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Hi everyone,
 
My name is Sarah and I've had Dysautonomia for over 10 years though it is quite well controlled on a day-to-day basis. However, I just received the first dose of the Pfizer vaccine and had a bad reaction a few hours later that felt like an autonomic surge: shaking, horrible headache, vomiting, so hot, nausea that lasted for days.
 
I'm nervous (re: terrified) about getting my second dose but having a really hard time finding any doctors who see enough Dysautonomia patients to make a good recommendation. Does 1) Anyone know of a doctor I could consult with on this in the next two weeks (my appt is 3/24)? 2) Anyone know if Dysautonomia International or another entity tracks reactions/has guidance?
 
Thanks so much in advance for any help you can provide.
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This type of reaction is certainly what everyone here fears. 

My neurologist had been on the fence, but just this week advised me that he hadn't been seeing many of these types of reactions. 

Here is a blog on some potential precautions to take for your second dose: 

https://www.healthrising.org/blog/2021/01/03/chronic-fatigue-fibromyalgia-experts-coronavirus-vaccine/

Hopefully this wears off quickly for you. 

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4 hours ago, Sarah91 said:

'm nervous (re: terrified) about getting my second dose but having a really hard time finding any doctors who see enough Dysautonomia patients to make a good recommendation. Does 1) Anyone know of a doctor I could consult with on this in the next two weeks (my appt is 3/24)? 2) Anyone know if Dysautonomia International or another entity tracks reactions/has guidance?

Have you seen Dr. Nancy Klimas’s comments and recommendations? https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html
I have had both doses of Pfizer. After the first I increased my mitigation strategies for the second: I started Zyrtec several days before and took it for about 10 days after as Dr. Klimas felt that subtle mast cell activation could continue for some time and cause an exacerbation of our regular symptoms. I also took higher doses of the supplements she suggested and I greatly increased fluids and electrolytes, drinking a liter of Pedialyte after the vaccination. I also added Epsom salts baths.For whatever reasons my reaction to the second dose was easier than the first—no extreme symptoms but couldn’t peel myself off the couch the next day. 
 

There is a Facebook group for ME/CFS patients to discuss their reactions to the vaccines—most all have dysautonomia. Good luck! After both doses I could tell that my immune system was highly activated for about a week.

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I've had two Pfizer shots, no adverse reactions. Sore shoulder, tired the first time. Fell asleep during the day I had the first one, which isn't typical for me. Felt off a step energy wise after the second. They give out the Moderna where I work and co-workers have an reactions to that. Chills, shakes and fever, but it seems to affect younger folks more than older ones. Funny thing is a couple weeks plus after the second, I woke up with a slight temp, which is unusual for me and the feeling I was getting a cold. By the evening I was ok. I had a COVID test done, negative. We get pulled for tests randomly at work and I've been negative all along. I give blood and I am negative for AB, so that's good. I don't do well with the flu, which preceded some of my problems, so I don't need this. 

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@Sushi Thank you for posting Dr Klimas’s advice. May I ask how severe your MCAS is? I have increased some of my supplements and plan to take Zyrtec anyway but I  think I have a relatively mild form of it. 

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You could check on dysautonomia websites but it’s unlikely there is a lot of research at this stage on dysautonomia and COVID vaccine.  It is a judgement call.  The vaccine makes it unlikely that you will wind up in the hospital or on a ventilator with COVID or that you will get severe COVID symptoms.  To me any temporary vaccine symptoms however harsh would be worth it fir peace of mind, especially because full blown COVID on top of POTS would be really bad.  Even just the worry of going outside or running to the store and possibly contracting Covid causes so much stress, washing hands, social distancing, the inability to see friends and family.  The mental relief will be worth tolerating any vaccine symptoms for me. 

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I'm sorry to hear this. I can't get these shots or any vaccines b/c my immune system is so poor, I get very sick after just the flu shot. My mom is healthy nurse and got covid shots and felt really bad. I don't think enough is known about it. Again, I'm so sorry. It's good that Dr. Klimas has posted some tips, I've seen her colleague a few times but before this pandemic. 

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22 hours ago, Sarah91 said:
Hi everyone,
 
My name is Sarah and I've had Dysautonomia for over 10 years though it is quite well controlled on a day-to-day basis. However, I just received the first dose of the Pfizer vaccine and had a bad reaction a few hours later that felt like an autonomic surge: shaking, horrible headache, vomiting, so hot, nausea that lasted for days.
 
I'm nervous (re: terrified) about getting my second dose but having a really hard time finding any doctors who see enough Dysautonomia patients to make a good recommendation. Does 1) Anyone know of a doctor I could consult with on this in the next two weeks (my appt is 3/24)? 2) Anyone know if Dysautonomia International or another entity tracks reactions/has guidance?
 
