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Everything posted by SarahA33

  1. In the spirit of Dysautonomia Awareness Month, newsletter volunteer and member, Rachel Faith Cox created the following awareness ribbons for Forum & Facebook Profiles and a graphic to be used. Thanks so much Rachel, and please feel free to use these. Happy Awareness Month!
  2. Help support Dysautonomia Information Network (DINET)! To start shopping and supporting, click on the Smile.Amazon.com link, and a percentage of your regular Amazon purchases will benefit the Dysautonomia Information Network. If you'd like to log onto Amazon Smile (This is the same amazon you would normally use, but for charities), enter your same Amazon PW & Phone #. At the top left of the screen change the default charity, click "change your charity" and Type in "Dysautonomia Information Network," *Please note this is the same amazon site you typically use, except amazon smile is f
  3. Hello, all! Dysautonomia Awareness Month officially begins in just a few short hours, October 1st. With the help of our members and doctors specializing in Dysautonomia, DINET produced a documentary titled, "Changes: Living with Postural Orthostatic Tachycardia Syndrome". Whether you've seen this video in the past or are watching it for the first time, it's a wonderful video that discusses the experiences of patients with POTS & features experts who specialize in and treat Dysautonomia. Please help kick off Dysautonomia Awareness Month! Share with those in your life who wou
  4. Hi, Yogini, I'm perplexed by this, as a lot of others are also I think. I've had my diagnosis listed 2 ways: POTS w/ a hyperadrenergic component and Hyperadrenergic POTS. This paper was published by Raj in 2015. (Satish R. Raj - Autonomic Dysfunction Center Vanderbilt University School of Medicine, Department of Medicine Vanderbilt University School of Medicine, Department of Pharmacology Vanderbilt University School of Medicine, Department of Cardiac Sciences, Libin Cardiovascular Institute of Alberta University of Calgary) as well as some of the other Vandy researchers. In this paper he cl
  5. To answer your topic question, I'm not sure if all Hyper pots patients take clonidine. Medical Management and Rx's varies from person to person. There is a lot of literature on this site about "One size doesn't fit all" in relation to medication, etc. But, for myself, Clonidine has been a life saver for me. It has controlled my flushing, tremors, lowered my BP, made a small dent in my HR, helps me sleep again. I mentioned in another post that clonidine is similar to methyldopa, which are both in the same class, used for hyper patients typically. Hi Lily! I found this article interes
  6. Hi Draven, When I was anemic, I had this symptom pretty frequently. It went away once I started receiving IV iron infusions. They also checked thyroid labs when I told them about having a metallic taste, too. You mentioned its not medication related, but do you take any supplements? certain supplements can cause it. Also, if you have sinus infections, upper resp. lingering colds, etc. those can cause that symptom also. Hope you get it figured out soon!
  7. Wow, Lily! What a great feeling that must be. I miss that feeling so much. I'm grateful for the doctors and researcher's who give us the chance to have that feeling once again. It's really just a terrible feeling, how it feels to lose little pieces of yourself cognitively. I have some doctors who don't really understand the decline because they've only known me after I got sick. And it's not like this all the time, but if I'm at a party for example, I'll be standing upright and sometimes can't remember what the conversation was about. Things like that. For the first time since I've start
  8. So interesting! I just had 2 rounds of IV antibiotics for a bad kidney infection today. I felt like I immediately noticed clarity. Like a fog was lifted or something. It could be a coincidence, as I did start Provigil last week, but the timing is uncanny. I remembered this post written. (look at the last post written by chaos) http://forums.dinet.org/index.php?/topic/23873-new-to-dinet/page-2 Best of luck to you Sue, I hope you are onto something here. Also, I hope you continue to recover well from your surgery. Sending positive thoughts your way! Sarah
  9. Thanks everybody! The Provigil seems to be working quite well. I've noticed I can't take it after 10 am though or I have more difficultly falling asleep -- And, as I've dealt with insomnia on and off for years, this is something that could be a potential issue. My POTS specialist was concerned about tachycardia, however, that's not occurred, hooray! I am able to focus on tasks for longer periods of time, can absorb information faster while having conversations and fatigue has improved. Draven and Lily, I'm happy that you've had success as well with your medications. What symptom improvement h
  10. I thought the theory of higher NE level's associated w/ brainfog was interesting for a few reasons. Mine have been really high, so I wonder if that contributes to my fog. I have to start paying attention to a correlation between adrenaline spikes and increased fogginess. "Since high levels of norepinephrine in the brain can disrupt cognitive function, it has been proposed that this mechanism could contribute to cognitive dysfunction in POTS patients with elevated norepinephrine levels (hyperadrenergic)" There are many POTS patients who have elevated norepinephrine levels, so I do wonder if i
  11. Hi All, here is an article from Dysautonomia International's blog. It was written by Dr. Amy Arnold from Vanderbilt University. (I'm not able to paste the link for some reason) Cognitive Dysfunction and “Brain Fog” in POTS Cognitive Dysfunction In POTS by Amy Arnold, PhD POTS is one of the most frequent forms of chronic orthostatic intolerance, and is a common source of disability among young adults. One of the most common symptoms reported by POTS patients is cognitive dysfunction or “brain fog.” These terms both indicate a loss of brain functioning in areas such as thinking, remembering,
  12. Hi there, welcome to the forum! I'm not sure how far Denver is from Aurora, Colorado. However, there is a specialist on our physician's list, Dr. Jill Schofield who treats POTS, NCS, NOH. Here is the link to her information: http://www.dinet.org/index.php/index.php?option=com_physicianlist&view=physiciandetail&Itemid=0000&phyid=450 Best of luck to you! Sarah
  13. Hi Josh, You may want to check out some of this past thread. If you read through it, it talks about various neuropathies. http://forums.dinet.org/index.php?/topic/23213-cold-area-on-leg-like-water-spilled-on-it/?hl=%2Bcold+%2Bwet+%2Brunning
  14. Josh, Can you ask your cardiologist for a portable EKG/holter monitor? I had mine for 30 days at the longest, but also for 48 hour periods. When I was having cardiac related events, I would press a button and it would record and send the data to my physician. Sorry you haven't been able to get to the bottom of this yet. Hang in there!
