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edriscoll

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About edriscoll

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    Advanced Member
  • Birthday November 14

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    Female
  • Location
    New Hampshire
  • Interests
    gardening, painting, cooking, sewing, reading, creating art with a variety of materials

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  1. It is overwhelming when you are first diagnosed. But it does get easier over time and you begin to manage your symptoms. You may want to take a look at a video we produced about POTS called Changes: Living with Postural Orthostatic Tachycardia Syndrome. It includes interviews with patients and specialists. Understanding the syndrome is half the battle. https://www.dinet.org/info/video-living-with-pots/changes-living-with-postural-orthostatic-tachycardia-syndrome-r113/ Best of luck and keep asking questions and talking to other people living with this - it really does help. Hang in there.
  2. Just to add a safety note here - since the expected changes in HR and BP can cause syncope or presyncope symptoms, please be sure to have someone with you if you attempt to measure at home, especially the first time you try this. Fainting suddenly can result in serious injury so please take precautions to have someone available who could lower you to a safe position if you feel faint or become dizzy.
  3. Our quarterly newsletter, Dysautonomia News, has an opening for a writer. The newsletter covers a variety of lifestyle and medical topics, as well as medical news, a medical Q & A column, research and open studies. We publish to a large audience of DINET members and opt-in Facebook followers who receive the edition via email. The newsletter is very well received drawing consistent "open and read" statistics far above the industry norm, so your articles will reach a wide audience and give you a great opportunity to help others living with dysautonomia. You do not need to be a professional writer, however, strong writing skills are required. Please understand that this is not suitable for blog writing, although a writer's personal experiences are frequently included in their articles. If interested, please take a look at some of our past publications and email webmaster@dinet.org https://www.dinet.org/info/newsletters/dinet-newsletters-r41/ A writing sample is required to apply.
  4. #GivingTuesday is an international day that was started to bring attention to nonprofits and their causes; an international day of charitable giving. DINET relies on donations, big and small and all are important and greatly appreciated. But just as important to DINET's effectiveness are the stories that we all share about our journey, our experiences with this disorder and the people who help us along the way. In honor of #GivingTuesday, please share a story about how DINET or a person you met through DINET has helped you along the way. I will start with mine. When it was first suggested that I may have something called "autonomic dysfunction", I began searching for anything that I could find on the subject. That was my introduction to DINET and many other organizations with a LOT of medical information. I was frightened, very ill and very overwhelmed. I read, printed, memorized and shared the information from all of the sites. I was now well informed but still just as frightened, ill and overwhelmed. And then something changed. I sent an email to DINET asking a question about information found on the site. I expected to wait a while and then receive a followup email with links to more information or a medical answer to my question. What I received was a personal email from a DINET volunteer. Her email gave me the medical answer and links that I needed and so much more. At a time when I was being shuffled from one lab test to another, one appointment after another, I frequently wondered if anyone remembered my name. But this DINET volunteer took the time to share some of the common experiences dysautonomia patients have. She wrote me and asked questions about how I was managing. She encouraged me to join the forum and to continue to reach out to other people sharing similar experiences. Through the forum and discussions with other members, I was no longer isolated and I was better understood. It was that personal one-on-one communication that I so badly needed and that made all the difference to me. I joined the forum and sometimes just reading something that someone else wrote was enough to help ease my own struggle. I became a volunteer for DINET not long after joining and I try to be that "voice" on the other side of the email or message whenever I have the opportunity. As important as the knowledge and education offered has been to managing my illness, I will be forever grateful for the personal touch and experiences shared by the volunteers and DINET members. That's my story...now it's your turn. ******************************************************************** Ways to donate - https://www.paypal.com/us/fundraiser/charity/1552351 shop - smile.amazon.com (select Dysautonomia Information Network) or check out the many other ways - https://www.paypal.com/us/fundraiser/charity/1552351
  5. Great new video just posted by Lauren - Chronic Corner on YouTube covers travelling with POTS and other chronic illnesses. She offers her tips and also shares tips sent in by members and followers of DINET. Worth watching. Also, check out the article written by DINET's VP, Chelsea Goldstein ,
