@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."
Thank you! I'll check this out too.
I've also sent you a message. Could you please reply to that as well... I hope something works out soon.
@pfizerinjured no, the vasodilatation leads to brain fog, headaches, and the pressure can increase broader Neuro symptoms. Raised BP and BP spikes are caused by one of two things (past immediate post vax reaction phase): 1) autoantibodies (and possibly molecular mimicry) that disrupts the body's blood pressure regulatory system (Renin Angiotensin System) in some way, or 2) autonomic dysfunction due to either auto antibodies interfering with the balance of sympathetic/parasympathetic nerve balance (similar to POTS) or same effect but instead of antibodies, driven by micro-vasculature interruption of blood flow to the autonomic nerves causing disruption (e.g. neuritis in nerves, neuroinflammation in brain).
If your BP is mostly normal baseline and then spikes with movement or certain times of day, it's more likely #2. If your BP is constantly high and spikes on top of that, it could be either #1 or #2.
@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?
Yes, that's right. It was the worst during the first months, then become better 60-70%, but remained constant and no change really. I tried both Zyrtec and Telfast, both of them worked for me when I took them just before sleep.
Update: In few days it is one year since I got my first jab. When I wrote my last post I was quite depressed and didn't feel well physically too. I felt that I urgently need a break and change of the environment, so I spontaneously decided to go on a 5 day long holiday, alone. It was the first time I spent more than a day away from home over the past year, but I really needed it. I have been back for 4 days now and I have to say it was the best decision I have made.
I was finally able to get rest and dig that anxiety out of my body. I was also quite active (did swimming and lots of walking), nearly all whole days were spent outside (felt mostly fine, except some moments). And the result? Since I'm back, I have had no dizziness that I can recall, no brain fog, no insomnia really, even tinnitus feels ~50% less than two weeks ago and I feel much more energy now. I didn't expect that at all and this is very encouraging! But I'm not cheering yet, because as we all know a relapse can be just around the corner. I really-really hope I'm not falling back to the hole again, but I will do another update in a month and let you know.
Till then, y'all take a holiday!
@ksmith I've been dizzy since second shot Feb 2021.
You still dizzy? haven't got any better?
@pfizerinjured no, the vasodilatation leads to brain fog, headaches, and the pressure can increase broader Neuro symptoms. Raised BP and BP spikes are caused by one of two things (past immediate post vax reaction phase): 1) autoantibodies (and possibly molecular mimicry) that disrupts the body's blood pressure regulatory system (Renin Angiotensin System) in some way, or 2) autonomic dysfunction due to either auto antibodies interfering with the balance of sympathetic/parasympathetic nerve balance (similar to POTS) or same effect but instead of antibodies, driven by micro-vasculature interruption of blood flow to the autonomic nerves causing disruption (e.g. neuritis in nerves, neuroinflammation in brain).
If your BP is mostly normal baseline and then spikes with movement or certain times of day, it's more likely #2. If your BP is constantly high and spikes on top of that, it could be either #1 or #2.
Thanks for another detailed reply, Mike.
I think for me, it is both 1) and 2).
But I've had some weird headches since the vax. I rarely had headaches in the past. But lately (I am 6 months post 2nd jab), I've been having some pressure headaches (like there's a tight rubber band around my head), or throbbing headaches which I almost never ever had before.
My BP is borderline high, isn't it, at 125-30/80ish? have all kinds of symptoms, inclg neuritis, neuropathy etc. Should I panic?
I wonder if they'd help us, ie. people injured by the vaccines?
@ichi that’s good to hear. How long have you been taking the antihistamines? And are you now getting 7 hours?
@callie I took them few weeks, then I made a break as it didn't work so well anymore (either because of flare up or some tolerance came??). afterwards I took them 2-3 times a week when I felt I need to. I was able to sleep 7-8 hours and when I wake up I was also more sleepy than without taking. but now I haven't taken them since I went to holiday and have been sleeping 7-8 hours too. good luck!
@pfizerinjured no, the vasodilatation leads to brain fog, headaches, and the pressure can increase broader Neuro symptoms. Raised BP and BP spikes are caused by one of two things (past immediate post vax reaction phase): 1) autoantibodies (and possibly molecular mimicry) that disrupts the body's blood pressure regulatory system (Renin Angiotensin System) in some way, or 2) autonomic dysfunction due to either auto antibodies interfering with the balance of sympathetic/parasympathetic nerve balance (similar to POTS) or same effect but instead of antibodies, driven by micro-vasculature interruption of blood flow to the autonomic nerves causing disruption (e.g. neuritis in nerves, neuroinflammation in brain).
If your BP is mostly normal baseline and then spikes with movement or certain times of day, it's more likely #2. If your BP is constantly high and spikes on top of that, it could be either #1 or #2.
Thanks for another detailed reply, Mike.
I think for me, it is both 1) and 2).
But I've had some weird headches since the vax. I rarely had headaches in the past. But lately (I am 6 months post 2nd jab), I've been having some pressure headaches (like there's a tight rubber band around my head), or throbbing headaches which I almost never ever had before.
