“Medical Mystery” after Moderna. Need Help ASAP please! 30F

[Shelby90]

Background- 30F 98lbs 5’3 Los Angeles. Diagnosed with Dysautonomia POTS/OH by UCLA RR cardiac arrhythmia center in 2018. Was severe but became well managed with increased fluid and sodium intake and increased physical activity. All prescribed meds had severe side effects (bradycardia, extreme weakness, etc) so discontinued. Symptoms eased up over time with fluid and sodium therapy and I led a fairly normal life until March 2021. I’m on birth control and I vape. (Bad habit I picked up, I know)

 

I got my first dose of Moderna in late March at Dodgers Stadium. Within 10-15 min after the dose, I became severely weak all over. I struggled to breathe and it was if I had just been heavily sedated. I just slouched over and kind of melted into my seat, and couldn’t lift my arms or neck in the car. We managed to get home, but my husband had to carry me into the house since I could not walk. Totally limp. I wrote it off as my POTS acting up or just having a sensitive body and just tried to sleep it off. While sleeping I had intense chest pains and felt as if I was going to vomit, but didn’t. I couldn’t walk due to extreme weakness for the next 4 days. 

I don’t know if this is related, but somewhere around day 1-4 I developed a bizarre situation at the base of my skull. I can’t remember much because it’s so hazy. It was a rough time.

 

So…I can not lay my head back or put pressure at the base of my skull. Basically any pressure at all on C1-C7 even down to T6-7 will cause me to black out, nearly pass out if I don’t catch it in time, palpitations, tachycardia, intense pressure in my jugular veins, and dry heave with the most intense nausea I’ve ever had. When I lay my head back for 20+ seconds, I see stars and my right eye feels weird and my vision gets blurry around the edges. I have extreme lightheadedness, tremor like shakes and I can not eat more than a few bites at a time. I can not turn my head, tilt my head back, to the side or forward. I can’t not lay back on a pillow or even tolerate laying on my side for more than a few minutes. I have to constantly let my head up and adjust to get the “blood moving again”. I literally wake up in the middle of the night dry heaving and I have to immediately adjust my position. 

 

So, 22 of the 28 days in between the 1st and 2nd dose I slept on the bathroom floor due to sickness. Then I somehow convinced myself to get the second shot, and it got even worse. I slept on the bathroom floor for 27 days straight the second time until I figured out it was my neck and tried to make adjustments. I thought I was going crazy it took 3 months before I could muster up the strength to walk again.

 

Basically long story short it’s been a total of 6 months of constant suffering and I didn’t realize it until last week. It’s all a blur. Prior to my Dysautonomia diagnosis, I was told by ER physicians that it was anxiety or heartburn or that it was all psychosomatic. I was told it was anxiety by 10+ specialists before I happened to meet a random ER doc that saved me after I collapsed in 2018. Basically everyone let me just suffer and never believed me and now I have a fear of doctors because I get dismissed. I know I need to work on this, and I shouldn’t have let it get this bad before saying something. I’m now in a wheel chair and I’m just devastated  at what has happened to me. I try with all my might to function and I force myself beyond what I’m capable of and I suffer for it. 

 

I knew better than to go to the ER because I couldn’t take someone telling me it was vaccine anxiety and it would kill me inside to ask for help when in desperate need and be turned away again. I’m pro-science and vaccine. I don’t have anxiety in general either. I was even considering getting the booster but my husband and I agreed we need to get this sorted and see if there’s a connection before I do so. Also, I’m somehow still alive after 6 months so I’m assuming it’s not life threatening. 

 

I contacted a neurologist who ordered an MRI w/o contrast last week and she said nothing was wrong with me and it was all in my head. My PCP has no idea what’s wrong and thinks it’s Thoracic Outlet Syndrome or Cervical Instability, but has no idea how to diagnose it and couldn’t help me beyond that. 

 

I didn’t have this neck issue prior to the covid vaccine. Or if I did, it was mild and not enough for me to notice and I may have confused it with Autonomic symptoms. 

 

If anyone out there has any idea what this could be and offer me any advice I would appreciate it. 

 

My symptoms make no sense and I’m aware of that, but I was hoping someone out there might have something for me. I’m now in a wheelchair and I can’t even push myself because of the weakness and I’m absolutely miserable. 

