@nickpaul thank you for your response. I would take anything at this point but my doctor won’t prescribe anything. I have to go through a psychiatrist and that is 300.00 each visit. I’m completely helpless as I need some type of medication as the extreme anxiety and restlessness and depression is beyond and I can’t financially keep going to these appointments at 300.00 a pop and they only give you 30 days medicine then it’s another 300.00 . Sorry for the rant, it’s been a rough couple of days and I don’t see any end in sight.
I feel sorry for all of us. My vaccine has hit me the hardest MENTALLY!! Never had an issue before or I was able to control it naturally. Not sleeping right for a few months isn't helping.
What are your symptoms? What have you tried?
Hope we all get back to feeling our usual selves.
5 weeks since having the jab my symptoms not easing.
Numbness all over
Reduced hearing
Cannot feel emotion
Cannot feel hunger signals - weight plummeting fast
After taking a short walk yesterday I felt like my chest was going to explode, literally had to lay down felt like I might collapse. A horrible uncomfortable feeling.
Been to A&E twice in the 5 weeks, they ruled out stroke and that was it. They recognise that it may be my sensory nerves. Why would they not check everything on my visit to confirm rather than leaving me to wait 3 months for a neurology appointment that my GP had to refer. I'm scared the most damage will be done by then and won't be reversible.
This is frustrating. 😔
The mechanisms that seem to be involved are: inflammation, autoimmune phenomena, histamine problems (allergy, MCAS), tendency to coagulation or bleeding, infections, deficiencies (for example, vitamin D), toxic elements, mitochondrial dysfunction and more.
I would like to add that, in order to specify the mechanisms that seem to be involved in the occurrence of side effects, it should not seem something that complicates more, but something that helps.
Because it provides guidance, to therapeutically address the issues that have arisen, especially because there is not always medical support.
A treatment of side effects must follow some principles and everyone can approach individually, to treat personally, at least partially, each of these aspects, depending on what he finds in his country.
For example, if inflammation is known to be involved, some may use curcuma because they can easily find it, perhaps even better quality, and others may use other, country-specific herbs, who can find them easier.
The side effects reported are very different, in different people, but, summing up all kinds of reactions, certain phenomena are assumed or are already confirmed.
Generally speaking, that is, valid in all diseases that exist, it is known that there are interactions between such elements, for example:
-endothelial damage and vascular inflammation are known to lead to clotting
-coagulation can cause inflammation and vice versa
-the inflammation can cause autoimmune phenomena
-immune dysfunctions favor the appearance of certain infections
-some infections (bacterial, parasitic) can be the cause of autoimmune phenomena (which will disappear when the infection is cured)
-some infections are involved in the onset of MCAS
-heavy metals, infections, lead to mitochondrial dysfunction, and so on.
There are interconnected mechanisms.
Therefore, the hope may be, for example, that improving one mechanism will improve others.
Of course, it is ideal that, for each case, laboratory tests can be performed that could identify the various disorders.
But for example, for MCAS, the list of symptoms, that everyone has, can help a lot in assuming that this mechanism can be involved, knowing how it can manifest itself.
If the assumption of MCAS can be made, then everyone can take a small step, at least, to approach the therapeutic and check if this would help.
So a low histamine diet, fresh food, unprocessed food, not ready-made in a box, in the first step, could be tried. And quercetin.Later, depending on the response, the antihistamines H1 and H2 could be added, because they are over-the-counter drugs.
Subsequently, if what was done did not help, this time, under medical supervision, higher doses of antihistamine, or other drugs, such as chromoglycate, etc.
Thus, each of the mechanisms can be approached individually, at least, the first steps, with diet, supplements, over-the-counter medications.
I think that the coagulation disorder is one that should be particularly investigated and somehow addressed.
But, likewise, tests should be done (D-Dimer, platelet count, anti-PF4 antibodies, antiplatelet antibodies, anti-cardiolipin antibodies and thrombophilia tests in general), would be ideal.
If it is not possible, then, at least, some measures should be taken to prevent coagulation: good hydration, avoid sitting still for a long time, avoid sweets, smoking and estrogen drugs, etc.
In addition, there are supplements for "blood thinning", antiplatelet agents and individually, with medical support, this should be addressed.
And so on, for each mechanism.
For example, because it is inflammation, it is very useful the anti-inflammatory diet (without sugar, gluten, dairy, coffee, alcohol) and the addition of anti-inflammatory supplements. Everyone can find, in their country, specific products, which are known and used for a long time, for this purpose.
In Germany, for example, there is a lot of experience with DMSO, which is an anti-inflammatory, which has been tested by many people with various conditions, for a long time.
