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edriscoll

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  1. edriscoll
    @LadyBug45 I understand your feelings. When I was newly ill, I was afraid to go places alone because I had terrible pre-syncope that would drop me on the ground, and I would lose all control of my body, unable to speak, sweating, etc., and if I had a full bladder when it happened - look out! Nothing more embarrassing than that! But I noticed that it was always worse when I was in public, and I believe now that if I started to feel my HR rise, instead of stopping and catching my breath and my bearings, I would start to panic in anticipation of what might happen. So that increased my HR even more and made my situation worse. All great suggestions from everybody here. In addition to carrying water, I also keep a cooling towel or cold cloth with me, especially in hot weather. If I can catch it early, the cloth around the back of my neck (colder the better) can sometimes ease me back to balance. It's like auto-correct for my ANS. I've even poured some of my water on the back of my neck in a pinch. Asking for help may also help. If you can have someone go with you on days when you don't feel well, that would be better than avoiding going out in public. Also, most shops have scooters you can use there. That may help you avoid episodes when you shop. My telling you not to be embarrassed won't help. But I will tell you you're not alone. I hope that helps a little.
  2. edriscoll

    Stavros

    edriscoll posted a physician in Physicians

    Neuromuscular Medicine, Dysautonomia
  3. edriscoll
    @MikeOI have had some personal experience with some of this. I have type 2 diabetes and I am now on Metformin. It has helped my A1C, bringing me down from a 7.8 to a 7.1. But for years before my A1C showed a higher range, I had issues processing food and insulin. I would go from very high numbers an hour or two after eating and then I would drop suddenly to very low ranges (300-400 down to 60-70) It was truly awful. But my A1C remained low. The endocrinologist explained it to me quite simply by calling it a "lazy pancreas" He said that when I eat my levels climb and climb, and my pancreas just sits around doing nothing much. Then it wakes up and releases a boat load of insulin into my system causing me to crash. As I said, it was the least medical diagnosis I have ever received. I was only in my 20s at the time so I really didn't question it. I also should mention that this began following a severe car accident that bruised my pancreas and caused me to have pancreatitis for over a year. In my case, they treated my pancreas instead of the sugar level symptoms. They also put me on a diabetic diet which I did adhere to strictly for many years. I am now in my early 60s and given my age and the history, I'm not surprised to learn I have Type II. I believe that one of the best things I have done for myself over the years is maintaining a healthy Mediterranean diet and eating smaller portions more frequently. I credit my diet and activity level with keeping full blown diabetes away for so long. I mention activity because it is also one of the best gifts I have given myself. Like most people living with dysautonomia, I am exercise intolerant, so I don't say this lightly, movement has been critical for me. Some days/weeks, movement might be limited to lifting my arms in the air for 5 reps each and other times I take walks and garden and am more active than most of my healthy friends my age. But movement of some sort helps me tremendously in controlling diabetes as well as so many other symptoms related to dysautonomia. I've been told by many doctors over the years that fasting is a no-no for diabetes. The 6 meals a day thing is tough to get used to but like everything else we do, it's worth it if it helps us be less symptomatic. I hope you can find the right combo of things to help your symptoms.
  4. edriscoll
    @JennKay Thank you so much for sharing the study. One of DINET's Medical Advisors, who has done extensive research into post-POTS and vaccination wrote this article with associates in response to the latest study. It is worth a read. https://www.nature.com/articles/s44161-022-00180-z
  5. edriscoll
    @KiminOrlando I had COVID in August I have advanced respiratory and cardiac issues in addition to dysautonomia so my doctors were most concerned about my breathing - so was I. However, my breathing was improved with my home oxygen, thankfully. But, the dizziness and fluctuations in HR were extreme. The worse night I literally had to crawl on my hands and knees to get to the bathroom. I went from tachycardia to bradycardia within minutes. My doctors brought me into the ER for IV fluids and for an antibody treatment. I couldn't take the oral meds used for COVID because they interfere with one of my heart meds. My labs also showed my sodium and electrolytes to be way off even though I was still drinking/eating/and ingesting salt as usual. It felt as though the infection caused my body to somehow disregard all that I normally do to stay on top of the dysautonomia symptoms. I was unable to get an accurate BP during the worse of those days but at the ER my BP was very low for me. The good news is that the IV fluids made a huge difference in how I was feeling. The dizziness was back to my normal and the HR fluctuations all but stopped as well. The headaches and fatigue continued for about 2 - 3 weeks, but the worst of it only lasted about 6 days. For the record, I was fully vaccinated and boosted. My doctors all agreed that for me, it was the difference between dealing with the respiratory symptoms with my home oxygen or pneumonia/intubation or worse. I hope you feel better soon.
