Update: 6 months out from second Moderna dose
Unfortunately, I'm still dizzy daily. The tinnitus has subsided but is still there - mostly on and off. I no longer have headaches. The good news, I am improving, namely, I am having more positive days than negative ones. I am down to about 2 to 4mg of Valium per week (on my worse days). So a very low dose. If I look back at my journal from May/June/July, it was pretty dark so while it might feel like I'm not improving, I do have evidence that I, in fact, am. However, it is extremely slow and not linear.
I mostly have my life back in that I am learning to not let the dizziness affect my day-to-day, or rather to live with it. The more I focus on the dizziness, the worse it becomes. Easier said than done, but I am making a concerted effort to not focus on it.
As a reminder, I had Covid now almost a year ago. I had Long Covid for 5 months, healed, got the vaccine, and relapsed into all my symptoms. The second time around they were way worse. I believe it was a hyper-immune response from the vaccine since my body was so primed from Covid and only time is going to heal it. My doctor does say I'll get better.
I listened to a good podcast recently: https://drhyman.com/blog/2021/11/03/podcast-ep442/
It is mostly about long covid, but at the end, they do talk briefly about the vaccines. I believe it could help people here.
@nath7 One more thing: Regarding your burning sensations/nerve pain, there are prescription medications that can help with nerve pain and I'd talk to your doctor about that. They likely won't help with the numbness but if you are feeling a lot of pain/discomfort, medications like Gabapentin, can possibly help with that. I would talk to a neurologist about what medications might be right for you, though, because every medication has potential side effects. Considering the various issues you're having, I'd want to make sure that any medications would not worsen some of your symptoms while helping eliminate other symptoms.
Well I've been reading the forum and it seems I'm another one with most of the side effects of dizziness, nausea which leads to anxiety and then a headache. I have had my pfizer shot (2nd shot) 1.5 months ago and had my 1st panic attack 2 weeks after. I have never suffered from panic attacks or anxiety. Do basically the same story as most of the people on the forum. Really is a terrible feeling as you know. The only thing so far that helps is lying down, taking urbonol (can be addictive if taken long term) or taking a antihistamine like you get for travel. Also I still have my sea bands (wear them on your wrists) from when I was on a ship although I don't know if they help or not. I have been to 2 doctors, 1st one did bloods and ECG, all normal. Told me I have a anxious personality and need to relax, then after subsequent visits wanted to put me on a anti-depressant. He doesn't feel this is from the vaccine. what a d%ckhead. I am not depressed and never suffered anxiety as mentioned before but feeling dizzy all the time does make me anxious.. I went to a new doctor that blatantly said this is from the vaccine side effects and we need to detox basically. He mentioned that he has has 77 new cases of vaccine side effects from patients and no medical institution wants to take his reports locally.
3 pharmacists have all said they are getting people coming in reporting the dizziness and anxiety and all 3 have agreed this is vaccine related. I am not a anti vaxxer quite the contrary. I believe vaccines are important but these side effects are 110% from the vaccine but it seems a lot of the medical community are somewhat of a cult and don't you dare blame the vaccine. Anyways, I digress. I just wanted to say thank you to @marieski858 for the below suggestions on vitamins etc. I am going to see if these help as I went to get them today. I have added 1 or 2 things. I wish us all a speedy recovery.
Hello all,
First off, I’m so sorry to see the MANY of us suffering after getting this vaccine and now having to live with the regret and daily consequences.
I’m a 37 year old (was) healthy mom of 2 very young boys. Got my 2nd jab 7/17, symptoms began subtly but came in hard and fast in August. Dizziness everyday (haven’t driven in months), anxiety, panic attack, palpitations, high BP, lightheaded, ear stuffiness, pins and needles in hands and feet and in my neck and face that comes and goes, severe neck pain and left leg weakness. Had all the scans and blood tests and 2 ER visits. Seen every specialist under the sun (Neuro, cardiac, acupuncture, chiro, PT) No one has any answers. But we all know why we’re on this site and what got us here, only one thing in common: vaccine.
I’m about 7 weeks out from onset of symptoms, good days and worse days. I’ve personally noticed a very hyper stimulated sympathetic nervous system and immune system so any supplement or herbs to “boost” immunity are the opposite of what we need I believe and make me feel worse usually. (Learned this the hard way…ex. Zinc, N-Acetyl cysteine, Reishi Mushroom, echinacea, vitamin c etc…are no goes for me, they make me more anxious. Which is the worst part for me as I never had anxiety or panic prior to this whole thing…)
What IS helping me currently is Quercetin, L-Tryptophan, vitamins d3 and k2, probiotics, fish oil, b-12 and I occasionally use detox herbal formulas or detox clay baths with a binder supplement to help it out of the body. BUT I advise caution because we are so sensitive and weakened be careful with any detox or supplement as you’ll need to see whether your body says yay or nay! A google search for over active central nervous system or overactive immune system is a good resource for some sites that have other recommendations and supplements that make work for you 🙂
For anxiety, I highly recommend Aconitom Napellus (spelling?) from Boiron from Amazon or any natural food store. It always helps whenever I feel anxious or panicky. Hopefully time will help us but I surely do sympathize with everyone and the lack of answers or accountability by the professional conventional medical professionals. Healing to all one day at a time!
