Can someone give me some info or help me out? I've been vaccine injured since last June. I have recently been having neurological issues come up again. Doctors keep wanting me to take tests and I think it's a waste of money. I took cytokine back in September and obviously they were crazy and inflamed. My brain feels fuzzy, like my receptors are blocked/not working. I can't feel anything if I drink or vape ( I don't do these things every day, only socially but I don't even do it anymore because I don't feel anything) I need something to fix this, whether its a supplements, prescribed medicine, etc. I am tired of migraines, tightness around my head, advil, tylonel, etc makes it worse. my LDN doesn't seem to be doing anything for me anymore.
To those with dizziness; Did you experience tingling in the face shortly after your vaccination (1-3 days after)? I know I did, and I think it is related to the constant feelings of unsteadiness that never let up since my vaccinations in July/August 2021.
1-2 days after my first Pfizer vaccination, I experienced weird facial tingling. My physician of course told me it was anxiety, but I have always been 100% sure it was not. The timing was impeccable.
My theory is that something in the vaccine, or a reaction the vaccine sparked, damaged my facial nerves in some way. The tingling is an indication of this. I think it is some kind of neuropathy that hinders the communication in the facial nerves and hence sets off feelings of unsteadiness and a lightheaded feeling in general. I believe cranial nerves are considered peripheral, so one would think those have some capacity to recover.
Does anyone know if there is a test for neuropathy? I did the whole battery of tests; MRI, Videonystagmogram, vHIT, blood tests (anemia, cardiac and others), hearing tests, neurological examination, ANA tests, d-dimer... But everything came back fine.
Anyone similar experiences?
So does anyone else ever look into the mirror and wonder who is that person? Seriously this vaccine has completely changed me. But I keep hoping and praying that we will recover. Some of my symptoms are better and I haven’t gotten any new ones so I’m grateful. But honestly some days are difficult mentally and physically. We have to keep talking things through together because we are the only ones who truly understand.
@lookingforanswers definitely felt that way today trying to drive home without having dizzy spells
New pre-print article worth a look. Tagged from Avindra Nath. If you don't know who he is, he is at US NIH and has been investigating post vax for some time. So this would be a publication US doctors would be more inclined to accept as true.
Seems the data supports. Interesting the super heavy skew to females, which I've heard elsewhere as well: this is vastly more a female vs. Male issue both in likelihood to contract and in severity. Also interesting on early treatment with steroids and longer term IVIG results.....
https://www.medrxiv.org/content/10.1101/2022.05.16.22274439v1
Thank you for posting this. It is a start. At least they stated that: "Since all SARS-CoV-2 vaccines encode the spike protein, anti-spike protein immune responses may link post-COVID and post-vaccine syndromes."
Can someone give me some info or help me out? I've been vaccine injured since last June. I have recently been having neurological issues come up again. Doctors keep wanting me to take tests and I think it's a waste of money. I took cytokine back in September and obviously they were crazy and inflamed. My brain feels fuzzy, like my receptors are blocked/not working. I can't feel anything if I drink or vape ( I don't do these things every day, only socially but I don't even do it anymore because I don't feel anything) I need something to fix this, whether its a supplements, prescribed medicine, etc. I am tired of migraines, tightness around my head, advil, tylonel, etc makes it worse. my LDN doesn't seem to be doing anything for me anymore.
assume by cytokines. you mean you had the IncellDX cytokine profile (14 cytokines) done? Generally, you at least need a good statin and low dose 81mg aspirin as a foundation and take for many months to maximize its potential. atorvastatin gets into brain and can help with many with neuro inflammation. so treats both symptoms and the root cause.
LDN works for some to symptom relief but it's doesn't permanently treat it just helps some keep going until body can overcome this. Depending on which cytokines were high, some do well on Fluvoxamine to help with brain fog, headaches, etc, while working to bring down several important cytokines.
The tightness around head, migraines, etc. are very indicative of vasodilatation due to vascular inflammation and damage. vessels are expanding increasing pressure and blood plasma leaks out of tiny capillaries due to damage and creates more pressure.
@ichi Hi, I just saw your 11 month update post. Is that how long you’ve had the insomnia for? I also have insomnia. Has it got any better over time? And what antihistamine are you taking?
@ashleyc unfortunately I still have the visual snow and floaters. I also have insomnia so the lack of sleep isn’t helping. I wish I had better news to share. You say you’ve had it 3 months so hopefully you will see improvement over time.
Covid vaccines causing neuropathies in people:
@medee I wish someone could explain why her symptoms are so much worse at night while we sleep. I’m guessing it’s the autonomic nervous system I just don’t understand why it would worsen at night.
The immune system may be more active at night.
"Researchers have found that during nightly sleep, certain components of the immune system rev up. For example, there is an increased production of cytokines associated with inflammation." (from sleepfoundation.org)
So how do I fix this? It used to get cold with chsst tightness during Jan-Mar and now it has started to turn hot with tightness.