  6. edriscoll
    @KiminOrlando Thanks so much for passing on the news of the diagnostic code. We posted it to social media and on our home page but I think I'll post it to the forum too so everyone is aware. Thanks so much for sharing. As far as the email campaign, this is a part of the ongoing efforts began by the NIH in 2017 to promote POTS research. If you could please email the link to the form for Senators and Representatives directly to me at ellen.driscoll@dinet.org I would greatly appreciate it. I'd like to take a look before posting. Thanks again for your help.
  7. edriscoll
    DINET is proud to present an opportunity for our members to participate in a research study with one of our Medical Advisors, Dr. Svetlana Blitshteyn, Director of Dysautonomia Clinic / Clinical Associate Professor of Neurology, University at Buffalo Jacobs School of Medicine The purpose of the research is to study sexual dysfunction related to POTS. Women and men are invited to participate. You must be 21 years of age or older and sexually active. The study will include people living with POTS as well as those who do not have POTS for purposes of comparison. To participate please take this survey. https://patientscount.org/sdp This study is sponsored in part by DINET We are very excited to be a part of this study and will share any findings as they are released. If you have any questions, please contact Ellen Driscoll, DINET Board of Directors at ellen.driscoll@dinet.org
  8. edriscoll
    @DysautonmiaMatt It is sad and @Pistol is right about having a doctor as a point person. And it is also true that a PCP is supposed to be the doctor who oversees all and works holistically on your healthcare. However, even the best PCP is limited if the specialist either don't/won't recognize the PCP's role or is just bad at coordination and cooperation. I've found that as a patient I insist on my PCP being in the loop. I have all of my perscriptions going through her and I make sure to always remind the specialist that I want the notes sent to my PCP. They always say "yes, that's standard protocol" and maybe it is, but it seems to work much more smoothly with the reminders. I also have fired doctors from my care who were too arrogant to be a part of a team for my healthcare. It's not easy to do especially when we are feeling poorly, but I find that it all works best when I advocate for the way I want my care approached. Sadly though Matt is absolutely right, the medical system is not setup well to deal with complex conditions. Dysautonomia is complex and multilayered enough but when you consider that the majority of patients have dysautonomia as a secondary condition to things like EDS, MS, Lupus, CFS, etc it makes the care and the coordination very difficult. All the more reason though for a PCP to follow all of it for us.
  9. edriscoll
    The Cleveland Clinic has reliable info about what it is and how it works in general, not specifically to POTS or dysautonomia. It does list dysautonomias as being one of the conditions helped by the device. It is a good reference article into understanding the science behind it. https://my.clevelandclinic.org/health/treatments/17598-vagus-nerve-stimulation-vns
  10. edriscoll
    @Dieteid I'm sorry you have been going through that, it sounds awful. I saw a Physiatrist when I was coming back from a long period in the hospital. A Physiatrist is a medical doctor that specializes in physical medicine and rehabilitation. My Physiatrist was really helpful in working with the Physical therapist on the specific exercises that would benefit my individual condition. Best wishes, be patient with yourself - rehab takes many, many small steps. You'll get there.
  11. edriscoll
    @dlgrn715 the symptoms you describe on a perfect description of a regular issue for me. I bring my granddaughter to the supermarket to do most of the bending for me. It is difficult. Other than the normal recommendations for hydration and sodium, I was taught to improve my O2 by taking a deep breath through the nose before bending, then exhale through pursed lips while bending to pick something up. This has really helped with quick bends, like grabbing a shoe but I doubt it would do much for housework. But every little bit helps. @RecipeForDisaster I also have issues with anything that uses my arms too much, especially over my head. It lets me out of washing windows, which I like, but it makes it really difficult to wash my hair in the shower. I describe the "feeling bad" symptoms as feeling like a power tool that is slowly wearing its battery down as I go through the day. Not all days, but many. All of these things are common for people living with different forms of dysautonomia Best wishes for all.
  12. edriscoll
    @Dyphonyx Hi Matt - welcome. I'm so glad you decided to join and share your journey. It can be very difficult to find physicians who specialize in treating dysautonomia/POTS. And there are commonly longer waiting lists to see a specialist than an ordinary doctor. If your PCP thinks it would be helpful to see an Electrophysiologist then I would consider it. Electrophysiologists are common recommendations for many forms of dysautonomia so it may be helpful to you. If nothing else, they may be able to provide additional information that will be helpful to your PCP or a specialist should you decide to pursue that avenue. The Electrophysiologist may be able to help you find a POTS specialist if they feel you need more help than they can give. I hope you continue to use the forum. It can be very helpful for connecting to people who understand what you are going through. Best wishes.
