This may be weird question, but I'm a gamer. I play video games. I suffer from vertigo but it never affected my gaming. Suddenly, I can't play certain games. I get very sick. I got vertigo so bad playing Mario Cart, I was in bed for 5 days. Dizzy, nauseous, sweating, lethargic. It was crazy. If I just turn my head to quickly I get dizzy. Even the tickertape words that scroll below the news cast on tv make me nauseous. Is this PA?
PA, vertigo, and gaming : This may be... - Pernicious Anaemi...
PA, vertigo, and gaming
I had very bad episodes of vertigo that lasted for 4-5 days during my deficiency period. The doctor put it down to a viral infection of the ear (although I never had any ear pain or discomfort). But then this is the same idiot who advised me to supplement B12 at 1/60 of the recommended dosage. Vertigo is listed as a possible B12 symptom by B12 Institute NL, so yes it's possible, but hard to be sure. P.S. whatever you do, do NOT play the game "Descent", it guaranteed to cause nausea even in a perfectly healthy person
Okay! I was afraid of asking such a silly question. But I had a sneaky suspicion. I hope it gets better because I miss Mario Kart. And I will definitely stay away from Descent. I play Elder Scrolls, neverwinter, Zelda, and I just started Godfall, but it makes me a tad nauseous. I thought maybe if I play in small increments, I can get used to it. But even ESO has made me a tiny bit sick. Oh and I played Diablo Resurrected and did ok with that.
That B12 Institute symptoms list, most comprehensive I've seen : b12-institute.nl/en/symptom...
Oh and just to say although it might be PA, I would still bring it up with your doctor anyway and get it checked out, just in case. There are many other possibilities.
Wow!!! Technoid! that is quite the list. I am scared that I have so many of them but not some of the worst. This answers decades of questions! Literally 37 years of questions! Thank you so much. This is the best list for sure. I have not stopped looking for 3 months and have not see this one. That is all I do is try to find the answers to help myself. PA has answered a lifetime of medical questions. Thank you for this list. Others should really see this. Maybe repost in a new thread just for it. For newbies like me, this has answered so many of my questions.
Yup! And particularly B9 (folate) for me.
Could be BPPV if your b12 levels are optimal. Labrynthitis usually comes on following a cold where your nose and ears get bunged up. Can be caused by neck issues. Very unpleasant!
Thank you I have never heard of that. I do have very bad neck problems. And that's exactly what I thought my dizziness was from my neck. I was rearended on my motorcycle and had severe Whiplash from my neck to my tailbone and I've just excused a lot of this stuff because of this. I hope that you don't suffer from this. Thank you so much for posting. Every information is important and I Google everything. Take care be well
I was just going to suggest another alternative was due to your neck and nerves..then you posted this! I regularly have vertigo, and 20 years ago even had 3 fits, due to my neck nerves being trapped! I learnt certain activities aggravated it, eg like chopping carrots..it seemed to be very minute angles of my head that would do it either over a few minutes like the carrots, or quick sudden movements and I’d just drop. I go to a very gentle chiropractor spinal manipulator now, and avoid certain activities. Since your gaming is addictive, try a different seating position, head rest etc…I really notice this difference in being a passenger.
Thanks Judith, yes, sitting in one position is hard. I'm a semi retired graphic designer photographer and sitting at the computer or looking through the lens is hard on my neck. Headaches, dizziness, I've been painting watercolor lately. Not good at it but it is therapeutic, but it does really hurt my neck. Physical therapy taught me some relief pressure points etc. It helps. Thanks again. Good luck with your neck.
It was certainly one of my issues 😏
Have you been diagnosed with PA?If not , it would be a good idea to go and begin by getting a full blood count , B12 , folate , kidney and liver function and iron test done.
If you are diagnosed with PA and your B12 is still deficient it can cause many other conditions to occur including thyroid problems and Dysautonomia.
