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    • VACCINE RECOMMENDATION:  DINET encourages all its members to receive the vaccinations and boosters for COVID-19, unless specifically advised against it by your medical provider.  To better understand the virus, the vaccine and the effects on people living with dysautonomia, please watch Dr. Svetlana Blitshteyn's video "COVID-19 and Dysautonomia"

Long COVID and POTS: Long Haulers and Autonomic Dysfunction


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.

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“Decades of neglect of POTS and CFS have set us up to fail miserably,”  - Dr. Peter Rowe, John Hopkins, Baltimore

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)

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“There is hope that this miserable experience with COVID will be valuable,” said Dr. David Goldstein, head of NIH’s Autonomic Medicine Section.

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/




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I had extreme case of covid back in Aug of 2021 and was put on ventilator for 4 months given up to die 2 or 3 times. I got out of hospital Jan 25th 2022 and while in I was on 25mg of metropolol split in half twice daily. My Doctor tried weaning me off of it and I was on 12.5 mg a day for 10 days before stopping it. My heart rate was 90-100 resting and upon standing went up to 120-130 but seemed to level out a bit after being up a few minutes. Off the med my heart rate resting is about the same but standing it goes to 140-160 when standing/walking. I've been off the med for a week now so I've just been trying to fight through thinking that maybe since I was on the metoprolol for 6 months maybe my body is going to have to adjust. I was on such a low dosage though and seems it was lowering HR 20bpm so in a few days if the HR remains the same I'm going to start taking the metoprolol again. Seems I had minimual side effects from it but again 12.5 low does. Anyone have any thoughts on this or care to share similar experience?

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@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.  

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