  13. edriscoll
    @Matt78 I'm so happy you are on the other side of your recovery but so sorry you were so very ill. You don't mention if you are having any symptoms when your HR rises or if you are experiencing any other symptoms post infection. But it sounds as though the metoprolol was doing its job to keep your HR at a lower range. Even a low dose serves a purpose so if your doctor has prescribed it at a low dose for the near future, I would stick with it. You are correct that when coming off any medication there can sometimes be a "bounce-back" effect, meaning symptoms seem to increase temporarily for a short period of time before levelling out. For example, prednisone can be used for inflammatory conditions but for some patients the inflammation can go back up for a short time when coming off the drug. In your case though, I would stick to the treatment your doctor is recommending. Your body went through a very traumatic event, try and be patient and give your body lots of time to heal. We are happy to have you here, best of luck for continued healing.
  14. edriscoll
    by Ellen Driscoll POTS has been receiving an increase in attention in both the media and the medical field as a result of COVID-19 infections. For many patients, illness continues long after they have come through the COVID infection. This syndrome is commonly referred to as Long COVID or the patients experiencing this are called "Long Haulers". For many people, the after effects of illness or the long haul occurs months after the initial infection has resolved. In a recent study by Dr. Svetlana Blitshteyn of the Dysautonomia Clinic, 6 to 8 months after COVID-19 infection, patients developed residual autonomic symptoms debilitating enough to prevent a return to work. (1) What is not known is if a history of mild autonomic dysfunction or other markers that are common triggers for autonomic dysfunction such as concussion may be risk factors for developing post-COVID autonomic disorders. (1) In a recent survey published in eClinical Medicine, almost half (43.4%) of their respondents developed at least one post COVID condition, and almost 3/4 (72%) of those patients reported symptoms suggesting POTS as a secondary disorder post infection (2). The symptoms, post illness, continuing for 3 to 6 months as part of the diagnostic criteria. A Mayo Clinic Study found 80% of long-haulers living with "persistent fatigue" and half living with "brain fog" (5). The Mayo Clinic's CARP program (COVID-19 Activity Rehabilitation Program) reports 59% of patients with respiratory complaints and one-third of long-haulers reported being unable to perform daily tasks associated with managing day-to-day life (5) The prevalence of POTS was documented in an international survey of 3,762 long-COVID patients, leading researchers to conclude that all COVID patients who have rapid heartbeat, dizziness, brain fog or fatigue “should be screened for POTS.” according to Dr. Peter Rowe, John Hopkins.(8) Another common condition tied to the after effects of COVID-19 is ME (CFS) (2) or Chronic Fatigue Syndrome. Dr. Rowe has treated both POTS and CFS patients for over 25 years and said every doctor with expertise in POTS is seeing long-haul COVID patients with POTS, and every long-COVID patient he has seen with CFS also had POTS. (8) For physicians, diagnosing these complex conditions can be made more difficult by the fact that ME and POTS can have many over lapping symptoms. The treatment for POTS can be complicated given the multisystem effect the disorder has on the body. Research from John Hopkins suggests that it is not only acute COVID infections that are resulting in long lasting symptoms, citing patients with mild COVID illness also reporting signs of possible ANS dysfunction that may suggest POTS.(6) What is less known is how long these post-COVID illnesses may last. According to Dr. Svetlana Blitshteyn of the Dysautonomia Clinic, the claim that patients can outgrow POTS is unrealistic. She says "my go-to answer is we don't know if/when you'll recover, but you'll feel better with the right treatment." (7) For people living with POTS before becoming infected with COVID-19, POTS symptoms may temporarily worsen (6). However, there is no evidence to date that there are permanent effects on the ANS or the progression of the disorder. Treatment for Post COVID POTS is similar to POTS treatment unrelated to COVID. Frequently a pharmacological approach combined with life-style alterations and exercise, as tolerated, gives the patient the most long-lasting benefits.(6) However, in both acute COVID illness and mild illness, physical therapy and/or rehabilitation may be necessary to help with reconditioning due to the multisystem involvement caused by COVID.