I did 10 HBOTs, felt better for just 2 weeks or so and it again started turning cold and then moved to hot.
It really scary. Also I can't breathe and get bad palps
Interesting that hyperbaric oxygen therapy seemed to help, even if it was temporary. Some people may have more than 10 sessions - do not know what the risk-benefit analysis would be.
Based on this, it could be that symptoms are linked to lower than usual oxygen levels. This may happen to some people with long covid also. May be hard to do deep breathing exercises, if that would help at all.
@carym23 had a suggestion below to try to buy a pulse oximeter online to get a rough measure of your oxygen levels at different times. Maybe you could then take this information to a cardiologist or other doctor.
It seems the best thing might be to try to find a cardiologist or other doctor who will take the symptoms seriously and accept that you do not want to take further medication for this, since medication seemed to make it worse in the past. If there is not a good doctor in your area, maybe through telemedicine?
I'd be tempted to contact a functional medicine doctor like Dr. Galland, who may have worked with some patients with vaccine injuries, and ask his advice or ask his office who to contact for advice:
https://drgalland.com/contact/
Also, if symptoms at night are linked to higher levels of inflammatory cytokines at night, then lifestyle methods to decrease inflammation should be relevant: an anti-inflammatory diet and maybe some anti-inflammatory and/or other supplements (maybe magnesium, b vitamin complex?). Not sure if intermittent fasting has helped some people. Can't really give medical advice, but maybe a functional medicine doctor could advise?
@medee It's just a thought because you mentioned chest tightness which can come from respiratory system. You can easily purchase a pulse oximeter at a pharmacy or Amazon. they are easy to use and give you a reading of your blood oxygenation and heart rate.
He replied saying he can't take new patients until October.
If you can't find a decent health care provider who is willing to acknowledge covid vaccine injuries, maybe you could consider contacting Remote Health Solutions listed on the React19 website:
https://react19.org/physician-network/
"If you have a provider that you find outstanding, please email us at [email protected] so that we can consider adding them to our growing network of “vaccine injured friendly” providers. These can be physicians, nurse practitioners, chiropractors, acupuncturists, physical therapists, or other providers. However, if you haven’t found a local practitioner, React19 has partnered with Remote Health Solutions to provide telehealth for primary medical care."
Can someone give me some info or help me out? I've been vaccine injured since last June. I have recently been having neurological issues come up again. Doctors keep wanting me to take tests and I think it's a waste of money. I took cytokine back in September and obviously they were crazy and inflamed. My brain feels fuzzy, like my receptors are blocked/not working. I can't feel anything if I drink or vape ( I don't do these things every day, only socially but I don't even do it anymore because I don't feel anything) I need something to fix this, whether its a supplements, prescribed medicine, etc. I am tired of migraines, tightness around my head, advil, tylonel, etc makes it worse. my LDN doesn't seem to be doing anything for me anymore.
assume by cytokines. you mean you had the IncellDX cytokine profile (14 cytokines) done? Generally, you at least need a good statin and low dose 81mg aspirin as a foundation and take for many months to maximize its potential. atorvastatin gets into brain and can help with many with neuro inflammation. so treats both symptoms and the root cause.
LDN works for some to symptom relief but it's doesn't permanently treat it just helps some keep going until body can overcome this. Depending on which cytokines were high, some do well on Fluvoxamine to help with brain fog, headaches, etc, while working to bring down several important cytokines.
The tightness around head, migraines, etc. are very indicative of vasodilatation due to vascular inflammation and damage. vessels are expanding increasing pressure and blood plasma leaks out of tiny capillaries due to damage and creates more pressure.
Mike, is this vasodilatation responsible for spikes in blood pressure? My BP can be through the roof these days (not all the time though). Like yesterday, it was 155/94 when it's normally in the 125-130/80ish.
Back in March I went to a rheumatologist since I had a mildly elevated ANA. He did an extensive work up for connective tissue disorders, including Lupus, and found everything to be negative and that the ANA was negative. He keeps bringing up drug induced lupus. He says its possible if I had tested my ANA levels 1 year ago, my ANA would have been much higher (received vax 04/29/21, Low ANA - 02/2022). He says drug induced lupus resolves when you stop the drug causing it. I personally don't think drug induced lupus explains my predominantly neurologic symptoms. Actually, I'm thinking our currently available clinical labs and tests will not answer our questions.
I did bring up all the data that has been coming out regarding auto-antibodies and he said he was aware of them but the lab studies are not readily available for clinical practice. I was hoping to come back here with more helpful information to share...but no luck.
So far...nothing helpful from neuro, ENT or rheumatologist. My primary flatly told me he has no idea and that they are all kept in the dark.
Not giving up...I need to understand what has happened and what the long term ramifications are going to be if any..
Stay strong!
For those who have GI issues : apparently I have something called SIBO, and my doctor will treat me for it. Apparently it’s quite common for people like us to have either SIBO or dysbiosis.