Hello everyone, I want to post a quick update. It's been almost 14 weeks now and over the last week or so I've noticed a significant change.
My anxiety is gone, my mood and mental capacity are almost back to pre vax levels. Only get depressed and angry when I get hit by a flare up and even then it's lasts much shorter. My daily headaches and dizziness is mostly gone, only returning for a while if I push my self too much and try to do too many things in a row or at once, driving, gaming, reading and multi tasking are still a no go. My eyes are also in a much better state, not yet full recovered but also not as bad as before
I hope I keep improving and will be back to normal by Christmas, also have to remind myself not to overdo things now that I'm feeling better, don't want to get a relapse.
I really think this is either inflammation or viral debris like Dr. Patterson has said and it just needs a really looooong time to heal for some of us.
@pfizervictim I noticed the exact same at the exact same time, too. No more brain fog and anxiety, and my tinnitus and floaters are incredibly mild. All that's left for me is brain fog and shortness of breath but I'm noticing that get less and less by the day. Fingers crossed we're in the last leg of this.
@imcanad11 I have been having the same thing happen. Been 8 weeks since first shot, never got the second shot. Haven’t had anything come back negative in any test except low magnesium. It wakes me up in the middle of my sleep sometimes, I’ve been praying and searching but still nothing yet. A lot of people have said It gets better and goes away over time so I hope so.
@am85 Yes, my MRI was clean. I did VNG testing. They did the water tests on me two separate times because they didn't get the results they wanted. This caused more damage to the nerve inflammation. Until then, I was just suffering from vertigo. After the water tests, I have been suffering daily headaches along with the vertigo.
This may be totally unrelated to the vax which I had my first P shot 2 months ago. I’ve mostly had brain issues…brain fog, dry eyes, head pressure, fullness in ears and the big one that is so common “dizziness”! Anyway the last 2-3 days I’ve had quite a bit of pain in my lower abdomen, bloating, tenderness etc. Has anyone gotten abdominal pain sometime after their shot which seems to persist?? I don’t know what is going on other then I’m hurting pretty bad in my gut!!
@heatherxxo hi, sorry it took so long to reply but I've been dealing with a lot of health issues. My dizziness have subsided but still no hearing in right ear. ENT told me to day that she doesn't think I will regain my hearing in that ear and that the noises won't go away either. This is crazy.
I'm sorry to hear that you're still dealing with the dizziness and fullness in your ear still. Hopefully you will feel better soon. Take care of yourself.
@anotherone92 Can you please share your floater experience? how bad were they? both eyes? how long since onset? did they gradually fade/disappear? Or you still notice them but have gotten used to them? TIA!
@subiegrl So sorry that you are going through all of this just like a lot of us. In addition to insomnia and tinnitus, I also got floaters which is y worst symptom. I am 6 months out from vax and about 4 months out from floater onset. Mind if I ask you about your floaters? Did you get the surgery for floater recently after the jab? How are they now? Thanks.
@tarruba thank you Tarruba. I am sorry to hear that and I hope you are recovering well. What did your VNG outcome was? Did it show up something wrong with the vestibular system such as neuritis?
Best regards and my best wishes
@saba I've had the floaters for about a month. I've not had them very severely in the sense that I can still see ok, but they've definitely gotten milder. Every now and again I notice them but for the most part I have to go out of my way to pay attention to them to notice that they're there - it's very similar to my tinnitus, which i've had since about week 2.
I'm optimistic both will pass given more time.
@anotherone92 thank you! mine are somewhat worse, especially in the right eye. Been over 4 months. Tinnitus is still here post 6 months, not as loud, but only bothers early morning. I have learned to live with T, floaters have been hard to deal with, since they are always in the way.
Hi guys,
Remember me?! Sorry it’s been a while since I’ve been on here because I’ve been trying not to dwell on things too much and tried to take my mind off of the dizziness (yeah as if!)