(6) Each patient should have an individual treatment plan developed and monitored by a physician knowledgeable about POTS and ANS function to be the most effective. Complicating treatment is that the number of physicians familiar with the diagnosis and treatment of POTS is insufficient for the numbers of new cases of Post COVID POTS (4) Dr. Rowe says he expects the lack of medical treatment to worsen. (8) The waiting lists for specialists in ANS dysfunction can be 6 - 12 months or longer and the multi-disciplinary approach necessary for the treatment of POTS is rarely available in clinics where appointments may be open. In an American Autonomic Society article addressing these concerns, Dr. Satish Raj and associates comments "These patients have complicated medical conditions that will require longer visits and more allied health care personnel (including nurses, physiotherapists and psychologists) to deliver the needed care. In other words, it will not be possible to address the needs of this population without a commitment not just from the providers, but also hospitals and medical center administration." (4) Although the mechanism causing Post COVID POTS is unknown, recent findings suggests inflammatory, auto-immune responses and the generation of auto-antibodies to be at play (3) It is postulated that the cytokine storm from the COVID-19 infection results in sympathetic dysregulation, causing the abnormal autonomic response in POTS (3) Further studies are needed to determine whether post-COVID-19 autonomic disorders are rooted in autoimmunity and what type of antibodies or cytokines may be mediating the autoimmune and/or inflammatory process.(1) Congress has allotted 1.5 billion in funding to the National Institute of Health over the next four years to study post-COVID conditions (4). The light at the end of the devastation caused by COVID-19 may be the awareness it is bringing to some of the less familiar, yet debilitating illnesses like POTS and CFS into the forefront of the medical community. To learn more about COVID-19, watch Dr. Blitshteyn's video Resources and References 1. Postural Orthostatic Tachycardia Syndrome (POTS) and other autonomic disorders after COVID infection: a case series of 20 patients, Dr. Svetlana Blitshteyn and Sera Whitelaw https://link.springer.com/article/10.1007/s12026-021-09185-5 2. Characterizing long-COVID in an international cohort: seven months of symptoms and their impact. https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/fulltext#seccesectitle0048 3. Management of Long-COVID and Postural Orthostatic Tachycardia Syndrome with Enhanced External Counterpulsation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8555928/ 4. American Autonomic Society Long COVID-19 and Postural Orthostatic Tachycardia Syndrome: An American Autonomic Society Statement (with Dr. Satish Raj) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7976723/ 5. Post-COVID-19 Syndrome (Long Haul Syndrome): Description of a multidisciplinary clinic at Mayo Clinic and characteristics of the initial patient cohort https://www.mayoclinicproceedings.org/article/S0025-6196(21)00356-6/fulltext 6. COVID-19 and POTS: Is there a link? https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/covid19-and-pots-is-there-a-link 7. @dysclinic Twitter, S. Blitshetyn MD, Dysautonomia Clinic #longCovid 8. Little known illnesses turning up in COVID long-haulers https://khn.org/news/article/covid-long-haul-illness-pots-autonomic-disorder/
  15. edriscoll
    Fainting or coming close to fainting is one of the very common symptoms of POTS and other forms of dysautonomia. If you have experienced it, it is frightening and extremely debilitating when it is happening on a regular basis. DINET has produced an excellent video about the difference between syncope and presyncope. https://youtu.be/M6MOn0vkVnA The American College of Cardiology produced an excellent graphic to show how common syncope is in the general population Infographic+Syncope.pdf
  16. edriscoll
    @AngieP Hello Angie, thank you for posting your question and for everyone who has been participating in this and other threads about this subject. It can be very confusing and can be a difficult decision to make for many people. My personal experience was a very mild reaction. My first Pfizer dose caused a great deal of fatigue, headache with no arm pain at all. I felt that way for about 2 days, then fine afterwards. My 2nd dose caused severe arm pain and a fairly nasty headache that lasted a day or so. I did follow with an increase of dizziness and I was more tachy than usual. The booster had no side effects at all. It is always advisable to consult your PCP or the specialist that treats you for dysautonomia before making a decision about any new medication or treatments. However, the official view of dysautonomia specialists mirrors that of Jyoti's doctors - there may be side effects but they will dwarf what the COVID virus can do to you. If you haven't yet watched the video by Dr. Blitshteyn (Director of the Dysautonomia Clinic, a leading dysautonomia researcher and specialist and medical advisor to DINET) about COVID, she gives a very clear overview of why it is so vital to be vaccinated. As a representative of DINET, I sought out the counsel of several