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But, the short answer is: NOTHING.
Peace,
Lindsay
So glad you hosted Kathy for her book blog tour. We met in Dallas and have been friends since. She supported me while I was writing my book, and I did the same for her. As Kathy points out, you never know who your real friends are until adversity strikes. Kathy is a true friend!
Blessings,
Jennie
that’s so true! how wonderful that you were able to support each other while writing your books!
Happy New Year, Lindsay! I’ve nominated you for an award(s). Here: http://the-labyrinth.com/blog/blog-awards/
Great outlet. Great blog.
Running with dysautomia. Son says exercise/run. Any advice on how to build up strength legs?? Thanks for all you do.
Hi Jean, thank you for your comment! Exercising can be difficult for people with dysautonomia, but can also be very beneficial. Stronger leg and core muscles helps push the blood back up to the heart and brain and helps reduce blood pooling. However, each person’s ability to exercise varies greatly. I can’t run, and can’t walk for long distances, but I’m fine with seated exercises like riding a recumbent bicycle. My doctor also recommends using a rowing machine. Lifting weights with legs and exercises to strengthen the core are also very helpful. It’s important to start very slow and set limits, but consult with your doctor before starting any workout plan to be sure it’s safe!
Hi Lindsay, I’m reading an article that I thought you might find helpful as it talks about dysautonomia and POTS http://geneticgenie.org/blog/2013/10/21/acetylcholine-deficiency-in-chronic-illness-the-hunt-for-the-missing-egg/
Thank you so much for sharing this article!! I had a 23andMe genetic profile done a while ago (back when they still offered genetic tests), and this article allowed me to login to my 23andMe account and showed me my results for the SNP. I’d love to get tested for the acetylocholine receptor autoantibodies, if only I could find a place to get tested!
Thanks again!
I was diagnosed with POTS last December and dysautonomia this summer after having two cardiac ablations. I have limited information on this and wanted to k ows if you could give me any advice on how you dealt with it when you first were diagnosed. My cardiologist is sending me to Vanderbilt in April. I live in Alabama
I also struggle with Dysautonomia and have had issues with skin rashes, facial flushing, and a whole lot of other issues that are listed under symptoms of Mast Cell Activation Syndrome but no dr around me is familiar with it. Can you please let me know what tests your dr orders along with any diagnosis that you may receive. I have been struggling with all of this for a long time and would appreciate any advice or help.
Also, how did the florinef work for u?
Hope to hear from u soon,
Rebecca Ouellette
Kansas
Hi Rebecca,
Unfortunately the florinef didn’t work for me at all. I had a bad reaction after only 2 days and immediately stopped taking it. I would definitely suggest looking into mast cell disorders with your symptoms. Here’s a list of doctors in Kansas who treat mast cell – http://www.lifescript.com/doctor-directory/condition/m-mast-cell-diseases-ks.aspx If none of the doctors on that list are close to you, you may want to start with an allergist and see if they are willing to run some tests. I will take a look at my lab orders and get back to you on which tests were run.
I got a laugh out of your blog! I have orthostatic hypotension. Dysautonomia is no cake walk. I miss hot showers, traveling, a glass or rather bottle of wine, and being able to function after work. I also miss having a reasonable color and being able to walk up the stairs and driving. Your blog made me laugh today, and today has been a hard day! Thank you so much! Hope you are feeling decent today- as decent as we can we feel 🙂
Thanks for your comment, Devon! I totally miss a hot shower and a glass of wine, too – or even drinking a glass of wine while taking a hot shower! Thanks for reading 🙂
Hey Lindsay! My mother actually came across your sight and I think you and I might be twins. I’m 23, born and raised and NYC, went to the university of Texas in Austin for undergrad and started getting very sick my sophomore year. I had a life threatening case of c-difficile colitis for a year. Then I had a few months of good health…. But eventually I started vomiting after many meals, was unable to have a bowel movement on my own, and was constantly experiencing terrible nausea and pain. Not to mention tons of weight loss again– similar to your dentist, Everyone thought I was anorexic and it was humiliating. I was a walking corpse. After two years of things progressing, and seeing about four different GI doctors (some of whom thought I was insane and kept trying to diagnose me with IBS), one of my doctors sent me to mayo in Arizona. My GI Doctor there and nueorogolist, Doctor Orenstein and dr Goodman diagnosed me with POTS, gastropafesis and colonic inertia. I’m still like you where I don’t need a feeding tube, but life sucks. Was wondering what you have been doing to maintain your sanity, keep your symptoms at bay, Etc…..
hi Katie, thanks for vising my blog! I’m glad you were finally able to get a diagnosis after so many years, but am sorry it wasn’t an easier diagnosis.
i was diagnosed with gastroparesis at Mayo in AZ, too! I wish I had some great tips for you, but unfortunately I’m not sure I’m much help. For the gastroparesis, I have found that eating small meals throughout the day. I probably eat a snack every 1-2 hours (except during sleeping hours). I also avoid foods that are high in fat and heavily processed, as I notice they affect both my GP and POTS. However, I haven’t found an answer to the weight rollercoaster or the occasional vomiting.
For the POTS, I think what has helped more than anything is having a really good doctor who is willing to try new things, and being part of an online support group where I can ask questions and get advice from other POTSies. A beta blocker helps a lot with the tachycardia, but doesn’t do anything for my lightheadedness or dizziness. Compression socks are helpful as long as you don’t waste too much energy putting them on. Drinking lots of water and salt tablets help, but it’s a fine balance, as too much salt might also make me vomit. Exercise is helpful overall, but naturally I feel awful after each individual exercise session.
It’s a long road, but with time you will start to figure out what does and does not work for you. I would definitely recommend joining one of the online support groups (or in-person, if there are any in your area)! It’s amazing what a difference it makes, knowing you’re not alone!!
I’m in Orange County and have a close relative with pots. Your care of your mother touched my heart. Perhaps I could help out at times if we are nearby.
I was diagnosed with POTS at Mayo Clinic during one of their drug trials in late 2008 ….. Lucky me! I got top Doctors with experience and interest in POTS and related issues. I take Mestinon(typically for Myasthenia Gravis) after that study at Mayo and it was a lifesaver, along with high salt intake, avoiding overheating and dehydrating. However, I am now 50 and menopause is screwing up my ability to balance the POTS, anti-depressants, asthmas flares requiring steroids, etc. Is anyone else in this place? How do you find a balance? thanks
Hi! I also took Mestinon for a while. It helped my fatigue quite a bit. Sorry to hear about the menopause screwing up the balance! Are you on artificial hormones? Has your doctor tried adjusting the doses of your medications? I have heard from a few women that they had to make some adjustments when going through menopause, and that they’re symptoms flared for a little while. I hope it improves soon!
Hi Lindsay, its Summer I thought you might like this article, after testing I was way low in Thiamin B-1, 150 mg a day for one month, fixed that wagon. Now for the rest of me. Love you girl!
http://www.hormonesmatter.com/adverse-reactions-hashimotos-thyroiditis-gait-balance-tremors/