  6. When I rise quickly and walk, I become pre-syncopal and experience similar strange sensations in my hearing and vision. Everything sounds as though it is very far away and the world becomes very grey. I almost always remain conscious but I can't speak or move during these episodes. I was given a similar explanation by my doctors as Pistol was given, that it is the result of changes in circulation and BP. But I've never experienced this when sitting or lying down, only when I change position or move to quickly. You didn't say what tests were run on your heart and lungs. But while shortness of breath is a symptom of dysautonomia, it is also a symptom of other illnesses and it can be difficult for a physician to distinguish between the different issues that are going on. Usually the shortness of breath that is attributed to dysautonomia is related to exercise intolerance or changes in position and it usually resolves quickly if the person stops moving or sits down. It sounds like you are experiencing shortness of breath when you are already sitting. It may sound simplistic but I've attended Pulmonary rehab twice, the first time for Pulmonary Edema (after surgery) and again last winter for an underlying pulmonary/cardiac issue, and I was shocked at how shallow I was breathing without realizing it. I was told that most people do not breathe from the diaphragm as we are meant to, but instead take shallow breathes from only the top portion of their lungs. I was reminded of this when you wrote that your drop in 02 resolves when you take a few deep breathes. Bottom line, there are underlying issues that can have very similar symptoms to dysautonomia., even the deconditioning that can happen after illness can cause dyspnea. If you are getting breathless or notice continued drops in oxygen levels that get worse or don't resolve, don't give up on asking your doctors for help. You didn't mention if your doctors recommended any sort of rehab after the DVT/PE, but it might be worth asking about it. If for nothing else, it is monitored exercise at a slow pace and because it is monitored it may even give your doctors more information about what is going on. It didn't cure me of course, but it really helped me understand how to help myself and manage my symptoms. I hope you feel better soon.
  7. There is not always an underlying cause for POTS. It can also be the end result after the body being stressed by illness (such as flu or virus), trauma and surgery. To suggest that there is always an underlying cause or condition that is ongoing in addition to POTS is not correct.
  8. It's that time again to promote awareness and education wherever we can. Let's face it, we are all dedicated to doing this 365 days a year, we don't need a special month to tell us to push awareness. But it is a great reminder to consolidate our efforts and start reaching out in ways we haven't before. NEW YOUTUBE FEATURE: So for 2019, we have launched a new YouTube channel for DINET - with a feature called "The Chronic Corner". Our Social Media Coordinator, Lauren Mlack, will be posting new videos every month, with topics ranging from the latest information about treatment options to understanding the many forms of dysautonomia to living with chronic illness. There will always be something to learn, explore, share and question. DISCUSSION AND SUPPORT have always been at the top of DINET's priorities. Whether you are more comfortable on Facebook or you prefer anonymous chats on our moderated forum, both offer you a way to connect with other people living with dysautonomia. Discussions range from comparing symptoms, asking questions about others experiences with a medication or treatment option, to handling the stress of chronic illness and so many more. You can read the forum anytime, but you do need to become a member if you want to join in the conversation. https://www.dinet.org/forums/ or check out our Facebook page - https://www.facebook.com/DysautonomiaInformationNetwork/ INFORMATION GUIDES: This is the time to share info with family and friends and help them understand what you live with everyday. Share the link or scroll to the pdf link at the bottom of the page and print. Share with people in the medical community who just don't understand the words on your chart like POTS, Dysautonomia, NCS, etc. Also, if you would like to share information with a group, we have printed materials that we are happy to send along. Please contact webmaster@dinet.org with the name of the group and the number of packets you will need. Please allow 2 weeks to receive your request.
  9. @Stark Thank you for bringing this study to our attention and sharing with members. I will post it to our research page and share with our Facebook followers. Thanks so much!
  10. Thank you KiminOrlando for making this point. FAST (shown in this image posted) is the acronym for remembering what to do to check for stroke vs other causes of drooping or numbness. The impact of stroke can be reversed in part or entirely if medication and treatment is sought as quickly as possible. If anyone has numbness in the face, do the FAST test. 1. Ask someone to watch you smile to see if your smile is symmetrical. If you are alone, look in a mirror to see. 2. Raise both arms over your head. Do both go up to the same level? 3. Is your speech slurred or jumbled? 4. Time - go directly to the ER to be evaluated. I think it is natural when we have chronic illness to make assumptions that all of our physical symptoms can be attributed to the illnesses we are already living with, but to be safe, it is important to distinguish the difference and have professional opinions. In the case of facial numbness without any other symptoms, it is probably still a good idea to see your doctor to be sure it is truly a symptom of dysautonomia and not something like Bells Palsy. Thanks again KiminOrlando for making this important point.