@msmar Thankyou very much this has been helpful! I hope you are feeling abit better. I’m just worried I’ve developed an autoimmune disease. I’m Thankyou that you have had same sort of issues as I have been already diagnosed with an autonomic dysfunction but this burning sensation is new. But seeing your first post your neurologist confirmed possible disruption in vestibular and autonomic. I was thinking I’ve developed ms or something like that. Did they rule out any serious conditions with yourself?
@nath7 Yes, I did extensive testing (bloodwork, MRIs and CT scans, EMG/nerve conduction studies, physical exams, EKGs and echocardiograms, etc.) over the past year to rule out all other serious conditions like brain tumors/blood clots, heart issues, autoimmune disorders, MS, ALS, etc. Thankfully, I found supportive doctors that did not resist doing any of this testing. I think it's very important to consult with physicians who will take your concerns seriously. My "care team" included my primary care doctor, a neurologist, and a cardiologist. Because symptoms of both serious and less serious conditions can be similar, I think it's important to get the necessary tests to rule out the more serious ones. My ultimate diagnosis was small fiber peripheral neuropathy, which can certainly impact the vestibular and autonomic nervous system. I've learned that even small nerve fibers, when aggravated, can cause quite a bit of pain & discomfort. Going for all the testing was not fun, to say the least! But, in the end, knowing that I didn't have something serious really helped ease my mind.
@nath7 FYI: You might want to check out this summary for some additional information.
@nath7 This is a longer read, but one you might also find helpful in guiding your discussions with doctors.
https://practicalneurology.com/articles/2021-july-aug/small-fiber-neuropathy
Hi guys,
unfortunately I m still in there 6 months after my first and last Pfizer shot. I did lot of tests e.g. MRI brain, EKG, test for alergic reaction towards the vaccine components and so on. All came negative. I wonder if you guys had blood tests regarding immune response. In mine it was found that natural killer cells, T cells and B cells were still elevated months after the jab. If so, what did doctors say or prescribe? Have you being checked for autoantibodies like the G protein coupled receptor autoantibodies that have being shown to be elevated in patients with ME CFS? Maybe you could ask your doctors regarding this topic. If many doctors are aware of it and maybe would perform such tests it would be good.
I pray for all of us that this nightmare will have an end very very soon!!!!
@wynnwolter I am on the fence about it myself. I got the J and J vaccine in April and had 2 terrible bouts of vertigo/panic/migraine etc. So not nearly debilitating compared to others in this forum. Immediate side effects were nausea, lightheadness and headache but I'm not sure about getting a booster at this time. I would be curious to see if anyone in the forum has gotten their booster shot.
@jessiekhri hey Jessie. How is your blurry vision? I am experiencing the same! Especially in my right eye as well. It’s been over 2 months already. Have you seen an ophthalmologist? I feel like my vision is hazy and I get flashes if I look at bright objects. It’s so annoying!
@jamesjazz And even more ridiculous is the complete lack of understanding and/or belief in the medical community. Most are completely clueless and refuse to even try to help. So we're all left to help ourselves.
First, I cannot express how grateful I am to all the people who posted their stories and progress on this forum. It’s made me hopeful for the future.
I am a 33 y/o woman from Texas, USA with no prior health conditions or ailments. I am 12 weeks out from the second Pfizer vaccine.
I received the first vaccine on July 20, 2021 with no issues. I received the second vaccine on August 10, 2021.
Five days after the second vaccine I had horrible arm pain. It worried me but I flagged it off as some kind of “COVID arm.” Ten days after the second vaccine, on August 20, 2021, I went to the ER because I felt like I was having a stroke or a heart attack. Long story short, I’ve been to the ER, urgent care, and PCPs office many times feeling like I was going to die. I’ve had a brain/neck MRI and CT scan, chest CT scans and all the other typical blood work like CBC, metabolic, ANA, D-Dimer, Typtase, GFR, C reactive protein, sedimentation rate, lipid panel, TSH and some others. All were normal with the exception of vitamin D which was slightly low and enlarged lymph nodes on the left arm which received both shots. My d-dimer level went down from .41 (10 days after vaccine) to .22 (11 weeks after vaccine).
The symptoms have changed over time and as others have mentioned recovery has been cyclical and unpredictable rather than progressive and gradual.
