Ask an Expert – Dr Jane McKay MD

The symptoms of dizziness and nausea in long Covid should be addressed separately.
Dizziness can have many meanings, includes symptoms of light-headedness, loss of balance, a sensation of the room spinning, a sense of floating or heavy headedness.
Gravol, or Dimenhydrinate is not an effective treatment for dizziness .
Physiotherapy or Occupational therapy can be a helpful method of managing dizziness.
Nausea in Long Covid is a common gastrointestinal symptom. Unfortunately, Gravol can make this worse as it slows the gastrointestinal tract down as a side effect. This leads to a slower stomach emptying and continued nausea. Ideally start with adequate hydration and small frequent meals throughout the day. A low inflammatory diet such as the Mediterranean Diet is recommended. Avoid over the counter medications.
Prescription medications for symptom management of dizziness and nausea can be discussed with your health care provider.

Difficulty with movement and balance occur in long Covid because of the COVID virus changing how the nervous system sends signals from the brain to your muscles and nerves that control movement and balance. There are no medications available to treat this problem yet. The problem can worsen over time if there are significant activity limitations leading to increasing muscle weakness.

Assessment of your standing and walking by a physiotherapist and or an occupational will help determine what mobility changes and aids may be needed to keep you from falling, as well as strategies to improve your muscle strength which will significantly improve balance.

In Long COVID, nerves in the head and neck may be altered. This change will cause nerve signals going to your brain sensory cortex (the area where our brain interprets sensations such as touch or swelling). The feeling of your head swelling is coming from altered nervous signals to your brain.

Your brain does not swell with Long COVID.

Nicotine patches have been studied in Long COVID. A study published in January 2023 created a lot of interest in using nicotine patches for Long COVID. The study hypothesis was nicotine patch could displace a portion of the SARS-CoV-2 blocking an important part of the nervous system responsible for fine tuning or neuromodulation of brain and nerves responsible for control of sleep, fatigue, nutritional behavior, anxiety, cognitive function and pain processing. The study was very small with only 4 participants. The smallest patch available 7.5 mg /24 hr was applied daily in the morning. The study lasted just under a month, and the 4 participants noticed improvement in fatigue, weakness, breathlessness, exercise intolerance, improvement in taste and smell, less chest tightness and palpitations as well as other symptom improvement.

With using any therapy, such as a nicotine patch for Long COVID it is always a risk versus benefit discussion. In the small study discussed there was benefit. The cost and potential side effects of using the smallest nicotine patch need to be considered.

NAC or N Acetyl Cysteine is an antioxidant, in a small study in Long COVID together with another medication it was found to help with memory, multitasking abilities and organizational skills. The dose in the study was 600 mg daily. It is used in lung diseases under guidance with your physician.

In Long COVID headaches occur. There are 3 types of headaches including tension-type headaches, migraine-like headaches, and new daily persistent headache . The headaches that occur in Long COVID are due to 4 current hypotheses : trigeminovascular system activation, persistent activation of the immune system, prior history of headaches and changes in the grey and white matter connectivity of the brain . Hopefully, in the future these hypotheses will look towards treatment unique to the Long COVID headache type.

Currently recommendations for management of Long COVID related headaches is the same for the headache types that occur as mentioned. On the LONG COVID THE ANSWERS website there is an excellent section on headaches to read that may help https://longcovidtheanswers.com/migraines-in-long-covid/

Facial swelling can occur after viral infections, or with allergies. It is not specific to Long COVID. A trial of a Long Acting non-sedating antihistamine may be helpful to determine if it is related to immune changes involving mast cells .

Methylene blue for mitochondria helps with “mitochondrial respiration “. It promotes effective mitochondrial activity and decreases “oxidative stress “. In doing so this improves many things such as fatigue and PEM. It has a neuroprotective effect so may help with your headaches. Methylene blue holds a lot of promise for mitochondrial health, and I would suggest continuing.

The symptom profile you have from Long COVID is involving your nervous system.

The balance and equilibrium concerns are happening due to the nerves from your brain to your muscles and the complicated relationship of the eyes and ears in maintaining balance and equilibrium.

Balance can be improved with physiotherapy specific treatments that help to retrain the eyes and ears as well as muscles that coordinate balance and movement.

An occupational therapist can help assist with determining the types of aids needed for your safety in an upright position. A cane, walker or wheelchair can give you so much freedom to live in the moment with your illness.

Tinnitus is a common neurologic problem in Long COVID. It can occur in up to 30 % of individuals with Long COVID. The nerves traveling to and from the ear are not working correctly. Your tinnitus may get worse at night. It can help to play background white noise; nature sounds or calming music through headphones. If the tinnitus is causing a lot of distress, mindfulness activities like deep breathing, or cyclic sighing may help.

The loss of taste and smell can persist in Long COVID. It represents the viral changes made to the olfactory and taste nerve cells. Trying to supplement with a multivitamin containing Zinc may help with taste. The recovery of taste and smell in Long COVID is variable and unpredictable.