I suffer from a genetic tachycardia syndrome which causes Chronic Dysautonomia ( autonomic nerve dysfunction) . The autonomic nervous system controls involuntary body functions like " fight or flight " and " rest and digest" . These functions include changing blood pressure and heart rate to cope with activity , temperature control , digestion , sleep cycles , coordination and response to outside stimuli like light and sound , pain.
When the autonomic nervous system is not functioning properly you can get loss of balance , dizziness and vertigo, especially when moving from sitting to standing or moving the head quickly , nausea , change in stomach function, hot or cold sweating , insomnia , palpitations , poor circulation, fatigue, migraines and numbness.
Because I already suffered with these symptoms from my Dysautonomia I assumed that my condition was getting worse or flaring in the months before I was diagnosed with B12 deficiency anaemia.
It was only because of a regular blood count test showing a change in my platelets , blood cell size and iron that I was tested for B12 and the Anaemia was found.
During my loading dose my nerve related symptoms got much better , but three weeks on I can feel the symptoms building up again.
My research since diagnosis shows that B12 deficiency anaemia and PA are both closely linked to Dysautonomia, causing Acute dysfunction which is improved when the B12 level is well managed , or for some people whom also have Chronic Dysautonomia , lack of B12 can make the conditions much worse and reduce the effect of medication on the symptoms.
B12 is essential for heart and nerve function.
I suffered all of your symptoms because of my Tachycardia Syndrome and P.O.T.S , you may lose them entirely if you get your B12 condition managed , or if they continue despite treatment you may also need to be examined for Dysautonomia or P.O.T.S in the future.
Until your condition is managed , drinking more water , and doing so quite quickly before getting up or sitting down helps reduce the dizziness.
Move position more slowly , including turning your head or leaning up and down , and pause before walking to prevent falling or fainting. Drink water again as you pause.
Less screen time helps , try and keep at a steady temperature and wear sunglasses if light effects you .
Have your salt level checked as you may need a little more salt in your diet.
Compression tights or sleeves can reduce numbness from slow circulation.
Blearyeyed!!!!! Yes I do have PA and yes I have all those symptoms!! Omgosh! I'm so sorry you suffer so much. I don't sleep. I bought a watch to keep track of my hours. I sleep between 3:00 and 5 hours and they're not even complete sleep. I hardly ever go into a deep sleep. My digestion is very slow my temperature sometimes goes down to 95.1. I get confused I can't stand noise. The news weather cast and the sports drives me up the wall and it never used to bother me at all. I can't even listen to the sports announcer it's too much information flying at me all at once. I thought I was going crazy. I have all of the symptoms you're talking about. I'm so sorry this is happening to you too. It sounds like you just started your treatment. I started 3 months ago it's been a rough go. But this forum has helped me so much, everybody on here is so helpful. I hope you find relief and I hope that you get your life back. Oh my gosh I cannot believe what you wrote. All of this is just so amazing to me everything I'm learning here on this forum because I went for so long thinking I was crazy. doctors made me feel like I was crazy. They put me on every kind of drug you could think of because they thought there was something mentally wrong with me. I've been alone for 22 years because of this. I just stay to myself. I don't have a family and I live someplace that I just barely met people and so I don't want to burden them with this and so I just stay to myself. It's devastating. Anyway I have to go thank you so much for writing this. I sure wish you the best. If you aren't getting enough B12 start self-injecting and buying your B12 from Germany or Canada like I do and what I learned here everybody does. If I didn't I would have only had three shots at this point and I've already had over 60 by taking things into my own hands. Good luck!!!!
Yrs my daughter got POTS ftom undiagnosed so untreated b12 and folate.
Also before that had saliver glands infected.
Vertigo episodes!!
That's very interesting , I used to suffer from regular infected saliva glands , I also have Dry Mouth as part of Sicca Syndrome .That was actually improved by also taking my Dysautonomia medication and a daily antihistamine.
My mouth conditions , including a rare one called R.A.S.S ( Recurrent Aphthous Stomatitis Syndrome) are all linked to my Type 2 Ehlers Danlos Syndrome , but they appear to get worse with the B12 Deficiency.
