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.  

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. 

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. 

@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. 

@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. 

@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.

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. 

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.

Here is the link to the Chronic Corner video by DINET:  

Below is a statement from the Board of Directors of DINET and the Administrator of this forum in response to recent efforts to bring awareness to the many forms of racial inequality and injustice  in our country.   We invite members to join in this discussion, however comments and remarks must be related to the subject of race and healthcare only.  We remind members that we do not allow political discussion or commentary on this forum and any remarks outside the subject of healthcare will be edited or removed.  Thank you.

Quote

"Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane."  - Martin Luther King, Jr. at a convention for the Medical Committee for Human Rights held in Chicago in March of 1966

DINET has always been grounded by the principle of support.  In alignment with our mission of support, we believe Black Lives Matter and support organizations, movements and people working to reduce racism, discrimination, prejudice, violence and systemic injustice in our country and throughout the world.

And, as an organization that believes wholeheartedly in advancing healthcare for our members who live with dysautonomia, we must acknowledge that we have not done a good job recognizing the inequities in healthcare experienced by Black Americans day in and day out, including those who live with dysautonomia. 

We are sorry to our Black members, brothers, and sisters for not joining the conversation sooner.  We are listening.  We will keep educating ourselves.  And, as we continue to work toward our goal of a more equitable healthcare system, we will be conscientious about recognizing the particular healthcare inequities faced by Black Americans. 

Sincerely,
DINET Board of Directors and Administrators

To view links and resources related to this subject, please visit https://www.dinet.org/info/dysautonomia-disorders-diagnostics-info/racial-disparity-and-healthcare-r237/

@Starrynight  I am so glad that you found us!  Your story is so typical of so many of us with dysautonomia.  I read a portion of your post out-loud to my husband and after every few sentences said "that sounds just like what you went through".   My PCP suggested POTS to me and gave me an article to give to my cardiologist (after I wore heart monitors multiple times) showing only "non-threatening"  rhythm issues.  The cardiologist wouldn't even consider POTS or read the article and handed it back to me while telling my husband to consider a therapist for me.  After choice words from both my husband and me, we walked out and found another doctor.  You are right, we can not diagnose you, but your symptoms are real and any doctor who refuses to seriously consider a disorder so closely mirroring your symptoms should be fired.  The medical system is intimidating and even more so when you feel ill and need them the most.  So it is hard sometimes to remember that they work for you!  As with any one else in your employ, if they aren't listening or following direction, they need to be replaced.  

@Pistol has given you excellent advice on how to proceed and how to (hopefully) manage your symptoms.  I would add a couple of things - sometimes doctors are not familiar with the term dysautonomia, some are more familiar with POTS.  But they all are familiar with the autonomic system and the symptoms caused when it isn't working correctly.  Sometimes, you can get further if you can find a common terms to use for discussion.  Don't give up on a doctor because they haven't heard of dysautonomia or POTS.   They can still be a great ally

I ran into a hiccup when I finally found a cardiologist familiar with POTS who ordered my first TTT.   It was negative.  Luckily, the cardiologist was convinced from my symptoms and discussions with my PCP, that something was going on with my autonomic system.  So even though I didn't fit the diagnostic criteria for POTS, I fit the symptoms for some form of autonomic dysfunction (dysautonomia).  I was referred to a neurologist who had experience in autonomic issues and have been successfully managed since then.   I add this because the MOST important thing is finding a doctor who believes you and is willing to partner with you.  If you have a good relationship with your PCP, they can be extremely valuable in helping you find the right fit for treatment.  My PCP believed in me and trusted my judgement, so she sent a letter of introduction to each new doctor I've had, explaining what my symptoms are, how real they are and her background with me as a patient.  It is sad to say, but a doctor telling another doctor (in professional terms) this patient is telling the truth, this is not anxiety, depression or mental illness, has saved me a lot of time and frustration.  We shouldn't need to have a doctor vouch for us, but I've found that it has helped save me from multiple visits trying to convince a new doctor that I really am ill. 