Breathlessness with Long COVID is complex, some of it may be due to muscle fatigue of the small muscles between your ribs and diaphragm. If you had any lung changes with your initial COVID infection, that could contribute too. Changes to your autonomic nervous system occurring in up to 70 % of cases of Long COVID can change the balance of your parasympathetic and sympathetic nervous system. You may have a sensation of breathlessness, panic and a need to breath faster. One way to counteract this is by activation of your parasympathetic nervous system, the rest and digest portion of the autonomic nervous system. Deep breathing and breath control exercises can help you. Practice breath control exercises 3-4 times daily for 3-5 minutes each time. Cyclic Sighing is an excellent breath work exercise. With time 5 minutes of Cyclic Sighing can mimic the effects of 20 minutes of meditation.

Sinus tachycardia and other changes to the autonomic nervous system are common and frequent complications of Long COVID. Your infection is relatively recent, and there maybe improvement with time.

If you look at other populations such as those with Postural Orthostatic Tachycardia Syndrome not due to Long COVID the long-term prognosis is not known. The symptoms can be managed well with medication such as Ivabradine. Dysautonomia International is an excellent resource to review. It does have a lot of material on Long Covid dysautonomia.

There is a study published on Epipharnygeal Abrasive Therapy (EAT) for Long COVID in 2022. 58 patients were treated with EAT once a week for a month which involves scrubbing the area with cotton immersed in a Zinc Chloride solution. EAT reduced inflammation in the epipharynx (the area at the back of your throat that lies between the nasal cavity and mouth area). The intensities of fatigue, headache and attention were decreased. This same study has been cited in many references to EAT therapy. There are places in the United States where this is offered as mentioned Dr Groysman. References checked have not identified a clinic in Canada providing this.

Please remember with all therapy consider, risk versus benefit and cost. A small study does show promise but may not help everyone with Long COVID.

Migraine-like headaches definitely occur in Long COVID. Despite existing hypotheses of the cause of Long COVID related headaches, it has not resulted in Long COVID specific therapies for migraine headaches triggered by Long COVID.

Your headache specialist is providing migraine related therapy including Botox and Emgality ( galcanezumab-gnlm) for once a month as a preventative therapy for your migraines. It is a very effective therapy and hopefully will bring you relief.

Tinnitus can occur in Long COVID, as can sensorineural hearing loss due to the effect of the virus in the inner ear and auditory nerve pathway.

Tinnitus is a common neurologic problem in Long COVID it can occur in up to 30 % of individuals with Long COVID. The nerves traveling to and from the ear are not working correctly. Your tinnitus may get worse at night. It can help to play background white noise; nature sounds or calming music through headphones. If the tinnitus is causing a lot of distress, mindfulness activities like deep breathing, or cyclic sighing may help.

Both acute COVID infection and Long COVID are associated with headaches. Prevention of another COVID infection with preventative measures is crucial in decreasing your risk of worsening headaches. With Long Covid associated headaches it is important to determine the headache pattern. There are 3 types of headaches, tension type, new daily persistent, and migraine-like headaches. There is no Long COVID specific headache treatment as yet. Current recommendation is to treat the headache pattern as if it was a non-Long Covid related headache. I encourage you to review https://longcovidtheanswers.com/migraines-in-long-covid/.

This review is an excellent source of information for understanding Headaches in Long COVID.

The Alberta Long Covid Network has undergone changes in the last year. Dr Grace Lam, a physician and one of the organizers of the Long Covid Web 2nd Annual Symposium works in Edmonton. You will need to see if she is currently seeing individuals with Long Covid.

Tension-type headaches are one of the types of headaches that can occur with Long COVID. Currently there are no Long COVID specific tension headache therapies. Tension- type headaches in Long COIVD are treated in the same way as all conventional tension headache therapies.
There are many therapeutic options for tension-type Headaches available. The Mayo Clinic Resources for Tension Headaches is a reference I recommend as the information is accurate and easily available.
Amitriptyline does have side effects that can limit its use. There are other therapeutic options with different side effects that can be used which will require a review with your primary health provider.

Headaches following Long COVID often become worse as the day progresses. The pain associated will definitely cause fatigue. Long COVID headaches presenting with throbbing and pressure are often tension-type headaches. There is no specific Long COVID tension type headache treatment yet.

Treatment of tension-type headaches involve both non-medication strategies and medications. In your situation, non-medication strategies may help with the intensity of the

headache as the day progresses. Breathing exercises done for 5 minutes 4 times daily can help. Taking rest breaks throughout the day where you add in energy repleting activities such as listening to enjoyable music will help.

Pacing throughout the day is a good strategy to decrease any symptom.

For medications for tension-type headaches, please see your health care practitioner to discuss.

With Long Covid, it is crucial to pace and stay within your energy envelope. If you are experiencing Post exertional Malaise, it will come with prior symptoms of your Long Covid experience. The “sentinel symptoms” coming prior to PEM are important to recognize.  The sentinel symptoms are the warning signal that you need to pay attention to activity level and step back and rest.  When you pace and achieve consistency with less PEM, your chest pain headaches and dizziness will decrease.  Once at the point of PEM which is also worsening of symptoms, medications may only act as an adjunct to give some symptom relief.