My BP is borderline high, isn't it, at 125-30/80ish? have all kinds of symptoms, inclg neuritis, neuropathy etc. Should I panic?
those numbers would be pre-hypertensive in US and normal in Europe. Some people are getting consistently high BP with spikes on top of that. That is my situation. My BP would regularly stay in the 160s to 170s and in afternoon spike higher. For others, BP is very normal in some situations like lying down but tends to spike to 150s to 160s with movement/exertion and especially lifting things. The former is believed to be more auto immune and the later more autonomic dysfunction due to underlying vascular dysfunction.
Your focus should be on limiting vascular inflammation and bringing down cytokines/removing remaining spike protein and managing thru symptoms in meantime. Hopefully, over time those will all normalize and then if there is any autoimmune, it can slowly resolve on its own.
Statins and low dose aspirin for many months consistently can help. Fluvoxamine low dose (12.5mg to 25mg) can help with brain fog and pressure issues. Low inflammation/low histamine diets can help and/or taking H1 AND H2 antihistamine blockers; and possibly taking a DAO histamine blocker. If you can tolerate it, 5 to 7 day water fasts can really help. For me, I have not done that because my BP med needs to be taken 3x daily with fatty foods for absorption. Works to force inflammatory cells into autophagy (die off) and thus reset and calm immune system.
Gut health is important: highly associated with balancing the immune system. Pre and probiotics over time can help there.
Some supplements that help balance the immune system, calm cytokine inflammation and even help re-polarize the bad monocytes (holding onto spike): Vitamin C 500mg time release x2 daily, melatonin 5mg - 10mg nightly, Omega-3 3 to 4 grams daily.
IF you are not taking alot of prescription meds, the best herbal supplements are Curcumin, Dandelion Root, and Black Cumin Seed.
NAC and Vitamin D are more iffy: helps some and makes things worse for others. I personally stay away from them. Vitamin D may block the re-polarization of bad (nonclassical) monocytes. And it has a LONG half life: if it make things worse, it's not going to leave your body for months!
In meantime, you can try LDN or Gabapentin to help calm nerve pains until your body can heal.
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."
You may have seen Dr. Been's recent interview about the NIH/NINDS study.
"First Ever NIH/NINDS Study on Vaccine-Caused Neurological Injuries (Preprint)."
https://www.youtube.com/watch?v=9XGpe6MTaFg
It covers some of the possible treatments for neurological and other vaccine injuries and explains why treatments such as steroids and IVIg may only have a temporary effect. (Steroids such as prednisone may be most useful if given within a week or two after the initial vaccine injury.) Benefits of an anti-inflammatory diet are also discussed.
If anti-spike antibodies and especially autoantibodies are a major factor behind symptoms, Dr. Been suggests that it would be optimal to figure out a way to get rid of the B cells producing the antibodies as well as the B cells producing the autoantibodies, as opposed to just getting rid of the antibodies and autoantibodies themselves.
Dr. Been said he plans to interview Dr. William Murphy, who has studied autoantibodies after covid vaccination, on Monday.
Here is one of Dr. Murphy's articles:
https://www.nejm.org/doi/full/10.1056/NEJMcibr2113694
And responses to his paper:
I started getting blocked ears a few days after my booster (I got boosted late, in march of this year). Progressed to ear pain and tinnitus, and eventually a strange dizziness and tiredness that has lasted a couple months now. I'm hesitant to blame the vaccine, this could also be a virus or a number of other causes but it is interesting to see many people with similar symptoms. I saw an ENT doctor and he has confirmed that he has seen many patients with ear and balance problems from the vaccines and from COVID-19 infection. I still have tinnitus but no hearing loss according to a hearing test. He gave my a 6 month recovery time for the tinnitus but he may have just been trying to make me feel better.
Time since booster that caused symptoms: 10 weeks
Summary of symptoms:
-'On a boat' constant dizziness that does not seem to respond to traditional vertigo treatments
-Tiredness and brain fog
-Tinnitus in both ears that seems to constantly be changing. Its louder in the side I got my shot on.
@pfizerinjured no, the vasodilatation leads to brain fog, headaches, and the pressure can increase broader Neuro symptoms. Raised BP and BP spikes are caused by one of two things (past immediate post vax reaction phase): 1) autoantibodies (and possibly molecular mimicry) that disrupts the body's blood pressure regulatory system (Renin Angiotensin System) in some way, or 2) autonomic dysfunction due to either auto antibodies interfering with the balance of sympathetic/parasympathetic nerve balance (similar to POTS) or same effect but instead of antibodies, driven by micro-vasculature interruption of blood flow to the autonomic nerves causing disruption (e.g. neuritis in nerves, neuroinflammation in brain).
If your BP is mostly normal baseline and then spikes with movement or certain times of day, it's more likely #2. If your BP is constantly high and spikes on top of that, it could be either #1 or #2.
Thanks for another detailed reply, Mike.