I agree with @Pistol completely when she suggests that you keep researching, learning and advocating for yourself.  You have already proven that you have the capacity to be your own detective by finding our site and forum.  Keep reaching out for help and guidance and especially support.  It is a very difficult illness for people to understand because like with so many other "invisible illnesses", you can look great, seem great much of the time.  You can look wonderful even when your symptoms are at their worst.  And the fatigue that comes with dysautonomia is a hard symptom for family and friends to understand too.   I hope you will post again and reach out when you need support.  You are not alone in this.  Best of luck in finding a doctor or getting tested and let us know how you are doing.      

DINET's VP, Chelsea Goldstein posted this question to the dysautonomia community to see what tips people came up with to explain to the "healthy" world, what  we have discovered during our years of frequent stay-at-home time and isolation.

2020.03 V2 COVID-19 tips_CGoldstein.pdf

On 3/13/2020 at 11:51 AM, toomanyproblems said:

Since I've been thinking about this for a while, I've been honing strategies to minimize exposure from surfaces like leaving my mail in the box for 24 hours and leaving non perishable grocery or other bought items in the hot car for a while before re-touching them to bring inside. You get the drift and can add and modify as needed. We can wash hands and use sanitizer and wipes all we want but if the items we touch after are contaminated we'll just recontaminate our hands. Spread can be minimized by paying attention to what specific items we're handling and touching that are contaminated, thinking of how long they may be contaminated and ways to wait until they are safe.   

A friend of mine gave me a great idea for shopping yesterday.  We live in a very cold area - in fact we are supposed to get 6 inches of snow tomorrow.  So our cars aren't hot and even having the heat on in the car doesn't help because it gets cold so fast.  Her suggestion was to bring gloves with you to the store, preferably disposable gloves.  You can still get disposable gloves at Amazon.  They don't need to be medical gloves, just something to wear over your hands.  Put them on right before you go in the store, throw them away before you get in your car.  Once in the car, use sanitizer and then of course wash your hands thoroughly when you get home.  If you can't get disposable gloves, wear winter gloves through the store.  You would still take them off and put them in a pocket until you get home or better yet, on the floor of your car.  You can wash them when you get home.

Even with gloves, you will still need to wipe down your groceries, etc.  But the idea of the gloves is that they remind you not to touch your face!  They have blue, orange, black colors available and anything colorful will work.  Nothing is 100% naturally, but the main danger is touching your face in public, so anything that helps with that, will, hopefully keep us safe.  Best wishes everyone!

Dr. Blitshteyn, one of the leading specialists in dysautonomia disorders and one of DINET's medical advisors wrote two articles specific for dysautonomia patients and those with chronic illness.  Part 1 - What we should know and Part 2 - What to do now.   These are anxious times and certainly even more stressful for those of us living  with chronic illness, but being prepared, taking precautions and encouraging our close family members to do the same is the best we can do.

We will continue to post information as we receive it.

Many thanks to Dr. Blitshteyn.

-- DINET Board of Directors

It is overwhelming when you are first diagnosed.  But it does get easier over time and you begin to manage your symptoms.  You may want to take a look at a video we produced about POTS  called Changes:  Living with Postural Orthostatic Tachycardia Syndrome.  It includes interviews with patients and specialists.  Understanding the syndrome is half the battle.  

https://www.dinet.org/info/video-living-with-pots/changes-living-with-postural-orthostatic-tachycardia-syndrome-r113/

Best of luck and keep asking questions and talking to other people living with this - it really does help.  Hang in there. 

Just to add a safety note here - since the expected changes in HR and BP can cause syncope or presyncope symptoms, please be sure to have someone with you if you attempt to measure at home, especially the first time you try this.  Fainting suddenly can result in serious injury so please take precautions to have someone available who could lower you to a safe position if you feel faint or become dizzy.