Has your daughter ever been assessed for Ehlers Danlos or a Hypermobility Spectrum Disorder?
Has she been assessed for other Connective Tissue disorders?
For anyone in UK looking into EDS (Ehlers Danlos Syndrome)
Link to UK EDS charity
NHS link about EDS
nhs.uk/conditions/ehlers-da...
In UK, there are NICE guidelines on Hypermobility in children which mention EDS.
A while back, I posted this on the Thyroid UK forum.
On 20th July 2022, I listened to the latest All in the mind - and it was interesting.
I was particularly struck by the associations made between mind and body - the seemingly very physical hypermobility syndrome and other issues.
We have had many posts which referred to hypermobility/Ehlers-Danlos, and ADHD in particular.
Hence, I wrote an email to Dr Jessica Eccles asking if there is any thyroid connection.
This is her (automatic) reply - which so helpfully points out numerous links.
Hello
If your email relates to queries regarding hypermobility experiences as a patient or carer I really value hearing about your experiences. I have been rather inundated with emails since the BBC radio 4 show on All in the Mind ( bbc.co.uk/programmes/m000q8z7, 18 mins in) and I am afraid I simply cannot reply to all.
I have listed below some invaluable resources and information below. I do not have a private practice and am unable to provide specific medical advice outside my clinical practice in NHS (Autism, ADHD and TS in Sussex, UK). The Ehlers Danlos Society have a list of health professionals who are interested in hypermobility internationally ( ehlers-danlos.com/healthcar....
Although this site may change host at some point in the future the following is an excellent resource for sharing with your health care professionals ( rcgp.org.uk/clinical-and-re...
If you are interested in a broader overview of the way hypermobility affects the many systems of the body, I really recommend Claire Smith’s excellent book designed for patients and carers. ehlers-danlos.com/understan...
I prepared a lay article about my initial brain imaging research for patient support organisation hmsa hypermobility.org/ and this can be found bsms.ac.uk/_pdf/research/jo...
I would also recommend the support organisations ehlers-danlos.org/ and if in sussex sussexeds.com/
You may find some of my youtube videos of interest youtube.com/results?search_...
I have been interviewed on some podcasts
uk-podcasts.co.uk/podcast/b...
youtube.com/watch?v=2EolOcT...
And for a longer, more scientific overview of hypermobility and anxiety vimeo.com/346710898
The anxiety trial and the brain imaging trial are now closed for recruitment however if you would like to be kept informed about future studies or receive research updates please email my PA Rosie Mulgrue r.mulgrue@bsms.ac.uk
You can also follow me on @BendyBrain or researchgate for research updates
I have two articles which came out recently about biological mechanisms in hypermobility and chronic pain and fatigue
Opinion piece:
pubmed.ncbi.nlm.nih.gov/334...
Data paper on overlap between hypermobility, fibromyalgia and ME/CFS
pubmed.ncbi.nlm.nih.gov/334...
We also published a paper recently reviewing the current state of the art on the overlap between hypermobility and mental health issues
wjgnet.com/2220-3206/full/v...
We looked at the relationship between hypermobility and dysautonomia in mental health patients
onlinelibrary.wiley.com/doi...
Best wishes and thanks
Dr Jessica Eccles
Thanks for including all of these interesting links relating to hypermobility and EDS.
I was struck by your wording at the beginning of your reply however , especially the words, "seemingly very physical hypermobility syndromes and other issues".
May I say as a long term sufferer of hypermobility because of Ehlers Danlos Syndrome there is no "seemingly" about the physical nature of these conditions.
Hypermobility, and specifically , EDS affects the production of collagen and connective tissue which can cause problems in any part of the body that relies on connective tissue to properly function . The physical problems that arise from a connective tissue or Hypermobility disorder are very real and very physical. It's not just being a bit double jointed.