leading physicians just this week to discuss the Omicron variant and the current spike. My question was this - "Our local hospital is reporting 60% of severe illness in people who are not vaccinated. That leaves 40% of patients with severe illness as people who are vaccinated. Does this mean that vaccines are no longer working and are not as important now?" Here are the facts. Omicron is getting a lot of press right now because it is highly contagious and because it is causing record numbers of positive cases. However, it is important to remember that Delta is still a threat and that alone should lead people who are not vaccinated to get vaccinated (and boostered) as soon as possible. The major difference between Delta and Omicron is that Delta directly attacks the respiratory system and multiplies quickly. Omicron attacks the throat, upper bronchials and sinuses. This had led many people into believing that Omicron poses a similar threat as the common cold when it comes to causing severe illness. This is not at all true. Omicron clearly can and does cause serious illness in some people as is evident in the current numbers of hospitalized people. Last check, the common cold does not cause this type of spike in hospitalizations. The other difference between Omicron and Delta is that the current vaccinations with booster - is highly effective in preventing the Delta variant. The vaccines are not as effective in preventing Omicron. Mainly because Omicron was not in existence when the vaccines were developed. Without going into the scientific explanations for how vaccines work and how variants come to be, lets just sum it up by saying that until we have the majority of the population vaccinated, we will continue to see variants that can breakthrough whatever the current vaccine is, most probably. So the next part of the question is why get vaccinated then? Here is the truth, most important, the Delta variant is still alive and out there and without a vaccine, Delta causes severe illness and death. That's the bottom line. The next important fact is that although Omicron is breaking through the vaccine, particularly in people who have not yet been boostered, the fact remains that vaccinated people are showing less severe illness when they are infected. And the contagion rate being as high as it is with Omicron means that if you are walking down the street with 4 people, chances are high that at least one of them has COVID. The reason that needs to factor in to your decision about vaccines is to remember how this all works - viral load and exposure. So with the vaccine you should develop antibodies to the virus. These antibodies give you protection. However when the numbers of people with the virus starts to climb as high as it is now, that means that even your antibodies can be outnumbered by the amount of viral load you are exposed to. Which also explains why it is so very important to continue to wear a good mask (N95 or KN95 if possible or double mask) and avoid being in public places where you can maintain a distance from people and wash your hands. Personally, as a high risk person as a result of a heart and pulmonary disorder, I have been advised to go back to my pre-vaccination rules by my doctor - avoid public places, have family and friends wear a mask and remain outdoors or in our garage OR rapid testing before entering our home - at least for the next 6 - 8 weeks until the numbers start to recede. Again, the idea being waiting until the overall viral load is diminished in the community. Lastly, even though Omicron doesn't cause the rapid health decline and severe illness as quickly as Delta does, it still carries a great deal of risk. COVID of any variant can cause post-COVID pneumonia, inflammatory illness and a whole host of delayed illness. This is especially true for the illnesses we are now seeing in our kids. COVID is a virus that has long lasting effects for many people. And many of those effects are related to auto-immune responses. Given that many of us in the dysautonomia community have auto-immune disorders, many more have other pre-existing conditions and all of us struggle with a wide variety of symptoms and health issues on our best days, it only seems prudent to do whatever we can to prevent additional illness. It is also why the medical community is telling us that regardless of any possible increase in POTS symptoms or other post vaccine symptoms, it is still considered the best choice to make. That's why the official word on behalf of DINET is to get vaccinated as long as there is no specific recommendation against it from your doctors. Please watch Dr. Blitshteyn's video about COVID and learn more about how it can effect dysautonomia patients. https://www.youtube.com/watch?v=JI_c95dvg0w I know this is a long post, but I want everyone to be able to hear the science behind our decision to recommend vaccination regardless of possible side effects unless specifically advised against it by your personal physician. All the best.