There is also positive experience in using it, in case of side effects, as a young girl makes known:
https://www.youtube.com/watch?v=39U_tn_7-uM
So it is worth knowing, and this, given what effect is pursued.
About chiropractic, personally, I think it can not be seen as the basic method of treatment, because the side effects are still a systemic inflammation, especially of the nervous tissue. Personally, I do not think that bone manipulation can help much, on the contrary, it must be said that a principle in physiotherapy is that no pressure is applied to inflamed areas. But, of course, this is a personal opinion and there are many individual, particular factors.
Because any inflammation gives oxidative stress, antioxidants are indicated, as each has at its disposal and according to the severity of the manifestations. Some may take vitamin C liposomal or as an infusion, but others may have berries for a smoothie, others, vitamin E, sometimes. So this is also an important therapeutic direction.
Because heavy metals seem to be involved, it is also good to have tests and, depending on them, medical treatment (DMSA, DMSP, EDTA). But this is not always possible, therefore, this line of treatment can be, however, empirically followed, used, what can be available: a cup of coriander leaves, atlantic dulse leaf, etc.
Likewise, on the issue of reactivating latent infections or vulnerability to new infections, everyone can find in their country the right foods and naturopathic products to prevent or treat them, so do something about this possible problem.
https://www.sciencedirect.com/science/article/pii/S2405844021000621
I think, therefore, that it is good for everyone to know what the treatment directions are, to approach each one. I mean, one knows what he's doing, what his goals are. Treatment schedules cannot be fixed, but adapted, depending on personal resources.
The mechanisms are intricate, so remedies are sometimes common, for example, there are remedies that are anti-inflammatory, antioxidant and anti-infective, at the same time, such as curcuma. Good hydration detoxifies and prevents the formation of clots. And so on.
In the naturopathic treatment a great emphasis is placed on detoxification, so any method supports this, and can be applied, it must be used, after evaluating well, depending on the particularities of the case: zeolite, medicinal charcoal, clay, liver cleancing by Andreas Moritz and others.
Sauna, for example, should be avoided if there are cardiac manifestations (arrhythmia or tachycardia, chest pain).
Another line of treatment, that makes sense, and should be approached in some way, for each in its own way, is that of "de-stressing", that is to reduce, somehow, the emotional stress, especially since the neurons are already in little good condition, to be able to cope with such difficult life situations.
Adaptogenic therapies can be useful. Herbs such rhodiola rosea, eleutherococcus senticosus, increasing tolerance to stress.
Passiflora incarnata are used as a sedative, have calming effects in anxiety, help with sleep.
About mitochondrial dysfunction: of course, it can not be generalized, but the forum offers individual experiences.
I can say that I know a lady who has side effects, and since taking a product that contains Acetyl L-Carnitine, Alpha Lipoic Acid, Taurine, Pantothenic Acid, L-Glutamine, PS (Phosphatidylserine), has good relief: burning pain and numbness have decreased very much and she sleeps better.
I love you.
@tennyson77 Hi - I've read your previous posts with interest and wonder whether the improvements you have had have been due to compensation for the 25% degradation on the right side? I have not done any VNG or caloric tests so far since my UK ENT says they can be costly, although I am likely to proceed given that I have had some improvements but still have swaying/lightheaded sensations when walking so compensation is "incomplete". It would be interesting to confirm the degree of impairment and whether it's only in my left side as the ENT suspects (he suggests likely Vestibular Neuritis based on his office-based exam). He has advised against steroids or any drugs given their "nasty" side effects and the fact that their impact is temporary rather than permanent. Thanks!
@tennyson77 Hi - I've read your previous posts with interest and wonder whether the improvements you have had have been due to compensation for the 25% degradation on the right side? I have not done any VNG or caloric tests so far since my UK ENT says they can be costly, although I am likely to proceed given that I have had some improvements but still have swaying/lightheaded sensations when walking so compensation is "incomplete". It would be interesting to confirm the degree of impairment and whether it's only in my left side as the ENT suspects (he suggests likely Vestibular Neuritis based on his office-based exam). He has advised against steroids or any drugs given their "nasty" side effects and the fact that their impact is temporary rather than permanent. Thanks!
I probably agree with the doctor that steroids are mostly just temporary. There is an argument giving them within the first few weeks, as it helps recovery. But after that it'll just mask the symptoms for a while.
I've slowly improved. I had a slight regression after my booster shot, but still holding my own. I saw a new ENT and described my remaining systems, she put a scope way up my nose and said my eustachian tubes were blocked. So she's prescribed nasal steroids, saline washes etc, for now. I'd say outside (like walking around outside or going on hikes) I'm almost back to 100%. Inside I still have a few issues, mostly with people at close distances (like having coffee with friends). But i'm slowly getting better.