  11. @bombsh3ll Thanks so much for the info and suggestion. I have been evaluated for a CSF and it was negative. But I completely understand the thought - I was told that scoliosis itself can cause the condition and the surgery certainly can. I'm not the least bit annoyed by your message. It is always worth making a suggestion to someone in case they haven't examined that particular scenario. I was not aware of the Youtube video or Dr. Carroll. The video is excellent. I think I will post a link on Facebook for our followers. I think it is worthwhile for people diagnosed with POTS and other forms of dysautonomia to be aware of other disorders that cause very similar symptoms. I was recently diagnosed with Arterial Pulmonary Hypertension. Over the years since my dysautonomia diagnosis, one of the many mysteries for my doctors was why one of my constant complaints was difficulty breathing. I kept reporting that I was fine when sitting or laying down but as soon as I stood up and moved around, I felt that I couldn't take in enough air. Of course, because I was already diagnosed with dysautonomia, and all of my other symptoms (HR, BP etc.) were consistent with dysautonomia, my breathlessness was attributed to the exercise intolerance common with the disorder. They did follow-up and do a few pulmonary tests, but didn't find anything remarkable enough to explain my symptoms. I don't blame any of my doctors for making that call, it all made sense. It was only when my pulmonary issues began deteriorating did we start to investigate other causes, because, of course, exercise intolerance is not progressive. It is sort of ironic that one of the big tip-offs was when I reported to my neurologist that I couldn't sleep laying flat anymore because I felt like I was suffocating. Given that most people with dysautonomia feel better when laying down, this was the red light to look further and consider my heart and lungs. My point is that it is so important for all of us as patients to pay close attention and keep reporting our symptoms because it is too easy to make assumptions that everything we feel is related to one disorder or illness. Unfortunately, it is not uncommon for dysautonomia patients to have several illnesses, so the potential for missing something is certainly there. Thank you so much for the info and for the mention of the video. It is very interesting. Thank you also for your thoughtfulness. Please keep us all posted on your decision and well-being. Take care.
  12. During the 2nd surgery that was done to correct the failed fusion and problems with the 1st surgery, they used chronOs synthetic bone protein with success. For similar reasons as the ones you state, they felt it was a much better option than trying to harvest my bone. It is an individual recommendation and it is great to have options. I wish that all surgeons discussed the options with patients prior to making decisions. You are clearly educating yourself and that will give you the best outcome possible. Best of luck.
  13. It is great to hear that Jodi's daughter was helped and is feeling so much better. However, members should be aware that this center makes claims to "heal what other doctors cannot" as well as other claims to be the "only" treatment center offering cures for POTS. DINET cautions members to seek out physicians offering evidence-based medical treatments and practices. There are many causes for POTS and many that are still being investigated. Because of this there are cases of people with POTS whose symptoms resolve over time, sometimes with no clear explanation. In younger patients, particularly patients under 30 who become ill after a virus or infection, remissions can occur and hopefully last a lifetime. But remission and symptom resolution is very different from doctors offering a "cure". There is no known research based cure for POTS or dysautonomia. and frequently recovery includes an individual mix of medical responses. Please be sure to do your own investigations, consult organizations and foundations who are supported by medical advisers involved in dysautonomia research. And please be very careful when putting your health or the health of your family in the hands of people promising results that are not supported anywhere else. Hearing about recovery is a very powerful message and we are so happy to read about Jodi's daughter. We wish everyone the relief from symptoms and good health.