[Rexie]

You or your PCP or neurologist could report your case to the Vaccine Adverse Event Reporting System (VAERS).

See:  

https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/vaers.html 
https://vaers.hhs.gov/reportevent.html 

Sorry you are having such a horrible time, Shelby90. Maybe you'll be able to get some help or clues through VAERS, 

[Guest KiminOrlando]

I think your PCP is on to something. Ask them if they will write a script for a standing MRI with flexion. MRI lying down doesn't really show much. The other will show the Craniocervicle Instability if there is any. The Radiologist will read it and send the report to the PCP. From there you can see a neurosurgeon if needed. This is a common thing among people with dysautonomia. 

Good luck!

[Shelby90]

1 hour ago, Rexie said:

You or your PCP or neurologist could report your case to the Vaccine Adverse Event Reporting System (VAERS).

See:  

https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/vaers.html 
https://vaers.hhs.gov/reportevent.html 

Sorry you are having such a horrible time, Shelby90. Maybe you'll be able to get some help or clues through VAERS, 

Thank you, I will ask if he will do that. I don’t know if he believes this is from the vaccine but i guess it doesn’t hurt to ask. Thanks so much again ❤️

[Shelby90]

1 hour ago, KiminOrlando said:

I think you PCP is on to something. Ask them if they will write a script for a standing MRI with flexion. MRI lying down doesn't really show much. The other will show the Craniocervicle Instability if there is any. The Radiologist will read it and send the report to the PCP. From there you can see a neurosurgeon if needed. This is a common thing among people with dysautonomia. 

Good luck!

My PCP doesn’t feel comfortable being involved with this. He’s referring me out but the soonest appointment I can get is in December. I will ask the neuro if they can do this for me. The last neuro was so bad I literally wanted to throw my laptop at the wall after the appt. She couldn’t be bothered with helping me come up with any ideas but had zero problems taking my money. Ugh. 
 

thanks for the advice though. I’ll do what you recommended. ❤️ 

[Pistol]

@Shelby90 I am so, so sorry you are suffering like that. My first thought was: have they checked your D-Dimer level? This test checks for any blood clots. I know the relentless nausea from dysautonomia and sympathize with you! I too couldn't walk or get out of bed for a few years but eventually I improved on meds and other treatments - but that was prior to COVID! 

I used to have a pinched nerve in my neck that the PT said presented exactly like a herniated disk, but a supine MRI di not show anything. I agree with what @KiminOrlando says - my PT also said a upright MRI might show an abnormality of the neck that a supine MRI does not catch. However - my PCP never heard of it and therefore would not order it. Hopefully your neurologist will be more openminded! 

[Shelby90]

On 10/1/2021 at 5:29 AM, Pistol said:

@Shelby90 I am so, so sorry you are suffering like that. My first thought was: have they checked your D-Dimer level? This test checks for any blood clots. I know the relentless nausea from dysautonomia and sympathize with you! I too couldn't walk or get out of bed for a few years but eventually I improved on meds and other treatments - but that was prior to COVID! 

I used to have a pinched nerve in my neck that the PT said presented exactly like a herniated disk, but a supine MRI di not show anything. I agree with what @KiminOrlando says - my PT also said a upright MRI might show an abnormality of the neck that a supine MRI does not catch. However - my PCP never heard of it and therefore would not order it. Hopefully your neurologist will be more openminded! 

Thank you. And no I haven’t. I’m a little hesitant to ask, considering if I walk in somewhere and ask for a D Dimer they might think I’m a hypochondriac. That’s a great idea though and maybe I should muster up the courage to inquire. 
 

 

I’ll ask my neurologist for an upright MRI. I asked my last neuro about it and she literally ignored what I said. 
 

The nausea is so terrible, my god. I’ve taken like 20 pregnancy tests to be sure because it’s so bad. I was hoping in the back of my mind that I was because at least there’s an explanation and something to look forward to, but nope. Just my body going haywire yet again. 
 

Thank you so much for the advice and kind words. It really means a lot ❤️

[cmep37]

20 hours ago, Shelby90 said:

The nausea is so terrible, my god.