Thanks so much in advance for any help you can provide.

Sarah I already posted a response but do you have problems with your immune system like Common Variable Immunodeficiency (CVID)? This is something I have and I can't get these shots. 

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6 hours ago, p8d said:

@Sushi Thank you for posting Dr Klimas’s advice. May I ask how severe your MCAS is? I have increased some of my supplements and plan to take Zyrtec anyway but I  think I have a relatively mild form of it. 

I have very mild MCAS—just a tendency to get hives and itches from food, insect bites and a few medications. I think that Dr. Klimas has been implying that mast cell activation could be behind some of our symptoms that don’t seem to be related to it and that the vaccine had a potential to create mast cell activation for some time after vaccination.

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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.

 

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  • 1 month later...

I had a pretty severe flare after dose #1.  I was actually ok for a day, then a couple days of 'normal' side effects, and then POTS went to town.  I couldn't get out of bed or even sit up in bed for about 8 days.  It was absolutely awful.  

I just saw a cardiologist who is also a dysautonomia specialist who also happens to have a wife with POTS. Since my next shot is scheduled for tomorrow, I asked him if he thought the first round could have provoked such a big reaction and before I could get the words out of my mouth, he was nodding and saying, "Absolutely.'  Now, I haven't seen much from anyone else who had such a huge flare after Pfizer, but I asked him if he had seen it and he responded in an emphatic affirmative and mentioned that his wife had actually had exactly the same reaction.  He encouraged me to go ahead and get #2 (I was not sure how wise it would be) and just to load up on salt and hydration beforehand and be vigilant about water drinking afterwards. 

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1 hour ago, Jyoti said:

I had a pretty severe flare after dose #1.  I was actually ok for a day, then a couple days of 'normal' side effects, and then POTS went to town.  I couldn't get out of bed or even sit up in bed for about 8 days.  It was absolutely awful.  

I just saw a cardiologist who is also a dysautonomia specialist who also happens to have a wife with POTS. Since my next shot is scheduled for tomorrow, I asked him if he thought the first round could have provoked such a big reaction and before I could get the words out of my mouth, he was nodding and saying, "Absolutely.'  Now, I haven't seen much from anyone else who had such a huge flare after Pfizer, but I asked him if he had seen it and he responded in an emphatic affirmative and mentioned that his wife had actually had exactly the same reaction.  He encouraged me to go ahead and get #2 (I was not sure how wise it would be) and just to load up on salt and hydration beforehand and be vigilant about water drinking afterwards. 

My doctors were going to discuss whether or not I should get it done. Thank you for your response. 

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I just had my 2nd dose of Moderna a week ago.  In the first 24-48 hours I had a temp of 101 deg F, body aches, dizziness and fatigue.  This improved rapidly in the 2nd day.  I did not have residual POTS symptoms.  However 4 days after the shot I developed GI pain and severe diarrhea.  I don't know if this was a reaction to the shot or coincidence.  That has now resolved.  I feel like I am not quite back to my "baseline" but I think that is due to the GI upset and not sure what caused it.

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Thanks to everyone posting about this. I had my first Moderna vaccine last month and the second is this coming Sunday. I had increased fatigue and a sore arm for a few days. I increased my supplements per Dr Klimas before the first shot. I spoke to my cardiology NP this week and asked about her dysautonomia patients responses to Covid and the vaccine. This is a clinic that treats 300+ dysautonomia patients and she said that none of the patients that had had Covid have returned to baseline and that she only had one person question a flare induced by the vaccine. 

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1 hour ago, p8d said:

Thanks to everyone posting about this. I had my first Moderna vaccine last month and the second is this coming Sunday. I had increased fatigue and a sore arm for a few days. I increased my supplements per Dr Klimas before the first shot. I spoke to my cardiology NP this week and asked about her dysautonomia patients responses to Covid and the vaccine. This is a clinic that treats 300+ dysautonomia patients and she said that none of the patients that had had Covid have returned to baseline and that she only had one person question a flare induced by the vaccine. 

Good to know. I'm already bed bound and getting worse so I'm really scared. My doctor's want me to get it though. 

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  • 2 weeks later...

Hi, I found this board when doing research for my husband. He has not been formally diagnosed, but has had symptoms of Dysautonomia for years on and off. He had been doing really well until he got the #1 Pfizer 2 weeks ago. Since then symptoms have been severe. He started on Thermotabs today, hoping this helps. He feels like DRs have not believed him in the past and doesn’t know where to turn ?  He is also a Type 1 Diabetic. 

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Hello @NReed2000 - welcome to this forum! -- I am sorry that your husband has such a bad reaction from the shot. You mention he has had dysautonomia symptoms for years - what symptoms has he had? And which symptoms does he have now, after the vaccine? 

