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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. 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.
  2. 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.
  3. 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.
  4. @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!
  5. 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.
  6. @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.
  7. 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.
  8. 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.
  9. 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
  10. 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.
  11. I am one of those people with the "strange" symptoms. I have tachycardia but I also have bradycardia quite often, usually within the same episode. At first I was diagnosed with POTS, but I think that was because it was the only dysautonomia disorder they could name. After more testing and observations, the neurologist and cardiologist agree that I have "General" dysautonomia - meaning I have autonomic dysfunction and many of the symptoms of dysreflexia (I have thoracic spine damage) - but my symptoms really don't fit into any one classification. I believe there are many more people out there with a similar situation to mine who never get diagnosed because we don't easily provide checks on the list of symptoms to fit with any one disorder. Interestingly, treatment is the same in that it is all hit and miss, trial and error until you find what works for you.
  12. Hello, I'm sorry to hear your daughter is ill. Our physician database has the information for 2 specialists in Australia. We are working on adding more international listings. In the meantime, we have one in Melbourne and one in Heidelberg. I don't know the distance or how far you can travel, but if they are too far away, you can call and ask for a referral to someone in your area. Specialists treating rare disorders like dysautonomia usually know other specialists. Here is their information: Dr. Murray Esler 75 Commercial Road, Melbourne, 3004, Australia 61 (0)3 8532 1111 reception@bakeridi.edu.au Dr Chris O'Callaghan 455 Lower Heidelber Rd, Heidelberg, 3084, Australia 61 (0)3 9459 2699 There was no email included in the listing. Good luck with finding a doctor and I hope your daughter finds treatment and relief soon. For future reference, the Find a Physician database can be found at https://www.dinet.org/physicians/
  13. edriscoll

    Beat the heat

    Great suggestion MarkA. The one I had died last summer and I have been borrowing my granddaughter's fan over the winter months. But she is sure to want it back this summer. I will check out the Ryobi - I like the idea of the 18V tool battery. Thanks.
  14. Managing & Enjoying Life After reading an article, use your browser's back button to easily return to the Table of Contents on this page. Surviving the Guilt that Comes with Chronic Illness by Amy Keys The Ins and Outs of Owning and Training a Service Dog by Ellen Driscoll Dehydration by Margaret Rose Lombardi Enjoying Life at National Parks by Hallie MacDonald Beat the Heat by Amy Keys Meet the Member: Erin's Story by Chelsea Goldstein Medical Q & A - Member Questions Answered by DINET's Medical Advisors Updated - Research and News about Dysautonomia and Related Illnesses Updated - Open Recruitment Studies
  15. We welcome your letters to DINET's Medical Advisors. Please be aware that the information provided is not meant to be a diagnosis or medical advice. It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to webmaster@dinet.org Related Questions from Two Members: Question #1 from Member Bxxx: Hello, Please can you explain how someone can feel extremely lightheaded and faint when they are sitting with a completely normal heart rate and blood pressure? I understand you can still have low stroke volume and hence cardiac output, which is not measurable without invasive tests. I have heard other patients say they also feel presyncopal with normal observations, but medical professionals often do not seem to understand this. Many thanks Bxxxx Question #2 from Christina Hello, I’m a Dinet volunteer, username clb75. I have a question for the medical advisory board. Many people with Pots experience dizziness when upright even though their BP and heart rate are normal. What causes this and what are the best ways to treat this type of dizziness? - Christina Answer from Dr. Satish Raj I think that there are a couple of issues here – one of nomenclature and one of physiology. The nomenclature problem is with the word “dizzy”. It is not a medical term and could refer to two different medical problems: vertigo or light-headedness. Vertigo is where either the room spins around you or you spin within the room. This is usually not a blood pressure (or heart rate) issues but can be due to problems with the inner ear or brainstem. Light-headedness is the feeling that one is going to faint, although to a lesser degree than when actually fainting. In some languages, the term for light-headedness directly translates to “head spinning”, making it difficult at times to sort these out. The second issue, assuming that it is light-headedness that is being discussed, is physiology. Low blood pressure or a low or high heart rate DO NOT, in and of themselves, cause light-headedness. They do this presumably by altering blood flow in the brain, and perhaps the delivery of nutrients (such as oxygen or glucose) to the brain. This disruption could occur on a more local scale (within the brain) as well. Many things alter blood flow in the brain…many more than I can name. Something as simple as breathing can do so. Hyperventilation, for example, can do this. The challenge is that light-headedness is a common symptom that can be caused by many/most medical disorders. That is why, in many cases, more specific presentations (e.g. association with tachycardia or with fainting) are needed to help to narrow down the list of possibilities.
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