Covid vaccine neurological adverse reactions?

[cathy54321]

Hi, over 10 years ago i had a terrible adverse reaction from the H1N1 vaccine. It was the worst time of my life. I am looking for anyone who could help guide me in terms of if you have had bad reactions to previous vaccines and gotten vaccinated for Covid and are ok or if you have had bad tingling or numbness or been debilitated by the Covid vaccine. Any and all help/input is appreciated.
Thank You,
Cathy

[lindac790]

Hi Cathy, I was part of this community back in 2009 and like you, I suffered with neurological issues that have taken years to go away. I am also petrified of the vaccine and petrified of Covid. This is a very hard decision to make and Iam trying to do as much research as I can.  

[cathy54321]

OMG Hi! I remember you so well Linda! Let's reconnect  - I will write to you! I must confess that I was searching for the old gang to see what they had decided or if they were like me - very very lost and scared.  I will write you now :)

[Paxiled]

In my experience, Cathy, having been here a long time, is that the "old gang" is mostly long gone.  The site has gone though a large change in participants with just a couple of long-timers still here.  Peace.

[Francy66]

Hi girls! I am so happy I have found some of you "2009 tinglers" here back again! I haven't taken the Covid vaccine yet because of the bad experience with the H1N1 flu shot, I am so scared and nobody can understand my fears and worries. I know that another member of our old forum, Coriecl, has already taken both shots (she works in a hospital) and apparently everything went OK for her this time. I'll try to contact her and bring her back in Medhelp so that she can explain her experience by herself.

[MyriadofSymptoms]

Hi Everyone! I wanted to let you all k is that this Sunday will be 2 weeks post Moderna shot and I have had no issues at all. I felt a little tired after my first one but nothing really. I felt achy the evening after my second shot on Oct 3rd. Had weird chills the next day but nothing neurological at all! I hope this helps. I’ll update in a few more weeks. Stay safe everyone!

[AnnieBrooke]

Myriad, that's great. It went the same way for me. Not that I had NO response but it was not a big deal.

[Maddie628]

My son is 47 and was in perfect health before Covid vaccines in MArch. Body builder,healthy all the way around, yoga,runner. Now, he is in month 6 of debilitating tremors and electrical sensations, dizzy, you name it. We’re frightened and pray this will end. I will not be getting any more vaccines of any kind,ever.I have never seen a healthy person become so debilitated so fast. He has had to move back home and is barely about to work, from home. Neruo,cardio, PCP all stumped. All tests WNL.

[MyriadofSymptoms]

Maddie I’m so sorry to hear about your son. His symptoms seem exactly what most of us here on this forum have experienced. There is hope! I was like that for over a year but finally got better. I thought I was dying and never thought I’d be normal again. It seems to be random that sometimes a vaccine makes a person’s immune system go crazy. In all of my research, it isn’t only the covid vaccines. My issues started after taking the swine flu (H1N1) vaccine 11 yrs ago. From my understanding, the electrical shooting pains and vibrations are from the nerves being over stimulated and trying to regenerate. I had that same dizziness with brain vibrations (same as some others here) Praying for your son and your family to get through this. Take care and please keep us updated. I received my first Moderna shot 4 days ago and so far no problems. Which manufacturer did he receive? Pfizer? J&J, Moderna?

[cathy54321]

Hi Maddie, sorry to hear about your son. I have been there too. Worst time of my life. Also for H1N1 vaccine. All the same symptoms and as you can tell from Myriad of Symptoms post, we all had..well a myriad of symptoms.
Perhaps you could direct him to our previous group? We have many many people who went though this with the H1N1  flu vaccine. In had all the symptoms of your son. I had many others too but the internal tremors, numb body and pain and tingling plus severe malaise was terrible. He should take a look, he could join the group as a moderator I will approve and he can read and know he is not alone.

MoS so happy you have not had any issues with the vaccine. This is AMAZING! You must feel so relieved. It gives me hope. What a load of your shoulders. XOXO

[MyriadofSymptoms]

Wanted to check in to let everyone know that I am now more than a month past receiving my 2nd Moderna shot and all is fine! I haven't had any issues at all! I'm so, so grateful!

[MikeyMousesExWife]

Hi cathy54321 I did get the 2nd Moderna vaccine 2 weeks ago. Yup, I've got the tingling. Just not as bad as 2009 with H1N1. In 2009, I also had many many other side effects that kept me in bed for months and had difficulty walking, etc. Stay tuned....

[cathy54321]

Hi so happy to reconnect with you. Gosh I hope the tingling is short lived. You are so brave, to have gone through with it. Did you speak with any medical folks or specialists to help make your decision? I replied to your email and am so so so happy to hear from you. You were such a fundamental part of the group and helped us all so much. So we have LindaAC, Myriad of Symptoms, me and now you old friend...MickeyMousesExWife lol...that's hilarious. Imagine after all these years...I am praying that your symptoms are very short lived. I live in fear most of the time with this Delta...i am researching all kinds of ways to find a safe way to be vaccinated.
XOXO
Cathy

[MyriadofSymptoms]

I got the Moderna shot this afternoon! No problems as of now but I’m frightened about the days  ahead. My arm is sore. I got in in my right arm this time. The swine flu vaccine that screwed me up 11 yrs ago was in my left arm but it was my right arm that had most of the problems; torturous electrical shooting pains, neck and shoulder issues. From my research back then it seemed to be brachial neuritis.  I still to this day have involuntary ‘clicks’ when  I’m working on the computer.  Hoping for an uneventful next few months!

