@thenystagmus I get this constant neck pressure at the base of my skull too. Neck and back pain is chronic!
At first, my other symptoms were so overwhelming that I didn't isolate that neck pressure and pain as a symptom and when I did I thought it was from not moving my neck. But now that I'm free to move without triggering nystagmus, vertigo and dizziness, I realize it. And many others here have noticed this symptom also. I wish I knew whats causing it to be part of this crazy business!
Sometimes I apply heat to my neck, using a rice bag that I made with flannel and uncooked rice, heated in the microwave for a short time.
Does anything give you any relief?
@nehru1 I shall look into probiotic supplements. I have been taking turmeric daily and wondered if this could have upset my stomach. Sometimes I wonder if the best medicine is to actually take nothing!
I have tried to cut back on dairy products but I'm such a foodie and have such a sweet tooth that I'm finding it hard to change up my diet. My food is the only enjoyment I have right now! Lol
@lmkk me too. I've had this neck and backache constantly but it has got worse and now all my muscles ache like I've done a massive gym workout or something. It also feels like its my bones but they say its muscular. I did think spinal inflammation and mentioned this to the neuro but he palmed me off and said I will see you in 6 months but it should all pass.
So I'm kind of left just getting by day by day. I have a new irrational fear of taking any medication I'm prescribed and I just want to leave my body to do its own thing now really.
I hope this doesn't take years 😔💔
I've been telling people I feel like the pain is inside my bones and they look at me like I'm crazy! My muscles are also very achy and often warm and fuzzy in feeling. I wonder sometimes if it's caused by inflammation from reactive arthritis caused by our bodies immune response to the spike protein?
I've had reactive arthritis a couple of times in the past when I've had a very bad flu and gastroenteritis and it feels like the same thing only in all my body instead of just my knees and hands. I used ibuprofen to treat it in the past but I know exactly what you mean when you say you are reluctant to use even prescribed meds now. I'm currently trying to heal my body using natural products including pineapple , beetroot, turmeric and coconut water so my body has a chance to work on itself without being influenced by meds.
I am going to see a private doctor soon so I'm going to ask about this bone pain and back pains and see what he says. I will let you know if he says anything of interest.
Hi @larag
I'm just back from my private GP appointment. He was less helpful than my regular GP. He flat out said what I'm experiencing hasn't anything to do with my Pfizer vaccine! He has ordered me to get folate, b12 and diabetes blood tests! I know that all these are fine as they tested me for these during my pregnancy and I doubt they have changed in the last three months since I had my baby especially given the amount of multivitamins I'm consuming with all my healthy eating to try and beat this monster.
It was only when I told him about guillan Barre syndrome being listed in the UK as a "rare" side effect of all the vaccines in use in this country that he changed his tune and after looking on Google he then told me that the intense back ache I'm having along with a weakness in my legs and arms, pins and needles etc sounds like it could be a "mild variant of guillan Barre syndrome" I did read on this thread a guy from in the UK posting on here around June that he had also been diagnosed as having mild variant of guillan Barre syndrome after severe backache and facial paralysis on one side left him in the hospital for a week. If this is mild I shudder to think what severe is like 🙁
He told me not to Google it and that as nothing can be done only time will help. Not what I wanted to hear but he did rule out MS and motor neurone disease.
I'm going to do a big post on here and share all my symptoms and different stages of improvement and set backs so hopefully one day it can help another reader.
Hope you are doing ok.
@charsen hi Charsen, I had some people come over to take the measurements of my windows because my wife wanted some new curtains. The conversation with them triggered a terrible headache and a feeling of being unwell.
I would say most days when I don't do anything I feel close to 95% of my old self, but I get this terrible headache which feels like my brain just freezes and locks up as soon as I have to concentrate or get triggered too much, even typing this answer is difficult now and I can feel the headache starting to become worse. It goes away when I lay down and rest for awhile, I notice it goes away faster than a month ago when it would usually take almost half a day to go away or even a night's sleep.
My eyes have improved alot, no more sore eyes or blurry vision. Only some minor discomfort when waking up in the morning which goes away within 5 mins or so. Having eyelid twitches now, but I think that's because I have been stressed out so much over my health.