I know exactly where you are coming from - I also have a terrible time with nausea and vomiting due to my high HR stimulating my vagus nerve.  If your PCP won't do anything else to help you 🙄ask them to prescribe Zofran/Ondansetron.  It is a life saver for me - I was losing vast amounts of weight until I started Ondansetron.  It allows me to eat more easily and although I still vomit most days it's now usually only after lunch rather than every single meal!

Has anyone ever mentioned hEDS (hypermobile Ehler Danlos Syndrome) to you?  It's a common cause of POTS/dysautonomia (it's why I suffer from POTS) and might explain why your neck is unstable causing the symptoms you are experiencing.  I agree with everyone else - a supine MRI is unlikely to show much, it's the effects of gravity that you see on a standing MRI that will really let you see if there are any issues. 

Another thought I had was BP - have you ever taken it when you are experiencing symptoms?  I had an adverse reaction to one of my meds and that feeling of intense pressure at the base of my skull, stabbing pains in my head, blurred vision, ringing in my ears was all down to the fact my diastolic BP was extremely high (it was 160/ 100, my normal BP is 100/60).  It's unlikely as you are having symptoms most of the time but an easy one to check off the list!

[toomanyproblems]

Here's some information from a scientific literature review of recent literature from good scientific journals that I did this morning. These numbers may change over time somewhat but it's certainly not going to become even remotely close for blood clots from covid vaccines vs blood clots from covid. 

******************************** 

Blood clots and Covid vaccines:

Bottom line:

*Vaccine associated clots = approximately 1 in 100,000 (0.001%)

Vs

*Covid associated clots = approximately 1 in 4.5 (22%) or in ICU patients 1 in 2.3 patients (43%)

 

More info:

Vaccines can very rarely produce what is called vaccine-induced immune thrombotic thrombocytopenia or (VITT).

Preliminary studies found this rare reaction may be the same as or similar to a rare complication (less than 5% or 1 in 20) of heparin therapy by interaction with platelet factor 4 (PF4) called heparin induced thrombocytopenia (HIT).

Estimates of VITT from all vaccines, with Astra Zenica’s being the highest reported so far, were roughly 1 in 100,000 or 0.001% after vaccination of over 400 million people worldwide.

In a review article published in May 2021 of 12 scientific articles containing 1083 patients included for meta-analysis. The prevalence of thrombosis was 22 % (95 % CI 0.08–0.40) in COVID-19 patients and increased to 43 % (95 % CI 0.29–0.65) after admission to the intensive care unit (ICU)

For reference, according to the NIH, in the general population blood clots occur at a rate of about 1 per 10,000 per year before the fourth decade of life, rising rapidly as one ages to approaching 5–6 per 1,000 per year by age 80.

References:

Thrombotic thrombocytopenia associated with COVID-19 infection or vaccination: Possible paths to platelet factor 4 autoimmunity, Michel Goldman1,* and Cédric Hermans2, PLoS Med. 2021 May; 18(5): e1003648.Published online 2021 May 24

Prevalence and risk factors of thrombotic events on patients with COVID-19: a systematic review and meta‐analysis, Xiaoming Xiong, Jianhua Chi & Qinglei Gao Thrombosis Journal volume 19, Article number: 32 (2021)

SARS-CoV-2 Vaccine–Induced Immune Thrombotic Thrombocytopenia Douglas B. Cines, M.D., and James B. Bussel, M.D. June 10, 2021 N Engl J Med 2021; 384:2254-2256

*These figures were mostly generated before the Delta variant became the prevalent strain, which is considered to be more virulent and could have an even higher incidence of clots associated, whereas the vaccines have not changed, so the 400 million doses the late spring data uses is certainly a large sample unlikely to change those percentages of 1 in 100,000 significantly.  Note that as of the end of September 2021 over 6 trillion doses have been administered worldwide, so while there is not data yet from a sample size of 6 trillion, 400,000,000 is a much larger sample than is used for most analyses of any sort.   

[MikeO]

2 hours ago, toomanyproblems said:

Blood clots and Covid vaccines:

Bottom line:

*Vaccine associated clots = approximately 1 in 100,000 (0.001%)

Vs

*Covid associated clots = approximately 1 in 4.5 (22%) or in ICU patients 1 in 2.3 patients (43%

I agree with this. at some point most of us have taken a vaccine (polio for an example) the new mrna vacs have been in the works for a number of years and are proven safe.

