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Adelaide
(@adelaide)
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Joined: 4 months ago
Posts: 15
 

@quail444 You hit the nail on the head about vestibular testing. I'm having a follow-up appointment with the ENT I saw some months ago and he told me at the time that such testing would be expensive and not worth it. He also said that scans may help him "put some numbers" on my inner ear dysfunction, but would not add much value. If he suggests such testing or scans now, I will ask him if any of this information would materially change my diagnosis of "unilateral vestibular hypofunction" and, more important, lead to any different treatment options? The main treatment options generally seem to be "time" along with balance retraining exercises to help retrain the brain and teach the body to habituate and compensate . . . 


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TC
 TC
(@twitch)
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Joined: 5 months ago
Posts: 242
 

@elena1690 I do not understand 


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Covid vaccine
(@elena1690)
Active Member
Joined: 4 months ago
Posts: 55
 

@twitch

what neurological symptoms do you have

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dee
 dee
(@deedee)
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Joined: 5 months ago
Posts: 34
 

Just FYI. If you take magnesium, especially for brain inflammation the only form of magnesium to cross the brain blood barrier is magnesium theronate.  Magnesium glycinate is a good overall magnesium but some people can get diarrhea from taking it. A good liquid magnesium to take if that if you experience diarrhea  is Angstrom Minerals although it is pricey.  I had to take gobs of magnesium in order to start to heal from a cipro reaction (fluoroquinolone toxicity) which always gets worse before better and takes months to years to recover from for many people. It took me over 3 years to “mostly” recover. It damages your body at a cellular level.  Believe it or not some symptoms are very similar to vaccine reactions for some of us. Brain inflammation and nervous system inflammation is most likely temporary damage for most of us.   Here is my advice although you can take it or leave it. Stop looking for some disease that you have all of a sudden developed and spending gobs of money on treatments and medications. Most likely your body is healing and has had a hyper immune response and is also inflamed. Eat good clean food, take a few natural supplements that seem to be suggested on here. Relax and take a deep breath. Healing is not linear and can relapse and flair up and down but it means you are healing. I’m not telling you not to see your Doc for advice, lab work or testing. You do what makes you comfortable.  What I believe is that piling on medications in an already compromised body trying to heal and panicking over what Docs or you think may be a new disease is not helping your recovery. I really feel strongly that time will heal just about all of us if we calm down, stay patient, breath deeply and have faith. This is only based on my own healing journey both past and present from getting my P vax 9 weeks ago. I am “slowly” healing but time has been the biggest factor. My Doc tested for inflammation markers and they were increased from the vax. I feel very hopeful and have faith that time will heal us. Remember I am not giving medical advice only advice from a very similar healing journey that had a lot of commonalities. 


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Mango
(@bmango)
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Joined: 4 months ago
Posts: 7
 

@twitch - I am starting to feel so much better. The twitching in my calves still happens, but it’s not constant. There’s more of just a tingling feeling. I haven’t had any blood pressure spikes, it’s normal again. My fatigue and energy level are starting to come back, in fact I just cut my grass!  woo hoo 🎉

This is what has helped me:

Since I believe lots of diseases and issues occur because of inflammation in your body, and also being told by one Doctor (virtual visit) who told me I had inflamed nerves from the Covid vaccine, I decided to put myself on a very low inflammatory diet 3 weeks ago. I believe that has made the biggest difference and is calming whatever was going on in my body.

I don’t eat meat anyway, so that part was easy. But I also eliminated seafood, all dairy(butter, cheese, milk, etc.), eggs, and processed foods. 
My diet has mainly consisted of fruits, veggies, legumes, nuts, seeds and a little olive oil. 

One doctor I spoke to wanted me to take 800 mg of ibuprofen every 8 hours, but that seemed excessive to me. Another doctor wanted me to put me on extremely high doses of steroids, I’m talking 80 mg a day. I opted to remove things that cause inflammation in my body rather than add more things for my body to have to deal with.

I usually have a smoothie late morning with soy milk, hemp seeds, flax meal, frozen blueberries and a banana. At lunchtime I try to get in a salad or homemade vegetable soup. If I’m in a hurry I’ll have Dave’s killer bread with no sugar added peanut butter and an apple. I primarily eat all vegetables at night. I like to cook and I usually come up with something delicious. For desserts or sweets I’ll have some dates or figs with some raw walnuts, or I’ll make Chia pudding with plant milk.

Lots of water, herbal tea, black coffee, And I make these little ginger shots that have fresh ginger, lemon juice, coconut water and a little cayenne pepper.

I continue taking vitamin C, and turmeric during the day and at bedtime I take my vitamin D3 and magnesium. I also added Melatonin 3-5mg.

One of my labs showed an elevated level in creatinine kinase (sp) Which would mean there’s damage to my heart brain or muscles. They have not even checked my heart other than doing an EKG. I go back for lab work on Monday and I’m hoping to see improvement based on how I’m feeling.

And of course aside from all this, my healing comes from the Lord & lots of prayer. 🙏🏻❤️


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dee
 dee
(@deedee)
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Joined: 5 months ago
Posts: 34
 

By the way, I don’t want people to panic over me taking 3 years to recover from my reaction. Fluoroquinoline toxicity is extremely toxic for those that are unlikely to have a reaction as it is supposed to be “rare”. I just recognize a few common reactions from the vax that match up a lot. From what I have read on this site many and most recover in 3-6 months. Don’t panic and keep the faith. We will get there!


