Very Scary Symptoms

[NJMommy]

Hi all, I was diagnosed with PA 5 years ago and have been taking b12 shots twice a month since then. I started off with horrible neuro, digestive, and a whole bunch of other weird and horrible symptoms. Since regular treatment began I’ve been mostly alright with periodic flare ups of weird stuff happening but I always knew it was PA related and a b12 booster usually did the trick.

Today I wound up the emergency room at the hospital. I can’t regulate my temperature. Hot and freezing at the same time but not sweating, Horrible nausea/indigestion, dizzy and not right in the head, and on and off rapid heartbeat. All signs of a female heart attack, but ekg was fine. After hours of sitting not having yet been seen I was told it could be several more hours before I was even seen by a doctor to get my blood drawn for Triponin levels (I’ve had no cardiac issues in the past but have cardiac issues in the family) I made an appointment with my Cardiologist for tomorrow and left. I also realized that I gave myself an injection on Saturday. I’ve heard that sometimes out of the blue a person can have a bad reaction to a b12 injection. Do the symptoms I just detailed sound like anything anyone has experienced after a b12 injection? I should also note that I took 2 1000 mgs sublinguals a few days before my shot. Any input would be most appreciated!! I hope everyone has a happy and healthy holiday season!

[Statesideheather]

That sounds very scary! I've definitely had some episodes that frightened me enough that I was ready to go to ER. I always waited and fortunately things subsided. One of the biggest issues I've had the last year and a half is vertigo. I get fluid in my ears somehow. I don't know if it's PA related specifically. And I do not know what could be going on with you.

But I can tell you my experience. When an attack comes on I am stunned and feel as though I am about to die. I cannot explain why. I get flushed everywhere. I fight to stay conscious. My heart rate is all over the place. Several minutes of it and then I am exhausted the rest of the day. I'm between the attacks I am hit with nausea, occasional dizziness and generally feeling that my brain isn't quite working. In addition to that, for the first several months I suffered neurological symptoms in my entire body. Pulsing tingling, throbbing. I would wake up feeling I was on a wave. Every time I got in a car, my whole body lit up like a stunner was pulsing through it.

Once I figured out it was my ears, I started doing things to help keep them in good shape. And my brain has learned to compensate so I don't have nearly as much an issue now. I can say that vertigo is not at all what I imagined it would be and it causes me differen t symptoms at different times.

So, after all that, I guess I was thinking that your symptoms reminded me of vertigo attacks that I get. I'm not sure how you could check for that. I do hope you feel better soon!

[Nackapan in reply to Statesideheather]

I started with a collapse thrn vertigo. I csn relate to the horrible symptoms you describe. If I was in the bath or felt as though I was in a rough sea of waves. I wasn't. I think it is very related to b12 defiency. Affecting your Nervous system thensures it all out of kilter

I'm looking into vestibular rehab if I can find the right doctor./specialist. Alsi pysio again and Neuro optoamist

Cawthorne exercises helped get me walking along with b12 injections.

[psawant in reply to Statesideheather]

Do you still get the vertigo attacks ?

[Statesideheather in reply to psawant]

I haven't had a major one in months. If I tilt myhead to the side or lean back in a rocking chair, I feel it! A quick rush of the world feeling all wrong and my brain suggests it might be time to check out. But I catch on right away. I hold my head up or stop rocking, etc. And things are fine. I really feel like my brain has just compensated for things so I'm ok mostly unless I do something odd, then I'm reminded.

I remember getting dizzy on the merry go round as a kid. Or getting dizzy just spinning . This vertigo has never felt like that. It's just an awful sickening , panicky feeling, sometimes like the world is ending. Im not missing that feeling at all!

[psawant in reply to Statesideheather]

Its been a month I was diagnosed with b12 deficiency, My symptoms related to peripheral neuropathy and tingling sensations went away in three weeks. But I am getting this vertigo kind of feeling you explained above. But I can see as the treatment progresses its intensity and duration is getting reduced. Still it scares me a lot.

[Statesideheather in reply to psawant]

It is very scary. Every time it feels like, worse than death, like world ending. It's AWFUL. I'm glad it's getting better for you! And luckily, once you understand it, it's a little easier to stay above it and not let it be so scary.

[Nackapan in reply to Statesideheather]

Sounds horrid. I get different forms. I hate tinnitus too. Munro seems so linked with eyesight and as half your brain is used for sight ots hardly surprising . Cant get referral yet for ? Right consultant/specialist. Neurologist has ruled out nasties but given no explanation for debilitating symptoms left.

The pains shooting up the back of my head came on suddenly again last night. Now feel like I'm in a twoforms.co.uk bowl. Effervescent fizzing all over head going on?? I'm due an injection Wednesday (2 weekly) I think too much noisy paper trying to sort a few presents. I didn't even wrap them as knew noise would set my head off. So many symptoms we all suffer. I just hate it when a new one happens as have enough in my repertoire...

[Nackapan in reply to psawant]

Touch wood no. I get off balance a nd cant walk well but have managed to stay upright . I can get dizzy then a headache. The headache helps balance

[Sleepybunny]

I'm glad to read you are seeing a cardiologist and hope they will help you find answers.

[Nackapan]

I hope you didn't not get a repeat of that .I wish you well. I've had very scary neurological symptoms and never got an answer to what was going on.

[Cherylclaire Forum Support]

Sounds terrible.

Can't say I've had that.

I have been getting a thumping heart- not fast just hard -sometimes I can feel it from neck to groin on left side- which causes overheating and dizziness after and which was a rare occurrence, mainly at night up till April/ May and now happens frequently on most days and often nights too. Wakes me up suddenly.

Nothing happens- not worsening. Disturbing and uncomfortable more than anything, certainly not painful or anything related to exertion. Leaning forward or lying backward seems to bring it on, and after eating (which could be through leaning forward !) .

Have had a 24hr monitor about 3 weeks ago, via GP on advice of Metabolics consultant. GP not heard anything back yet and told to try again next week.

Like you, haven't had heart problems, but both my mum and dad did.

I will let you know if anything comes of this.

What to do ? Don't ignore it, but don't worry? Easy said.

Let's hope it doesn't happen again.