Just to recap; I’m in the UK I had my second Astra Zeneca shot on 8th May and had 3 spells of vestibular migraines following that shot. The 3rd one triggered a panic attack and ever since then I’ve had persistent non spinning vertigo like I’m on a boat plus severe anxiety. I started to recover mid July then relapsed again and got bilateral tinnitus from July onwards. I haven’t improved since with either dizziness nor tinnitus. I’ve seen a Neurologist (waste of time), ENT (waste of time) neither of them knew what to do with me.
So I finally got a diagnosis from a Harley Street Specialist in Audiovestibular medicine. The diagnosis is migraine induced PPPD (persistent postural perceptual dizziness). I will copy and paste the contents of the clinic letter from Harley Street in the hope that it might help someone on here. He was the ONLY person who knew what this condition is and he’s said he’s seeing this commonly in his clinic post covid vaccines! I hope this helps someone.
Diagnosis/Findings:
1) Chronic persistent subjective imbalance – Atypical Migraine associated Persistent Posturo-Perceptual Dizziness (PPPD).
2) Bilateral intermittent tinnitus
Management:
1, High dose over the counter magnesium 500mg once nightly
2, High dose Riboflavin vitamin b2 400mg daily
3, Ensure good fluid hydration
4, identification and trigger avoidance
5, Eye test at opticians
6, regular graded outdoor walls with good head movement
7, visual desensitisation exercises
I had the pleasure of meeting Miss Cutmore for initial virtual consultation at the Harley Street Audiovestibular Clinic on self-referral. Following the first dose of the AstraZeneca coronavirus vaccine, Miss Cutmore recalls having developed severe headaches which eventually settled. Investigation at that time is reported to have shown normal platelet count. She then had her second dose of coronavirus vaccination in May 2021. Four days later, she recalls an acute episode of light-headedness lasting 1-2 minutes with no obvious preceding triggers. She had a further similar episode a week later when she was out having coffee. A week after this, she had a further episode whilst out walking with a friend. This episode provoked significant associated anxiety, and since then she has had a persistent constant subjective sensation of sway. At the onset of symptoms, she recalls associated photosensitivity although this has now somewhat settled. There were also some features of fatigue, anxiety, and tremors.
Miss Cutmore reports persistent subjective imbalance although with gradual improvement since onset. Anxiety can exacerbate symptoms, and she reports that mobilisation/movement helps her feel better whilst staying still exacerbates her symptoms. She reports a history of mild head motion intolerance although this has improved with self-directed gaze stabilisation and Cawthorne-Cooksey exercises. She reports visual motion sensitivity with supermarkets and busy places, although has had some improvement to her tolerance of patterned carpets/floors. She reports fuzzy vision and pressure in her ears as well as a subjective forward drift. Since July 2021, she has developed bilateral mild and intermittent tinnitus.
Miss Cutmore has now been seen by ENT and Neurology with normal clinical examination. She has not had audiometry. She has tried Betahistine and Propranolol without any benefit but with side effects of tiredness and dizziness. She found that CBD oil can be of benefit. She is currently having CBT to help with the associated anxiety. She is keeping active and performing self-directed exercises up to three times a day.
Discussion/Summary:
Miss Cutmore’s history of chronic subjective imbalance with associated anxiety features is certainly in keeping with Persistent Posturo-Perceptual Dizziness (PPPD). However, her features do slightly differ in that her symptoms ameliorate with movement. It is unclear whether there is an associated element of peripheral vestibular disorder for which she would require clinical examination and objective testing.
Her symptoms commenced post Covid-19 vaccination and similar symptoms have commonly presented post vaccination or covid infection. The presumed underlying pathology/disorder is akin to atypical migraine which can subsequently lead on to chronic imbalance and PPPD. Indeed, at symptom onset, she does describe mild migraine features including photosensitivity. Aural fullness and tinnitus can also be atypical audiovestibular manifestations.
From the tinnitus perspective, she would require audiometry, as it may also represent an underlying hearing loss and would require to be assessed. Her overall symptoms can occasionally be due to dysautonomia, and I have advised on lying standing blood pressure and pulse measurements to identify persistent postural tachycardia.