  14. Sorry for the delay in my response, I was out of town last week. I'm glad that my post gave you some things to think about and discuss with your surgeon. To answer your questions, the best guess my surgeon could give is that the dysautonomia was caused from a combination of trauma to the spine itself (specifically the thoracic spine) and the general trauma of the surgery itself. The surgery was 13 hours long and it required posterior and anterior fusions, blood transfusions and I was intubated for 3 days in ICU following the surgery. My neurologist, who treats me for dysautonomia, has said that that that surgery caused a disruption to all of the major systems in the body. And given my age at the time, it is no wonder that all of my systems did not return to "normal" The specific reason for the first fusion failing is that the surgeon did not use pelvic bone for the fusion. Instead he took a "short cut" and used rib bone for the fusion. To reach the spine to insert the rods and cages, they deflate the lungs. To deflate the lungs, they removed a rib on the left side of my body. To save time, the surgeon used that rib for the fusion instead of making an additional cut to retrieve pelvic bone. The problem with that is that rib bone is very porous - so it doesn't offer the best chance of fusion. Also, fusion surgeries now use bio-medical materials to promote fusion and help the bone grafts take. None of this was used for me. Bottom line, I didn't have a good outcome for the 1st fusion because I wasn't given the best start unfortunately. I learned from that experience not to be intimidated into not asking the questions I need to ask. Since then, if I feel intimidated into silence, I get a new doctor. I wish you the very best in making your decision. Please feel free to contact me again if I can help in any way. All the best, Ellen
  15. I am weighing in here on spinal fusion surgery in general. My cervical spine is not fused, however, I am fused from T1 to L5 with 2 6" screws holding my pelvic bones stable along with a spinal cage in the front of my spine and 4 rods in the back. My surgery was originally done to treat scoliosis, with 2 additional surgeries to correct what was done the first time. I woke up from fusion surgery with dysautonomia. They believe that disruption to the thoracic spine and nervous system caused a type of dysautonomia similar to dysreflexia. I also have an autoimmune component in addition to other health issues. But what I really want to share with you are some of the things that I did not realize or think about before agreeing to have my spine fused. This is not advice or an attempt to talk you out of or into the surgery. These are just some things that I wish someone had told me before my decision. 1. Not being able to turn or twist is a very big deal and limits your mobility and quality of life in ways that are difficult to imagine before you do it. In my case, I didn't realize that I would need to take only small steps for the rest of my life. It sounds funny and hard to imagine, but because of the pelvis being stationary, if I try to take a wide stride, I would end up going around in circles. Like I said, sounds silly and maybe minor - but not being able to just ....walk...without thinking about it is very limiting, especially when you add all the factors created by dysautonomia that impact just getting up and walking. That's just one example, but there are many. Not being able to turn or twist freely makes things like showering and washing your hair now require assistance tools. Getting dressed needs to be relearned. My point is if you can possibly wear something in advance to give you a similar experience to the limitations you will have after fusion, please consider doing it. Speak with your surgeon and ask for a way to duplicate the limitations so you can make a good decision. You want all the information you can have. 2. It is very difficult, if not impossible, for surgeons to predict what effect or disruption the surgery can have on nerve endings and muscle. In my case, I had the surgery in the hope of eliminating pain caused by the scoliosis. What I was not told and did not investigate myself, was the negative effect that was possible after cutting through nerves connected to the spine along with the muscles and ligaments. I did wake up with the original pain from scoliosis gone, but it was replaced with horrific nerve pain that continues to this day and could not be predicted. In your case, your goal is much different, but the point is the same - talk to your doctor (or preferably more than one) about what nerves or major muscles will be disrupted by the surgery and what, if any, effect it could have on your overall health. The top spine surgeon in Boston's Orthopedic hospital who did my final spine surgery told me this "A surgeon's answer to problems is always surgical. It's the patients job to weigh what you can gain or lose from the surgical response" Wise words from the horse's mouth. 3. When a part of your spine is fused, it no longer works the way it was meant to work. That can cause additional stress and strain on the next group of vertebrae in line. The additional stress over time can cause problems to those vertebrae. Ask what impact fusion may have on the health of the rest of your spine over time. 4. Fusions don't always take. I did not know how common it is for fusions not to hold. Granted, the more fusion done, the more likely a break or failure in parts of the fusion are likely. But still, I had no idea. Asking what steps will be taken to ensure you have a solid fusion (there are treatments and medications that can help), also asking what can be done if the fusion does not take as it was meant to (another surgery?). Ask if they are planning to check your Vitamin D levels and your ability to absorb calcium. If your levels are low, ask about being treated to raise your levels before the surgery. 5. Ask a lot of questions about post-op care and recovery. Take advantage of every rehab option given to you. Recovery from spine surgery requires knowledgeable assistance. It's not something you can just do by exercising at home. Also ask about diet. There are a lot of things regarding nutrition (food and supplements) that can help your odds of a successful fusion. I'm not trying to be scary but knowledge is a good thing, especially when it comes to surgery. Thinking positively is a great thing, but asking hard questions isn't negative, it's empowering. I realize that having 2/3 of your spine fused carries impacts that aren't as likely when just a few vertebrae are fused, however, anything done to your spine requires a lot of investigation. Clearly you are doing your homework just by asking these questions. I wish you the very best in making your decision and good luck in whatever you decide.
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