  17. edriscoll
    According to Dr. Blitshetyn, one of the top dysautonomia specialists in the country, and a physician who is a specialist in immune suppressed patients from Dartmouth Medical Center, the vaccine prevents severe illness in most patients who are exposed to COVID. Keep in mind that although Omicron has less severe symptoms than other variants, that does not necessarily translate to it being milder in high-risk patients (specifically cardiac and pulmonary) and immune suppressed patients. Without vaccinations and booster, those populations are still at very high risk for severe illness. Many immune suppressed patients are requiring a 3rd shot, not a booster, because they are not necessarily developing the antibodies necessary to fight severe illness during the 1st and 2nd shots. Bottom line, regardless of the variant, vaccines protect against severe illness. The other side of this coin is that without a higher rate of vaccination in this country, we can expect continued variants to emerge. Omicron, thankfully is milder, but who knows what the next variant will bring. Not to mention, that the other strains are still out there. No one should assume that they will get the milder strain. For more info and the science behind DINET's position on the vaccine specific to dysautonomia patients, please watch the video by Dr. Blitshetyn - "COVID19 and Dysautonomia" And @lattegirl I am so sorry you are experiencing such debilitating symptoms. When having a reaction to the vaccine, it's important to separate the reaction to the vaccine itself vs a possible flare set off because of activity in your immune system. That severe a reaction to the vaccine with those symptoms for that length of time is extremely unusual. But it is not unusual for flares to be caused by changes in our immune system, and many times we don't know what sets off a flare. A flare, as we all know, can last a long time. However, regardless of what set off a flare, after this length of time the flare needs to be treated. Have you consulted the doctor who treats you for dysautonomia or your PCP? I would not assume that what you are going through now is a reaction to the booster without being told that by a doctor. You may have something else going on that requires treatment. And if a doctor told you this is a booster reaction, side effect, they should be following you closely to see why you are still experiencing such a drastic set of symptoms this far out from the shot. Best wishes that you start feeling better soon.
  18. edriscoll
    Gabapentin has been a life saver for me. I had nerve pain that was debilitating and Gabapentin has made those symptoms manageable. Coincidentally, I too had a terrible reaction to Cymbalta. It affected my equilibrium to the point where I couldn't walk. It was awful. With Gabapentin, in my experience, it took time to acclimate to the medication. It made me feel very tired and sometimes affected my dreams and sleep in general. However, it went away as my body got used to the medication. I stopped taking it in the morning to minimize the fatigue. Taking it during the day (after lunch) and before bed works well for me. My husband was recently prescribed gabapentin also and has had a similar experience. He started taking it in July, with good results, but experienced the same fatigue and dream disturbances. Those side effects resolved around November. Best of luck.
  19. edriscoll
    @MikeO You were very lucky indeed to find an RN that took you seriously and referred you to a doctor willing to listen. I think this all comes down to the same two issues - communication and collaboration. A doctor that dismisses a patient or dismisses symptoms is a doctor that should be dismissed! But a doctor who is willing to collaborate on your behalf and trust the patient when they report a symptom is a good physician, even if they don't know all they could about whatever the illness is. Knowledge can always be gained but it does require a willingness on the part of the doctor and the patient. My husband recently went through a long medical ordeal. He became disoriented and paranoid after his sodium level dropped. I had been through this with him before and knew that he was very sensitive to these drops in sodium levels. What is "not that low" for some is very low for him. When I reported it to the team, the doctor began shaking his head "no" before I even finished my sentence. He immediately said "that's not low enough to cause this reaction" To make a long story short, I had to contact a different doctor who knew us both very well, who immediately said to me "I'll trust your instincts" and started a saline drip. His symptoms improved within a few hours. When I saw the dismissive doctor the next day, he said "I learned something. I never would have thought that small a shift could produce that reaction" I replied "what you really learned was that sometimes it's worth listening to the patient and caregivers" He said "well put". To this doctor's credit, he was able to put his ego aside and realize that he had not given good medical care because he made assumptions instead of listening. If more doctors would do that, patient outcomes would improve. I'm very glad that you were helped and it is difficult to know what is dysautonomia and what is something else and what is normal aging. But that is difficult for all of us, including our doctors. The last session is our series "Collaborating for Better Patient Outcomes" is a roundtable discussion with a few people from various parts of the medical system and a few DINET members to discuss many of these topics. How do we educate? How do we encourage collaboration? How do we communicate and advocate for ourselves and within the system? and more. That session will premiere on 11/2 I'm excited to see some of the conversations we can spark between all of us. Have a great weekend.
  20. edriscoll
    @MikeO and Pistol I agree and the other side to this discussion is that my PCP treats me but also refers me when there is a symptom that just doesn't seem quite right. An example is when my shortness of breath was getting worse. I was blaming it on dysautonomia and the expected dyspnea with exertion. She noticed that my lung function was deteriorating, which is unusual with dysautonomia. She sent me to a specialist and I was diagnosed with Pulmonary Arterial Hypotension. The symptoms are very closely related to dysautonomia in many ways. If she had attributed my symptoms to dysautonomia only, I would not have received the life saving treatment that I needed. My point is that a good physician needs to regularly assess your symptoms and be attentive enough to send you elsewhere when a different specialist is needed. They also need to be able to put their own ego aside enough to recognize that they can't always be the only answer for us. Without that, serious medical issues can be overlooked - gastric issues, heart issues, etc. Sometimes being referred can be just as important as a doctor who treats all our symptoms.