Management of atypical migraine associated PPPD requires to be holistic. She has associated anxiety and I was pleased to hear that she has already commenced CBT which will be of benefit.
For the migraine features, I have advised on simple lifestyle modifications including ensuring good oral fluid hydration (1.5 – 2 litres clear fluid a day), as well as trigger identification and avoidance (leaflet enclosed). We discussed pharmacotherapy but have agreed to commence a trial of over-the-counter high dose supplementation for migraine prophylaxis in the first instance. I have hence advised her to start Magnesium 500-600mg once nightly (start at half dose in the first week). She can also consider add on therapy with Riboflavin (Vitamin B2) 400mg once daily. She should trial this for at least 6-8 weeks in the first instance and if beneficial, continue for 6 months to 1 year. If not beneficial, we can consider add on pharmacotherapy with migraine prophylaxis upon further review after 8 weeks.
Miss Cutmore has been performing self-directed exercises, but visual sensitivity continues to be one of her main symptoms. I have hence advised on simple rehab in the first instance such as daily outdoor walks on uneven surfaces with good head and neck movement. She should consider reducing the intensity and frequency of self- directed exercises, as this can over sensitise her, instead focussing on gradual improvement over time, whilst performing the exercises using more complex visual backgrounds (checkered board, OKN stimulus).
@am85 My VNG showed reduced vestibular response bilaterally. He diagnosed me with a vestibular migraine.
Hi guys,
Remember me?! Sorry it’s been a while since I’ve been on here because I’ve been trying not to dwell on things too much and tried to take my mind off of the dizziness (yeah as if!)
Just to recap; I’m in the UK I had my second Astra Zeneca shot on 8th May and had 3 spells of vestibular migraines following that shot. The 3rd one triggered a panic attack and ever since then I’ve had persistent non spinning vertigo like I’m on a boat plus severe anxiety. I started to recover mid July then relapsed again and got bilateral tinnitus from July onwards. I haven’t improved since with either dizziness nor tinnitus. I’ve seen a Neurologist (waste of time), ENT (waste of time) neither of them knew what to do with me.
So I finally got a diagnosis from a Harley Street Specialist in Audiovestibular medicine. The diagnosis is migraine induced PPPD (persistent postural perceptual dizziness). I will copy and paste the contents of the clinic letter from Harley Street in the hope that it might help someone on here. He was the ONLY person who knew what this condition is and he’s said he’s seeing this commonly in his clinic post covid vaccines! I hope this helps someone.
Diagnosis/Findings:
1) Chronic persistent subjective imbalance – Atypical Migraine associated Persistent Posturo-Perceptual Dizziness (PPPD).
2) Bilateral intermittent tinnitus
Management:
1, High dose over the counter magnesium 500mg once nightly
2, High dose Riboflavin vitamin b2 400mg daily
3, Ensure good fluid hydration
4, identification and trigger avoidance
5, Eye test at opticians
6, regular graded outdoor walls with good head movement
7, visual desensitisation exercises
I had the pleasure of meeting Miss Cutmore for initial virtual consultation at the Harley Street Audiovestibular Clinic on self-referral. Following the first dose of the AstraZeneca coronavirus vaccine, Miss Cutmore recalls having developed severe headaches which eventually settled. Investigation at that time is reported to have shown normal platelet count. She then had her second dose of coronavirus vaccination in May 2021. Four days later, she recalls an acute episode of light-headedness lasting 1-2 minutes with no obvious preceding triggers. She had a further similar episode a week later when she was out having coffee. A week after this, she had a further episode whilst out walking with a friend. This episode provoked significant associated anxiety, and since then she has had a persistent constant subjective sensation of sway. At the onset of symptoms, she recalls associated photosensitivity although this has now somewhat settled. There were also some features of fatigue, anxiety, and tremors.