@nickpaul Thanks for the full update and background on your situation. Your experience of non-linear progress with X steps forward, Y steps back fits my experience exactly! My swaying/lightheaded sensations when walking have probably not been as acute or as debilitating as yours and other people's, although I was queasy when walking - like motion sickness - for several months but that has pretty much gone away. (I also have tinnitus in the left ear as a result of the first AZ jab, but that is less bothersome than the dizziness). My ENT thinks my slow, albeit non-linear, improvement in symptoms has been due to compensation over time and also doing vestibular rehabilitation.
I am self-funding privately in the UK given NHS waiting lists so my ENT suggested I delay doing VNG/ENG and any other formal vestibular testing given the high costs. However, I am likely to have at least some of the testing done given the chronic nature of my problem. If nothing else, confirming his diagnosis of Vestibular Neuritis on the left side and getting a % number on the degree of impairment would be good to know. However, I will ask the ENT and vestibular physiotherapist whether having this information would actually change treatment options. I'm not a doctor, but my understanding is that many vestibular/inner ear problems are treated with vestibular retraining and compensation over time (months, but can be longer) or with short-term "fixes" like steroids which relieve symptoms, although they don't "cure" the underlying problem and delay recovery through compensation.
One quick question - you mentioned your various tests, but I wasn't sure if you did a VNG/caloric or ENG test as well? Maybe those were part of the vestibular testing you have done and I wonder whether they gave you an indication of levels of degradation.
My Story:
Before: healthy (as far as I know), 39 years, female
DOSE #1 PFIZER (September 1, 2021)
A couple minutes after getting the dose, I felt a sensation of blood rushing to my head/rush of lightheadedness. I was okay, although I felt like I would pass out/vomit from time to time while I waited the fifteen minutes before I was cleared to leave. I didn't think *too* much of it, as I was double masked (making it a little hard to breathe anyway) and I hadn't hydrated or eaten dinner before getting the jab. I thought I'd feel better when I got home. However, I noticed when I got home that I started to feel more woozy/lightheaded. I figured it was just the vaccine side effects and went to bed. I felt an ache in my stomach that night. The lightheadedness/boat rocking sensation continued for the rest of the month. It was worse when I sat down (e.g. in the bathroom) or when I didn't have any back support on the couch or at a desk. It felt like I would pass out sometimes. However, as soon as I stood up, I would feel better. It was not spinning vertigo. I got a few panic attacks that seemed to be linked to upper abdominal bloating. I had never had upper abdominal bloating like this before. I changed my diet to eat less inflammatory foods, and the bloating subsided and the panic attacks stopped. However, the lightheadedness remained.
DOSE #2 PFIZER (September 28, 2021)
I got the second jab and didn't really get any additional side effects in addition to the lightheadedness/rocking/swaying feeling that I had continued to have since the first vaccine. This continued for the next four months, but the lightheadedness/rocking/swaying did get a little better over that time. In fact, I was starting to feel like maybe I was turning a corner by the 4.5 month mark. It was still there when I sat down, but it was easier to manage and I could drive.
BOOSTER PFIZER (February 10, 2022)
When I got the booster, I don't think I fully believed that the vaccine was causing everything. Weird, I know, but it kind of seemed taboo to think that. However, after the booster, the lightheadedness/rocking/swaying came back a lot stronger. I also got the upper abdominal pain again--which led to a couple more panic attacks. After the last bad panic attack (about two weeks after the booster), my doc thought that I likely had gastric vertigo (acid reflux that inflames the eustachian tubes). When my upper abs are not bloated, the lightheadedness goes way down. When I stand, it goes away. When I scrunch my stomach by sitting on the couch and folding my legs, it gets worse. Although the docs are reluctant to say it, I'm inclined to believe that the vaccine has caused my stomach issues. It's now been about a month since the booster, so I feel like the best thing for me to do is wait it out and the inflammation will improve with time. I have changed my diet to eliminate high histamine foods, caffeine and high acid foods, but I am not keep to go the PPI route because I don't want to get acid rebound.
Like many of you, this has totally unraveled my life. I have felt terribly down about it, especially feeling like I will have to deal with this forever, but reading many of your posts on here has been so helpful and encouraging. I will report back in the future--especially if I recover. Those stories help the most! 🙂
@heybro I have also taken zeolite drops in water 3 times a day for a few weeks to detox, and I have been on Homeopathic remedies for a few months from Homeopathic Doctor.
