Susanwilding2 years ago

Hi mine lasted 1 week 1 day headaches feeling really dizzy my daughter had hers for 3 days my son had coronavirus last march not been good so it possible

Marz2 years ago

Have you been able to report your side effects with a yellow card ? These go to the MHRA. Hope you feel stronger soon ...

penelope2 in reply to Marz2 years ago

Hi MarzThanks yes I reported with the yellow card. I just wonder that the autoimmune ataxia that I have exacerbates the side effects of the vaccine.

Its so hard to get these sort of answers.

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Marz in reply to penelope22 years ago

I am not able to say if its the v@xxine that is causing the symptoms. Everyone is so different it seems.

I have Hashimotos and Crohns and have decided to wait on the sidelines until the safety trials are complete in 2022. Having survived the Asian Flu in 57/58 and a nasty virus early in 2020 I am hoping I may have some protection !

🌻🌻

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rozjoyp in reply to penelope22 years ago

Well I was super fit and healthy before I got the jab.

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bluepettals2 in reply to rozjoyp2 years ago

how are you now rozjoyp

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wobblybee2 years ago

I had my 2nd Astra Zeneca on Saturday, I was asked if I’d had any blood clots and given a sheet of information. As far as I can tell I’ve been ok, I was ok with the first one. I had the Flu jab last year and was noticeably unwell for about 48hrs, so I was watching out for similar symptoms.

penelope2 in reply to wobblybee2 years ago

Hi wobblybeeYes was expecting to feel unwell initially but this has gone on a long time. I have an autoimmune ataxia and so has the vaccine exacerbated this?

Not only dealing with the stress and anxiety of ataxia but the effects of the vaccine too.

Felt poorly again yesterday and nausea this morning.

It would be really good to have someone who knows and to answer these questions!

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wobblybee in reply to penelope22 years ago

🙂 The following information is copied from AtaxiaUK, it does mention that people with autoimmune types should have the vaccine, but it doesn’t give mention to any aftereffects.

COVID-19 vaccine information

With the availability of the vaccines in the UK, Ataxia UK has had a number of enquiries from people with ataxia about it. Here we provide some information about the vaccine.

Whilst the vaccination is not compulsory, there is now good evidence that certain underlying health conditions increase the risk of severe illness and mortality from COVID-19. People with an underlying neurological condition such as ataxia fall into this category. People with ataxia plus additional health problems such as cardiac and respiratory conditions are categorised as 'clinically extremely vulnerable'. These people will already have been notified by their GP or consultant and previously been advised to 'shield'.

The Association of British Neurologist (ABN) Guidelines for Covid-19 advise that anyone with

an ataxia diagnosis plus any of the below should be included in the extremely vulnerable

category:

1. Over 70 years of age with ataxia

2. Ataxia with any additional comorbidities including: diabetes, cardiac or respiratory complications

3. Ataxia with significantly reduced mobility i.e. wheelchair bound or living in a care home 4. Ataxia with bulbar weakness i.e. significant difficulties swallowing

5. Ataxia taking immunosuppression drugs for comorbidities or autoimmune ataxia

6. Ataxia with pregnancy plus underlying cardiac complications.

🙂 Like any other vaccine it’s likely to effect individuals differently, if you feel things don’t improve consider asking your GP for advice. Or, you could contact AtaxiaUK helpline to ask if they could give you any information.

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penelope2 in reply to wobblybee2 years ago

And thank you for posting the list of specialists who see ataxia patients. Wish there was more of them .

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Arlo202 years ago

I had mine on 11th feb no effects at all lucky i guess hope you feel better soon..

Piero2 years ago

Yes Penelope, after my first vaccination I felt awful for about twenty four hours. The ataxia symptoms, dizziness, stumbling gait etc etc all surfaced with a vengeance and much much more acute than normal. The bad period lasted for around 48 hours, during which I felt lousy. My second vaccination dosage is later this week, I'm not looking forward to it!

penelope2 in reply to Piero2 years ago

Which vaccine are you having?Good luck.