  21. edriscoll
    @MTRJ75 That is an excellent question. We plan to include your question in our roundtable discussion with medical professionals coming up on November 2nd. As Pistol wrote, it does make sense that it would be overwhelming for many primary care doctors. During our session with Dr. Raj he talks about the treatment of the various symptoms that come with POTS and other forms of dysautonomia. That session will premiere next Tuesday, October 26th I think you'll find that very interesting as well. Thanks again for your question and participation.
  22. edriscoll
    I'm glad you felt the presentation was informative. As to your observation that POTS is more than just becoming tachy when standing - that point has been reinforced now by both presentations. Going back to Dr. Suleman's research that showed that people with POTS live with an average of 32 symptoms each day. There is much more to this disorder than "just" being tachy. It is why this is a complex syndrome that is very difficult to diagnose for the uninformed physician. Not to minimize the tragic results of COVID in any way, but the long-haulers syndrome will hopefully bring more attention, more funding for much needed research and better informed medical communities that will help dysautonomia patients overall. Thank you for your comment and participation in the sessions. Next week will be the session from Dr. Raj one of the leading POTS researchers to speak specifically about management and latest research. Hope you will find that informative as well. Take care.
  23. edriscoll
    The word we have received from our medical advisors here at DINET regarding the vaccination is very much in keeping with what Yogini posted - it is such a new vaccine that there is no data related specifically to the effects on dysautonomia patients. It is a personal choice, but the general consensus is that the common side effects seen with the vaccine are far less medically traumatic than the more severe effects of the virus. Unfortunately there is just too little known about the virus, the vaccine and dysautonomia to give you a definitive answer. Generally the only contraindications for the vaccine are: 1. People younger than 16 years old 2. If you have received COVID antibody or plasma treatment within 90 days of the planned vaccination 3. If you have known allergies to components of the vaccine. You can read about the components at the Vanderbilt University Medical Center site - https://www.vumc.org/coronavirus/known-covid-19-contraindications I'm sorry to say that finding a dysautonomia specialist that would be available for a consultation on short notice would be incredibly difficult, particularly to a new patient. One of our medical advisors, Dr. Blitshteyn at The Dysautonomia Clinic has been following the effects of COVID and is conducting a survey related to the virus. The Rare Disease Clinical Research Network is also conducting a survey related to chronic illness and the effects of COVID. But I don't know of any organizations that are tracking the effects of the vaccine. My personal experience after having both rounds of the Pfizer vaccine was fair. I didn't have any serious reactions. I was incredibly tired for about 24 hours after both. I had very little soreness in my arm, but I did have a headache that was unresponsive to medication and lasted for about 24 hours. I have had a bout of inflammation/edema throughout my body that developed within days of the second vaccine. There is no way of knowing whether this is related to the vaccine or not because I do have issues with edema from time to time. So it may be purely coincidental. But I mention this to make a general point about vaccines. I have experienced flare ups of inflammation and other symptoms after having flu vaccines. There is never proof that the flare is directly tied to the flu vaccine, but I believe it may be because it happens every time I receive one. I also have flares after colds and other viruses, which is a fairly common occurrence for people living with dysautonomia. The people at the highest risk with COVID are people with diminished function of the heart, lungs and kidneys, whether due to illness or age. It has been very difficult for people with serious chronic illnesses to understand why they would not be considered high risk. But the high risk potential is based on the health of the person's organs - not the seriousness of the pre-existing condition. That's why the ranking of a person's risk is made individually by their physician. I don't know if you had your 1st vaccine because of your occupation, age, or because you were considered high risk by your physician. If your doctor considers you a high risk for COVID, then that should be an important factor in your decision whether or not to get the 2nd dose. I discussed my options with my PCP and my cardiologist. Both my physicians felt I was at far greater risk for serious illness if exposed to COVID than any reaction to the vaccine including a dysautonomia flare. So for me the choice was a simple one regardless of any side effects I may have had to endure. I believe you would be better off speaking with a physician that knows your medical history than you would be a specialist that may be able to share data but not help you weigh the risk/benefit of the vaccine for you personally. I wish you the very best.
