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LadyD
(@ladyd)
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Joined: 7 months ago
Posts: 142
 

@heather257 And I hope you feel better soon too! I’m taking Betahistine Dihydrochloride, ibuprofen and just started taking the supplements liquid Liposomal Glutathione, Quercetin and Zinc which all arrived this afternoon so fingers crossed this stuff works. I’ve spent £90 so far on medication! 🙄


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Sassafras
(@thenystagmus)
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Joined: 10 months ago
Posts: 848
 
Posted by: @konakitty

Hello, all, I have not had the vaccine yet as I have PPPD and vestibular neuritis, following a car accident and inner ear surgery in 2015. I would like to request those who post very frequently to please pause the posts and replies so that those of us who are searching for a wide range of responses to this forum don't have to wade through pages of responses that are not a new or current posting. In trying to determine my path moving forward or not with the vaccine, it's very difficult to page through this forum only to see someone posting continually with no real new info. I can only get through a page or two of the forum without my symptoms being exacerbated, so please consider this before you post multiple times. 

Thank you!

Hi konakitty, I'm glad you're finding the information here helpful. I'm sorry that reading is difficult for you. The info here is invaluable to many, as is also the day to day support offered and enjoyed by many here! I hope you glean what is helpful for you. Best wishes!

 


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Heather
(@heather257)
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Joined: 7 months ago
Posts: 6
 

@ladyd I will pray for all of us that we become normal again!!!  I actually bought quercentin but I’m so afraid to put anything else in my body 😞


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Rachie
(@rachie)
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Joined: 8 months ago
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@heather257

Quercetin is meant to be quite anti inflammatory I've taken it for a week or two and think it helped a little x


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LadyD
(@ladyd)
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Joined: 7 months ago
Posts: 142
 

@heather257 you know what…I’m lying on my sofa (as I have been for 8 days now) looking at the concoction of medication I have here; ibuprofen, Betahistine, Beta Blockers, and those three supplements which arrived this afternoon. I only just said to my man that I’m actually so scared to put all these things in my body but I have asked my doctor and he said it’s ok. Then my man made a good point to remind me these are ONLY supplements and as long as I follow the instructions on the bottle there’s no reason they shouldn’t do me good. God knows I’ve paid enough for them!

So…like you, the anxiety starts talking. I’m not working, I lost my job last year along with my Mum who died so I am often alone in the house while my man is working and alone with this feeling as well as the anxiety. Normally I’d ring my Mum but she’s not here now so thank god for all of you who have kept me sane. I’m so grateful for this forum! 🙏🏼

I don’t even like eating anymore because I can feel my body using a lot of energy just to process food but I’m having to force myself to eat fibre cereal and oily fish with brown rice. I can’t eat much though because I get bloated. Are you the same with eating too? Xx


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AmyH
 AmyH
(@amychi)
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Joined: 10 months ago
Posts: 12
 

@msmar Thank you for this very intelligent post, and I hope you continue to recover.  I just wanted to ask, when you said you had facial numbness from the SFN, was your lower lip to chin involved, and did it come and go?.  I have the exact condition you describe, but without having yet been vaccinated, and is why I am hesitant.  I am certainly not anti-vaccine either, just concerned with having pre-existing vestibular issues and neuropathy.  Being that you mentioned facial numbness with your syndrome, which is more unusual, just wondered how it manifested (i.e. any chin/lip numbness).  I am wondering for another reason.  Thank you, and best wishes.


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LadyD
(@ladyd)
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Joined: 7 months ago
Posts: 142
 

@rachie that’s good to know. I’ll stop the ibuprofen then! 


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dragonlover
(@isismadec)
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Joined: 11 months ago
Posts: 237
 
Posted by: @ladyd

@heather257 you know what…I’m lying on my sofa (as I have been for 8 days now) looking at the concoction of medication I have here; ibuprofen, Betahistine, Beta Blockers, and those three supplements which arrived this afternoon. I only just said to my man that I’m actually so scared to put all these things in my body but I have asked my doctor and he said it’s ok. Then my man made a good point to remind me these are ONLY supplements and as long as I follow the instructions on the bottle there’s no reason they shouldn’t do me good. God knows I’ve paid enough for them!