From daily dislocations , subluxations , pulled ligaments , tendons and muscles and constant bruising and poor wound healing to bone wear and tear , problems in carrying a child , endometriosis, heavy bleeding, prolapses , hernias , poor circulation and faults in the heart. Moving on to disabling Dysautonomia , P.O.T.S, and various types of neuropathy and brain processing issues, hypersensitivity and drug intolerances , gastric and bowel dysmotility causing malabsorption of vitamins and medications , dental movement and decay , migraine , fatigue , Fibromyalgia, M.C.A.S, lack of response to local anaesthetic, low immunity , eye problems, the physical lists go on , on and on.
The extra physical care required by patients in a clinical setting is also specified and when diagnosed we carry a medical alert card to ensure our treatment does not actually cause us further injury.
Although these conditions can have a link to Anxiety and Depression in many sufferers , I am lucky enough not be one of them .
More often than not the Mental Health issues from Hypermobility Disorders experienced by sufferers arise from the constant physical pain and lack of physical security sufferers experience during basic activities because of the constant injuries, infections , body weakness and physical imbalance that must be coped with everyday , often alone, because of the lack of knowledge , understanding , and therefore belief, that most doctors have of hypermobility issues.
If you often experience the rapid popping in and out of your ribs when you sneeze, you sublux your shoulder getting a tin off the top shelf in a supermarket , your jaw locks when you eat or fall constantly because your ankles turn without warning it isn't surprising that even basic daily activity starts to cause people feelings of anxiety .
Rather than being more flexible we are more often very stiff because of the tension we must out into our bodies to prevent a joint from slipping out if place.
Couple that with the lifelong abuse experienced at the hands of the people around you , usually from childhood , from being treated like a performing animal , laughed at constantly when you fall, or accused of being clumsy and not taking care of yourself by doctors , dentists and employers the emotional impact can be huge. Even the strongest of us can find it hard to be patient with people because of their cruelty and ignorance.
When you are having to tackle physical issues constantly that are treated as though they "seemingly " have no medical/ physical cause and are treated as though your conditions are not connected , or are "all in your mind", because there are no blood tests for your illness , or the tests available are not done at the right time the frustration becomes suffocating.
You have to fight tooth and claw to get properly assessed for hypermobility and prove it has been causing your problems for decades , therefore, it is not surprising that the Negative Stress you experience at the hands of medical professionals, and the sceptical reaction of friends and family and sufferers of other illnesses or more visible disabilities eventually wears down your Mental Health.
I got into the habit of saying to doctors after my knowledge and confidence grew in dealing with my health problems , " I do not have physical problems because I have Anxiety , but I occasionally feel anxious because I have physical problems that have not been treated or diagnosed properly yet".
I just wanted to add this comment in the hope that it will build more awareness , support, and understanding in the Health Community in general for people like myself whom suffer from this "invisible" disability every day .
As you know yourself it is hard enough getting the right tests and treatment for a condition that can be tested for like P.A or B12 Deficiency, imagine how hard it is getting help when you have no blood tests that can prove your problem except for genetic tests that do not cover all the types of your physical condition , Rheumatologists will no longer assess you for and most Doctors refuse to diagnose because they don't realise how simple the physical tests and classification conditions actually are.
The "seemingly" was meant to emphasis that we tend to think of it as being ALL physical and ignore the non-physical aspects. Definitely not meant to even hint otherwise.
Gosh Blearyeyed, I'm so sorry for your struggles. That sounds just awful. On top of PA? That must be hell. I'm so sorry. I have felt the same way for over 3 decades. And just when you think you found the answer, you find that the doctors don't know anything about it your illness and your still virtually alone. So frustrating.
"When you are having to tackle physical issues constantly that are treated as though they "seemingly " have no medical/ physical cause and are treated as though your conditions are not connected , or are "all in your mind", because there are no blood tests for your illness , or the tests available are not done at the right time the frustration becomes suffocating."