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Piero in reply to penelope22 years ago

The Astra Zeneca. After the jab I intend going home then straight to the bedroom so that I can avoid navigating the stairs. Cheers penelope2 and thanks for your interest.

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trace55 in reply to Piero2 years ago

Hi Piero, i had my AZ jab 21 march 21 had one night feeling very ill then ok 2 weeks after cant stand or walk properly usually out exercising now like an invalid had mri friday on brain results later today should have had my second one but not having it.

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Cuds in reply to Piero2 years ago

glad to hear someone else has a worsening of their symptoms after the jab. I felt ok after the 1st one but a few days after the 2nd one my coordination was really bad, especially my walking. Has anything been written about the effects of the vaccine and ataxia? I also had Astra Zeneca

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EireAtaxic2 years ago

My GP office called today to say that they are vaccinating over 70s this weekend and asked if I wanted to go on the no show list. Its AZ. I jumped at the chance.

JaggedJade2 years ago

I've never had Ataxia, but I had the vaccine on 9 March, so almost 2 months ago, and in the last 3 weeks have had balance problems, a feeling of being unsteady in walking and standing, as if the ground is moving, and my cerebellum area of my head ( back of skull) is feeling very weird- as if it's bigger than the rest of me, and swaying a bit at al times. My gait is effected too. Could this be a delayed reaction to the A-Z vax?

Helenmaria44 in reply to JaggedJade2 years ago

I have had awful painful joints since having 1st vaccine over 3 months ago, I have declined the 2nd dose, I have a full blood tests taken this week awaiting the results. I recommend you speak to your GP and ask for blood tests also. : I read this article today skynews :13:37

EU regulator investigating reports of potential vaccine side effects

The European Medicine Agency (EMA) says it is investigating reports of a rare nerve-degenerating disorder in people who have had the Oxford-AstraZeneca COVID-19 vaccine.

The EMA has asked AstraZeneca to provide more data as it looks to see if there is a link between the jab and cases of Guillain-Barre syndrome.

Guillain-Barre syndrome is a condition where the body's immune system attacks the outside of nerves - and sometimes occurs after a bacterial or viral infection.

The EMA is also looking into reports of heart inflammation following shots of the Pfizer and Moderna jabs.

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penelope2 in reply to Helenmaria442 years ago

Hi there, a friend of a friend has also had painful joints and another has had Gullane Barre with the virus itself though, she is improving slowly.In the last few days my legs have been painful and I have still not returned to where I was with the ataxia symptoms. My second vaccine is due for 3 weeks and it's a dilemma to have it for sure.

I still sway between yes and no.

My husband had his second dose of Pfizer and very little discomfort. So it might be affecting those with neurological problems more?????

My doctor says "I don't know" and is no help.

I do not know who to talk to that will give me an.honest answer.

Good luck to you and I hope you will have a positive outcome of the tests.

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wendyincanada in reply to JaggedJade2 years ago

I also am having lingering side effects from AZ over 2 weeks ago. At first I was very sick- sweating, fever, vomiting, fatigue, dizzy. Now I am still experiencing fatigue and shortness of breat, muscle cramps/spasms. I have no other health conditions other than high BP.

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penelope2 in reply to wendyincanada2 years ago

Gosh it sounds like you are really having a bad time. Have you asked anyone about this? I am waiting to hear the comments from the UCLH a specialist ataxia clinic.Hope you feel better soon.

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wendyincanada in reply to penelope22 years ago

Yes, I went to emergency last night. High WBC but no clotting-which is good. I am following up with my GP today. Thank you for the well wishes.

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penelope2 in reply to wendyincanada2 years ago

Good luck.

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trace55 in reply to JaggedJade2 years ago

hello, i had the az vaccine on 21 march 2 weeks later cant walk very far and wobbly on my feet due second one this weekend thinking of not having it hadd test nothing found wrong with me scans etc.

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1940girl2 years ago

I had my AZ jab last week and have been feeling ill ever since, I am more dizzy and off balance than normal and have had a headache every day, I was fine with my 1st jab so thought I would be ok this time round.

penelope2 in reply to 1940girl2 years ago

That doesn't sound good after the second vaccine. Have you asked your doctor about this. I am waiting for comments from the UCLH, before making a decision about having second.To be honest I think they don't know all about long term side effects for neurological and autoimmune sufferers.