  15. Hi, Hillary, Sorry that you've got a lot going on right now. This can feel frustrating,I try to remember that when one door closes, another one opens.my pots doc was also booking patients out because there such a demand for them (like a great deal of pots docs) It might help if your refering doctor could get in touch with Dr. C to discuss the severity of your symptoms, your test results, etc. It may help or call the cancellation. http://www.mcw.edu/Neurology/Faculty/Thomas-Chelimsky-MD.htm His contact info is provided in the link I believe that Dr. Chelimsky is now at Froedert University, an
  16. Hi Friday, I've had a situation in the past where my doctor told me to contact him but his staff made it almost impossible, so at my next appointment with him I told him about the challenges I was having and he was totally unaware of it. I'm not sure if this is the issue but it may not hurt to mention it. It's so frustrating to try to talk with your doctor and feel like your getting the run around from staff. Not a good look either. Have you been on other agents besides the Prozosin? I was on it for a really short time when they thought I had a pheochromocytoma, but taken off it right away whe
  17. Hi Sue, sorry that you had a disappointing appointment. I am wishing you the best.
  18. Hey Jen, how have you been doing? Best of luck to you as you start making these med changes, I hope that you have great success! Not sure if you'll find the below articles of any help, but like you mentioned it's difficult to find literature on Emend/Aprepitant. http://contemporarypediatrics.modernmedicine.com/contemporary-pediatrics/news/modernmedicine/modern-medicine-feature-articles/about-cyclic-vomiting-s?page=full http://webcache.googleusercontent.com/search?q=cache:BskKXlTIJ2YJ:deepblue.lib.umich.edu/bitstream/handle/2027.42/72300/j.1365-2982.2008.01113.x.pdf%3Fsequence%3D1+&cd
  19. Hi bluejay Here are some links on blood volume testing. I had mine done at the Cleveland clinic http://my.clevelandclinic.org/services/heart/diagnostics-testing/nuclear-imaging/blood-volume-testing http://m.circ.ahajournals.org/content/111/13/1574.full The last article offers some insight as to how they do the calculations.
  20. I'm sorry to hear that Jingles, it seems our bodies which appear to be in a flight and fight mode really dislike stress. If its possible, when I get in my flairs, I try to rest and hydrate as much as I can. I know when stress hits me hard I feel as though I physically have the flu. hang in there, I hope you feel better! Sarah
  21. Hi jingles1978, Welcome to the forum! I'm sorry that you are experiencing such difficulties with lexapro. I wish I could help more, however, I've not taken anything like that. I can however relate to the nausea and weight loss from the seizure medicine I am on, trokendi xr (extended release. Topamax) and I've lost 17 pounds since starting it in the end of December. It's really frustrating. You've got a ton on your plate it sounds like and a lot to balance, I'm glad that you e found the forum. I hope that some of the members who have experiences with lexapro like medications can offer their a
  22. That's so great! What a humorous spin you've put on that. Mine would say "Managed to avoid the ER!" "I actually slept 2 hours straight!" "Graduated to the best doctor in town" or another good one, "My friends really are smarter than yours" Good post. Made me laugh.. I'll continue to think on some sign puns lol
  23. Hi Kitt, Thanks for the link. Much appreciated. I hope you are well... Sarah
  24. My fiance and i stayed at a hotel, the morning we were getting ready to leave the elevator opened and a poddle came in and layed on my feet. I looked at the owner and she said "He's a service dog. He's trained for SVT and other arthymia's. The entire time while my fiance checked out us, he continued to lay on my feet. I'm thinking of looking into getting an Epilepsy Dog, does anyone have any idea where I would even begin with this?
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