I was a massive gamer but I also had a vertigo episode about two years before diagnosis of PA. Since then I found it difficult to game. I used to be a very good online FPS player. Have not played FPS for over two years. I used to play a golf game as it was slow paced, but I no longer game at all. P.s anyone want to buy an xbox
Im so sorry! Sometimes I feel like I'm heading that way. Really PA takes everything from us doesn't it? I used to be a hiker and a photographer and now I can hardly hold my camera to take a picture. I'm so sorry! that makes me very sad. Now I paint as long as my neck and my eyes can take it. I'm not very good but you got to do something. I sure hope you can play a game again someday. I know in Neverwinter and Elder Scrolls you can slow down your motion which has helped me a lot. It probably drives my friend crazy but I have to slow down. Maybe after a while you'll be able to play again? 😔
I had vertigoand collapse as the finale to a list of ignored symptoms by medics.
My Gp thought totally unconnected to my eventual low b12 test done.
We know different now.
I'm left with a vestibular disturbance.
No quick fix I 2ad told.
Also maybe part of the brain ( certabella ) affected by deficiency.
Clothes with stripes
Busy patterns actually make me stagger.
Go off balance with nausea.
Slopes
Overhead lights do the same.
Still can't use a bigger screen than my mobile.
This always sets off tinnitus as does speaking .
Landline still can't be used.
TV I now can tolerate. That rook over 3 yesrs
Can't go put in the dark as lights from cars lampposts stop me veibg able to walk without looking lije I'm very drunk.
Vestibular physiotherapy really helps manage it.
Brain retraining is bizarre.
I would cut back and limit your screen time.
Look up Cawthorne exercises.
The eye ones I found very useful.
Still do.
Oh my gosh Nackapan!! That is terrible. Bright Lights very much bother me especially if it's appearing through a hole in a curtain in a dark room that very much gets to me. I can't even put my head up and then down I get dizzy and nauseous patterns also make me nauseous. Looking through my camera makes me nauseous. I had no idea all of this was that. In a way it's great to find out that that's what this is. I think I have neurological things that aren't going to go away because I find it hard to find my words sometimes and I just feel outside the circle from everything else. I don't know how to explain it. I'm heading out for my endoscopy right now. We'll see what that says. Thanks so much for all this info. And I sure hope you feel better and get some kind of relief
Come to think of it, I was doing physical therapy and they taught me the eye clock exercise and some others. I found that hard to do. It made me nauseous so maybe that is a sign. I should give it another go. They also adjusted something in the back of my throat that was supposed to realign the tip of my spine? Weird but everything in our bodies is connected in someway.
Yrs the first time I had vestibular pysio it was useful to get me walking.I then coykd not tolerate it.
Set off migraines. That was inlays 2018.
I tried again a year later . Thus tine a pysio for migrain / headaches ongoing .
Thus tind I was told to stop as he wanted to wait until til head pain reduced. !!
I think he got scared .
So now having g vestibular pysio agsin . Thus time referred by the NHS.
Same woman as first seen.
That was useful.
She is helping me .
Am overwhelmed by the amount of exercises but am in total control.
She u derstands .
I've made cards to keep it simple and fo when I can.
Interesting you mentioned your throat.
She put gloves on and had her hand in my mouth.
? Aligning jaw .
Also took measurement of how wide I coujd open My mouth.
I hated this.
Only done once.
Difficult to explain reaction to overhead lights.
I 2as in an unlit room as had s window.
On leaving j forgot to put my visor hat on.
I ducked lije under attack. Then started to stagger.
I stopped took a few seconds to work put what was happening.
Then realised.
Physiotherapist had been watching.
So fully explained.
I think somewhere in my notes it stated ? MH or ' in my head.
She remarked ahe eoukd write up what she witnessed.
To clarify things on my notes??
Yrs the exercises can make you feel awful.
Slowly slowly will help you.
I'm hoping light sensitivity is better Thus winter.
Otherwise evenings indoors tricky to say the least .
So don't totally reject the exercises but try a few .
Eye ones neck stretches ?
Little by little
Thanks Nackapan, I found a really great physical therapist when I moved to Iowa. Now that I know what's wrong with me I think I can go back there and ask them to help me more specifically. I think they gave up on me because I was not improving. The nice thing was that they validated so many issues for me and that mentally helped me. But now that I know what's wrong with my stomach and everything else, Maybe they can gear my therapy more towards that. But they really help me a lot. So maybe I will give them another try. Thanks so much for all your information. I hope you have some relief.