Headaches can be very severe and debilitating.  It is important to clarify with your health care professional if this is a migraine headache.  There are many well established strategies for migraine management, to decrease intensity and frequency.  The concern of a stroke is understandable.  I would suggest seeing your health care provider to discuss your headaches.  There are excellent resources available online to help you with your journey.  In my practice I use https://migrainecanada.org/ as a reference for clients.

Daily long-term dizziness can be debilitating and life changing.  Normal tests do not mean Long Covid hasn’t altered the nervous system controlling the complex mechanism leading to the development of dizziness.  Unfortunately, there is no Long Covid related dizziness treatment .  Dizziness management starts with adequate fluid intake.  If any nausea, small frequent meals of a low inflammatory diet may help.  Make sure your environment is safe in case you are at risk of falls.  Some individuals do receive benefit from vestibular retraining with physiotherapy.  There are medications available to decrease the symptom burden, but they may not help.  Reach out for a support group.  Dizziness occurs in many all over the world.  Having a community of support will help.

Long Covid does cause long term headaches and dizziness.  The nervous system is altered by the multiple mechanisms leading to Long COVID.  At this time headaches and dizziness are managed as for other clients without Long COVID. For headaches, the type of headache is important to determine. There are 3 headache patterns; migraine, tension-type and new daily persistent headache.  Each type of headache has a different strategy for management.  Identifying the headache pattern is your first step with your health care provider.

Daily long-term dizziness can be debilitating and life changing.  Normal tests do not mean Long Covid hasn’t altered the nervous system controlling the complex mechanism leading to the development of dizziness.  Unfortunately, there is no Long Covid related dizziness treatment .  Dizziness management starts with adequate fluid intake.  If any nausea, small frequent meals of a low inflammatory diet may help.  Make sure your environment is safe in case you are at risk of falls.  Some individuals do receive benefit from vestibular retraining with physiotherapy.  There are medications available to decrease the symptom burden, but they may not help.  Reach out for a support group.  Dizziness occurs in many all over the world.  Having a community of support will help.

I would encourage you to look up the Mayo Clinic definition of Long COVID.  You will find useful information on the psychiatric manifestations that occur due to Long COVID.

Hypersensitivity to any sound can occur in Long COVID this can be a trigger for multiple symptoms especially in the nervous system.  Modulating your voice may help.

Participating in this course may help. Longcovidtheanswers.com/recovery is a self-managed 4-part course developed by an Occupational Therapist whom we use in our government practices to rehabilitate longhaulers. It is available to people outside of BC, Canada who may not have access to this resource in their Country/State.

Migraine headaches are common in Long COVID .  Nonsteroidal Anti-inflammatory medication like Naproxen are helpful. If side effects occur, and the headaches are frequent, different classes of medication are useful.  I would discuss with your health provider.  Every country has a slightly different approach.  In Canada, the resource https://migrainecanada.org/ is very a very helpful tool.

The migraines associated with Long Covid are challenging.  Your neurologist is treating with an agent you have mentioned that is for migraine prevention.  The symptom complex of tinnitus, fatigue , vertigo and nausea are also features seen in Long Covid that may accompany migraines , but are managed differently than a migraine . Nausea is a frequent symptom of migraines. Vertigo can occur with migraines but less often.

The fatigue and PEM you experience may be worse with chronic pain.  When medication management has reached its limit, we look to complementary managements.  The group reference below will help.

https://longcovidtheanswers.com/recovery/ is a self-managed 4-part course developed by an Occupational Therapist whom we use in our government practices to rehabilitate longhaulers. It is available to people outside of BC, Canada who may not have access to this resource in their Country/Province or State 

Please see my answers to previous questions about tinnitus and vertigo/dizziness.

Long COVID New Daily persistent headaches do not have any specific therapy recommendations.  The management strategy is designed on current management strategies for new daily persistent headaches in any population.

New daily persistent headache has two subtypes: a self-limiting subtype that typically resolves within several months without therapy, and a refractory subtype that is resistant to aggressive treatment regimens.

This article below will help you look at options that are used for treatment resistant headaches.  You can review and discuss with your health care provider.

https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-019-1022-z

In addition, the Cleveland Clinic has an excellent review of New daily persistent headaches including classes of medication that I recommend . https://my.clevelandclinic.org/health/diseases/24098-new-daily-persistent-headache-ndph

There are 6 leading hypotheses for Long COVID. Micro-clotting along with endothelial dysfunction, and viral persistence are 2 of the hypotheses.  Different areas will approach therapeutic intervention differently.  

Frequently, antihistamines are used as Mast Cell Activation Syndrome is known to occur more frequently in Long COVID.  Antihistamines will block the histamine on the H-1 receptor of our cells, decreasing symptoms of Mast Cell Activation Syndrome.

Low Dose Naltrexone in small doses up to 4.5 mg in the gold standard study, a randomized controlled trial, has been demonstrated to decrease pain.  The proposed mechanism of action is stabilization of microglial cells that form part of the immune system.  Preventing breakdown of the microglial cell results in less proinflammatory cytokine release as well as increased endorphin release, there are other effects, but these are most pertinent.

Studies are ongoing in Long Covid with Low Dose Naltrexone.  In an unpublished retrospective review of Low Dose Naltrexone done by myself looking at Fibromyalgia and ME/CFS – pain was decreased, brain fog improved, there was less fatigue, and improved sleep was observed. 