Our quarterly newsletter, Dysautonomia News, has an opening for a writer.  The newsletter covers a variety of lifestyle and medical topics, as well as medical news, a medical Q & A column, research and open studies.  We publish to a large audience of DINET members and  opt-in Facebook followers who receive the edition via email.  The newsletter is very well received drawing consistent "open and read" statistics far above the industry norm, so your articles will reach a wide audience and give you a great opportunity to help others living with dysautonomia.  You do not need to be a professional writer, however, strong writing skills are required.  Please understand that this is not suitable for blog writing, although a writer's personal experiences are frequently included in their articles.  If interested, please take a look at some of our past publications and email webmaster@dinet.org  https://www.dinet.org/info/newsletters/dinet-newsletters-r41/    A writing sample is required to apply.   

#GivingTuesday is an international day that was started to bring attention to nonprofits and their causes; an international day of charitable giving.  DINET relies on donations, big and small and all are important and greatly appreciated.  But just as important to DINET's effectiveness are the stories that we all share about our journey, our experiences with this disorder and the people who help us along the way.  

In honor of #GivingTuesday, please share a story about how DINET or a person you met through DINET has helped you along the way.

I will start with mine.  When it was first suggested that I may have something called "autonomic dysfunction", I began searching for anything that I could find on the  subject.  That was my introduction to DINET and many other organizations with a LOT of medical information.  I was frightened, very ill and very overwhelmed.  I read, printed, memorized and shared the information from all of the sites.  I was now well informed but still just as frightened,  ill and overwhelmed.  And then something changed.  I sent an email to DINET asking a question about information found on the site.  I expected to wait a while and then receive a followup email with links to more information or a medical answer to my question.  What I received was a personal email from a DINET volunteer.  Her email gave me the medical answer and links that I needed and so much more. At a time when I was being shuffled from one lab test to another, one appointment after another, I frequently wondered if anyone remembered my name.  But this DINET volunteer took the time to share some of the common experiences dysautonomia patients have.  She wrote me and asked questions about how I was managing.  She encouraged me to join the forum and to continue to reach out to other people sharing similar experiences.  Through the forum and discussions with other members, I was no longer isolated and I was better understood.  It was that personal one-on-one communication that I so badly needed and that made all the difference to me.  I joined the forum and sometimes just reading something that someone else wrote was enough to help ease my own struggle.   

I became a volunteer for DINET not long after joining and I try to be that "voice" on the other side of the email or message whenever I have the opportunity.  As important as the knowledge and education offered has been to managing my illness, I will be forever grateful for the personal touch and experiences shared by the volunteers and DINET members.   

That's my story...now it's your turn. 

********************************************************************

Ways to donate - https://www.paypal.com/us/fundraiser/charity/1552351   shop - smile.amazon.com (select Dysautonomia Information Network)  or check out the many other ways - https://www.paypal.com/us/fundraiser/charity/1552351     

Great new video just posted by Lauren - Chronic Corner on YouTube covers travelling with POTS and other chronic illnesses.  She offers her tips and also shares tips sent in by members and followers of DINET.  Worth watching.  Also, check out the article written by DINET's VP, Chelsea Goldstein , 

On 10/28/2019 at 9:44 PM, WarpedTrekker said:

I've talked to my hematologist, cardiologist, and pulmonologist. They all ran tests on my heart and lungs and didn't find anything wrong.

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.

On 9/30/2019 at 11:22 AM, bombsh3ll said:

Absolutely! I believe 100% that identification of orthostatic intolerance should represent the beginning, not the end, of the diagnostic journey. 

Sending someone away with a diagnosis of "POTS" is like sending someone away with a diagnosis of "breathlessness". 

It is a symptom, not a disease. Something is always causing it, & a condition is only ever idiopathic when all known causes have been looked for. 

B xxx

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.  

@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!

On 9/25/2019 at 4:46 PM, KiminOrlando said:

If your face is drooping, you should probably go to the doctor or at least call them. They need to rule out stroke. This happened to my mom and the walk in clinic saw her when we came through the door and immediately sent us to the ER. Luckily, it was just Bells Palsy. 

  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. 

@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.

2 hours ago, bombsh3ll said:

The surgeon I would be using typically harvests rib for the grafts but I would definitely ask about pelvic.  They also use cadaveric donor bone and chronOs synthetic bone mineral protein either instead of, or as well as, bone grafts harvested from the patient so it seems to be tailored to individual needs. 

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.