[MikeyMousesExWife]

Hi,Cathy, I sent you an email back :) Mikey MousesExWife is in dishonour of my ex-husband who did not treat me very well when I was sick from the H1N1 vaccine. I think he bloody well thinks I made it up that I was sick! Of course, many doctors were not helpful and even supported his narrative when he brought me to the ER (although, I had tremors and couldn't stand properly). You know the "hysterical woman" labeling??  This is the seething anger that I have at the medical/vaccine community....not acknowledging vaccine-injured people or supporting them properly when they are!   I'm a health care worker too!! so I had no choice in getting the vaccine unless I quit my job. Although,  my doctor and head nurse tried to reassure me that this was a different vaccine than the H1N1. I did fine with the first Moderna vaccine (just a little tired and I had the covid arm)...but the 2nd one I started to get the tingling in the feet & hands 4 days later. It sort of comes and goes. 14 days have passed now and I have to take Ativan off and on to deal with the anxiety. I'm also trying the nutritional support with vitamins, herbal inflammation remedies, etc that the naturopath prescribed me in 2009 (thank goodness for her support through that ordeal!). I know the dilemma/the fear that you are going through, Cathy. I also delayed and ruminated about the Covid vaccine as long as I possibly could. I don't think there are any easy answers or guarantees, unfortunately. It's my understanding, that our immune systems go haywire or over-react to vaccines. I am glad that you recovered from one of the worst reactions to the H1N1; however!!!

My mom wanted me to not tell you the truth that I was tingling. She wanted me to tell you that I was 100% okay. But having been through a similar trauma as you in 2009, I could not. I wanted to be truthful with you and see where this goes from here....so if you decide to get the vaccines and you get the tingling too...that you are not alone. In fact, there are other people posting on vestibular.org and reddit (covid vaccinated)with similar tingling in their extremities....some say that it went away in 6-8 weeks.

Myriad: I'm with you here too!

[cathy54321]

Myriad and Mickey AKA Corie lol..! YAY! I am so happy for you! You are so brave to face this and act - wow incredible courage in the face of what we went through. I am hoping that you continue to feel good and know that despite a terrible experience in the past, you are able to face the future. I am slightly overwhelmed that we have all made contact again - it is such a blessing honestly. Talk about being bonded by serious adversity. Please let's start a new group or re-boot the old one? We are all still members and could go there to discuss and stay on touch. I truly am sending positive vibes to you and good energy and hope you both continue to feel good! What a triumph it will be.

Mickey/Corie - I am so thankful for you. And your truth. I share your frustration about how we did the right thing but did not receive support when we experienced an injury - we need to be helped and heard and studied to help us be able to be safely vaccinated in the future.  I am glad you are following the protocols - how about that infusion you received from your naturopath the last time?

I can understand why your mom would want you to not say the truth - this pandemic is so scary and I am sure she wants people to be safe. But your truth means the world to me - I do need to know. I am grateful to know. The truth makes us stronger and sets us free - even if it is a bit scary. So thank you so much for telling me about your experience.

I think we should move this over to the old forum or maybe start a new one? I will ask Emily what she thinks we should do - maybe since there are still so many members from the last group, we move over there to stay in touch? I really really want to have a place for us to talk.  What do you think? Francy will happily join there as well - I told her I would let her know.

Love and health to all.

Cathy

[MikeyMousesExWife]

Sorry, if I'm delayed in my replies....I just started in a new position....and of course, while exciting, it's also draining. Cathy: we were all so grateful for YOU!!! You started the whole forum and kept us talking to each other at our darkest moments.  I thought I was going to die at one point (and some people do: just look up gardasil girls!). Vaccines while miraculous also have their collateral damage victims. It was a horrible time. Thank you for appreciating me telling you the truth! I know my mom means well, but she's never experienced a bad vaccine reaction either! I'm doing better today actually. I'm following this protocol (which is similar to my naturopath's from 2009): https://covid19criticalcare.com/wp-content/uploads/2021/06/FLCCC-Alliance-I-RECOVER-Management-Protocol-for-Long-Haul-COVID-19-Syndrome.pdf....I didn't do the invermectin or the prednisone....I have been doing the repolarization therapy part & the First Line therapy. Maybe that's what's keeping me at a tingling level and not the rest of the neurological symptoms that I had before???  I don't mind what you choose as a forum :)

[MikeyMousesExWife]

Oh and I take a B-complex vitamin, Magnesium citrate drink, an Ashwaganda tonic and an inflammation herbal pill on top of this protocol. Apparently this protocol is for Covid long-haulers and people with post-vaccine inflammation syndrome....

[Paxiled]

I would strongly discourage anyone from following any recommendations by the FLCCC.  It's not a thing.  It was created by 3 docs who are using drugs that have not been proven effective and some that are harmful.  Ivermectin is a de-worming product that has not been found to have any positive effects but has had some very negative ones.  I also looked at the other things they're using and again, these are very likely quacks.  There is no proof behind what they're doing.  Nobody can say for certain at this point, but again, wouldn't take anything they're recommending other than the harmless Vitamin C.  Be careful out there, folks, the internet is full of stuff by people who are conspiracy theorists who have no proof for what they're doing.  If what they recommend is harmless or has other benefits, no big deal, but if some of what they are recommending does have harm for some or many, again, be very very careful.

[MikeyMousesExWife]

Thank you for your concern. However, when I was vaccine-injured 12 years ago, it was these very types of doctors that think "outside of the box" that assisted me to recovery. Why wasn't the regular medical community able to? Ummm...too busy denying vaccine injuries or at a complete lost what to do with me. As a hospital health care professional myself, I know the miraculous ways of western medicine. I also know it's limitations too, especially when it comes to auto-immune disorders. That's where alternative/naturopathic doctors can do their best work. Yes, it's good to be cautious as there are shoddy physicians (as they are human and not infallible) and they can be found in every field. Every nurse in a hospital can tell you which surgeons to go to and which ones to stay away from. I think it's unfortunate that allopathic and naturopathic practitioners do not work together in the best interests of patients. That would truly be the best patient care model.

