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Tingling after Swine Flu Vaccine Chapter 2

Here is the continuation of surfnsand247's original Tingling after Swine Flu Vaccine.
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Hi! It's Cathy! I am trying to get back to being able to post here again in 2021. To any and all previous Tinglers who are wondering what the hell to do about COVID-19 vaccination come on by!
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Hi all of you. It has been years since we have had the shot and there is not one day in my life on which I don't think about it. How are you all? How are your symptoms? I have occasional set backs but nothing like it used to be , would say around 2-10%. actually thought I would never get another vaccine until covid hit us. Has anyone of you been vaccinated yet? My doctor wants to do blood tests on me, but am really worried. Has anyone of you had some experience? Would appreciate an answer. Take care Sabrina
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Hi Sabrina! I am back too! I have made a bunch of posts over at the Coronavirus community asking about anyone who may have had previous adverse reactions and gone on to get the \covid-19 vaccine. \it has been interesting. I have made contact with some previous tinglers too! Francesca, Corie, Myriad of Symptoms and Linda  - it was amazing to reconnect! For some reason, I had not seen these new posts - otherwise I would have come back right away...I am the moderator here and over the years have had requests for folks to join after getting the H1N1 flu vaccine - it's so sad and hard to remember those very dark and scary days post vaccine.

I am about 95% still have numb feet and buzzy legs sometimes. I did see my doctor about the vaccine in July and she said no for now. That we needed more data. I am terrified of the Delta variant and am researching day and night to see if somehow this vaccine can be safely delivered to me/us. I know two of our previous group have been vaccinated and are ok! I would love for them to tell their stories here.
What kind of blood tests do your doctors want to do? I am too scared to get vaccinated right now as no one can even project what my outcome would be - we need help and to be studied to understand why this happens and how to treat us. I can't be off work for a year and go broke again - that vaccine destroyed so much of my life for so long. When my doctor told me no for the vacc, I was so relieved - I was having PTSD over it. But now I feel completely un protected and it is constantly stressful. My mental health has suffered for sure.

Why don't we all stay in touch again and be here for one another like before - that may help us!
I will write to the members that I have made contact with and tell them to come over!

XOXO

Cathy
Hi cathy would love to be in touch. Maybe we can exchange telephone numbers. unfortunately i dont know how to send private messages over this forum.
I feel 90 % better, had a really bad flare up in july and still recovering from it. It brought everyting back up again. That vaccine sure destroyed me too. I remember those dark days and it was so scary. 2009 was the worst year of my life and the biggest mistake. I am terrified of COVID and the vaccine, the doctor wanted to do an allergy test but now he said we had an immunologic reaction... I think we overproduced cytokines, interferons , monocytes etc. I have another appointment tommorow with the immunlogist. Let's see how that goes.
I am glad to hear that two of our group had the vax and we ok. Maybe we could all keep in touch.?
I am really sacred of COVID too. I dont meet up with anyone without a test.
There is a study on pubmed which states that tingling was the 3rd most adverse reaction from the vaccine.
Did you ever have a skin biopsy, i think we have Small Fiber Neuropathy..
would love to hear from you .
Take care Sabrina xxx
Avatar universal
Reviving an old post. If anyone happens to see this 12 years later, please let us know how long it took for your symptoms to resolve. Many of us are suffering from the same symptoms from the COVID-19 shot and are worried.
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Hi! We are here! How are you? So sorry for what you are dealing with. I have not been active here for years, but many of us are back and posting again - Like I said to Sabrina, I will have others come over - some of our old group have had the COVID-19 vaccine and are ok. I have not had it due to my previous reaction.
Tell me what you are going through - all your symptoms. Have you seen doctors? What have they said?
It took me about 18 months to recover, but I was quite ill. I recovered about 95% but still have  numb feet and buzzy legs sometimes. I can do all the things I used to do and you will too - I promise. I swore I would walk in high heels again and dammit I did! I was one of the most affected and would talk to you anytime about how I got through it. Some others were badly affected as well and other had moderate or mild reactions.
You are not alone. It is not in your head. You will feel better. Have faith.

Write back when you have a chance.