Nausea with headaches needs review with your health provider as it can be a presentation of a migraine-like headache.  I would encourage your teen to seek guidance from a health care provider first.  All nausea associated with Long COVID is improved with adequate hydration, and frequent small meals.  A low inflammatory diet such as the Mediterranean diet may help.

Hi, yes, there is hope, and I have seen full recovery. Most stories are in my book as well. In my opinion adolescents have the highest chance to get better, particularly if treatments are not started years after the disease

That is true, it is also difficult for me to explain this, given the growing and growing evidence we have in the field. Unfortunately conferences and science do not seem to be sufficient, as you said we are still too few, that is why for example I also wrote a book. I think patients’ organizations here can have a major role.

Agree with the salt, particularly in young children. In younger patients (what is the age here?) we don’t have specific cut offs. I prefer checking HRV and stand test, consider drinking a lot of water, ivabradin, compressive socks, and a general initial indication that main meals should taste a bit salty, but this only if hypovolaemic POTS

I said it is an endothelial inflammation, which in turn can activate platelets . We don’t have formal tests so far, in the most severe cases I empirically consider to use some anticoagulants with known protective effects on the endothelium, at low dosages

Hi, I don’t have a magic wand, unfortunately. I always say to families that I cannot promise full recovery, but I’ll try with the best of my knowledge to help the child and families stay better. My decisions are based on a case by case scenario, according to the main problems. Several pharmacological options can be considered, as well as pacing strategies. Most children can at least return to go out from home a live a quite life, this is the minimal goal, most of the time achievable. Maybe easier to discuss in an online consultation. Also, the book I wrote can help in understanding more what is going on and potential strategies.

Dysautonomia is DYS-function of the AUTONOMIC nervous system (i.e., fight or flight / adrenaline). There are different medical conditions that cause dysautonomia or are associated with dysautonomia. We will focus on the dysautonomia associated with ME/CFS and CSS (central sensitivity syndrome).

Autonomic Manifestations are part of the diagnostic criteria of ME/CFS and include:

• Orthostatic intolerance – lightheadedness or feeling like you’re going to faint on standing
• Postural Orthostatic Tachycardia Syndrome (POTS)
• Hypotension – low blood pressure 
• Extreme pallor, nausea, and IBS
• Urinary frequency and bladder dysfunction 
• Palpitations 
• Shortness of breath or feeling like you can’t get enough air in

Symptoms of dysautonomia are also associated with other CSS: (e.g., fibromyalgia (FM), myofascial pain syndrome (MPS), POTS).

Interestingly, POTS is a separate CSS but is also used as part of the diagnostic criteria for diangosing ME/CFS. POTS can be thought of as a type of dysautonomia or a symptom of dysautonomia.

POTS is one of the common post-viral syndrome that we see with Long COVID. A study suggests that the POTS associated with Long COVID may be different in that it can be associated with low blood pressure. However, this study did not compare POTS in Long COVID with POTS in ME/CFS (unrelated to COVID). Low blood pressure is commonly seen in patients with ME/CFS who have POTS.

POTS is a disease of gravity. When patients go from lying to standing, the heart rate increases to compensate for gravity and ensure enough blood gets to the brain. However, the faster the heart beats, the less blood is pumped so rather than helping the patient gets lightheaded and may even faint. The classic manifestations of POTS are a heart rate that increases by 30 beats per minute or more from lying to standing WITHOUT a significant drop in blood pressure. Because low blood pressure can be seen with the POTS associated with Long COVID and ME/CFS, some physicians mistakenly think that the patient does not fulfil diagnostic criteria for POTS.

Luckily, POTS is one of the post-viral syndromes associated with Long COVID that responds well to treatment. Many patients only require salt supplementation to improve the blood flow to the brain (i.e., 9 g per day). Otherwise, POTS also responds well to medication’s (e.g., beta blockers, Ivabradine, Mestinon) and other non-mediation options (e.g.,compression garments). Many patients find that their POTS symptoms improve with time and management of Long COVID.

Low iron is not associated with ME/CFS or related CSS. Therefore, individuals with low iron (most commonly young women who menstruate) need to be evaluated for the cause of the low iron. Low iron itself (ferritin below 50) is associated with fatigue. Getting the ferritin above 50 can help with some of the fatigue but is not the cause of the ME/CFS.

If you are sick, you need to make sure to get plenty of rest and maintain your salt and fluid intake

The above is for other types of dysautonomia and I would not include it.

The diagnosis of dysautonomia in these conditions is based on symptoms without the need for special testing. However, dysautonomia can also be associated with other serious conditions (e.g., Parkinson’s disease) that may require special testing. The diagnosis of POTS itself is relatively straightforward. Many physicians mistakenly believe that patients require tilt-table testing to make a diagnosis. However, the NASA Lean Test Is more sensitive and more specific. The Canadian Cardiovascular Society Position Statement on POTS recommends against routinely performing tilt table testing.

The NASA Lean Test can be performed at home. Patient measure their heart rate before getting out of bed and for 10 minutes while leaning against a wall (there should be a spotter in case you feel faint). If the heart rate increases by 30 beats or more this is diagnostic of POTS. We recommend that the test be repeated on a separate day while measuring blood pressure to identify those patients who have a significant drop in blood pressure (or those whose blood pressure increases).

