edriscoll

About a year ago, DINET had the opportunity to co-fund a research project being done by Dr. Svetlana Blitshteyn related to sexual dysfunction and POTS.  Some of you may have even participated in the study or the initial questionnaires.  The study has been completed and is now published.

Sincere thanks to all of you who responded to the questionnaire or took an interest in the study. It is a piece of research that, in my opinion, deserves further focus.

Here is the link to the full research - https://www.mdpi.com/2077-0383/13/8/2274  

There are so many worthwhile studies related to POTS and other forms of dysautonomia.  This particular study was so important because sexual dysfunction is a symptom that is not discussed but is certainly one that affects mental health, family relationships as well as physical health.  It is another part of life that this disorder impacts and it needs to be included in diagnostic evaluation and treatment going forward.  

We hope to be able to participate in more studies like this one and we hope you agree that it is worthwhile way for DINET to continue to support the dysautonomia community. 

As always, we love hearing your thoughts.

@JimL  Agreed.  This is such a highly individual issue.  So many other things factor into the results.  Regarding dysautonomia specifically, I can see why exposure in high degrees could potentially have an impact on the nervous system.  But, again, like all things with dysautonomia, the treatment is very individualized.  So all of this data needs to be incorporated with all the other things affecting a person's health.  

@JimL I know it was a while ago that you made this comment, but I just saw it now - Applause for the "Chuck McGill" reference.  Love it!

Dear Member,

Perhaps you have emailed or PM'd DINET with a question or you use the forum to connect with other people living with dysautonomia.  I hope the information has helped you in some way.  We are all here to try and make this all a bit easier.

Today is Giving Tuesday the day that jump-starts the giving season for charities.  I'm reaching out to ask you to please donate to DINET.  Do you remember how important it was to you to be able to find someone available to answer questions, share experiences, and give you support when you needed it?  It is so important that our work continues for you and the other people living with this illness.  DINET is a nonprofit, run on the dedication of our volunteers - all of whom have dysautonomia too.

But the website, the forum, the videos, presentations, and research all take funding.  And this is a critical time for DINET.

In years passed we have relied on grants and other forms of funding so that we didn't need to ask for money from the people we support. However, current funding streams are being awarded to large organizations and large research projects, not to grassroots groups focused on day-to-day patient and caregiver support, like DINET.  But as you know, the work we do is just as important.

We know money is tight for everyone and you are most certainly dealing with medical bills and medication costs.  But whatever you can spare helps and if you can't donate, ask the people around you to in your name.  Tell them how hard this small charity works to help people like you and how little support we have to do it.  We want to continue to be there for you and the next person in need.  But we need your help to do that. We wouldn't ask if we didn’t have to. 

Please donate today. https://www.paypal.com/us/fundraiser/charity/1552351

Thank you for your time,

Ellen Driscoll, President Board of Directors, DINET

Donations are tax-deductible and 100% of funds raised go directly to programs and projects that support and educate patients and the medical community.  

@RecipeForDisaster  There is a great article full of helpful gadgets and tools that can be really helpful https://www.dinet.org/content/living-with-dysautonomia/technology-education/optimized-living/    The article is a couple of years old but it's easy to find updated forms of the tools mentioned.  

Tune in to share the stories from people living with dysautonomia.  Hear about their journey to diagnosis and how they are managing since.  You are guaranteed to hear experiences that you share with others.  Join us for the premiere on 10/26 at 1 pm to chat live with other people living with dysautonomia..  If you can't make the premiere, you can catch the video later on.  The video will remain available after that date.

https://www.youtube.com/channel/UCUZMfU6I2622J6Fv50oFaiQ

Join DINET on our YouTube channel for a two-part discussion on Mental Health & Chronic Illness.  We are joined by two therapists who not only have years of experience in the field of Mental Health, but they are also caregivers to family members living with chronic illness.  A must-see for all of us dealing with the ups and downs of living with this disorder and a must-see for caregivers dedicated to helping us along our way.

Part 1 of this series is available beginning 10/12 - 

  Part 2 of the series will premiere 10/19 and will remain available after the discussion closes. 

DINET Dyscussion's video on our YouTube channel - POTS Subtypes with our very own, Susanne Rimm, RN 

Susanne discusses the Autonomic Nervous System, how it works and the effects when it dysfunctions.  Learn about the 3 recognized subtypes of POTS, how they are similar and how they differ, as well as the treatment approaches of each.

Susanne does a tremendous job of explaining the complex systems using real world analogies.  There is much to learn from this whether you have POTS or another from of dysautonomia.

Available now. 

@MikeO  That looks great!  I have an instant Pot and I love it.  Especially in the summer when I really don't want to heat up the kitchen.  But I never thought of making eggs in them.  What a great idea.  My husband can't stand the smell of hard boiled eggs, but I have discovered that my pot works great outside on my deck under our umbrella.  So your idea is pure genius.  Thank you so much for sharing.

It is, unfortunately, very common to have to sort through doctors to find the right fit.  As @Pistol said "kiss a few frogs.."  And I think it is true more so when you have an illness that is both complex and difficult to treat.  Many doctors are result driven.  They want to diagnose, treat and have success.  Of course, that's what we want too, the difference is that we are the ones living with the results when there is not the successful outcome we all wish for.  