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LadyD
(@ladyd)
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Joined: 8 months ago
Posts: 145
 

@adelaide @adelaide thank you 😊 the advice was a double dose of magnesium and it’s too much for me so I’m in a position now where I know I have PPPD and I know that the recommended treatment is CBT alongside VT and SSRIS. So I’m going to try to be brave and get myself on the sertraline at the lowest possible dose to begin with because I don’t see any other way out. The anxiety has taken over my life now and I’ve tried everything else from CBT to CBD oil to reflexology to acupressure to Indian head massages but nothing worked yet. I’m becoming phobic and hyper vigilant so I’m focussed on every sensation in my body so that’s when I know the holistic approach just isn’t enough. I do feel once I tackle the anxiety that the dizziness will fade. That’s the general consensus from others I’ve spoken to that have PPPD. 

I hope you get some answers with your ENT but if you don’t I recommend the Harley Street Audio Vestibular Clinic. They at least acknowledge the vaccine has caused these problems with people  because they mentioned that in my clinic letter to my GP that they are seeing more and more people with vestibular disorders after vaccine. It was £220 for an hour on zoom but worth it to get a diagnosis at least! Best of luck 🤞🏼 


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Mango
(@bmango)
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Joined: 4 months ago
Posts: 7
 

@deedee sounds like you and I have had similar issues and are treating it the same. 😊


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LadyD
(@ladyd)
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Joined: 8 months ago
Posts: 145
 

@deedee I thought that it was inflammation initially too but my markers were all normal! I do agree that healing takes time but if you’re an anxious person it’s going to take longer to do so. I’ve found walking 6 miles a day in the countryside has helped me a great deal.


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LadyD
(@ladyd)
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Joined: 8 months ago
Posts: 145
 

@dempanic absolutely no idea what that is sorry!!


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LadyD
(@ladyd)
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Joined: 8 months ago
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@deedee I’m at 5 months now 😞 I hope you’re right! 🙏🏼


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TC
 TC
(@twitch)
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Joined: 5 months ago
Posts: 242
 

@elena1690 tingling and twitching are my main issue in legs a little that comes and goes in abdomen and hands. Eye twitch. 


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Covid vaccine
(@elena1690)
Active Member
Joined: 4 months ago
Posts: 55
 

 

 

 

I also have long-term neurological symptoms such as muscle twitching, tremors, shaking legs, arms and head. I see poorly with my right eye after vaccination.

 

 

 


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Adelaide
(@adelaide)
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Joined: 4 months ago
Posts: 15
 

@deedee Many thanks, I found your posts interesting and helpful in regards to your previous vestibular issues. As for time to recovery, my sense is that it varies with some taking a few months and some of us dealing with dizziness - in my case, only when walking - after 7 months or longer. At the risk of sounding too "statistical", by definition 8 months may be a typical time horizon for Covid vaccine recovery since these vaccines have only been around for about 9 months so our data set is limited. I know some on this forum have talked about being "long haulers" and my guess is that would apply to some people, with others seeing improvements in a shorter time horizon. 

Despite all of this, I am optimistic given that I have seen some gradual improvements in recent months, but you're absolutely right that the process is not linear! It often feels like 2 steps forward, 3 steps back with, say, a half-decent day followed by going back go square one. I'm no vestibular expert, but I know this is the case with non-vaccine related vestibular problems, with some people saying it took many months if not years to recover from Labyrinthitis and similar disorders.

My balance therapist has worked in the field for decades and says inner ear dysfunction doesn't disappear, but people learn to compensate through habituation/keeping physically active as the brain gradually retrains itself to deal with the conflicting signals it is getting. It's a similar process to what ballet dancers, fighter pilots, and astronauts go through to train their bodies to deal with dizziness . . . 


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am85
 am85
(@am85)
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Joined: 4 months ago
Posts: 15
 

@adelaide hello adelaide! i just read your message. I also have many similar symptoms, rocking, jelly legs days after vaccine, two HUGE vertigo attacks lasting 24 hours and not being able to move and most important persistent dizzinness. The protocol of Magnesium Glycinate (it must be glycinate) 200mg-400mg per day at night (until you can tolerate it, remember dose is the key and everybody is different, when you start having side effects just stay a bit below that dose), Coq10 100mg-200mg day, Lorazepam 0.25mg night (please check all this with a doctor please as lorazepam is addictive and a nasty drug to withdraw from). This protocol has really helped me a lot. 

VNG/ENG was a good study for me. It is very precise for Vestibular Issues, as it considers many nerves that control our vestibular system, and it is a cheap study. MRI can also be good to discard, the problem is that i had another HUGE vertigo attack after MRI, probably from the magnetic field,  lasted 24 hours but the study can help to discard other serious issues.

I also had blood tests to look for inflammatory markers but all went normal. So I have three theories, either a vestibular migraine from vaccine (which has some type of characterstics, this is my dx from a very renowned Otootologyst), some sort of persistent dizzinnes or sensatory dizzinnes or a functional neurological disorder.

Please keep us letting us know!


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