So…like you, the anxiety starts talking. I’m not working, I lost my job last year along with my Mum who died so I am often alone in the house while my man is working and alone with this feeling as well as the anxiety. Normally I’d ring my Mum but she’s not here now so thank god for all of you who have kept me sane. I’m so grateful for this forum! 🙏🏼

I don’t even like eating anymore because I can feel my body using a lot of energy just to process food but I’m having to force myself to eat fibre cereal and oily fish with brown rice. I can’t eat much though because I get bloated. Are you the same with eating too? Xx

As long as you've gotten your doctor's approval on the supplements, I think you're OK to go ahead and try them..  But generally speaking, because something is "only" a supplement doesn't necessarily mean it's harmless, without side effects or without interactions with other pharmaceuticals one might be taking.  Exercising caution with what one puts into their body is always a good idea.

This post was modified 7 months ago by dragonlover

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chels8957
(@chels8957)
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Joined: 10 months ago
Posts: 23
 

@sassafrass @adnanalkurdi It is still going on after 3+ months, however just in the past week I've noticed that its getting a bit better. Strangely enough, I had very deep blood work done recently which showed my HSV-1 levels to be extremely high, although Ive never had an outbreak. This doctor said that HSV1 can cause encephalitis, which I had some symptoms of (post vax), that again, seem to be slowly going away. 

The most frustrating thing about of all of this is that I (and most of us) have no idea what this is or what is causing this. I've been told that I could have encephalitis, or just my migraines acting up, trigeminal nerve pain, vestibular neuritis, systemic inflammation, sensory mismatch - or even just a reaction to my botox. I (We) have no tangible evidence to show exactly what is going on, and I have spent $6,000+ on all the testing, blood work, ER + doctors visits I've had so far.

Again, I am extremely thankful to have gotten the vaccine. I've received every vaccine I need to since birth and never had an issue. I know someone who got Covid and it literally changed his personality and he had to quit his job because it changed him so much as a person. Covid can significantly impact the white matter in your brain. So I would definitely rather be dealing with this in the long run - I am hopeful that we will all improve although it doesn't feel that way now.


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dragonlover
(@isismadec)
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Joined: 11 months ago
Posts: 237
 
Posted by: @konakitty

Hello, all, I have not had the vaccine yet as I have PPPD and vestibular neuritis, following a car accident and inner ear surgery in 2015. I would like to request those who post very frequently to please pause the posts and replies so that those of us who are searching for a wide range of responses to this forum don't have to wade through pages of responses that are not a new or current posting. In trying to determine my path moving forward or not with the vaccine, it's very difficult to page through this forum only to see someone posting continually with no real new info. I can only get through a page or two of the forum without my symptoms being exacerbated, so please consider this before you post multiple times. 

Thank you!

I have Meniere's disease.  My ENT told me it would be likely that I would have the severe side effects given my history of a vestibular disorder.  He told me that whether or not I got the vaccine, it was a risk; that it was up to me to decide which risk I preferred to take.   I had already decided against the vaccine, but what my ENT had to say made me even more sure of my decision.  It would be a good idea to discuss this with your doctor before before you decide whether or not to proceed.  Some of those posting here who have suffered the side effects have been people with either a history of vestibular disorder or migraine, although some didn't have those preexisting issues.  


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LadyD
(@ladyd)
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Joined: 7 months ago
Posts: 142
 

@isismadec I agree entirely. That’s why I was worried! But I made sure to get advice from doctors first in case anything interfered with the Betahistine.


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annb
 annb
(@moonbeam)
Active Member
Joined: 9 months ago
Posts: 48
 

Hi all,

Just catching up on some of the posts.

I wanted to say that I too have had odd sensations in my right leg, mostly tingling sensations in my thigh. It comes and goes.  Today, I'm noticing a more throbbing pain in my right arm.  When I went to the Dr. a few days ago to check out my leg, he said it wasn't blood clots but discovered I had shingles due to a rash I had on my lower back.  Also, I smelled cigarettes back in January and tested negative for Covid. Then got my first shot in March... 

Here is the video interview with Dr. Kory talking about Ivermectin. They took it down on YouTube, but it's on the FLCCC website.

https://covid19criticalcare.com/videos-and-press/flccc-releases/covid-ivermectin-and-the-crime-of-the-century-podcast-with-dr-pierre-kory/


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nodiagnosis
(@nodiagnosis)
Active Member
Joined: 8 months ago
Posts: 55
 
Posted by: @djmatera

Can we hear more success stories of people having these long term symptoms and recovering?  I am super encouraged by the few I’ve read (I.e @dizzynessfromvaccine) but would really love to hear more.