I have found that it can go a long way with a doctor to let them know that you aren't expecting them to know everything.  That all we are asking for is a doctor that is willing to learn with us.  Because there is no one size fits all treatment for any form of dysautonomia.  

I weed through doctors very easily by their response to information I bring to them.  Example - before I was diagnosed, I was put on Cymbalta by my PCP to help with pain from spinal fusion surgeries.  I had a hideous reaction.  I couldn't lift my head without being so dizzy that I came close to fainting.  I was taken off the drug but my PCP was surprised by my body's reaction to the med since it wasn't listed anywhere to be a side effect or known reaction.  We ended up chalking it off to some sort of weirdness and I started listing Cymbalta under allergies on my medical forms.  Two years later when I was finally diagnosed with some form of dysautonomia, I brought info with me for my next visit with my PCP.  It was an article about SNRI's and the effect of that classification of drug on dysautonomia.  She was more than happy to revisit the topic.  She read the article, asked if she could keep and thanked me for the info.  Now, that's a keeper.

Keep firing those frogs until you find the Prince, or Princess. The good ones are out there.

I haven't come across what you are asking about.  But it sounds like two separate things that I have read about and experienced.  The first, as you mentioned relating to the decrease of blood pressure when standing (OI) and the blood pooling in the lower extremities.  But separate from that, I have had discussions with my doctors about the "leaking" of capillaries into surrounding tissue that can cause swelling in the extremities.  I haven't read or heard anything about this "leaking" or squeezing of capillary blood being related to blood volume upon standing or related to OI/dysautonomia.  I do love the imagery of oatmeal squeezing through panty hose.  

Very interesting article.  Thanks for sharing. 

@Nymph  Low oxygen can be related to many things.  Most common with dysautonomia/POTS is shortness of breath with exercise.  It usually returns to normal ranges while resting.  I have dysautonomia related to damage to my thoracic spine.  I had shortness of breath with exercise so all of my doctors believed it to be related to dysautonomia.  However, the shortness of breath increased over time.  That is not common with dysautonomia.  In my case, it turned out to be a relatively rare condition related to the arteries in my lungs and I was able to get the right treatment.  But my treatment was delayed for more than a year because the assumption was made that it must be caused by the dysautonomia.  My point is that it can be dangerous to attribute all of our symptoms to dysautonomia.  I think it is a good idea to have your doctor check you out and rule out any breathing issues.  There are many tests that a doctor can do to see if you have any lung issues - and none of them are painful.  If your doctor can't explain your issues, ask to be referred to a pulmonologist.  Keep us posted and best of luck.

@gertie  I can understand your confusion, especially since there is so much conflicting information and because what should have remained a medical issue became a political one so early on.  

I agree with @Pistol about the mask controversy.  How can masks not help somewhat?  I believe the push to get people to wear masks gave some people anger about being told what to do and others a false sense of protection.  But that doesn't mean that they didn't and would continue to cut down some of the viral load you are exposed to.  And that is the big point that people forget - viral load is everything.  The number of viral particles you absorb into your system can be the difference between what your immune system can handle or not.  And that's where the vaccination conversation comes in.  Vaccines were never expected to prevent COVID, any more than they can prevent flu.  That is a very misunderstood point too.  Just like with the flu, there are different strains and changing varieties all the time.  So no vaccine can be expected to ensure that you won't get infected.  But it does give your immune system a fighting chance for a milder infection.  To me, all of this adds up to a matter of how much protection you need and which measures are the healthiest choices for you, both physically and mentally.  Staying isolated completely is the only true way to avoid all risks, but that isn't healthy or practical.  So get vaccinated if you can, wear a mask in crowded situations, and keep your immune system in the best shape it can be in long before you become sick. All these measures seem to be the smart way to go regardless of what type of virus is out there, especially for all of us already living with auto-immune issues and dysautonomia.

I really applaud you for asking these questions and looking for solid information.  We have a series of articles pertaining to COVID and Long-COVID on our site: 
https://www.dinet.org/info/longcovid/

DINET is participating in the Long COVID Alliance, a group of over 140 non-profits, medical researchers and physicians working to help the 23 million people experiencing symptoms long after the original COVID virus is gone.  Long-COVID is no joke either, affecting 10-20% of patients after COVID, in many cases debilitating and long-lasting symptoms that have yet to resolve themselves.  The latest research shows Long-COVID affects people with mild infections as well as those with serious illnesses.   For anyone struggling with the after-effects of COVID infection, visit https://longcovidalliance.org/home/about-us/

@Stardust  We have all been where you are right now and you have taken some really important steps already in self-care; reaching out to others for help and doing your own reading and learning.  But you still need a doctor and the correct testing.  There is so much great information on this thread already so I won't repeat it all.  But I will add that our YouTube channel has many great original videos about the diagnosis process and finding good care.  This video is about the struggle in finding a doctor and how to advocate for yourself.  It may be helpful to you.  I wish you the best of luck.

https://youtu.be/mu2MfJTVD18

This us a Patient-reported outcome study on the effect of dyspnea on the quality of life for people living with dysautonomia  DINET members are encouraged to complete a short survey to participate in this IRB-approved study by the University of North Carolina Pembroke.  Read more about this study on their website or visit their Facebook page for more info. 

@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.  

@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.

@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

@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.

@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. 

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

@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.   

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

@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.

@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.

@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.