Gastroparesis (delayed gastric emptying), IBS with constipation, and constipation due to delayed transit time in the colon, can be associated with Long COVID and ME/CFS with or without POTS. We do not know the long-term history of these conditions due to the lack of research. However, the symptoms often respond to Mestinon. Small fibre neuropathy is commonly associated with ME/CFS, FM, and Long COVID. Again, we have a little data on the long-term prognosis. The symptoms, however, respond relatively well to the usual medication we use for neuropathic symptoms

Long COVID is associated with low serotonin levels. Therefore many patients with Long COVID report some improvement with SSRIs (for those with associated pain we recommend SNRIs instead). However, the role of these medications in POTS remains unclear. Some studies suggest that it can help while others suggest that it makes symptoms worse. Therefore, SSRIs and SNRIs or not usually part of the usual treatment options for POTS. However, we commonly use these medication’s for other reasons in this patient population.

Before we answer this question, we need to make a distinction between Post Covid Conditions (PCC) and Long COVID which is a post-viral syndrome. Although a naming convention has not been agreed upon, we use the one by the Mayo Clinic in Rochester, Minnesota. They suggest that we think of PCC as anything that can happen after COVID which they organize into three groups:

1. Tissue damage (e.g., lung scarring, heart damage, loss of taste or smell) and metabolic consequences (e.g., blood clots, high blood pressure, diabetes, high cholesterol)
2. Psychiatric/psychological manifestations (e.g., depression, anxiety, PTSD)
3. Post-viral syndrome – LONG COVID

Like the Mayo Clinic, we reserve the term Long COVID for those a post-viral syndrome in the absence of tissue damage. Many doctors and organizations do not make a distinction between PCC and Long COVID which is confusing and makes a lot of the medical literature difficult to interpret. Patients with post-viral syndrome of Long COVID tend to have completely normal bloodwork and investigations. However, special testing, which is not routinely available, does show many abnormalities.

The common post-viral syndrome associated with Long COVID include:

• ME/CFS 
• FM
• POTS
• MCAS (mast cell activation syndrome)

Studies show that vaccination against COVID reduces the chances of “Long COVID” by 50% (this likely includes PCC). We can therefore assume  that patients with pre-existing Long COVID are 50% less likely to experience significant worsening of their Long COVID symptoms. We encourage our patients to get vaccinated (except those who have had vaccine injury). A similar argument can be made for the use of Paxlovid and metformin during an acute bout of COVID in Long COVID patients

Many people with medical illness, including long COVID, can experience symptoms of depression, anxiety and sleep disturbance, either directly from the medical condition, associated symptoms such as pain or fatigue, the medications they are taking or the emotional and financial stress of dealing with poor health. Psychiatrists and therapists can help with these symptoms even if they are not the cause” of your physical symptoms and “medically unexplained” symptoms. Mental health professionals can also help with the emotional toll and trauma of having to navigate complex medical systems, having symptoms and concerns dismissed and fear related to the uncertain recovery timeline.

Even if mental health conditions are not causing your physical symptoms, it’s been shown that having active and untreated feelings of stress, depression and anxiety can exacerbate underlying medical conditions, which is particularly important for common long COVID symptoms such as fatigue, brain fog and headache that require comprehensive treatment approaches. In some areas and long COVID clinics, psychiatry is an important specialty in the management of symptoms like brain fog given their training in diagnostic evaluation of cognition, attention and mood, as well as their clinical expertise with some of the helpful psychiatric medications such as stimulants and antidepressants.

Our clinic developed this handout for friends and loved ones of long-haulers, though it may also be helpful when meeting with healthcare professionals less familiar with long COVID (in addition training programs such as this). Additional resources can include the CDC’s Living with Long COVID website..

Finding a therapist that can provide Acceptance and Commitment Therapy (ACT), can be immensely helpful in learning ways to cultivate hope, enhance coping skills and find ways to lead a fulfilling and satisfying life that aligns with your personal values even in the setting of persistent physical symptoms.

Some steps that people find helpful are exploring ways to “lean into” and accept the uncertainty which often leads to decreased emotional distress (easier said than done I know!), identifying and focusing on what is within your control and cutting down on comparing your current functioning to your pre-illness self.

Some helpful ACT resources:

• https://positivepsychology.com/act-therapy/
• https://positivepsychology.com/act-acceptance-and-commitment-therapy/

Self-help ACT books:

·       Get Out of Your Mind and Into Your Life: The New Acceptance and Commitment Therapy – Steven C. Hayes and Spencer Smith

·       ACTivate Your Life: Using Acceptance and Mindfulness to Build a Life That Is Rich, Fulfilling and Fun – Joe Oliver, Jon Hill, and Eric Morris

·       The Happiness Trap: How to Stop Struggling and Start Living – Russ Harris

Chronic illness toolkits like the one on my clinic website can also be helpful to work through on your own time if struggling to find an appropriate therapist:

Some other great articles and resources for this topic:

• https://returntowellness.co.uk/2019/03/13/10-things-to-do-when-your-recovery-is-uncertain/
• https://www.helpguide.org/wellness/health-conditions/coping-with-a-life-threatening-illness
• https://thehappinesstrap.com/free-resources/

Many people can be reassured by the knowledge that for many long-haulers, recovery can occur over the course of 6 months to several years, even if it slow and fluctuating in nature.

