Are there any long haul headache sufferers on here? I’m 6 months in and all I have left are these awful pressure/tension headaches along with neck stiffness.
I’ve had a couple of 2 weeks breaks from them, but they’re pretty much constant. Some days it’s like there’s a baseline headache that gets worse then eases off again. Other days I feel very little. I’m currently on amitriptyline, but it only seems to work some days. CT booked for end of March as all avenues have been exhausted trying to find the root of the problem. Dr was reluctant as I don’t have any other worrying symptoms.
It would reassure me to hear from other long term headache suffers?
I've been having lots of headaches and neck aches. I did have a headache that lasted two months. Since then I have headaches several times a week and on and off during the day but often not bad enough to require pain relief.
Have you tried taking a low dose of aspirin?
Hi Kit, i remember u have eye issues. Arw they resolved now?
Do u have double vision, and vision that become dim and clear again on and off?
@saba Hi Saba,
We're on the same boat with the floaters, I’ve had them since August so it’s been 8 months and they’re annoying as hell! I have dark and translucent ones. I think they have gotten lighter but still present. I started taking lutein recently, are you taking anything for your vision?
@hisrichess hey! Glad to hear you are doing better!! How are your eye floaters? Have they disappeared?
hey there. haven’t been on my phone much due to obvious reasons. im on my 7th month now, entering my 8th. the floaters have lightened up but now im dealing with static-gritty-like visions whenever in dimly light or bright areas. also dealing with white flashes now.
pretty sure they are worsened now due to me getting tired of eating like a caveman and wanting some horrible chinese food, along with some hot chips.
Hey, I did have the static and hazy vision back in September but it lasted about a month or two and it subsided. Try taking lutein for your eyes.
@watis Hello there! I'm nearly 5 months after my 3rd booster jab (Moderna). I was in hospital 4 times, like for 3 months. ER twice. Docs simply dealt with my symptoms as "malaise". The 4th hospitalisation, I was so weak that I thought death was imminent. Turned out my sodium/chloride levels were dangerously low. On top of that I had developed pancreatitis which resolved itself in my 2nd hospital stay. I've taken lots of supplements recommended here. But these days, I'm only keeping glutathione, vit D, multivitamins, omega 3 and a diet devoid of sugar and any form of fried stuff. Oil, only drizzlings of extra virgn olive oil. Oats, blueberries and lots of rice and chicken breast for lunch. Light dinner with more rice and beans and veggies. No redcmeat at all. I lost a lot of weight but only now, thanfully, am regaining some. I still feel lightheaded, specially in the evenings but nothing compared with the hell, physical and psychological, I went through. I find that short walks and sunbathing for 20 minutes or so have helped expedite recovery. Strangely, I've taken BP meds for 20 years. I had to stop because BP became low. And I always need to check it. Please give time time. You'll slowly see yourself getting out of this hellish rabbit hole, I'm sure. Are your sodium levels normal? Stay strong!
Guys I am today at 2,5 Months and i literally feel worse and wore from day to day and also weaker and weaker from day to day.
Is this normal in any way?
Or are the vacc effects just slowly finishing me off and making me worse from day to day.
How high is the probability that this is he case.
The normal blood test I Had several times was fine. Also my d-dimere is very low.
Need I to go to the ER or to the hospital because i just feel so weak and so unwell?
It really worries me, since I do not have any good days.
Many thanks for any answers!
I found these on the forum
that ones long but it explains it all
Then theres
https://covid19criticalcare.com/covid-19-protocols/i-recover-protocol/
I hope you feel better
@mike411 how do we approach this information to a GP? Omg I tried going to two different doctors and they flat out said it’s not the vaccine. I am so angry and over this nonsense of no one believing me. When I did my research and got every test under the sun that shows all normal. I had to go to my GP and tell them I’m having joint pain and how she’s doing a full work up on rheumat stuff. So she’ll be looking at Ana…rheumatoid factor etc..if those come back positive then she’ll further explore with interluekin specific…so then my plan is to get my labs and see someone else but I’m not sure who to go to at this point ..I am at a dead end I did start taking herbals for the protein spike that was recommended I also started on an anti inflammatory diet…those did help with that shot nerve feeling I had in my body and I’m feeling like I’m able to sleep better…so I know this is vaccine related…I was so healthy before this and no issues with eyes or ears…
Good point with the sodium levels!I have zero checked them! i haveto check my sodium/chloride levels.Howdoyoudothat?