Hope everything went well yesterday !
Thank you SallyannI. The results will come back soon. But for now Hiatal hernia, and he said to follow a GERD diet. My stomach is so acidic and burning and nauseous right now and don't know how to calm it down. Afraid to take omeprazole or antacids. Kind of feeling poorly. Tired.
EllaNore, I would have many episodes of what you're describing. I would be at a hardware and get this vertigo and dizziness almost to the point of blacking out...I would just grab onto to something and hold on as it typically would pass. Or if I was on a walk I'd grab the nearest tree! Lol they became my friends, I was always keeping an eye out for the nearest tree or store shelf just in case! It was scary and I had no idea what it was as I had not been diagnosed with PA yet. But lots of MRIs and Cat Scans showed up clear. If it is B12 related it will clear over time as thankfully I have not had an episode in over a year so I think my B12 injections solved that problem.
Rex
Yes yes exactly! I always have to have something to hold on to or I always have my cane. I'm so glad to hear that it will clear up. I am so grateful to have found out the answer to all of my medical questions. Somebody posted a really great link to symptoms of PA on this thread. It's quite extensive
Yes, that link on B12 symptoms was the most thorough I've seen so I commend them for putting that together.
I have PA and have had a couple of bouts of severe vertigo but I never had it before treatment—only severe dizziness with low b12 related to anemia when my b12 was low.
My severe vertigo episodes (two , ten years apart) were related to allergy injections and the covid vaccine. They were both treated with prednisone since inflammation appears to have played a role. I do still continue to have some occasional dizziness but that seems to be related to migraines.
There are different causes of vertigo and it is a horribly debilitating condition. Unless you suffer from low b12 symptoms I would not make assumptions that’s what you have. I suggest you see a doctor and go from there. Best of luck.
Thank you mcg-woo! Reading your post and Alpaca24 below, maybe you have what they have? I had no idea when I asked this question it would not be such a silly question. I hope you find relief.
I think this might be true. I definitely have dizziness and lightheadedness without a bad headache at times. I thought this was because the series of Botox injections I receive to treat migraines every 3 months does a good job controlling pain that sometimes full blown migraines don’t develop in the form of severe headaches. I use zofran and antivert to control dizziness, nausea and lightheadedness. I am going to bring this up with my neurologist when I see her next month. Thanks, EllaNore!
Well good luck with that mcg-woo!! I hope that they find something to help you. You know I thought this was a silly question to ask but something was nagging at me and told me that I should ask this question about video games. I'm so surprised at how many people are responding to it. Just goes to show you no question is a silly question
Makes sense to me. I’m not a gamer but I can’t even stand to see a lot of motion just watching regular television even when I’m not dizzy. I have been predisposed to motion sickness even since childhood. Best of luck to you and thanks!
Hi EllaNore, I have PA and right around when I started my loading doses of B12 a few years ago I started to get vertigo. In fact, I think the first time was the day after my first jab which made me think it was the deficiency or a side effect of the injections. Over time, it continued and my migraines got a lot worse. I got diagnosed with vestibular migraine/migraine associated vertigo. This can result in vertigo without classic migraines headaches too. It has calmed down with medication and diet changes. You should definitely visit your doctor about the vertigo, as others have said, as there can be so many different causes. I think the nerve disturbance I had with PA caused a big flare up in migraine. There is a forum (mvertigo.org) for vestibular disorders which you might find helpful.
Thank you Alpaca24. So many different ailments from PA. It's crazy. I did read about the optic issues it causes. I will read up on it. I don't know if I have a doctor anymore. I think I overwhelmed him already. He is supposed to refer me to a specialist. If he does. I will gently add it to my list. I have seen my old doc for vertigo 4 or 5 times. Blamed it on fluid in my ear. I hope your migraines are under control now.