It makes you wonder when will all the downsides of the vaccines come to light???

And would they tell us??????

That sounds so cynical!!!!

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Marz in reply to penelope22 years ago

The website - Alliance for Natural Health - are covering auto-immunity and the v@xx.

The EMA - Europeam Medical Agency have done a report. One topic asked of Pfizer was about auto-immunity. They have until end of July to respond - meanwhile.... I have read the 2 hour long document !

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Mrstrellis22 years ago

I had the AZ jab 2 months ago and have not been right since. I cancelled my second jab and was going to go again tomorrow but I still don't feel 'right' my arthritis pain is worse than ever and I now have pain in my legs. I am waiting for the results of a blood test before I go for another jab.

penelope2 in reply to Mrstrellis22 years ago

You poor thing, if you don't mind me asking do you have an autoimmune condition, I understand if you would rather not say.I have just recovered a week.or 2 ago just in time for the second one this week!

Hope you feel better soon and they get to bottom of it.

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trace55 in reply to Mrstrellis22 years ago

hi i cancelled mine 3 weeks ago but the doctor thinks i am better having it i never had unsteady feelngs each day before in my life.

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rozjoyp2 years ago

I'm interested to here about long-term impacts of the vaccine too. I only had my jab 4 days ago, but have felt terrible ever since, having experienced all the symptoms listed. I read about the symptoms after I experienced them btw, so no expectations there. My friend is also still feeling bad a week after her shot.

cocobibi2 years ago

I've heard of so many people feeling long term effects from the vaccine. We've taken homeopathy throughout as protection, many people don't believe in this but we and my 80+yrs parents have all been ok, despite having contact with +ve testers. I'm with the person who posted re waiting until human trials are complete. I've heard that the Janssen vaccine has a different make up, more traditional so tested more though haven't researched it yet.

Marz2 years ago

The end dates vary from company to company. We will probably only hear the Media report on safety - not the full trial report. Sadly the placebo arm of the trial were quickly given the jab - thus destroying the Control arm of the trial.

douglaslarsen2 years ago

I've been hit with a hammer. Going on 4 weeks. What a mistake. Avoid at all cost

sotired67 in reply to douglaslarsen2 years ago

I tend to agree with you Doug,

although it is possible that You, Penelope, myself and everyone else that replied to this post

are just unlucky to have had side effects after taking the jab but I can't be sure.

Nevertheless, I don't think that i'll take a 2nd jab if the 1st has affected me so badly.

All the best mate.

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Farah2u2 years ago

Hi I had my second dose of Astra Zeneca 8 weeks ago The first 5 weeks I suffered from fatigue sore throat coughing very very bad cold like symptoms now I still have chronic fatigue and nausea and cramp pains

Had to go to A&E today as I fainted they said must be due to the vaccine !

And I need to be referred to neurologist for head scan

Anyone having similar issues

What an be done ?

penelope2 in reply to Farah2u2 years ago

Sounds like you have been really unlucky.I suffered really badly with the first vaccination. It went on for about 6 weeks and my gp didn't know what was going on.

Get lots of rest and water. Be kind to yourself.

I think I have autoimmune ataxia and this will mean that there will be lots of inflammation already so exacerbating the problem.

Still better than getting the covid though..

Know someone who had long covid and it's really unpleasant.

Best wishes.

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sotired67 in reply to Farah2u2 years ago

I wish I had the right answer for youbut the truth is I'm suffering side effects as well

and it's getting me down.

If I had known I would feel this way, I wouldn't have had the jab.

I wish you well.

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sotired672 years ago

Hi Penelope,

First and foremost, I'd like to say that I hope that you're starting to feel better since you wrote your post.

Well, I had my first jab of the AstraZeneca in late May 2021

and for the past month and a half, I have been feeling really tired,and this feeling has lasted all day and night.