Miss Cutmore reports persistent subjective imbalance although with gradual improvement since onset. Anxiety can exacerbate symptoms, and she reports that mobilisation/movement helps her feel better whilst staying still exacerbates her symptoms. She reports a history of mild head motion intolerance although this has improved with self-directed gaze stabilisation and Cawthorne-Cooksey exercises. She reports visual motion sensitivity with supermarkets and busy places, although has had some improvement to her tolerance of patterned carpets/floors. She reports fuzzy vision and pressure in her ears as well as a subjective forward drift. Since July 2021, she has developed bilateral mild and intermittent tinnitus.
Miss Cutmore has now been seen by ENT and Neurology with normal clinical examination. She has not had audiometry. She has tried Betahistine and Propranolol without any benefit but with side effects of tiredness and dizziness. She found that CBD oil can be of benefit. She is currently having CBT to help with the associated anxiety. She is keeping active and performing self-directed exercises up to three times a day.
Discussion/Summary:
Miss Cutmore’s history of chronic subjective imbalance with associated anxiety features is certainly in keeping with Persistent Posturo-Perceptual Dizziness (PPPD). However, her features do slightly differ in that her symptoms ameliorate with movement. It is unclear whether there is an associated element of peripheral vestibular disorder for which she would require clinical examination and objective testing.
Her symptoms commenced post Covid-19 vaccination and similar symptoms have commonly presented post vaccination or covid infection. The presumed underlying pathology/disorder is akin to atypical migraine which can subsequently lead on to chronic imbalance and PPPD. Indeed, at symptom onset, she does describe mild migraine features including photosensitivity. Aural fullness and tinnitus can also be atypical audiovestibular manifestations.
From the tinnitus perspective, she would require audiometry, as it may also represent an underlying hearing loss and would require to be assessed. Her overall symptoms can occasionally be due to dysautonomia, and I have advised on lying standing blood pressure and pulse measurements to identify persistent postural tachycardia.
Management of atypical migraine associated PPPD requires to be holistic. She has associated anxiety and I was pleased to hear that she has already commenced CBT which will be of benefit.
For the migraine features, I have advised on simple lifestyle modifications including ensuring good oral fluid hydration (1.5 – 2 litres clear fluid a day), as well as trigger identification and avoidance (leaflet enclosed). We discussed pharmacotherapy but have agreed to commence a trial of over-the-counter high dose supplementation for migraine prophylaxis in the first instance. I have hence advised her to start Magnesium 500-600mg once nightly (start at half dose in the first week). She can also consider add on therapy with Riboflavin (Vitamin B2) 400mg once daily. She should trial this for at least 6-8 weeks in the first instance and if beneficial, continue for 6 months to 1 year. If not beneficial, we can consider add on pharmacotherapy with migraine prophylaxis upon further review after 8 weeks.
Miss Cutmore has been performing self-directed exercises, but visual sensitivity continues to be one of her main symptoms. I have hence advised on simple rehab in the first instance such as daily outdoor walks on uneven surfaces with good head and neck movement. She should consider reducing the intensity and frequency of self- directed exercises, as this can over sensitise her, instead focussing on gradual improvement over time, whilst performing the exercises using more complex visual backgrounds (checkered board, OKN stimulus).
Hello @ladyd! I have been diagnosed the same as you, i had a vng eng test, dx is vestibular migraine due to vaccine, my neuro otologist told me she is seeing tons of cases, of people who had many years before, and new cases, of vestibular migraines.
Question, above all, I have a huge fatigue, extreme fatigue, do you also have this symptom? I think my case is a mixture of vestibular migraine and something regarding the vaccine immunologic impact on my energy levels.
Best regards!
@tarruba i am sorry to hear that and I hope you get better, let us know which things work for you. Tomorrow i am going to see my oto neurologist and start with treatment, so far i have taken magnesium glycinate 400mg at night and 100mg coq10 2 times a day and i have been improving, but i have extreme fatigue also, i dont if due to all the vestibular issues. Are you having strong fatigue too? My best wishes