It seems like quite a bit of people of fallen off from earlier on this forum, so that seems promising.

Got my vaccine 31/12/20 and vertigo/parasthesia began on 09/01/21. Wasn't able to work for a couple of weeks, and background dizziness lasted for twelve weeks in total. Haven't had dizziness since 13/04/21 - as far as I'm concerned, it's gone. I am taking beta-blockers at the moment but planning to wean off those soon and will keep you all posted. New symptoms still develop to this day e.g. paraesthesia, headaches and floaters. All of my symptoms are fleeting and manageable and I can do my daily tasks etc. Feeling more positive that this will pass


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Sassafras
(@thenystagmus)
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Joined: 10 months ago
Posts: 848
 
Posted by: @chels8957

@sassafrass @adnanalkurdi It is still going on after 3+ months, however just in the past week I've noticed that its getting a bit better. Strangely enough, I had very deep blood work done recently which showed my HSV-1 levels to be extremely high, although Ive never had an outbreak. This doctor said that HSV1 can cause encephalitis, which I had some symptoms of (post vax), that again, seem to be slowly going away. 

The most frustrating thing about of all of this is that I (and most of us) have no idea what this is or what is causing this. I've been told that I could have encephalitis, or just my migraines acting up, trigeminal nerve pain, vestibular neuritis, systemic inflammation, sensory mismatch - or even just a reaction to my botox. I (We) have no tangible evidence to show exactly what is going on, and I have spent $6,000+ on all the testing, blood work, ER + doctors visits I've had so far.

Again, I am extremely thankful to have gotten the vaccine. I've received every vaccine I need to since birth and never had an issue. I know someone who got Covid and it literally changed his personality and he had to quit his job because it changed him so much as a person. Covid can significantly impact the white matter in your brain. So I would definitely rather be dealing with this in the long run - I am hopeful that we will all improve although it doesn't feel that way now.

Hi chels - I also have had fluctuating symptoms since early March, with a relapse to severe last weekend.

Your HSV-1 positive testing is of interest to me. I believe that would be for the Herpes Simplex Virus, commonly known to cause facial cold sores? I think I recall reading where it's also been found to reside dormant in the inner ear nerve (upon autopsy of those who died of other causes, but had displayed vestibular symptoms while living) and be implicated as a possible cause of infection flare causing vestibular issues, maybe along with the Herpes virus that's responsible for chickenpox and shingles?

In light of your extremely high HSV-1 test result (without any past or present evidencing outbreak?), I wonder if you've been advised treatment with any antiviral medication or steroid treatment?

I also am inclined to wish to be able to pinpoint my disease etiology, receive diagnosis and understand appropriate treatment and prognosis! I also have had and am continuing to seek an accumulating amount of testing to these ends. You talk about white matter brain tissue changes from Covid infection ...I don't even want to tell you the many post-Vaccine brain changes that will be looked for in my upcoming MRI. I know so much about those possibilities that I could be scared silly over them, except that I know that emotional reaction would only compound my issues. Sooo frustrating to feel like the best that can be done is to test the heck out of me while taking potshots at a poorly identified, moving and relapsing target -  while blindfolded!!

After one dose of vaccine and unresolved reaction to date, I've decided it to be contraindicated to ask my body to undergo a repeat of that in my lifetime.

And if I'd been able to foresee my current predicament, I'd take my chances without any Covid vaccination. Oh me, oh my - surely no vaccine for me! I've learned an extremely costly lesson in more ways than I want to enumerate! 😞


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paulinea
(@paulinea)
New Member
Joined: 7 months ago
Posts: 2
 

Hi, this is my first post, I've had my first Moderna shot 4 weeks ago.

I'm just wondering - has anyone else had side effects that felt like they were ONLY related to their legs, like general unsteadiness, wobbliness, or the feeling like you were on a rocking boat and about to fall down? Because I have had lightheadedness and pretty strong fatigue, but that went away, and all that's left is that leg feeling.

I honestly feel like I'm going crazy since it's relatively vague, so I really don't know if it's my muscles/nerves/joints or it is still a vestibular issue after all. It's not that strong as of now since I've never fallen or tripped over anything but idk. I just feel like it's my legs since I don't feel anything in my head like spinning but I can't know


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