[Paxiled]

I don't disagree.  The doctors you are mentioning aren't trained natural medicine physicians.  They are conspiracy theorists and Trumpies.  There was actually a small article about this in the Washington Post today, where one of the doctors who formed this group to spread misinformation was treating a patient who was on a ventilator who he had never even seen with Ivermectin, which isn't a natural remedy, it's a de-worming drug.  The Predisone is a corico-steroid, and if used regularly will adversely affect the immune system which I would think wouldn't be the thing to do with someone trying to recover from a severe disease.  Thinking outside the box is one thing; intentionally spreading info based on a right wing political movement is quite another.  My concern isn't for you, you're free to do what you wish, it's for others reading this so they don't get mislead.  As for your problem, for example, I have no idea why you're taking the ashwagandha unless you are having some adrenal gland problems.  The B supplement might help, but if you take a lot of different things with B6 in it you might have a B6 neuropathy problem.  Whatever form of medicine you choose to use you want to know what you're doing.  Ivermectin also can interfere with other meds people are on.  This drug is only known to anyone other than large animal vets because of conspiracy theorists and talk radio hosts, and some are taking the veterinary form of it which is way too much for humans and are getting really ill from it at a time when docs are so swamped with covid patients they don't have time for this kind of nonsense.  I use a lot of natural medicine so I'm not at all opposed to it, though I don't know what's actually happening with you and if you don't know what's happening you really can't recommend anything to take for it natural or otherwise.  But if it is a nerve problem, which seems to be your conclusion, the main herb used for that is St. John's Wort, which is also used in homeopathic form, and the main mineral would be magnesium.  But Ashwagandha is used for the nervous system, which is different from the physical nerves and more for mental issues.  I take it, so don't think I'm at all opposed to what you're doing.  My point was, you directed others to a website that belongs to an organization that consists of a couple of conspiracy theorist doctors and that's my warning to others.  As I said, you get to do whatever suits you.  Peace.

[shadowmed]

Hello, I am sorry to hear about your bad reaction to the H1N1 vaccine.  That was the flu vaccine of course.

I know some people have had bad reactions to the Covid vaccines and some have had no reaction.  There have been occasional extremely rare, life-threatening reactions which have caused blood clotting.  

I have had two doses of the AstraZenica vaccine now.  I have had no side-effects except for a slight - and I mean slight - tenderness at the injection site.  I was actually amazed at how unaffected I was and it made me wonder if they had really given me the vaccine.  However, I do trust the NHS so I'm pretty sure they did.

A family member has had one dose of the Pfizer vaccine and is fine so far, no side-effects.

Many of us have had multiple childhood vaccines and are still here without any obvious, long-term effects - e.g. TB, smallpox, Tetanus, Typhoid, Rubella, Diptheria, Whooping Cough, Measles, Mumps, Meningitis.  Have you had any of those and do you know if you had bad reactions to them?  It seems odd just having a reaction to the flu vaccine though I am not denying it happened.

It is difficult as people seem to be affected differently.  There seems to be no 'one rule for all' as far as side-effects are concerned.  One thing I can say with absolute conviction is that Covid itself is very serious, very real, and very dangerous.  I have lost my father and a sibling to Covid and I would never want anyone else's family to go through this.  I suspect that while vaccines are a bit of a lottery (though millions have had them safely now) Covid itself is very serious and a death sentence for many.

It's just not a good idea to wait around if you can possibly help it.  I say this while appreciating that if you've had a bad reaction in the past, this would not be an easy decision for you.

[cathy54321]

Thank you for your comments and I am so sorry for your loss. The wrath of Covid is so scary. Please accept all my sincere condolences.
I get what you are saying. And yes I had childhood vaccinations and never had another one until the H1N1 vacc. I hope you can understand that I was very very ill and yes it was from the vaccine. When you say it seems odd that it happened, I kinda sense the exact doubt that makes me sonewhat angry. I was hospitalized with GBS. It was serious.
I wish with all my heart there was a solution for someone like me. I am searching for this.

Thank you for taking the time.
Cathy

[shadowmed]

You are most welcome, Cathy, and thank you for your condolences.

I do appreciate you were very ill.  GBS is serious.  It must have been very scary.

I don't think anyone is going to know for sure what would happen if you had the Covid vaccine.  In a way, this is an impossible question because everyone is different.  I know that my nephew, who suffers from brittle asthma and allergies was very worried about getting the vaccine.  He wanted to have it, given that he has lost a parent to Covid.  He asked various health experts and found that, really, no-one knows for sure.  He had the AstraZenica vaccine twice and was fine.

It's good that you haven't had bad reactions to other vaccines.

I wish you well in your deliberations and hope things work out well for you.

[MyriadofSymptoms]

My primary and neuro dr. both advised me to (months ago) to 'wait and see' what reactions are for others before I jump into it. GBS and other neuro conditions such as CIDP are extremely dangerous causing paralysis and death. In 1976, the swine flu vaccine killed and maimed more people than the actual virus did (my neuroro in Washington, DC advised me of this back in 2010 during the worst of my 2 years of suffering)

https://www.smithsonianmag.com/smart-news/long-shadow-1976-swine-flu-vaccine-fiasco-180961994/

For more education on the severity of GBS, 60 minutes did a piece in 1976 after those horrific deaths and paralysis cases. It can be found on YouTube:

https://www.youtube.com/watch?v=4bOHYZhL0WQ

I most definitely want to take the vaccine (either Moderna or Pfizer) as I'm terrified of COVID but there have been a great deal more GBS-type side effects reported on the VAERS website than in with J&J so that is my concern. But yet the "warning" was put out about only J&J.