It can be helpful to reassure children that they are not alone in their experience and that in general children recover more quickly from long COVID than adults (an average of 6 months). When recovering from longer-term illnesses, much of our emotional distress comes from focusing on things we cannot control, things we have lost and feelings of uncertainty, which can make it hard to shift our attention to signs of improvement and progress and other fulfilling parts of our life.

Gratitude work, as well as the ACT resources mentioned in the other question about cultivating hope can be helpful in supporting your child.

They may also find it helpful to connect with other children and families experiencing long COVID. Long COVID Kids is an organization with extensive resources for families experiencing long COVID, including support groups and online “support packs” and guides!

Acute and long COVID have been associated with new onset psychosis as well as worsening of preexisting psychosis. The mechanism is not fully clear yet, but there have been multiple hypotheses identified, related to inflammation, side effects of medications like steroids, triggering of related medical conditions like encephalitis and the presence of concurrent hospital acquired delirium. For patients with new onset psychosis in the setting of COVID, it is often time-limited and may respond well to antipsychotic medication. More information can be found on our Long COVID the Answers Psychosis Symptom Page

Though not as commonly reported as depression, anxiety, PTSD and even psychosis, there have been some reports of bipolar type symptoms in the setting of COVID. Symptoms seem to occur more the acute illness phase and benefit from the same psychiatric medication as more classic bipolar I and II disorders such as antipsychotics, mood stabilizers and benzodiazepines.

Epilepsy and long COVID have both separately been associated with symptoms of psychosis. Epilepsy has been reported as a possible result of COVID/long COVID, though in general it is felt to have a low incidence, with some studies citing an overall risk of 1% in all people with COVID-19. At this time, it is not known if epilepsy specifically due to long COVID can precipitate psychosis or psychotic episodes.

Brain fog is a very imprecise term but one that has made it way into our vocabulary.  Many people with Long Covid use it and it refers to things like problems attending, focusing, processing.  There are a huge array of potential contributors to brain fog which means that there is probably no single intervention that will completely alter or “fix” it.  Physiologically, many experts think inflammation at at the heart of the matter but, again, there is no “one” cause.

There is a vigorous debate going on pertaining how to best “sharpen” your brain.  In general, experts believe that challenging your brain through moderately difficult activities – often things that are unusual or new and are reasonably demanding – is beneficial as it can help accelerate the process of neuroplasticity that is at work.  In some cases, this can mean playing sudoku, in other cases, learning a language, or playing an instrument, and – perhaps – even engaging in some of the commercially available brain training programs which may help improve neuropsychological functioning.  

I’m curious if there is a pattern of Long COVID mental health characteristics aligning very closely with PTSD, but more specifically the primary and secondary traits of PTS

There is no “one” way to best manage these difficult emotions except to say – don’t do it alone.  Consider finding a mental health provider, a social worker, a member of the clergy or, really, anyone who can walk through deep water with you.  You’ll be glad you did.   

This experience – having a moment or two where your mind goes “blank” is a really terrifying phenomenon.  This is a fairly common among people with mild cognitive impairments of various kinds and while it is distressing is is probably not proof of any more severe problem, though it does generate a great deal of anxiety which, ironically, usually makes this pattern even worse.  

Experts continue to debate how to best facilitate healing of injured brains.  The key – as with almost everything – is to find a balance between engaging in activities and being exposed to stimuli that are too challenging and not engaging in activities at all.  I think the most appropriate course of action – if at all possible – is to consult with a speech and language pathologist (SLP) – SLPs are the content experts who are the best guides and authorities on brain injury recovery – you can find one in any moderate or large city.

Regarding PTSD, this is a syndrome that is very common in people with  Long Covid – it may differ slightly than more typical PTSD in its’ presentation but, in general, it is very similar.  In particular, people with Long Covid who have PTSD especially struggle with what is called medical avoidance – this is a concern because it leads them to miss appointments, avoid going to the ER or the hospital etc even when it medically called for. Treatments exist for PTSD, whatever the cause, and are highly effective – please considering  seeking out a qualified  provider who can help support you.  

Answers:

• Skin changes are noted in some people with post-exertional malaise, including as a potential early warning sign. While no specific mechanism for changes in skin color has been show in the scientific literature, one possible explanation for this skin color change may be dysautonomia resulting in shunting of blood away from capillaries near the skin. Relatedly, small fiber neuropathy sometimes can result in a white or mottled red-white appearance.
• It’s so hard to help children pace when they’re feeling good and having fun, because it doesn’t feel like “help” for anyone involved. For ideas on pacing in children to prevent PEM crashes, I recommend the blog posts by Long Covid Kids on Cautious Tortoise and Pacing Penguins.

