steroids spearing. And just started pionol. So have to do anuther EDG. What next a brake from Dr's. It took a total of 3 cardiac Dr's, 4 neurologist, 3 rumatoligest, endroconlogist, 5 Interests and 1 family. PCP. The best ENT, anthesgolist that took the time at 2 sinus surgery to say have your automatic nervous system. Looked at. SVT ablation I CAN GO ON ON. BEST NEWS I CAN OUT GROW IT!!!!!! SO IM TELLING MY SELF IVE OUT GROWN IT........ <br /><br />Sorry for misspelling. And typos. It's. 3am.<br />Thank you again. I'm. Not crazy.Anonymousnoreply@blogger.com