[Guest KiminOrlando]

Until you can get prescription nausea meds, have you tried ginger ale, ginger tea, ginger snaps, candied ginger? Ginger helps me about half of the time. The nausea may be from gastroparesis, so you may need to see a gastroenterologist for a gastric emptying study. They found I had gastroparesis and put me on fabulous meds, but most places won't write for what I take because it isn't FDA approved. 

I hope they figure it out soon. It is a difficult and lengthy process to go through. 

[Saskia]

I had a horrifying reaction to Moderna too. It was very similar and I was told to get the second dose by the smiling "it's okay, it's anxiety" ER doctor. But my team of doctors (and my intuition) said that I absolutely could not. My doctors were terrified of what it would do. I am so so sorry you went through this. You aren't alone.

On 9/30/2021 at 8:11 PM, Rexie said:

You or your PCP or neurologist could report your case to the Vaccine Adverse Event Reporting System (VAERS).

See:  

https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/vaers.html 
https://vaers.hhs.gov/reportevent.html 

Sorry you are having such a horrible time, Shelby90. Maybe you'll be able to get some help or clues through VAERS, 

I'd like to say that this is a good idea but it's just a waste of typing. VAERS is just a reporting system and they do not reach out to help. I reported my awful issues to them too and I could have just written the extended version of the Meow Mix jingle over and over with the same result. Even when doctors report it it is just treated as anecdotal. I have no idea why VAERS exists.

 

[Nelson G.]

  

On 10/2/2021 at 11:33 AM, toomanyproblems said:

Blood clots and Covid vaccines:

Bottom line:

*Vaccine associated clots = approximately 1 in 100,000 (0.001%)

Vs

*Covid associated clots = approximately 1 in 4.5 (22%) or in ICU patients 1 in 2.3 patients (43%)

I've heard recently that is possible that adverse effects,  such as myocarditis,  blood clotting,  and such.  Could be related to how the injection is given.   When giving an intramuscular injection,  there is a small chance, the needle hits a vain,  this injecting the vaccine straight into your blood.  Which is prohibited in most COVID-19 vaccines guidelines.
This could be avoided,  by 'aspirating' the syringe.  If the needle didn't hit a blood vessel,  no blood will be seen in the syringe,  making it safe to proceed with the shot.
Hopefully there is more data available in the near future.

 

Few references:

https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciab707/6353927
https://www.youtube.com/watch?v=nBaIRm4610o

[CallieAndToby]

I can't tolerate any dysatuonomia meds either, they all give me horrible side effects at tiny doses so I understand what that is like. I only got the J&J shot and within 15 minutes I was losing consciousness as well, my vision became double, my eyes were rolling in the back of my head and what I concluded after it took a month to recover is that somehow it greatly affected my immune system. Have they looked into your immune system with lab work etc? May be worth seeing an immunologist and there are neuroimmunologists as well (never seen one). There are some good suggestions like the stand up MRI.

 

[Jyoti]

@Shelby90--I am SO sorry to read of the problems you have as a result of the jab.  What a nightmare.  To be trapped in a body gone even more crazy than you have learned to live with.  I really hope the new neuro is responsive and caring.  You deserve that at very least! And an upright MRI in both flexion and extension as well.  

I had a similar--though much milder---reaction to the booster.   It was Pfizer.  My first was awful, second a non-event and third has been pretty hairy.  I am a month out and while my symptoms do not compare to yours, there are some similarities none-the-less.  Early the day after I got it, my neck, jaw, face, and upper back seized up as tight as I have ever experienced.  To the point that the entire area was numb.  I have been fielding problems relating to that ever since and because all the cranial nerves and the vagus go through the cervical spine, and the muscles around my cervical spine have virtually been in spasm the while, it has been kind of hellish.  I've had nausea,  blurred vision, tachycardia, etc.  One day I feel a tiny bit better and the next ever so much worse.  I wonder when this will improve.  