Cathy
Avatar universal
Hello everyone.  I know most of you have not posted in this tread in a very long time.  I am going through a similar experience and don't know who to turn to.  3 weeks ago I had a tetanus booster after I cut my hand.  I have weakness in my legs that has gotten better but still very weak.  I am also having tingling sensation in my feet an lower legs.  After reading all of the post it seems most recover but its hard to really know.  I think the fear and anxiety is just as bad as the symptoms so if any of you can still get these messages and have any information or hope please let me know.
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I posted on here 5 years ago after having a terrible vaccine reaction.  My numbness and tingling lasted a full year and then magically went away. Last week I had a mild virus and all of the numbness is back.  I can't feel my face and even my vocal chords feels numb. Is it possible that the virus could have triggered an immune response similar to the vaccine? I'm terrified that it could be MS (which I had an MRI for 5 years ago). Anyone had a similar experience?
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Sorry jab in Oct 2015z
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Hi I'm in the UK had flu jab in Oct 2016 had all the symptoms of previous posts here. Its nearly four months of tingling nausea hives palpitations cant walk far without it all kicking in virtually housebound. Had body scan normal blood tests ok just inflammation waiting for nerve tests.trips to emergency dept with high heart rate and numerous trips to doctor. No help. Had one good week in 4 months then its all started again.seems any exercise makes it flare up. Anyone else had problems with this years flu shot? Reading previous posts seems like it takes months to recover.
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Hi
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ignore this comment
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just post a test comment, ignore it plz
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Timeline and Current Symptoms 21/06/2015


Took a booster shot of anti-rabies (Rabipur 2 shots) after playing with a pet dog (the dog did not attack or bite me but there was a cut with some bleeding). Last shot was on 26th April.

Nine days later, on 5th May, just after midnight, I had a tonic-clonic convulsion just after falling asleep.  I have no personal or family history of seizures (febrile or epileptic)
I had venous brain MRI done the next morning which was normal. In the evening I had a lot of bloodwork and an EEG done and both were normal. Neuro said that Rabipur could lead to ADEM but since MRI was clear that didn’t seem to be the case. He asked me to start with KEPPRA 750 mg and continue on it for 3 yrs.
I went for a second opinion to the neuro who conducted my EEG. He said that since I had no family history and no prior seizures, I should wait for a second episode before actually starting the medicine. He asked me to rest and avoid driving for 3 months. So I decided to wait.
The very next day following the seizure, I started experiencing humming/buzzing sound and slight giddiness whenever I would get up. I also noticed that this would happen whenever I would get up after lying down any time of the day.  After a week, the throbbing went away on its own but the humming  has since become permanent.
I went to my ENT when the humming and giddiness started and he diagnosed it as Tinnitus. He also did an Audiometry test which showed mild hearing loss, especially in the right ear. The ENT said that Tinnitus + giddiness could be either because of an infection, or because of DAMAGE TO THE CRANIAL NERVE or idiopathic.

Around 8-10 days after the seizure (about 17-19 days after the vaccine), I started to have extreme back pain out of nowhere. The neuro asked me to get an X-ray of the dorsal spine which was normal. I did a 5 day course of tramadol when the back pain went away but it came back in full force after I finished the course. It too has become permanent (it varies in intensity from day to day).
A week after the seizure, I also started having pins and needles sensations in my legs. Initially, I would experience only this when I was sitting. I also started having muscle twitches randomly a few times a day. One fine day (not very sure when), I woke up to find my left hand fully asleep. Since then the tingling/pins and needles/numbness increased a lot. I also started getting A LOT muscle twitching all over my body.
In the last 1-2 weeks, the numbness/tingling in my hands and legs has increased a lot. I also get shooting pains in my hand/leg that come and go away. Whenever, I pick something up, my hands start to pain immediately. Climbing stairs (only 2-3 stories) leads to a lot of leg cramping, tingling, discomfort and  shooting pain. The rigidity in my hands causes difficulty in typing (for example) and makes it very difficult for me to lift anything for an extended period of time. I have also rarely experienced tingling on the right side of my forehead. I also wake up with a lot of numbness in my hands everyday. In the last 2 days, I have noticed a lot of numbness in my right leg and it moves in an “irregular” fashion when I walk.

Since then, I have tried to find whether the vaccine had anything to do with the seizure and the symptoms that I have suddenly started experiencing. I scoured the VAERS database which records adverse events after vaccine use in the United States. These are reported by public health authorities and physicians. I found 63 cases of tonic clonic seizures in adults (25-44) who had no history of epilepsy or seizures and had their first seizure 0-20 days following RABIPUR. The number of first time convulsions after ALL Rabies vaccines was over 300. Some of those 63 cases also listed tingling in the arms and legs and muscle twitching as symptoms.



My Neuro agrees that I had some sort of autoimmune/hyper immune reaction to the vaccine. He also told me that muscle twitching is a common feature of motor neuron disease but he also clarified that it doesn’t mean that I have it and he wants me to wait and see what happens. However this has scared me a lot. I have also read that tingling, muscle weakness and muscle twitching can be due to CIDP. My family doctor feels I have developed peripheral neuropathy as part of the vaccine reaction and it will take a few months to a year to go away.