  24. edriscoll
    Interview by Chelsea Goldstein for Dysautonomia Information Network Hi! My name is Savannah and I am 26 years old. I have Postural Orthostatic Tachycardia Syndrome (POTS). I also have Ehlers Danlos Syndrome (EDS), Gastroparesis, Trigeminal Neuralgia, Vocal Cord Dysfunction, and dermatographia. I love to read, paint, knit, color, sing, and pretty much anything else that could be a creative outlet. I accomplished my dream of becoming a nurse, but dysautonomia took that from me. I’m currently an LPN, and I hope for a cure one day so that I can become an RN in labor and delivery. Until then, I work on fulfilling my dream of helping others by spreading awareness of my conditions. At left: Savannah smiling with the bicep pose When were you diagnosed with dysautonomia? I was 21, and it took a little over a year to be diagnosed with dysautonomia because I was sent on a wild goose chase of visiting different doctors, multiple tests, and random symptoms. The diagnosis was relatively quick once I was finally sent to neurology – I believe it was less than a week. Did you have any early signs of dysautonomia before you were diagnosed? I’ve had symptoms my entire life, especially dizziness, headaches, fatigue, blacking out, palpitations, chest pain, and shortness of breath. It definitely got worse after I graduated college and started my nursing job. Did you experience any barriers during your diagnostic process? Yes. My symptoms were always associated with being a dramatic teenage girl. When they got worse after college, doctors didn’t believe me, my boss didn’t believe me, and it even got to the point where my family was questioning whether it was all in my head. Getting my diagnosis was such a relief because even I was starting to believe that maybe I WAS “going crazy.” I started to think that maybe it was anxiety and depression that was causing my symptoms, BUT I fought and fought and I’m so glad that I stuck with my gut. What were your initial reactions when you were diagnosed? I had never heard of dysautonomia before, even being a nurse. I was confused, but so relieved I had a diagnosis to finally make sense of everything I was going through! At right: Savannah lying down with her legs elevated What else would you like to share about your diagnostic process? It is SO important to trust your gut. Your body will let you know that something is wrong, and don’t take no for an answer. You must be your own advocate sometimes, and it is important to remember that no one knows your body better than you do! Write down your symptoms and keep a log of everything you can. It will come in handy. At left: Savannah in a hospital bed What do you do to manage your dysautonomia on a daily basis? I now see an electrophysiologist who helps manage my symptoms, and they prescribed propranolol (a beta blocker) that helps control my heart rate. I also receive saline infusions twice a week and it helps some! With my gastroparesis I can’t drink plain water, so the infusions help both the POTS and gastroparesis. I also have increased my salt intake, try to take everything slow, rest when I need to (including napping because I absolutely crash in the afternoons), avoid eating big meals, and try to avoid things that may possibly trigger fainting episodes. Even still, I’m not always lucky enough to avoid them. What is the most difficult aspect of living with dysautonomia? Probably the unknown. You never know what is going to happen next with your symptoms, and you must try your best to be as well prepared as possible. Has living with dysautonomia changed your perspective in any way? Absolutely. I don’t take anything for granted now, and I make sure to take time to appreciate all the little things. “Stop and smell the roses” has a new meaning and approach for me. My good days are fantastic, although few and far between, and I take my time to just enjoy doing anything. Getting out of the house now is a big “to do” and before it felt like a chore. At right: Savannah resting with her cat Have you learned anything else from living with dysautonomia? To expect the unexpected. When you’re healthy and you don't have to worry about what tomorrow brings in terms of your health, you don't necessarily feel like there is going to be anything unexpected. When you are living with a chronic illness you must remember that just because you had a good day today, it doesn't mean that you are going to have another good day tomorrow. If you could give fellow Spoonies one piece of advice, what would it be? You must be an advocate for yourself. It's always great to have supportive family and friends but you must be willing to stand up for yourself and your health to get the results, diagnoses, medications, therapies, and anything else you may need to be able to function. This will be a never-ending fight and you must be prepared to be a warrior and fight for yourself! Remember that you are worth fighting for. Have patience, you’ll need it. Try to stay positive. It’s okay to have days when you break down, but the next day stand back up (slowly, because dysautonomia!) and face the day with a new outlook and attitude. We got dys! Encourage people to learn. Spread awareness. Most importantly, take things one day at a time and don’t be afraid to ask for help! At left: Savannah showing her port If you could change one thing about the way people perceive dysautonomia, disability, and other chronic health conditions, what would it be? I wish that others would be willing to learn more about chronic health conditions and disabilities. I also wish that they would take a minute to think about if the circumstances were different - what if they were the ones suffering from the same things that we do? It really is a battle and I don't think that people understand how much we fight. Do you have a favorite quote, song, movie, or book that has helped you? “You have been assigned this mountain so you can show others it can be moved.” “Dying is easy, young man, living is harder.” -Hamilton. I have never heard truer words!
  25. edriscoll
    https://sci-hub.se/10.1007/978-3-030-54165-1
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