Please, if anyone else has had GBS, CIDP or similar, did you take the COVID vaccine and if so, how are you now?
Looking for any help.
Thank you all.

[AnnieBrooke]

Robertaholmes and cmedo, just above in this thread, both reported their results from taking a Covid vaccine after having had GBS.

[cathy54321]

Hi there I just sent you a message to your inbox MoS. Been awhile since 2010.
Glad to reconnect after all this time.
Cathy

[Paxiled]

The VAERS website isn't an accurate place to get info.  My understanding is the major side effects with Moderna and BioNTech are muscle pain and feeling sick and fatigued for a day or two, but that can add up to a lot of complaints and make it look a lot worse if there's no commentary or evaluation of what's actually happening out there.  It's a pickle for some, that's for sure.

[Paxiled]

By the way, that Smithsonian article doesn't say what the above post indicated.  The flu caused a lot more cases of GBS than the vaccine did.  The vaccine did definitely cause extra cases of it, but so does the flu and many other diseases and infections.  While that particular flu year didn't turn out to be what was feared, again, there was a flu that year and later years and caused many more cases of this problem than the vaccine did.  The problem was, the vaccine didn't need to be given  because the swine flu of that year didn't turn out to be an epidemic, but it also didn't disappear and kept causing illness and cases of GBS.  So even with this being a bad idea that year driven by politics perhaps, it was still safer than getting the flu.  In either case, GBS is quite rare, but that's never any consolation to those who do get it.  Few of those die and the vast majority completely recover.  But again, that's no consolation to those who don't.  

[Emily_MHManager]

Hey everyone -

I have deleted several posts. Cathy asked about neuro side effects. Please stay on that topic.

Thanks.

[Paxiled]

I don't know Em, this stuff is all over the net and conservative media, and if we just delete it and the responses, does anyone learn that this stuff isn't true?  Anyway, that's a lot of time wasted.  Sigh.

[Emily_MHManager]

Cathy wasn't asking about the stuff on conservative or liberal media. She was asking about her response in the past, and what might happen today. She wasn't asking about treatments, the FDA approval process, etc., etc.

It's off-topic, Pax. We need you all to stay on topic.

Thanks.

[cmedo]

Yes, I had Guillain Barre in 1999 and was hospitalized for one month and full recovery took one year. My symptoms began about 3 weeks after receiving the flue vaccine. I had a full recovery without any residual problems. I asked my primary care doctor if I should receive the COVID-19 vaccine plus I read online. The recommendations were to take the vaccine. I had the Moderna vaccine in Feb/Mar without any problems. Just a few days ago I read that the J&J vaccine has reported a number of people having GB symptoms after receiving the vaccine.

[cathy54321]

Hi thanks so much for your response. You are so brave. We have a similar story. I am really in awe of how brave you are to do this after what you went through. There are many of us who have the same experience. I am so happy for you. I am not as brave as you. The mere thought of even remotely reliving what I went through produces post trauma response for me. However, I wish I could get the vaccine so badly. Can I for just one minute complain? This really sucks. I am terrified of the delta, terrified of the vacc and feel without any options. Why can't they help people like us? Why do in have to risk everything to want to be protected. Man....sorry. I know others have terrible health issues and terminal diagnoses.
I am very grateful for these responses.
Thank You.
Cathy

[Paxiled]

Unfortunately, the practice of medicine isn't full of known things, it's full of probabilities and educated guesses.  It is what it is.  You've spoken to your regular doc, I assume, but have you tried to contact an immunolgist or virologist or vaccineologist?  A ton of them have appeared on TV during this whole mess and become small celebrities, and I'm sure they get a ton of questions.  Maybe they get this one.  My hope is that the mRNA vaccines are so different from anything you've had before that it wouldn't cause this.  But you'd have to take a risk doing it.  Best you can do is collect as much info as you can, assess your risk tolerance, and then decide.  My wife's father is quite elderly and won't get a vaccine because he had a very bad reaction to one vaccine, but he's had a ton of them and only one gave him a problem.  This is, as you can imagine, a touchy subject in my house.  All the best.

[cathy54321]

Thank you. Yes you are so right. Probabilities and educated guesses. And yes I am researching like crazy to try and find one of the specialists you mention. Honestly I am ok with my doctors decision for now because the ptsd was too much. I was so stressed. My illness was so long and I healed so slowly. I lost everything back then so now I am able to work from home permanently and can take a moment to actually try and seek out a medical professional that may be able to help me understand more. Ya know Paxiled, I understand your father in law. I really do. It just takes one adverse reaction to scare the crap out of you. Once it starts you are on a scary ride that does not stop. Day in day out and never abating. It's alot. Mentally physically and emotionally. I also understand it being a touchy subject too. For sure.
All the best to you too! G'nite!

[Paxiled]

I try to keep my mouth shut, but I can't say I'm not worried when my wife goes to visit.  She's fully vaccinated, but that's not a guarantee she can't get it or can't give it.  I do worry she will give it to him without knowing she has it because she has been vaccinated and won't know she got exposed and will feel that guilt, and I also fear him giving it to her and having her bring it home to me.  Then again, she's out lunching and dinnering with her friends again, and even though it's outside, as long as so many in the world are unvaccinated the virus has plenty of food to eat and keeps mutating.  Your problem could be solved if all the rest of us who don't have a problem get the darned vax and starve the virus, but too many either can't or won't get vaccinated.  If we all did, you wouldn't have as great a need to.  Peace.