I havent done a NCS/EMG and lumbar puncture yet

Can anyone let me know what this sounds like?



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Hello elizabethm17, Any improvement in your symptoms. I got the shot on 10th october and It all started with a headache and chills a week after following which tingling started in my arms mostly. Ocassionally in the legs. The hands feel very weak and now the tingling is right behind the shoulder blades and I am very exahausted and feel tired after doing basic tasks. I am also a very anxious person. Brain MRI is normal and also the EMG/NCS and all blood work is normal. I am going to another neurologist today. I have been taking Klonopin for anxiety and Ambien sometimes to sleep. I get only 3-4 hours of sleep average per night for the last 6 weeks. Life has been terrible and I am scared I might be going into depression too.
Can anyone else relate to all this.
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Hi Steph.  It's been a few months, so not sure if you're still on here.  I hope you're feeling better!!!  I got my flu shot on October 11th this year.  I've had the tingling, but not the other symptoms.  It started in my left arm/hand (where I received the shot) and moves around to my face/neck, right hand/arm, both feet (though mostly right for some reason), occasionally my calves, and rarely my thighs.  It's been really frustrating.  It actually went away about two weeks after the shot for about two weeks, then it came back and has been around for the past 3 weeks.  It's definitely scary and frustrating!  I saw my GP and passed neuro exam about a week after the shot, so he suggested it might be inflammation of the nerves from the shot and possibly anxiety.  Did you get any answers?/Have you found anything that helps?

Not sure if anyone still checks this forum who had bad reactions to the H1 N1 vaccine, but I'd love to hear outcomes--for better or worse!
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Hi all, hoping someone can relate to me here. I got the flu shot 10 days ago. The day after I got the shot I developed a bad headache that lasted a week. Then after the headache ended I started with tingling in my left foot and now it is still there and it moves to different parts all over me. I'm extremely worried and can't eat. I am tired and feel I am deaths door. Can anyone else relate please?
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hc1
Is anyone here still active?  I am having same symptoms but from Tdap booster.
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My next appointment with the neuro is on March 15th so i guess that's when I get my MRI results. The weird pulse sensations never have gone away. It always happens when I tread mill.  I haven't exercised at all since I received the flu shot.  I hope everybody is having a good week. I'll update everyone as soon as I know my results.
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Julie! How could you think that??? We need you there now! Sorry - it just takes time for me to log on and get updatedwhen I am working so much - at one point we can figure out additional moderators and make sure everyone gets on quick...Bella, you are so imprtant to this forum.

Everyone should migrate over - even just folks who prefer to read and not post - ALL are welcome. The fact that we have to do this is somewhat inconvienient (like very) but we must...this foum just wasn't working anymore and was getting to dysfunctional and depressing...

Ok please join...
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Hey folks!

The new user group is all set up and we have 10 members and growing! Feels good.

'H1N1 Flu Vaccine adverse reaction group' is the full name.

To find us go to forums and hover and you will see a menu item called user groups

You should be able to find me and join.

Bye!

Cathy
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707563 tn?1626361905
Please remember that you can disagree without being disagreeable, and while you don't have to like everyone, you do have to be respectful.  That's true for both sides of this argument.

We really want to be able to keep this thread going, but won't be able to if the arguments continue.  Just respect that everyone has a right to their opinions, and keep the conversations to how you all can help each other.  It seems as if you have a lot more in common than not.

Emily

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Hi, Julie
Cathy is away travelling and working alot; she is the one that needs to give you access to the new user site. So just give her time and I'm sure you will be joining us there. If you need to communicate in the meantime, you can send a message (not a note as it isn't private) to anyone of us.
C.
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I sent in a request to be on the new site and I haven't had any response. Should I take that as I am not welcome? Julie
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Hi,
   Thank you for the welcome. I'll be joining the group.
I don't consider myself too unfortunate - if you consider it could have been worse with some people getting GBS, then I'm lucky. But thanks for your concern. It has been a very difficult year and I'm glad I've found some people who KNOW it's not in my head! So cheers for being here, I'll be a regular.

Claire
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It is on bottom of page 2 of user group Chris
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Well I found it I am just waiting for the moderator of the site to except me
Hope all find it too Chris
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'H1N1 Flu Vaccine adverse reaction group' is the full name.

To find me go to forums and hover and you will see a menu item called user groups

You should be able to find me and join.

Bye!

Cathy
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