Answer:

It’s clear immune dysfunction is a part of PEM. However, any hypothesis explaining PEM must also explain the proximate cause of observed deficiencies in energy metabolism and consequent disablement. It’s perhaps more feasible that dysfunctional cellular energy production and utilization causes the characteristic immune dysfunction of PEM than the other way around. The fact that various studies have identified abnormal oxidative metabolism in various immune cells provides some support to this idea. A couple of models have been proposed to link metabolic and immune dysfunction, including the metabolic trap and itaconate shunt hypotheses. I look forward to more definitive data on these potential pathophysiological relationships that have relevance to treatment.

Answer:

Cognitive stressors are known precipitants of PEM crashes. However, neurocognitive pacing is such a huge challenge, especially for people whose jobs require significant brain usage; who enjoy reading, puzzles, and games; or who cultivate a vibrant internal world. Establishing time limits for reading, puzzles, and games and enforcing those limits with timers may help. Some people find meditation helpful to help turn down their thinking. Yoga nidra is a form of meditation that is accessible to people with PEM, because it is done while laying down in a “conscious sleep.” It’s also important to remember that different triggers are cumulative and may result in a crash. This means some people also find success with pacing activities that do not seem cognitive to build a reserve of capacity that can be used for cognitive activities. Pacing triggers such as physical activities and exposure to environmental stimulation also may help build a reserve that improves your cognitive symptoms and signs.

Answer:

• Pacing always involves balancing activities with rest. Even people without PEM pace their exercising! Early in managing PEM, the balance swings in favor of resting to manage symptoms and signs. Some people with Long Covid are able to return to some kind of physical activity without causing a PEM crash. Staying under the line of “just enough” and “too much” is particularly important for someone living with PEM, even if it is improving to the point that some exercise has become possible again, because future crashes are still possible.
• You are not going to exercise your way out of PEM by exercising more or harder. For someone with PEM, it’s still always better to do “a little too little” than “a little too much” physical activity. So, how can you find that line?
  • Focus on short term activities: Short intervals minimizing time spent above your anaerobic threshold heart rate with complete rest are a good place to start. Starting with activities done laying down (like breathing, stretching, and limb movements) will reduce the work of the heart, improving preload and reducing orthostatic intolerance.
  • Pay attention to how you feel: If you notice more PEM signs and symptoms after an exercise session, wait until they completely resolve for at least a couple of weeks before beginning again at a lower level.
  • Watch your biometric data: An increasing resting heart rate and lowering heart rate variability at rest may suggest a crash in the near future, even if you’re feeling good.
• Maybe the hardest part of being able to do a little exercise is wanting to do more exercise. Remember: less is still more, be careful with yourself, and to keep up with what got you to this point.

Answer:

• This is an excellent question that gets my standard, universally unsatisfying response: maybe. Of course, my response isn’t to make light of a difficult conversation, but rather to highlight the uncertainty of this issue.
• Historically, most people with PEM related to ME/CFS have needed to pace over the long-term, because of a recovery rate of around 4-8% or less. Recovery is tricky to define and identify, because remissions may be temporary.
• Recovery rates for people with PEM related to Long Covid appear more promising, which suggests that at least some people are able to return to exercising in some form.
• We clinicians and researchers are still inaccurate at predicting who may improve, and recovery is non-linear when it happens. So, it is important to pace carefully while experiencing symptoms and signs of PEM, even if the capacity and desire for some more physical activity may be starting to come about.

Answer:

• Dietary supplements are a mainstay of PEM self-management. A recent systematic review and meta-analysis did not yield promising results from neutraceutical treatments for PEM related to ME/CFS. There are a number of challenges in studying neutraceutical treatments, including patient selection, potency and quality, adequate masking/placebo controls.
• While there is no widely accepted regimen, many people find neutraceutical treatments helpful that may reduce inflammation and support mitochondrial, immune, cognitive, circulatory, and digestive functioning.
• In this online lecture, Dr. Jeannette Brown goes through common over-the-counter dietary supplements and their potential uses for people with Long Covid. It is oriented more toward primary care practitioners, but there may be some information to which you can point your own medical team.
• Dr. Martha Eckey, and pharmacist living with Long Covid, has done the most extensive survey work to date regarding the use of neutraceutical treatments in Long Covid and ME/CFS. Her results may serve as a starting point to understand, on average, how often various treatments may or may not help.
• Before starting any new medication or dietary supplement, make sure to consult a physician or pharmacist who is knowledgeable about potential interactions between drugs and supplements to avoid side effects and toxicity.

Answer:

• I always recommend making sure aching legs aren’t associated with circulatory problems that are treatable, so make sure to check in with your medical team.
• Aching legs may be a sign of immediate or short-term PEM. While prevention is the best “medicine,” some people have success with self-treatments like elevation and gentle recovery compression.

Answer:

• The diagnosis of PEM is usually made using basic information from asking questions and doing some basic medical tests. A digestible overview for identifying and evaluating potential PEM may be found in the paper by Grach et al. 2023. Perhaps the fullest case definition of PEM is the International Consensus Criteria for Myalgic Encephalomyelitis (ICC-ME), which was published in 2011 by Carruthers et al. In this case definition, you will find they don’t use the term PEM, but rather identify this phenomenon as post-exertional neuroimmune exhaustion, or PENE. The things I like about the ICC-ME are that it defines the post-exertional signs and symptoms comprehensively, distinguishes ME from atypical ME or idiopathic chronic fatigue, and comments on severity.
• Some people seek cardiopulmonary exercise testing (CPET) as part of the differential diagnosis of PEM and to document disability associated with it. People with PEM often have reduced aerobic capacity and workload at submaximal levels of exertion that are in line with the work of daily activities, which is worsened on the second day of a two-day CPET.