[robertaholmes]

In 2013 I got the flu and shingles vaccination developed Guienne Barre. I have not completely recoved. Very reluctant to get another vaccination, I looked at the risk reward ratio and got the Medurna vaccinations. I did fine with no side effects.

[cathy54321]

Wow that's AMAZING. I am so happy for you! Maybe there could be hope for me and the folks who have had adverse reactions. Thank you for your answer. I really appreciate it.

[MyriadofSymptoms]

HI Cathy, I too had extreme neurological issues following the H1N1 vaccine back in January 2010. I didn't recover for nearly 2 years. It was the worst time of my life and thought I was dying or had ALS since no doctors could figure out what was wrong with me. I was never officially diagnosed with GBS because they were stuck on the fact that I still had reflexes. Finally one of the many neurologists I saw did say that my issues were most likely due to the vaccine. From all of my research, my symptoms seemed more to be CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
So, I am terrified of taking the COVID vaccine. When all of this started I hoped that the mRNA vaccines would be different and I would be able to take it but I have read many reactions on the VAERS website even from some that took Pfizer and Moderna and had GBS symptoms. I also have searched Twitter and there too, I've found people who got GBS following the mRNA vaccines, so I don't know what to do.
Can you let me know what you decided on? And if you did take one, did it effect you neurologically?

[Paxiled]

I will say, Twitter and other websites aren't necessarily giving accurate info, especially given the very well funded and organized right wing campaign to make sure we all get covid and die.  Don't know why that happened, but I haven't personally heard that the mRNA vaccines are having this effect much, though I'm sure like all medication some people are getting really bad side effects.  I have hard it happening with J&J and AstraZeneca.  Doesn't mean it isn't happening, just that I haven't heard it from the experts I see and hear interviewed on a daily basis and from the news I read.  But in the poster's case, she was informed by her doc not to get a covid vaccine to be safe, and I'm guessing you might therefore get the same advice.  The problem with covid is, it is much more likely to produce these kinds of things than the vaccine, which makes it a tougher decision to make.  I hope it works out for you.

[MyriadofSymptoms]

Hi Paxiled - Thanks for you input : )  I truly appreciate any info I can get from others.

[cathy54321]

Hi!!!! MoS we used to talk regularly on the swine flu vaccine community. I managed it and remember you very well. We had such similar symptoms. I am so happy to find you again! Since we both have the same history and experience, it is so hard to know what to do. After a detailed discussion with my doctor she said no for me at this time. There is not enough data at this point. I have been sitting with this decision for about a month now. So scared of the delta. Pro vaccine and wish I was not like this. It sucks. I wish they could help us more, since I would take it gladly if I could be assured that I would not relive the total nightmare of GBS.
Do you want  to talk privately? I will message you. So glad to find you after all this time.
Cathy

[robertaholmes]

Please remember GBS can have hyperflexia, small percentage but still clinical significant. Mine presented with hyperflexia. Don't get caught up in the standard of care model so many incompetent physicians follow religiously. Rare but still occurs.

[robertaholmes]

I had GBS with HYPERFLEXIA. It's rare but it DOES HAPPEN. I don't think GBS is as rare as what they attempt to present. This blog has way too many for a 1 in a million occurance. I just wish I could have gotten reimbursement for my almost a decade of medical expenses. It removed many years of quality life. Sick of being penalized for doing the right thing.

[cathy54321]

@robertaholmes boy do I hear you. And I agree 100 % it goes so under reported. They say it is rare but we are real. We are real people that this happened to and there should be a safe way to get treatment. It's so frustrating. I went broke trying to fix myself and had to work again while I was still sick. It was horrible. I never want to go through that again. Ever. Thanks for writing in. Appreciate  you voice.
Cathy

[Paxiled]

When they say something is rare you have to consider they are balancing it against the vast numbers of people who get vaccinated.  In that comparison it is in fact really really really rare but if you vaccinate millions every year with the flu vaccine that one in a million adds up to more than a few people.  But still, the vast majority of cases of this horrible thing happens when people get the flu or other infections, not from vaccines.  Which makes it a really harder choice because the thing you're being vaccinated against is much more likely to cause it statistically than a vaccine, except perhaps for someone who already got it from a vaccine if they use a vaccine that is similar in materials and action.  

[MyriadofSymptoms]

Dear Cathy et al.
I have made the decision to take the Moderna vaccine tomorrow afternoon. I am so terrified of Delta and whatever else may come from this COVID crap so I am taking the plunge. I will let you all know how it goes.

I will have a final session with my psychologist in the morning. I began seeing her 11 years ago specifically to get some guidance on how to deal with my anxiety following the swine flu vaccine that gave me so many bizarre neuro problems that no doctor could explain.

I chose Moderna over Pfizer because my family and most friends took Moderna which makes me feel more comfortable. Also, in my research this time around, I have come across a great deal more problems happening after the Pfizer vaccine rather than Moderna so that helps ease my mind a little as well.
Positive vibes needed tomorrow. Wish me luck!

[AnnieBrooke]

Good luck! I had Moderna and did fine. Sore arm, a bit tired for a day, and that was it.

[Paxiled]

I had Moderna, and am glad I did as it is now showing to be the most effective vaccine out there including against the delta variant and earliest results is showing it is maintaining it's effectiveness much better than the Pfizer/BioNTech.  All I got was a sore arm for a couple of days after the first shot and much less the 2d shot.  My wife did get really tired and slept the whole day after both shots.  Nothing more than that for us, though.  It'll be fine.