And what do you take to fill it again? Isotonic drinks or what?
I am also feeling weaker and weaker from day to day and I think I die soon.
Exakt same thing I have too: I've taken 4 BP meds for 8 years. I had to stop 3 already, because BP became low.
Thanks for the advices!
@margaret2022 I hear you. Traditional doctors are very slow to come around to post vax issues. Only recently have they started to embrace that there "can be" some form of long covid but in that case alot of them just believe the body is worn down by the initial virus and taking a long time to recover. Vs. the truth is it's about spike protein, deregulated immune system, and in some cases auto antibodies/auto immune issues taking a long time to resolve.
In my case the suddenly super high BP that is difficult to control has gotten their attention. Even then, I've had to deal with the typical "anxiety" diagnosis being thrown about. And to be clear I do have anxiety as a result of this and I'm sure that's not helping things but it's which came first and is the primary cause. I have found alot of specialist doctors have started seeing a few post vax cases and are in past few months seem to be starting to recognize it. Even then, they have no idea how to treat except the direct symptoms. And trying to get them on board with theories and protocol treatments is probably futile unless you have a very special doctor with a great relationship working with them.
I mention the theories to my doctors and they generally just role their eyes or look confused. So I chart my own course and do as much of the treatment protocols I can for now (e.g. Statins, low dose aspirin, melatonin, vitamin c, magnesium), focus on treating my BP with them, and once that is under control in some way, will then explore functional doctors that are listing themselves as treating post vax people with the treatment protocols. FLCCC website has a doctor's resource page. Alot of them look sketchy but some may be ok. Just have to weed thru the list and do alot of checking around. Patterson's group (covid long haulers) will also recommend doctors to treat after you have done their cytokine panel blood test and are ready to move onto treatment.
One thing I'll note, the cytokine panel got some of my doctors attention that something was wrong, though some still ignored it. I did the CellTrend (Germany) auto immune panel blood test and those results got more attention. So having some hard data like that starts the ball rolling in seeing specialists and getting more treatment testing and med options, etc.
@mike411 yeah the big thing I’m worried about and I think what we’re all worried about is will it resolve or is time precious where we need treatment now before this is permanent damage…
@thamollusk the 15 months was just as far as the study measured the spike protein but it is believed it can still persist longer. If you also have auto antibodies, then those should fade as the spike proteins fade but that could take longer. In my case, I know I have ACE2 and MAS-1 auto antibodies as result of the vaccine and spike proteins.
Have you tried any of the treatment protocols like Patterson's (covid long haulers) or FLCCC? I'm doing the statin portion along with low dose aspirin. If/when I can get my BP issues from this under control, I plan to further explore the maraviroc treatment as well.
Sorry you’re going through this..how did you learn about ace2 and MAS-1…was there a test? What are the symptoms?
Sorry but I’m learning more and more in this forum than ever. People on here are doing such amazing research and sharing really informative information. Thank god I found this forum I wouldn’t know what I’d do without you guys. I just want this to end for us all.
@watis hey there. I didn’t know that you have BP issues . What does your blood pressure do go low? How low?
@margaret2022 I'm 3.5 months into symptoms. I had moderna vaccine series back in Jan/Feb 2021 with no issues. Had booster in Sep 2021 with no issues and then because I wanted super immunity to omnicron, went ahead and had 2nd booster in Jan 2022. That is what finally got me. Some of my doctors think its not just a 4th shot but that I had it within 4 months of the first booster: too much too soon.