The reason I am writing is to share one thing --the only thing--that has helped me.  It may be small potatoes, up against the kind of devastation you are contending with, but even if it helps a little bit....might be worth it.  I find that ice calms everything down about 50%.  I use an ice head wrap which covers my neck and the sides of my head, forehead.  I figure if there is inflammation, especially inflammation affecting/crowding nerves, this may give them a fraction more space and me a good deal more functionality, a lot less trouble.  

There are a lot of good suggestions here--I hope one or more of them give you some relief!

Good luck and hang in there.  You are going to get to the other side of this.

[Sushi]

On 10/16/2021 at 11:04 AM, Saskia said:

VAERS is just a reporting system and they do not reach out to help.

I enrolled in V-Safe after my vaccination and they texted me at least once a day and then regularly but less often to check. They say that they will phone if you report adverse symptoms but since I didn’t have them I don’t know if it is true. They were still checking on me months later.

So sorry to hear of the awful reactions that some are getting. I had a much stronger reaction to the booster than the first two (Pfizer). I have been tested by an immunologist and that was helpful as I clearly have some screwy stuff going on there.

15 hours ago, Jyoti said:

And an upright MRI in both flexion and extension as well.  

Agree as there is a growing amount of data on cranial cervical instability and Dysautonomia. There are only a few neurosurgeons, however, who have the expertise to recognize and deal with it.

[maggs]

The person that brought up EDS read my mind! There's a common trifecta with POTS/MCAS/EDS, and that combo would explain a lot of your symptoms I think. You're near me, so I'd highly recommend considering seeing Dr. Peng Chen at Cedar-Sinai (he's their POTS specialist) and Dr. John Fagan at Casa Colina's EDS center in Pomona. You could also purchase a neck brace and see if wearing that helps reduce some of your symptoms. I also agree with checking your blood pressures and pulse laying down and standing to see where you're at with those. 

To clarify, are you able to lay down if it's on your side? Or are you struggling to lay down for any length of time at all? 

I hope you get some helpful advice soon!

[Mom]

Mom replying.  My son (POTS resolved to OH in 2018) got his Pfizer booster today.  Earlier doses caused extreme fatigue and recovery was two weeks. The Pfizer booster caused him a “panic attack” five hours after the jab was given.  Classic symptoms that resolved in 40 min.  He’s hoping that will be it.  The adrenaline rush will cause insomnia probably for a few days.  But then, his sleep pattern has been dysregulated —staying i upp but resting most of the night. Bed I think panic attacks should be renamed.  The term has too many psychological implications for people with dysautonomia who want to be helped. Is there anyone who’s had a similar experience with the booster? Thanks. 

[MomtoGiuliana]

On 12/19/2021 at 2:13 AM, Mom said:

Mom replying.  My son (POTS resolved to OH in 2018) got his Pfizer booster today.  Earlier doses caused extreme fatigue and recovery was two weeks. The Pfizer booster caused him a “panic attack” five hours after the jab was given.  Classic symptoms that resolved in 40 min.  He’s hoping that will be it.  The adrenaline rush will cause insomnia probably for a few days.  But then, his sleep pattern has been dysregulated —staying i upp but resting most of the night. Bed I think panic attacks should be renamed.  The term has too many psychological implications for people with dysautonomia who want to be helped. Is there anyone who’s had a similar experience with the booster? Thanks. 

Sorry he had this reaction.  I agree about "panic attacks".  When I was a lot younger and started having POTS I had these episodes that I can only describe as excess sudden adrenaline.  I was told they were panic attacks.  The strange thing was I wasn't feeling panicked!  But so many drs told me what I was experiencing was a panic attack that I started to believe I had an underlying anxiety disorder.

In any case, I have also had in the past vasovagal response to shots and having blood drawn.  Which can feel a bit like a panic attack I believe.  I wonder if that is what happened to your son possibly (the "panic attack).  Although 5 hours seems like a long delay, I feel this has happened to me before with shots.

[Scout]

On 10/1/2021 at 12:25 PM, Shelby90 said:

I developed a bizarre situation at the base of my skull

I had this exact same feeling after my first Pfizer. It lasted maybe four hours or so and thankfully went away. I also had a POTS flare afterwards, and my specialist said that definitely can happen. So don't let anyone try and tell you "it's just anxiety".