My body feels weak and I feel slightly confused (I think the name is brain fog)

I feel about 95% sure that the symptoms are side effects of the vaccine.

The fatigue has increased in the past week and I'm starting to worry that it may get worse.

I decided to dial 111, a few minutes ago and I'm now waiting for a call from an out of hours GP.

I feel very reluctant to have a 2nd jab because it may prolong the symptoms I described.

I wish you and everyone else all the best and hope that you'll recover asap.

StriatedCaracara2 years ago

I had bad reaction to first AZ jab from day 9 to 16 including headache on bending over and lying down, and shortness of breath on doing lots of thing. There were times when experienced more ataxia too.

Symptoms like this had not been reported when I first got them. I had listened to an 'American online video' suggesting precautionary use of aspirin.

Therefore' as soon as these symptoms happened' (and not before) I started taking soluble aspirin. It didn't feel bad enough to go to ER and I'm a carer so could not really leave the person I cared for.

I'm glad I did take soluble aspirin, both as an anti-inflammatory and to reduce risk of clot.

I did contact my GP and they said they would give me second dose unto they were advised what to do by Rheumatologist at MCT clinic where I was due my first visit.

I believe I had covid in March 2020, and then long covid.

In my case it may have meant I had strong reaction to first dose.

It is hard when everyone around me just says I need to be doubled vaccinated. I believe the vaccine has been brilliant for the majority, so I'm reluctant to talk about what happened when in conversation with people. I just say I prefer not to speak about it.

18 months after probably having covid, and 6 months after my first dose of vaccine, my CoV-2 anti- Spike IgG is 260 AU/ ml.

I'm trying find out what this measure tells me. I think 'Arbituary units' (AU) used by labs may also vary.

I'm unsure about having second dose of the same vaccine, or any booster

I'm following what is happening in relation to production of antibodies to platelet factor 4 ( PF4 ) as I had strange bruising also of a toe and finger following the jab. Bruising of toe was black and looked like very dense clot.

If you don't go to hospital blood tests to check things like aPF4 are difficult to get, so I'll probably never know..

OzIS2 years ago

OMG I thought I was the only one with these symptoms. When I read about symptoms on the Internet after the second Astra Zeneca injection no one really had the same symptoms as me. However this is what I am experiencing after my second Astra Zeneca vaccine. The First injection I was ok but after the second injection I experienced severe diarrhoea. It came on about 4 days after. It would come on after having any dairy. I actually thought I was becoming lactose intolerant but it went away after about a week. Then I seemed fine. Now I get headaches and experiencing flu like symptoms for a day. However I have no sore throat, runny nose or cough. Just severe head ache, fatigue and aches and pains. I’ve treat it with cold tablets but I’m a write off for the day. I just hope this isn’t going to last indefinitely. Hope you are feeling better now.

penelope2 in reply to OzIS2 years ago

HiWatched "effects of long covid" again that was recorded on TV. There are definite similarities to the effects of the vaccination. Remember we are all different and these are just my thoughts.

1. There is probably an autoimmune reaction going on whether from the jab or you have one already.

2. This reaction will be causing inflammation in the body.

3. These combined will be sending the immune system awry systematically.

4. You will be unwell and this can take a long time to get over. Mine took about 6 weeks.

To help your body then reduce pro inflammatory foods. Caffeine, alcohol, sugar, processed food, gluten and stick to food you prepare yourself.

Include oily fish, fruit and veg, protein at every meal. Lots of water.

Get plenty of rest and pace yourself.

This is my overview and I am not a health professional.

With the 2nd vaccine I had far fewer side effects, so I assume that my body is starting to respond to the restrictive diet I am on.

The cerebellar ataxia is also stabilising to this regume but doctors and neurologists don't believe in this autoimmune route I am on.

Lots of research points to gluten sensitivity but am still waiting for results of tests.

I believe that everyone with ataxia should be trying gluten free because we could be waiting for ever for the NHS!!!

Hope you are feeling better.