[MyriadofSymptoms]

Thank you, Pax! Even more promising news that makes me more confident! I will update everyone as soon as I can. Have a nice holiday, everyone  :)

[auntiejessi]

I got Moderna, and had flu-like symptoms for a few days both times. Still totally worth it, and much easier than if I'd had covid. :)

[MyriadofSymptoms]

I also didn’t mentioned that Had COVID back around Thanksgiving. Nothing major happened other than horrendous head pressure for a few days and lost taste and smell but otherwise, I was lucky enough to have had no breathing issues at all. I’m wondering if the fact that I’ve had it will change how I react to the vaccine. Have any of you had COVID?

[cathy54321]

MoS, you are my hero. Totally. Sending you great positive vibes for an awesome experience. Please do keep us posted and please message me as your experience is so important to me. Your bravery is to be commended, I wish you could recieve a medal! And already having Covid on top of it. Like I said, my hero!
XOXO
Cathy

[AnnieBrooke]

Specialmom had Covid before she got vaccinated for it. She said it was not much of a big deal to get the shots.

[Emily_MHManager]

Did you get your adverse reaction to the H1N1 diagnosed as anything, like Guillain-Barre Syndrome?

The H1N1 vaccine is a totally different type of vaccine than the Pfizer and Moderna vaccines, which are mRNA vaccines, the first of their kind. The CDC says that those who've had GBS in the past, if that's what you had, can get the vaccine, but still, you should talk to your doctor about the risks for you, personally.

https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/underlying-conditions.html#:~:text=Guillain%2DBarre%20syndrome%20(GBS),COVID%2D19%20vaccine%20clinical%20trials.

[cathy54321]

Hi Emily, thank you so much for your response. Yes, I GBS and was hospitalized. It took me about 18 months to recover. Yes I did see that and have been doing extensive research. I was a part of a previous community here back in 2009. I am still the moderator for that group.
I am searching and trying to find help to have this vaccine safely delivered and see if anyone else has experienced to share.
I thank you very much.
Cathy

[Paxiled]

This is more understandable.  That's a pretty bad complication to get.  It's also one that was particularly associated with that particular vaccine, which I didn't get.  It appears to be most linked to tetanus and flu vaccines, and mostly to older vaccines.  Nowadays it's not much associated with vaccines, as science has adapted.  Doesn't mean never, but it means it was quite rare when you got it and a lot more rare now.  I think you're wise to explore this fully with your docs.  But something interesting I just read from the British health service said that there are more cases of GBS associated with having the flu and other infections than getting the vaccine, which just goes to show, life is pretty dicey.  Whatever you choose will be understandable, but given the little I just read, I'm guessing covid is way more likely to give you horrific complications than any vaccine out there for it.  I'd probably ask your doc about the RNA vaccines.  I mean, maybe those of us who got them in a year or so will have weird stuff happen, who knows, but a ton of people have gotten them and they're just not like any other vaccine that ever existed so if I were in your shoes and decided to take the plunge, I'd probably go for the Moderna or BioNTech.  But I get it now.  Life is just hard.  Peace.

[cathy54321]

Paxiled,
Thank you so much for your reply. I really appreciate it.  Again, the folks on MedHelp have been my lifeline in the past and I am just as grateful now. I am building my risk assessment as best I can. It is unbelievable hard. But yet I have glimmers of hope that maybe just maybe this could be possible for me. I am pro vacc and my daughter had all hers growing up. I have researched everything from anti body therapy to microdosing vaccines lol...trying to find anything that could be an option for someone like me.

Thank you so much for researching into this and taking the time to answer again. The fact that you would do that means so much to me. I agree with everything you say about this dreaded beast. I am in Montreal and we are just coming out of months of severe lockdown and curfews.
So Yes, while life can be hard, people are good. Appreciate you Paxiled.

Cathy

[Paxiled]

Don't know what you've decided to do, but it has just come out that the J&J vax is causing some rare cases of neurological disease, so you'd probably want to avoid that one and get one of the mRNA ones (Moderna and BioNTech/Pfizer).  

[AnnieBrooke]

It's Guillain-Barre syndrome, the very illness she got from the H1N1 shot ten years ago. The numbers of cases are tiny -- 100 cases of GBS out of 12.8 million J&J shots administered (in the U.S.).  And since thousands of people get GBS every year from other causes (having nothing to do with vaccines), they're analyzing this as correlation rather than causation. But no similar GBS effect been reported after people get the Moderna and Pfizer versions of the Covid vaccine, which must mean that in her case that her doctor will recommend one of the mRNA vaccines over the J&J.

[Emily_MHManager]

Yes, it's GBS. I'd hope your doctors recommend the mRNA vaccines, Cathy.

https://www.cnn.com/2021/07/12/health/johnson-vaccine-guillain-barre-syndrome-fda/index.html

[Paxiled]

Yes, it is GBS, and they are analyzing them as causation, not correlation, so it's the other way around, Annie.  But of course they don't know for sure and probably, given the small number, won't know for certain, but if it wasn't for the belief it was causation it wouldn't have been mentioned at all by anyone.  It's not unusual for vaccines formed from dead viruses to cause very small numbers of GBS, but it's a pickle to be in for susceptible people because as you said, getting the flu or covid or a bacterial infection brings this on far more often than any vaccine.  Sometimes folks just have really bad luck.  

[AnnieBrooke]

"Although the available evidence suggests an association between the Janssen vaccine and increased risk of GBS, it is insufficient to establish a causal relationship. No similar signal has been identified with the Moderna and Pfizer-BioNTech COVID-19 vaccines," the label adds.

I was saying they have analyzed this as being correlation, but have not said it's causation at this time. They are continuing to monitor, to see if they can prove causation. I think you disagreed with my use of the verb "analyzing," but we are saying the same thing.