5 hours ago, NReed2000 said:

He feels like DRs have not believed him in the past and doesn’t know where to turn

Unfortunately almost every dysautonomia seems to have to go through this - the docs don;t believe that our symptoms are real. It is easier for them to go with what they learned in school: if a patient complains of symptoms you cannot see or prove with labs etc then he/she must be making it up. Very difficult when we suffer from what is called a invisible illness! --- The best way to get a diagnosis for dysautonomia is to see a knowledgeable cardiologist or neurologist, depending on the symptoms and what type of dysautonomia he feels he has ( POTS, NCS, OH, MSA .... ) If his symptoms get worse when standing up he should ask for a Tilt table test. This is usually performed by a cardiologist. Since he is suffering from Diabetes Type 1 he might be affected by a type of neuropathy that can cause dysautonomia symptoms. In that case he of course should see a neurologist. 

If he has symptoms of POTS - is he drinking a lot of water and increasing his salt? I am not sure if he should wear compression hose with the diabetes - you may have to ask the doctor about that. 

I hope you guys find some knowledgeable and compassionate doctors, and I hope that he gets over "the hump" soon! This forum is a good place to ask questions regadring dysautonomia - there are many people here that can share experiences. 

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Just wanted to follow up with the occasional encouraging news: my second Pfizer was almost entirely without side effects.  I am ten days out from it now and really just had a sore arm and slight extra tiredness the day after.  Loads of water and salt.  Beyond even the prodigious amounts we must usually take.

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31 minutes ago, Jyoti said:

Just wanted to follow up with the occasional encouraging news: my second Pfizer was almost entirely without side effects.  I am ten days out from it now and really just had a sore arm and slight extra tiredness the day after.  Loads of water and salt.  Beyond even the prodigious amounts we must usually take.

That's good news. Congrats. 

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My daughter just informed me that a friend of hers ( highschool junior ) had her second shot and had a reaction that sounds like POTS. She could not get up out of bed without her heart racing, getting dizzy and she felt extremely achy and fatigued. She never had felt like that before, ever! Luckily it only lasted 2 days and she was fine. Still - I was surprised about the POTS-like symptoms!

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On 4/24/2021 at 3:04 PM, NReed2000 said:

Hi, I found this board when doing research for my husband. He has not been formally diagnosed, but has had symptoms of Dysautonomia for years on and off. He had been doing really well until he got the #1 Pfizer 2 weeks ago. Since then symptoms have been severe. He started on Thermotabs today, hoping this helps. He feels like DRs have not believed him in the past and doesn’t know where to turn ?  He is also a Type 1 Diabetic. 

Dinet has a doctors list on the website.  If you can connect with a  good doctor experienced in treating POTS patients, he will find improvement.  Good luck!

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I had my second Moderna shot almost two weeks ago now. I had a headache the day of and the next day, fatigue, malaise, probably a low grade fever (I didn’t check) for a couple of days but almost exactly 48 hours after the shot I was feeling better. The third morning I was back to my normal. No flare in dysautonomia symptoms except a very slightly higher HR (10 bpm above my usual upright) during the first 48 hours. I have healthy family members who had worse reactions. All my specialists recommended it and I followed their advice.

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7 hours ago, p8d said:

No flare in dysautonomia symptoms except a very slightly higher HR (10 bpm above my usual upright) during the first 48 hours. I have healthy family members who had worse reactions. All my specialists recommended it and I followed their advice.

This is fantastic to hear, P8d!   It feels great, doesn't it, to be on the other side of #2.  I am so grateful that I and many others have gotten here.  You now too!

 

On 4/16/2021 at 12:44 PM, p8d said:

I spoke to my cardiology NP this week and asked about her dysautonomia patients responses to Covid and the vaccine. This is a clinic that treats 300+ dysautonomia patients and she said that none of the patients that had had Covid have returned to baseline and that she only had one person question a flare induced by the vaccine. 

This was so helpful for me to read.  I also came upon some information from MEAction today that I thought I would add to the picture that is emerging.  I know that many of us here do not have ME, but some do and I think there is enough overlap in our symptoms (thanks Peter Rowe!) to justify sharing here:

Quote

The initial findings, based on the first 220 responses, show clearly that Covid-19 had a significant impact on respondents. Over three quarters of the respondents said that Covid-19 made their ME symptoms worse. This impact appears to be long lasting, with over two thirds of respondents reporting that the worsening in symptoms has lasted more than 6 months and have still not resolved.  Not only have existing symptoms worsened, but over 70% of respondents reported that they had developed new symptoms, including  shortness of breath, chest pain and dizziness. 

Obviously, we all have to consider our own risk factors and discuss with healthcare providers and family what feels right for us, but unfortunately we are definitely in a position that is between a rock and a hard place with this one.

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