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valentine73 in reply to OzIS1 year ago

Wow so glad to hear I'm not the only one getting these symptoms. Thought I was going crazy. I got my 2nd dose start of June 21 and every few weeks I've been getting these weird flu like symptoms. I get a bit of a scratchy throat, headache, fatigue for maybe a day or 2 every month. I had a feeling it was maybe the vaccine that caused it. Like you I hope this isn't a permanent thing. x

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DavidMaxwell1 year ago

I experienced a very long and painful reaction after my initial Astrazenneca shot.It was really bad.

It started 24 hours after my shot in very early April. I experienced an extremely sore throat, headache and runny nose. This evolved into a miserable cold like condition of wet cough and severe headaches. The headaches were so bad even resting on pillows was painful. The headaches were with me for at least a month, probably more. As time went on various other physical symptons appeared. One morning I woke up feeling very dizzy. I could not stand up on one foot, I just had no balance at all. The dizziness lasted a few days.

The worst was I had terrible stabbing pains in my thigh muscles. This made it impossible to sleep. They would just start as a little tingle, then almost instantly I'd get a big painful jolt or series of shocks each worse than the other. The pain was really bad. I am still having big problems with sleep after this.

This was pure torture. I also suffered a dramatic loss of energy, but this was brief, just a few days but dramatic as I had cycled to a destination and was unable to ride home.

A routine medical appt revealed I had really high Blood Pressure... 180/100 I had perfectly normal blood pressure when taken 2 months before my shot. I have taken medication for my current high blood pressure and feel a whole lot better now. I cannot explain how my blood pressure rocketed up ..don't smoke or drink, not overweight. My 2nd shot was text book. This was about 12 weeks after the first. Virtually no reaction other than tiredness experienced on the day of the morning shot....

BlanketTime11 year ago

it's why i'm worried about the kids. i'm glad they're finally eligible, but there's no way of knowing how it will affect them. it's just the alternative is so bad.

my vaccine (moderna) changed my monthly for 6 months. that is some strong medicine. hopefully, the long term effects won't be too bad.

Happyfacexx1 year ago

Will anyone who is considering having yet more j*bs please read this post and all the replies and then make a more informed choice, still have it if it feels right to you but at least think it though first

penelope21 year ago

The second vaccination of AZ was OK. Drank about 2 litres of water after (lots of visits to the loo in the night) and this was well worth it.Had the flu jab for the first time this winter and apart from a sore arm again OK.

Am booked in for the booster on Tuesday so keeping my fingers crossed for that one.

Apparently it seems that they are using Moderna or Pzifer so will post again how this goes.

We look after our young grandsons a lot and the primary schools numbers of covid are really high around here so feel I have no option really.

I know 2 people who have been really ill with long covid (before vaccinations) and the long term effects are quite scary.

Guess this will be with us for a long time and we are all different so need to go with what suits us best but it is a sort of lottery!!!!

At the end of the day the NHS is there for the population, not the individual at the moment 😕

Good luck and take care.

StriatedCaracara in reply to penelope21 year ago

Thanks - I may do the same and just go for it.You did really well and were brave. Thanks for continuing to post on this too. It is a good post.

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Daunted16 months ago

Hello Penelope, Can i ask how you are progressing please or if you have returned to your normal? I ask as i have still not returned to work . I have had various diagnosis but still nothing. I am now awaiting more tests. I have been unwell since May 2021.

penelope26 months ago

Hi daunted 1. That must be hard to deal with and I really sympathise, you poor thing.

For me the ataxia symptoms have been stable for over a year now just go downhill when i am ill. But i still have ataxia symptoms, can walk unaided when not tired and get around quite well indoors. Am retired now but could not work anyway if i was younger.

A gluten free and dairy free diet is restrictive but well worth it.

There has been a distinct lack of doctors and neurologists that have helped me apart from UCLH and Sheffield, which i am under now. All that i have done to help the ataxia has been done through my own research. It is just not good enough!

Sheffield and Professor Marios Hadjivassiliou is the best if you think you have an autoimmune problem.

So probably not going to have the Autumn booster, it's a risk but so is making the Ataxia worse.

Good luck and i hope that things improve for you soon x