Within 2 days I went thru 2 days of constant eye tearing and runny nose. Then seemed ok but the next week felt increasingly unwell with increasing insomnia. Went to ER and had BP of 182/110. Since then, I've been dealing with BP that has been difficult to control. Tried 6 meds and BP still often gets to 170s and a few times 180s.
BP is my primary issue and really could live with other symptoms, at least so far. My other symptoms that have come and/or gone over past 3.5 months are: insomnia, headaches (may be more BP med related), acne like rash that comes and goes on abs and back, random muscle twitches around body that occasionally pop up (much less now than early on), right ear twitching (generally much less now than earlier), burning skin sensations in arms and upper chest (pretty much gone recently), upper left chest burning pressure pain (possibly pericarditis - was worst at 2 months but seems somewhat better now). Alot of my symptoms seem to have improved over past month. Whether that is temporary or not, hard to say. I started atorvastatin and low dose aspirin 6wks ago so possibly that is helping as well. IF I can get the BP under control, everything else so far is not too bad with exception of the insomnia.
For treatment (specifically for post vax; not things like BP) I'm taking: atorvastatin 20mg, low dose aspirin 81mg, omega 3 3grams, melatonin 10mg, magnesium 400mg, Vitamin C 500mg extended release x2 daily. The only thing I'd like to add eventually is a 2 month or so course of Maraviroc.
I did the Patterson/Covid Long Haulers Cytokine panel at 8wks (mid March) and was elevated in 5 measures: VEGF, TNF-a, SCDL40, IFN-GAMMA, and IL-4. Surprisingly was not high in IL-8, which Patterson says is classically elevated sign of post vax in like 80% of cases. Guess, I'm one of the remaining 20% for whatever that means. From that test, I knew I needed a good statin and low dose aspirin. Based on his cytokine to treatment map, would also benefit from Maraviroc and possibly Ivermectin.
For auto immune, I did the complete CellTrend (Germany) blood panel:
https://www.celltrend.de/en/pots-cfs-me-sfn/
It's pricey, about $1k total between the lab fees ($825), local blood draw ($50), and Fedex fees ($125). I was negative (at least at 8wks) for all POTS and other measures. Was only positive for the ACE2 and MAS-1 auto antibodies. Those are considered the 2 most directly related to reaction to vaccine spike protein. I knew then that I needed to get this under control as much as possible quickly before I started generating antibodies to more measures and spiraled downhill and/or current symptoms became locked in for quite some time. Whether this will all work or not I do not know but I do believe in that the Patterson appreciation of cause is largely correct; though I do think it's a bit more complicated than his team would suggest.
Anyways, hope that is of some help. My POV is do what you can as soon as you can (never too late) and give it time and prayer for best/soonest recovery possible. For me, I'm sure that it will take months after I can clear most of the spike protein for the antibodies to wane and for my body to hopefully start getting back to normal. I'm not sure whether having my symptoms mostly just BP focused is good or not. Neurological symptoms tend to be the ones that people say take the longest to recover from. But then again not as many people are reporting high BP as a main symptom. Of those that have it seems anywhere from 6 months to 12 months for at least decent improvement.
@margaret2022 My POV is treatment as soon as possible (never too late) is better than just riding it out. Patterson, Been, and others have said that with time some of the damage can become permanent (scar tissue, etc) so better to treat. The challenge is what to treat with. I don't think there are perfect solutions yet. Most supplements are highly variable whether they are treating or masking symptoms. So far, I think the Patterson protocols (overlaps alot with FLCCC and. Univ of. Marburg protocols) and then time is the best combination. Eventually, I think there will be direct treatments for any auto antibodies and more direct spike reducing treatments but those are likely several years away. BC007 (Berlin Cures) is probably the earliest potential IF it successfully completes clinical trials. That would be late 2023 earliest with treatment in Germany where it is now being tested. US is a lot more complicated/lengthy testing so would not expect in US until maybe 2025 or so.