Answer: While who gets and who does not get Long COVID seems like the outcome of the lottery there are certain baseline characteristics that impact a person’s risk of getting Long COVID. While certain characteristics such as being hospitalized, female sex, higher body mass index, smoking, preexisting comorbidities, not receiving early antiviral therapy, and not being vaccinated are associated with an increased risk of Long COVID, sequelae of COVID-19 are seen in all populations are varying incidence levels.

EXPERT: Dr Daniel Griffin, MD PhD CTropMed CTH

Credentials:
Chief, Division of Infectious Disease and Travel Medicine | Optum / Tristate
Infectious Disease Specialist / Clinical Instructor of Medicine

Columbia University Vagelos College of Physicians and Surgeons
Department of Medicine-Division of Infectious Diseases
President –Parasites Without Borders

Answer:

While avoiding COVID-19 in the first place is the best way to prevent Long COVID, behavior modifications, masking, and improved ventilation can reduce the risk of exposure. Vaccines decrease the risk of developing Long-Term COVID-19 in adults, adolescents, and children. There has been some excitement about the possible impact of early use of metformin on the risk of developing Long COVID, but this requires a challenging regimen in the published trial and has not been repeated. 

There is also uncertainty whether early treatment with an effective antiviral such as nirmatrelvir or molnupiravir may reduce the risk of all post covid conditions in people who are vaccinated, unvaccinated, boosted, and with primary and SARS-CoV-2 reinfection. Multiple studies have demonstrated that treatment of acute COVID-19 with nirmatrelvir-ritonavir can reduce the incidence of major adverse cardiac events (MACEs) (cardiovascular death, myocardial infarction, stroke, new-onset heart failure or heart failure hospitalization or ventricular arrhythmia). 

Early treatment with nirmatrelvir-ritonavir during the first 5 days after symptoms onset is associated with not only major (reduction) in cardiac events and acute events such as hospitalization and death, but also a reduction in post-acute incidence of congestive heart failure, atrial fibrillation, coronary artery disease, chronic pulmonary disease, acute respiratory distress syndrome, interstitial lung disease, and end-stage renal disease.

Despite compelling data that monoclonal antibody therapy can have dramatic impacts on acute COVID-19 outcomes, our investigations looking at the ability of early monoclonal antibody therapy to prevent Long COVID have not been encouraging. While studies of the administration of monoclonal antibody therapy have not clearly demonstrated a reduction in the development of long-term COVID, early administration of COVID-19 convalescent plasma (CCP) has demonstrated a reduction in cytokine levels and a lower odds of development of post-COVID conditions. Corticosteroids may exert a protective effect against the development of post-COVID-19 syndromes if administered appropriately to hospitalized patients with acute COVID

EXPERT: Dr Daniel Griffin, MD PhD CTropMed CTH

Credentials:
Chief, Division of Infectious Disease and Travel Medicine | Optum / Tristate
Infectious Disease Specialist / Clinical Instructor of Medicine

Columbia University Vagelos College of Physicians and Surgeons
Department of Medicine-Division of Infectious Diseases
President –Parasites Without Borders

Answer: Unfortunately, acute COVID-19, as well as Long COVID, can exacerbate many conditions, including MS.

EXPERT: Dr Daniel Griffin, MD PhD CTropMed CTH

Credentials:
Chief, Division of Infectious Disease and Travel Medicine | Optum / Tristate
Infectious Disease Specialist / Clinical Instructor of Medicine

Columbia University Vagelos College of Physicians and Surgeons
Department of Medicine-Division of Infectious Diseases
President –Parasites Without Borders

One can open a discussion of evidence-based therapeutics for Long COVID-19 with optimism, as there are hundreds of ongoing clinical trials for Long COVID-19, the majority of which test potential therapies.  Before its consideration as a therapeutic, there were questions about the safety of vaccinating patients with Long COVID symptoms. This was followed by evidence suggesting that COVID-19 vaccines had therapeutic benefits for patients with Long COVID if given after the development of Post-COVID sequelae. Vaccination has also been shown to reduce the severity and impact of Long COVID on patient’s social, professional, and family lives. 

It appears that the benefits of COVID-19 vaccines on Long-COVID are present with a single vaccine dose but increases with a second and even more with a third dose of vaccine. COVID-19 vaccination in the context of PCC is associated with reduced symptoms, increased well-being, and downregulation of systemic markers of inflammation.

EXPERT: Dr Daniel Griffin, MD PhD CTropMed CTH

Credentials:
Chief, Division of Infectious Disease and Travel Medicine | Optum / Tristate
Infectious Disease Specialist / Clinical Instructor of Medicine

Columbia University Vagelos College of Physicians and Surgeons
Department of Medicine-Division of Infectious Diseases
President –Parasites Without Borders