@lmkk I cannot believe that Dr's just refuse to believe the facts. Yet people can have Nut allergies and penicillin allergies etc but oh noooo nobody can have a reaction to a brand new jab. It's like they are terrified to bad mouth it. But interesting to hear thoughts on the mild gbs. My neuro wrote that off and said it's just time but I'm still not convinced. I think your post will be helpful thank you. And congrats on baby BTW! I have a 4 year old and it's hard having children when dealing with this too. Sending you well wishes 💕
@pfizervictim Hi there. Have you tried eating fresh pineapple and having turmeric daily? I find that it does help knock the edge off my symptoms which is better than nothing I suppose. If you haven't already give them a try as they are probably the strongest natural anti inflammatory foods you can get. I'm also stuffing my face with baby sweetcorn as they are supposed to be good for the eyes. My eye pain has mostly gone now I'm nearly ten weeks out from my first jab although I do still get random eye "wobbling" at times.
@thenystagmus I do the same. I change from wheat bag in the microwave to ice pack. I put muscle rub on it and have physio but nothing has helped whatsoever. I'm constantly holding the back of my neck as though I'm trying to support it holding my head! Its so uncomfortable. Its been like this for 3 months now and like you I also get dizzy spells daily so I'm terrified it's something to do with my spine but Dr's won't do anything and just say it's muscular.
I've seen more and more posts lately regarding data and things people have read and views on jabs etc. And whilst this information is important and everyone's views are valid we have to remember we are all reading different things. We are in different countries reading different facts and at the end of the day we have all had the jab!
I don't want this forum to become a debate like some forums I've seen.. which eventually then become taken down. I use this forum for chat, support and to feel less lonely with people that understand. It really does keep me going. I for one hope it stays that way with no judgements or scaremongering.
I agree. I hope I haven't added to anyone's distress. I've been here since almost the beginning of this thread and there have been some dicey times here at times. This forum has been an invaluable source of support for me and I appreciate the current atmosphere of respect and camaraderie.
I understand that the risk vs benefit of getting Covid vaccination is different for each of us. I'm relieved to not be currently affected by risking loss of employment or loss of doing things I need or enjoy by deciding against further vaccination, but I know that's not so for some others.
Thank you for your insightful reminder!
@thenystagmus I agree in the sense some are lucky (including me) that in the UK there are not strict mandates etc... yet.
And it's good to know the facts I'm not dismissing them at all!!. I just fear it can become such a sensitive debate that the forum could take a turn.
When I first got my symptoms I joined a medical forum for support and it became overwhelming with people saying such negative things. Some even saying all people who had been vaxxed will die within 3 years! My mental health plummeted seeing things like this and I said on there please be mindful of how opinions are worded etc. And I got a bashing and basically forced out the forum. It was almost like it was my own fault I was having these symptoms as I fell for the government lies... I got the vax as I thought it was right. I don't deserve this and won't accept strangers behind a screen telling me I do.
Then I found this forum and almost felt like part of a wierd family lol the support has been so needed and welcomed here.. it's a sad place to be but at the same time I love how we are all here to just genuinely help one another. I just desperately don't want to lose it. Xx
@thenystagmus I do the same. I change from wheat bag in the microwave to ice pack. I put muscle rub on it and have physio but nothing has helped whatsoever. I'm constantly holding the back of my neck as though I'm trying to support it holding my head! Its so uncomfortable. Its been like this for 3 months now and like you I also get dizzy spells daily so I'm terrified it's something to do with my spine but Dr's won't do anything and just say it's muscular.
Doesn't feel "just muscular" to me. After 7 months there's just one position that still consistently causes me dizzy spells. It's while I'm looking down to the floor on the side opposite my vestibular damage and trying to move. Oh, and my vestibular PT wanted me to walk short distances and do 360° turns over and over. That was a disaster! And I question whether I've ever been able to tolerate such fancy dancing! 😅
I just keep celebrating any recovery I get and I don't want to stop hoping for more - for me, you, and all of us! 😏🙏
@thenystagmus Can you provide data. My whole incentive to get this stupid vaccine was to prevent serious hospitalization. I guess is been a waste of time then with all these months getting inflamation, anxiety and all these other issues for nothing. What a joke .
@thenystagmus Can you provide data. My whole incentive to get this stupid vaccine was to prevent serious hospitalization. I guess is been a waste of time then with all these months getting inflamation, anxiety and all these other issues for nothing. What a joke .
Hi chulapepe, take a look at KitKat's post at 2:35 this morning for her husband's experience of vaxxed people checking into his hospital workplace with Covid. I don't really wish to go through the stress of looking up data, but I'm sure your search engine could find it easily. I do think they're saying that vaxxed are experiencing less serious hospitalization and death rates than unvaxxed, so maybe it hasn't been a total waste for those of us getting vaccination.