[cathy54321]

Hi everyone,
Thank you. For everything. These comments and caring. It means so much to me. As you can imagine seeing this on CNN, CBC, and main stream news agencies- actually talking about GBS, about people like me...I feel seen.  More people are coming forward with their personal stories of GBS due to a vaccine in recent days and it is being treated with respect and concern. Just the fact that this is happening. I never thought I would see the day. We, the rare group who have had this happen are a very small bunch. Thank God. I would never want anyone to go through what I did. I know this subject inside out. I lived it.
My hope is that we can find a way to design vaccines for people like me. I am processing alot right now in light of the transparency and reporting that happened.  Haha I may sound over the top but 12 years ago the medical establishment turned their backs on me. I was alone to figure out my own treatment and recovery. From GBS. It was wrong. Now it is being made right and people can get help. That would be my wish. That no one would ever have to go through what I did.
My doctor was firm that the mRna vaccines are not a safe option for me. That I cannot be vaccinated safely at this time. I must continue with very strict quarantine style living and follow all best practices...mask, hand hygiene, social distance until there is more data on rates of GBS, Neuro adverse reactions. She is fairly certain that I also have an allergy based on my previous reaction and medical.notes from my now retired doctor. Please remember this is my personal medical situation and for millions of people vaccines are safe.
I had a tangible sense of my doctor having my back. Then the news stories broke.
So how do I feel? Relieved. And scared of COVID. The merciless wrath of this beast. The variants. This is my reality. I need to work. I cannot be disabled again. To be honest I was trying to bravely face the vaccine despite everything and began to experience PTSD flashbacks to my most ill time. Things I thought had been locked away. It was so intrusive...the flash would appear before my eyes...yuck.  It was not great. I could not sleep. Life is Amazing, isn't it? Flashbacks are real.  But still...i was sure my doctor would say "Oh yes you need this" but it was a hard no, with conviction.
So one serious stress was removed. The fear of COVID remains. Again, I am provaccine. I Think these vaccines are to be celebrated. Many many lives will be saved.
You know in the hospital that first night after the h1n1 vacc, i knew I was dying. Or could die. I thought why me? Then, why not me ? I am not special. I am not exempt from human suffering.  Many die. It was sad. Tonight as I face this pandemic unprotected, I know I could die. Why me? Why not me? I am not special. 4 million people have died.  So it's hard. I will do my best. That's as real as I can be right now. Many are battling far worse. So I will carry on. Press on.
Much love to you all. In health and happiness,
Cathy

[Paxiled]

This is why all of us have an obligation to our fellow humans to get vaccinated so we reach herd immunity.  There are people who cannot get vaccinated, and here we have one of them.  People with suppressed immune systems are another.  For the rest of us, we all must find a way to convince those who have turned this into a political litmus test that it's just human beings helping to protect ourselves and others.  It isn't necessary for every single human being to get vaccinated, but if enough of us who can do then the virus will lose enough hosts to keep replicating and forming ever more severe variants.  The news right now is full of new surges including in the US because people are just plain refusing to get vaccinated because of right wing conspiracy theories many of them spread by the followers of populist leaders in several countries, including the US.  We can protect cathy so that she doesn't have to take this risk.  Peace.

[cathy54321]

Thank you Paxiled, for your words. For making me feel safer and wanting to protect me, a perfect stranger. I really appreciate and am thankful for that.
This virus has been so politicized. It makes no sense to me. 12 years ago with the H1N1 there was no conspiracy theories. The virus targeted younger people and pregnant women and the elderly...I am a mother and wanted to protect others because their lives were precious to me. Aggressive vaccination campaign in Canada. No one created all these weird misinformation and conspiracy theories. It's a virus.
Wishing everyone a happy weekend!
Cathy

[chez1967]

My daughter had a vertebral artery dissection caused by the jab..but is OK..I've had both and been okiish

[AnnieBrooke]

Here's the main point, as Pax says. " Covid is a monstrous disease for too many people, and any bad reactions to a vaccine will go away."

Covid can hit some people lightly, or even with no symptoms. It also has killed four million people and made 185 million sick according to the latest figures, which are considered a conservative count. Many who have gotten it have had lifelong heart, brain or lung problems. Some have needed lung transplants. Some have walked away. And yes, treatment is getting better all the time as medical knowledge about the disease is getting better.

Nobody has any way to know if they will be in the lightly-affected group or the seriously damaged/ dead group. What you do know, is that if you get vaccinated, you won't wind up in the seriously damaged/ dead group. And hey, that eases the worry in the back of one's mind every time you go to the grocery store.

Disliking a vaccine reaction to a different vaccine that you had once in the past, and please understand I believe you when you said it was the worst experience ever -- still, is that enough of a reason to take the gamble that you will be one of the lucky ones who only gets a light case if she gets Covid? The Delta variant is coming and doesn't sound friendly.

[cathy54321]

Hi Annie,
Thank you so much for your response. I appreciate it very much. The folks in this community are so caring and helpful.

Yes I agree with everything you say about the Covid 19 crapshoot. It is horrible.

In my case I was hospitalized for my adverse reaction to the H1N1 vacc and diagnosed with GBS, which is horrible. But it is a very rare reaction. Many can get vaccines and be totally fine, as I thought I was. So yes at this time I am looking at risks for both and feel very alone and frightened to be honest. I was told I was not a good vaccine candidate a number of years ago but am searching for answers.

I am looking for any and all medical advice from anyone who has had GBS or similar and gone on to be successfully vaccinated.

Thank you again. Appreciate it so much.
Cathy

[AnnieBrooke]

I have not had GBS and so therefore can't tell you from personal experience, but from an abstract of an article on the topic, the authors say "We would like to highlight that the risk of neurological complications or any other adverse effect associated with COVID-19 vaccination is low and the benefits of the vaccination outweigh any potential risks or side effects."