My symptoms during the first 10 weeks (on and off) were as follows: intense arm pain, chest pain and pressure, dizziness, feeling faint, inability to concentrate, nervous system felt shot, adrenaline surges, trembling/shaking, heart palpitations, feeling like my blood was rushing through my body like waves, heart rate in 130s when just standing up, extreme night sweats, drowning sensation (especially when asleep), shortness of breath, tingling numbness in hands, coldness in hands and feet, ear ringing, ear pressure/pain, tightening under rib cage, random shots of pain on head and body, overall malaise (skin hurts, touch hurts, bedridden), noise sensitivity, nausea/vomiting, and vertigo (one day only).
The first PCP flagged my symptoms off as anxiety. He prescribed 15 mg of mirtazapine. I took a maximum dosage of 7.5 mg which helped me tremendously for sleep. I now take 3.75 mg each evening to make sure I do not wake up with palpitations in the middle of the night. I changed PCPs and also received beta blockers, other SSRIs, and prescription antihistamine. I never took beta blockers for fear that my heart rate would drop too low. And I’d rather stick with the devil I know (mirtazapine) than the devil I don’t in terms of SSRIs. I believe that sleep is a huge factor in recovery which is the only reason I continue to take the antidepressant.
The worst part of the first ten weeks were the adrenaline surges, by far. It felt like my entire nervous system was fried. Like a bolt of electricity was constantly streaming through my brain stem and throughout my body. The feeling would sometimes last all day. I cried in desperation many times because of this. Again, this is why mirtazapine played an important role. I was better able to deal with the day time issues if I could sleep at night.
A little late in the game I found that Claritin D resolved a lot of issues for me. The problem with Claritin D is that it would not allow me to sleep at night and this would bring me back to square one.
Early on, an ER doctor recommended supplements for inflammation. I probably should have listened to her sooner but I was scared of taking glutathione intravenously (after such a bad experience with the vaccine). One and half weeks ago, I opted to try lipomal glutathione (sublingual), histaquel, and cytoquel from the brand researched nutritionals. I don’t know if it was time or the supplements or Claritin D but the feeling of panic/adrenaline surges have mostly gone away.
Now I mostly deal with the following symptoms: Shortness of breath, dry cough, heart palpitations and trembling (if I skip my dose of mirtazapine), massive fatigue and exhaust, and twitching.
I will take the dizziness over the adrenaline surges and sheer feeling of terror any day!
The ER doctor said this was inflammation and will eventually go away. The neurologist also said this was likely linked to the vaccine and it will go away with time. He also said people came to him a lot for flu vaccine side effects. I think time is the best medicine — along with sleeping and eating healthy.
I have a cardiologist visit next week to look into the heart palpitations but I doubt he will have a solution for me. I mostly want to make sure my heart is healthy in order to go through this process.
Sending everyone healing thoughts. If you can stay with family during this time, please do so. It helps to have support.
@estonia The same thing happens to me! Exactly as you say, it feels like I slide back to 80% whereas when I'm not on my cycle I'm at 90%. Because my symptoms worsen with my period two of my doctors believe it's a migraine issue (I've never had dizzy migraines before the vaccine). A part of me believes it's not migraine but some inexplicable workings of the vaccine that need to run its course. I take hope in the fact that these "episodes" around my period aren't as acute as they were before, as with yours! Have you heard of this going completely away for others?
Have been reading this forum for a few days and feel some relief others are experiencing the same things. For starters, I am a 29 year old female with no prior health issues besides being diagnosed with BPPV earlier this year and having slight anxiety. The BPPV was gone with the epley maneuver and haven't had issues until now.
Background info, I got my second vaccine really late, almost 2 1/2 months after the first. With the first shot, I had gotten a stomach bug right after so it was hard to decipher vaccine side effects from being sick. However, no dizziness or vertigo occurred.
I noticed a falling sensation when rolling in bed about a week and a half after my second Pfizer dose. I panicked thinking the BPPV was back, tried epley even though I was unsure which side to treat. Residual dizziness has been with me since. I'm on day 9 and still dizzy. Only certain things will give me vertigo, like video games or elevator rides however the dizziness is constant. I finally went to the doctor yesterday only for him to say I'm "neurologically intact" that is was probably allergies and to get my eyes checked.
My symptoms are headache, neck pain, fatigue, dizziness as if I'm cross eyed almost or wearing someone else's glasses, swaying like on a boat, I also had severe eye pain and watery eyes when the dizziness first started that has since subsided.
I feel lucky that it is not as debilitating as some of you have mentioned prior but it's definitely annoying and very depressing. I have a 3 year old I never want to play with because of the dizzy spells and I work on the computer which is absolutely miserable. I just don't want to be like this forever.
For me ibuprofen helps the most but I hate taking it all the time. Meclizine also helps but feels like putting orajel on a cavity. It's just masking the issue making it more tolerable.
Yesterday morning I almost couldn't drive my car. As days go by I feel the neck pain and headaches getting better but the dizziness remains. When I try to talk to people about it, they blow it off as allergies or anxiety. It's depressing.
Hope it goes away soon.