Close to 6 months into this and I can say I feel a slight recover from tinnitus and dizziness. I can't barely hear the ear sounds anymore and I am walking better feeling less dizzy. I keep on taking the zeolite, multivitamins and charcoal recommended on this forum. Brain fog is still the same and vision still bad but if the dizziness goes away I can manage those two. Please check Edward Dowd bombshell fraud charge Pfizer hiding deaths data. The truth is slowly coming out. Unfortunately Pfizer has a CONVINIENT agreement that gives them 75 years of immunity for the vaccine. I am so thankful to all of you for all the information posted. We will recover!!!!
Thanks for the updates! "Nice" that there are others who are in the same situation. I have felt so desperate because of this. I am also worried about future, for example vaccines could cause alzheimer. This is one hell living like this. Sending you lots of love and strengt ♡
@nickpaul Thanks for the full update and background on your situation. Your experience of non-linear progress with X steps forward, Y steps back fits my experience exactly! My swaying/lightheaded sensations when walking have probably not been as acute or as debilitating as yours and other people's, although I was queasy when walking - like motion sickness - for several months but that has pretty much gone away. (I also have tinnitus in the left ear as a result of the first AZ jab, but that is less bothersome than the dizziness). My ENT thinks my slow, albeit non-linear, improvement in symptoms has been due to compensation over time and also doing vestibular rehabilitation.
I am self-funding privately in the UK given NHS waiting lists so my ENT suggested I delay doing VNG/ENG and any other formal vestibular testing given the high costs. However, I am likely to have at least some of the testing done given the chronic nature of my problem. If nothing else, confirming his diagnosis of Vestibular Neuritis on the left side and getting a % number on the degree of impairment would be good to know. However, I will ask the ENT and vestibular physiotherapist whether having this information would actually change treatment options. I'm not a doctor, but my understanding is that many vestibular/inner ear problems are treated with vestibular retraining and compensation over time (months, but can be longer) or with short-term "fixes" like steroids which relieve symptoms, although they don't "cure" the underlying problem and delay recovery through compensation.
One quick question - you mentioned your various tests, but I wasn't sure if you did a VNG/caloric or ENG test as well? Maybe those were part of the vestibular testing you have done and I wonder whether they gave you an indication of levels of degradation.
@adelaide Yes, sorry I forgot to mention I had the VNG (Videonystagmography) done as part of the testing.
To set out my ENT's diagnosis for me alongside the tests which correspond (as best I understand it, I may not have got this completely right), in the hope it might help ...
MRI was normal; ENT said it is not possible to actually see the damage at a cellular level, other than by performing an autopsy - he was trying to be humorous, I was probably less receptive to humour than I normally might be!
vHIT (vertical head impulse test) "revealed overt saccades on both lateral canals".
The "cVEMPs were absent on the left" - for this test they taped some sensors and wires to my neck on the front-left and front-right and gave me a stimulus, I think it was a clicking noise in the ear, though my recollection is a bit hazy. There is a reflex action which should occur where a muscle in your neck on either the L or R should kind of jerk. For me on the left side, the muscle did nothing.
The caloric testing (pumping warm air into the ears) showed a "left canal paresis of 22%".
"No central features were seen on VNG" - I believe this means the brain / central nervous system is working OK, at least in relation to the body's balance system.
The results are "consistent with an uncompensated left peripheral vestibulopathy".
The tests excluding the MRI cost just over GBP 1,000. I was lucky enough to have insurance cover the cost. The only treatment in my case is the vestibular physiotherapy.
I believe the 22% figure kind of means the inner ear is 22% damaged - would that be your understanding also? That said, I'm not sure this translates easily into what degree of difficulty someone might have functioning. I suppose each individual is probably different and there are lots of variables at play.
The only thing I would say about having the test results is that throughout this whole ordeal I was wrongly diagnosed with a few things initially, including being told the good old "it's just anxiety". I've also researched a lot for myself when the doctors were not coming up with anything that seemed to fit, and this forum has been a huge help, although it often felt like going round in circles without any resolution. Plus, even after the ENT diagnosis I've still had moments where I've thought I am going crazy and where I've started to question everything again including whether I'm on the right path. In such times, I have been able to remind myself that I had these tests done, that the results provided objective and quantifiable measurements, that the ENT interpreted these to come up with the diagnosis and treatment plan, and that therefore the results are probably the best re-assurance I'm going to get that the diagnosis is right.
Good luck, and please let us know how you get on.
@tennyson77 If you don’t mind me asking, what were your remaining symptoms that led your ENT to prescribe nasal steroids for blocked Eustachian tubes? Thanks.