I've spent a lot of time getting reconciled to having brought this reaction on myself, but I did it in good faith. So I've decided to quit adding to my injury with self-flagellation! And I've simmered down in my feelings towards the powers that provided, and continue to provide it. I even had an interesting dream about it and wrote a poem expressing my dismay, both of which I shared here. I've come to a negotiated peace with it all. But I do take opportunities to let others know what I've experienced so they have a more balanced view than what's generally available in the news.
@thenystagmus I agree in the sense some are lucky (including me) that in the UK there are not strict mandates etc... yet.
And it's good to know the facts I'm not dismissing them at all!!. I just fear it can become such a sensitive debate that the forum could take a turn.
When I first got my symptoms I joined a medical forum for support and it became overwhelming with people saying such negative things. Some even saying all people who had been vaxxed will die within 3 years! My mental health plummeted seeing things like this and I said on there please be mindful of how opinions are worded etc. And I got a bashing and basically forced out the forum. It was almost like it was my own fault I was having these symptoms as I fell for the government lies... I got the vax as I thought it was right. I don't deserve this and won't accept strangers behind a screen telling me I do.
Then I found this forum and almost felt like part of a wierd family lol the support has been so needed and welcomed here.. it's a sad place to be but at the same time I love how we are all here to just genuinely help one another. I just desperately don't want to lose it. Xx
I agree with what you are saying. I really hope this forum doesn't get political. Before I found this site I looked at a few others although there are not many available. I found them to be very political and often anti Vax scaremongering. I was made to feel stupid for having had the vaccine.
I thought I was doing the right thing by being jabbed to protect my newborn and my five year old. Posting scary stats and links gets me very worried and distressed about my side affects. I hope this site can remain a place of support for each other and to offer hope as right now we are in such Uncharted territory that even medical professionals don't really seem to know what's happening. The hope I get from reading posts of those who have made a good recovery no matter how long it took are all I have to get me the this right now. I try not to worry or frighten my family by talking to much about what I'm going through and I have to be strong for my kids so being able to participate here has been a godsend for me.
It's my goal to one day come one here and announce that I too am recovered so that I may to give hope and comfort to others who find themselves looking for answers and help in the same way those on here have already given me hope.
@twitch sorry for the delayed response. I was hoping that I’d be able to say 100%, but unfortunately I can’t. However, I am happy to say that I’ve made some serious improvements, and I’m hovering around 85-90%, some days 95%. I found a great ENT who specializes in vestibular issues (Dr. Michael Teixido, if you’re near the DE/PA/NJ area in the states. He diagnosed me with vestibular migraine. He put me on clonazepam and propanol. When I started taking the propanol, I felt immediate relief from the dizziness - like 80% better that day. I’m sitting in his office now for a follow up as I type this waiting to be called back.
I’m still struggling a bit with tiredness, which may be the medication at this point, because it’s not the same fatigue I had several months ago when I couldn’t even lift the garbage out of the garbage pale in my kitchen. Now I’m doing things around the house and even exercising on and off mildly throughout the week. And, I went back to work with little issues. So thankful for that.
I also still have a dull achiness feeling and coldness in my left leg on and off (also may be the meds; I’m weening off Zoloft since you know, every other doctor diagnosed me with anxiety *eye roll*). Sometimes in my left arm as well.
Finally, I’m still having spasms all over my body, but much less. The past few days they made a slight comeback unfortunately, but nothing major.
I’ve also thrown a myriad of other things at this, including countless herbs/supplements. My kitchen closet is its own pharmacy at this point lol. I’ve consulted a really good herbalist, and I’m a big believer in the niacin/melatonin protocol offered up my Dmitry Kats. Look him up on Facebook.
All in all - things are looking up. Which is great because I’m expecting a baby girl any day now 🙂
PM me if you (or anyone else reading this) want to know what supplements/herbs I’ve used and what for. I’ve had spasms, cardiac issues, fatigue, and severe dizziness. Happy to help. I’ve stayed away from the forum so I can focus on getting better and not getting scared/anxious by the posts detailing death counts or the possibilities of long term suffering. Mind over matter.
When I do reach 100%, I do plan on putting together an extensive post on my story/journey and everything that I did to get back to my old self (and list everything that did not work for me as well).