This definitely sounds like one for in-depth consultation with your doctor. Best wishes.

[cathy54321]

Annie,
Thank you. Wow the fact that you and Paxiled would look this up and take the time to reply to me is so appreciated. I cannot tell you how much every word means to me at this time.
Yes I agree the reaction is rare. Terrifying to go through and be sick for so long. I think it would be enough to send anyone running  from another vaccine but I am trying to be brave and explore my options. I do have glimmers of hope and your words are definitely one of them. Thank you so much Annie.
Please note it is not my intention to frighten anyone who may randomly read this. My situation is very rare and very unlikely for others. All of my friends and family are double vaxxed and colleagues as well. Not a single issue. It is a totally joyous occasion and I would really like to be a part of this joy.
Wishing you health and happiness,
Cathy

[Popper1st]

Gillian Barre is NOT some insignificant bothersome set of symptoms that will' just go away'. GBS is a very serious condition affecting the nervous system in the body. I'm sure it goes after other areas as well. NO, I have not had GBS, but my brother was hospitalized with it for 4 months after receiving the annual flu vaccine. While there,he died twice. He was not able to eat /swallow,talk, lost control of functions and it goes on and on.
After I learned how it affected him,I admit I stuck head in the sand as far
as investigating All effects of this disease. It's nothing to fool around with tho' and certainly can' t be passed off as some offending feather tickling the nose.

Most aren't aware,but with the Swine Flu Vaccination Campaign in 1976, over 400 people came down  with GBS, and 33 of them died. Yet we heard nothing of that at the time.
Even tho' I checked with my own doctor when my brother fell ill, and he assured me it's not a condition that can be passed in families...I mean having the propensity of contracting GB, I still checked with my specialist earlier this
year about the possibilities...I need to be ever vigilant, and can't just think it's
not an important matter. I needed to be as sure as possible what my chances
of safety were before getting this covid vaccine.  So far,no problems.
You are wise to verify before jumping in with abandon.

My brother was left with residual challenges  once he recovered.  He learned to adjust and lived another 20 years.

[Paxiled]

Not sure who on here minimized this horrible condition.  Seems everyone agreed it was a good thing for the poster to be cautious.  But I'm not sure we actually know how many people got GBS from the swine flu vaccine, given that people get it anyway.  I don't believe scientists ever figured out the why or the how many exactly, only that it slightly exceeded the rate at which people who aren't vaccinated get it.  Don't know as well how many died from the vaccine or if it was from other causes.  That particular vaccine was a fiasco, nobody's disputing that, and it was for a relatively benign disease.  The vaccine used a live virus, which made it more likely to cause problems.  And yes, we heard a lot about it at the time, as it led to the halting of the vaccine program.  Covid, on the other hand, has killed a ton of people and is mutating and is much more likely to lead to horrific consequences than the vaccines, none of which uses a live virus so none of them can be compared to the swine flu vaccine.  The facts are therefore not known.  It would be good if they were, but they aren't, but that again was a total fiasco and bears no resemblance to any other vaccine rollout in US history, including the current one.  The vast majority of people who get GBS get it from having the flu.  I'm guessing covid is causing some cases, but I really don't know, there hasn't been a lot of publicity about it.  Meaning, the situation today bears no resemblance to that one vaccine, that one vaccine has no reliable data, that one vaccine was halted, and no other vaccine has had such a large problem or uses that technology.  In sum, nobody has belittled GBS.  I don''t know what you mean by your brother died twice, you can only die once.  The fact someone seems dead doesn't. mean they are dead.  When you're dead, you do not come back to life.  It means he wasn't dead.  GBS is an autoimmune disorder, which is triggered by infections and occasionally by vaccines.  Nothing to belittle.  Not a big risk to any one person, but to someone who had it, much more of a risk.  Peace.

[Paxiled]

I'm not saying this to be at all nasty, I'm trying to make sure anyone reading this doesn't freak out.  Covid will be with us forever if we don't get vaccinated, and it will keep mutating and getting worse.  All vaccines have some risk.  All medications have much more risk, but I never hear anyone saying don't take any medications because of this.  Sometimes they are our best choice.  Life is never risk free, but we just can't go on this way forever.  Again, everyone here seems to agree that the original poster should be very cautious.  

[Paxiled]

I've never personally had a bad reaction to any vaccine, including the one I took for covid, but every vaccine is different.  A lot of the bad reactions aren't necessarily to the vaccine but to additives in the vaccine or something the vaccine was made of, such as ones that are made, say, from chicken eggs for people who have a problem with that.  So if you take, for example, one of the RNA vaccines (BioNTech and Moderna), nobody's ever taken these before so no way to know how you'll react.  It won't be the same at all as the past vaccine you had a problem with.  I'm guessing you've had a lot of different vaccines in your life, and apparently only had a problem with the one, which just goes to show, there's just no way to know.  What you do know is that covid is a monstrous disease for too many people and that any bad reactions to a vaccine will go away.  There have been some bad reactions to covid vaccines, but very few, but again, whatever anyone else has gone through just won't apply to you.  My wife and I both got the Moderna.  I got a sore arm and nothing else.  My wife with both shots was so wiped out she spent a whole day sleeping after each one.  And yet she's ecstatic she got it as she was able to visit her Dad and is back going out to dinner with her friends.  Peace.

[cathy54321]

Hi Paxiled,

Thank you so much for your response. I appreciate your words. I am trying to find answers for myself and your perspective helps alot. I know this virus is a beast. So was GBS which is what I had after the H1N1. So I am trying to make I formed decisions.
Seeing my doctor and hopefully can speak with a neurologist and immunologist to find a way to make a decision.
I thank you and wish you peace as well.
Cathy