I think for me, it is both 1) and 2).
But I've had some weird headches since the vax. I rarely had headaches in the past. But lately (I am 6 months post 2nd jab), I've been having some pressure headaches (like there's a tight rubber band around my head), or throbbing headaches which I almost never ever had before.
My BP is borderline high, isn't it, at 125-30/80ish? have all kinds of symptoms, inclg neuritis, neuropathy etc. Should I panic?
those numbers would be pre-hypertensive in US and normal in Europe. Some people are getting consistently high BP with spikes on top of that. That is my situation. My BP would regularly stay in the 160s to 170s and in afternoon spike higher. For others, BP is very normal in some situations like lying down but tends to spike to 150s to 160s with movement/exertion and especially lifting things. The former is believed to be more auto immune and the later more autonomic dysfunction due to underlying vascular dysfunction.
Your focus should be on limiting vascular inflammation and bringing down cytokines/removing remaining spike protein and managing thru symptoms in meantime. Hopefully, over time those will all normalize and then if there is any autoimmune, it can slowly resolve on its own.
Statins and low dose aspirin for many months consistently can help. Fluvoxamine low dose (12.5mg to 25mg) can help with brain fog and pressure issues. Low inflammation/low histamine diets can help and/or taking H1 AND H2 antihistamine blockers; and possibly taking a DAO histamine blocker. If you can tolerate it, 5 to 7 day water fasts can really help. For me, I have not done that because my BP med needs to be taken 3x daily with fatty foods for absorption. Works to force inflammatory cells into autophagy (die off) and thus reset and calm immune system.
Gut health is important: highly associated with balancing the immune system. Pre and probiotics over time can help there.
Some supplements that help balance the immune system, calm cytokine inflammation and even help re-polarize the bad monocytes (holding onto spike): Vitamin C 500mg time release x2 daily, melatonin 5mg - 10mg nightly, Omega-3 3 to 4 grams daily.
IF you are not taking alot of prescription meds, the best herbal supplements are Curcumin, Dandelion Root, and Black Cumin Seed.
NAC and Vitamin D are more iffy: helps some and makes things worse for others. I personally stay away from them. Vitamin D may block the re-polarization of bad (nonclassical) monocytes. And it has a LONG half life: if it make things worse, it's not going to leave your body for months!
In meantime, you can try LDN or Gabapentin to help calm nerve pains until your body can heal.
Mike, thank you sooo much for all that. I hope I understood most of what you've said, lol.
I believe I have both vascular inflammation as well as autoimmune issues, such as pressure (and sometimes throbbing) headaches, super high antibodies (TPO around 1400. I have Hashimoto's but this is super super high). I also have histamine issues when I never used to. I've recently started a low histamine diet and am considering takin a DAO supplement. Looking into H1 and H2 blockers (any you can recommend please?).
I don't think I can fast. I shake badly with hunger and can't go for a few hours without eating (could be blood sugar issue? dunno). I take Umeboshi as a prebiotic and am looking for a low histamine probiotic (a bit reluctant to take it as some/ most are fermented and can be an issue for someone with histamines problem).
Do you know which Vit C is good? I read some are just corn syrup fermented (so mould is an issue here).
I am taking Omega-3, though not as much as you recommend. Trying to increase the dosage.
Have Dandelion Root and am considering taking it/
NAC and black cumin seed (the latter I loved) are now not available options as I am dealing with a relapse of Botox poisoning (Pfizer triggered the relapse). I think Curcumin is also out.
Vit D is that bad huh (though I am not sure I fully understand what you've said about it. I need to read up more!!). I am apparently low on Vit D (as well as B12). What do I do now?
Will ask my PCP about LDN and Gabapentin.
Many thanks again.
I started getting blocked ears a few days after my booster (I got boosted late, in march of this year). Progressed to ear pain and tinnitus, and eventually a strange dizziness and tiredness that has lasted a couple months now. I'm hesitant to blame the vaccine, this could also be a virus or a number of other causes but it is interesting to see many people with similar symptoms. I saw an ENT doctor and he has confirmed that he has seen many patients with ear and balance problems from the vaccines and from COVID-19 infection. I still have tinnitus but no hearing loss according to a hearing test. He gave my a 6 month recovery time for the tinnitus but he may have just been trying to make me feel better.
Time since booster that caused symptoms: 10 weeks
Summary of symptoms:
-'On a boat' constant dizziness that does not seem to respond to traditional vertigo treatments
-Tiredness and brain fog
-Tinnitus in both ears that seems to constantly be changing. Its louder in the side I got my shot on.
I could've written this exact post, word for word.
I'm suffering from all these (plus many more) since the Pfizer vaccine. My Dr and a few other healthcare providers have admitted they've seen patients with these symptoms post vaccines.
A physio told me that my vertigo (room spinning) and dizziness (on a boat feeling) are NOT going to respond to traditional treatments, for eg. the Epley Manoeuvre because this is not a middle/inner ear issue, rather it is nerve damage.