I have been suffering with headaches and dizziness for months and I have been prescribed betahistine.
I took it five days ago and I’m taking it three times a day and my headache is much worse!
has anyone experienced this and how long did it take to go away?
thank you!
Hi Fay-red.
We may have common cause here. I have been taking betahistine daily for more than 10 years, to fend off acute episodes of Menieres disease.
As far as I know that is the only indication for which betahistine is approved in the UK. So my first question is: were you diagnosed with Menieres? It's a rare condition, and there are several more likely causes of dizziness/ vertigo. A definitive diagnosis needs an audio- vestibular specialist. Unless you have this you should not be taking betahistine.
The patient leaflet for betahistine lists headache as a common side effect (affects more than 1 in 10 patients). It didn't give me headache for many years, though in the past 3 years I have developed chronic migraine - this from a history of occasional migraines.
What is your symptom history and diagnosis? For both headache and dizziness?
Hi Thankyou for your reply
Since June I have been getting headaches every day, I’ve never had headaches this often in my life.
Then about a month ago I started to feel off balance like I was swaying looking at my phone or the tv and feeling generally lightheaded/ dizzy. I was also doing random odd jerks/ and my head did a weird shake type of thing.
In the evenings I’m having one Hypnic jerk after another up to around 7 or 8 a night.
Last week I also started to get a weird noise in one of my ears, not a ringing more like a banging hisss type of thing, I can’t explain it.
The doctor said last week it sounds like vertigo but that didn’t really explain my headache and has prescribed betahistine and beconase spray while I wait to see a neurologist.
I started taking the meds last Wednesday 3x 8mg a day and my head feels now like it’s got so much pressure in it and my neck at the back is stiff and hurts. I have no idea whether it’s related or not.
Does this sound anything like what you have?
Thank you ❤️
Hi I'm on betahistine
Doesn't cause headaches it reduced my balance dizziness from head injuries
I have postural and visual vertigo long term plus tinnitus
I'm on amitriptyline for migraines vestibule at night
You do need see Dr your sytpoms don't sound like vertigo
Do you have high fever
Hi
I don’t have a fever no.
Did your vertigo happen even when in bed and just a feeling of being off balance and swaying or did everything spin? Do you ever get random jerks after going dizzy?
Yes if turn head to left to fast random jerks I get now a trauma response I just had menigitis.I had crystal in ear mis aligned consultant re aligned them I had vestibular brain re habilitation for some time now controlled by betahistine 16 my g 3 times day with food
You need move slowly and rest part mines from head injuries other had from child age car sickness
I have look out can't read book or anything while in car or bus.
Is your blood pressure ok
Hope you find relief soon
my blood pressure is low , but the dr said to just drink more water which I’m already doing.
Did you have severe head injuries? I’ve had a few bumps but nothing major.
Does the betahistine work for the jerks etc? Did you not get any head pressure when you first started taking it?
My blood pressure low I have re occurrence ovarian endometrial cancer on my spleen causing BP to drop low in standing or moving .
No no side effects betahistine
That whooshing your described I get when blood pressure drops low on moving.
Up neck with head pressure nothing to do betahistine for me.
Yes my go said raise legs high but oncology said it's my spleen cancer affecting suddenly drop BP.
I had concussion few times accident .
I'm sorry can't reply more today not feeling well
When you move go slowly stand up stand still then walk see if any difference I have do that or I black out.
Different to reason I'm also anemic but responding well to iron from gp
Once I'm well enough have my cancer surgery and recovered il see how is
So at moment I can't really help more as two reasons why similar sytpoms.
Bless you take care
The symptoms you describe don't include vertigo, which feels like the world is spinning or lurching, and it's impossible to maintain balance, making you nauseous to the point of throwing up. Vertigo comes as a discrete attack, and can be associated with several conditions including ear infection, BPPV (a misplaced crystal in an inner ear canal), and Menieres.
I have heard something like the sound you describe. A rapid bang + whine in one ear lasting only a few seconds, but repeated every few hours or days. It's always in the ear affected by Menieres, while my migraines are on the other side of my head.
Your dose of betahistine is so low as to be ineffective for Menieres or anything else. In Germany they start new Menieres patients on 10 × 16 mg / day, and that's my current dose. Note, this is prophylactic use, to prevent a Menieres attack. There's no evidence from clinical trials that betahistine effectively treats acute symptoms of Menieres or any other condition.
Can you get the bppv when sitting still or standing aswell? I definitely get this in bed
So you do experience vertigo? BPPV can give you a vertigo attack in any body position. Here's the lowdown on this and other conditions affecting the inner ear menieres.org.uk/information...
If it is BPPV, it's easily treated with the Epley manoeuvre. There are plenty of practitioners around, though I'm sure the NHS queue will be long, and near term you'd have to go private. It's a technique you can learn to do on yourself, but get an expert to show you first.
If it isn't BPPV, that link should point you in the right direction.
The headaches is another story, and worth waiting to see a neurologist about. Yours pre-date the dizziness/ vertigo but have worsened after starting betahistine. Give it another few days and if nothing changes it's reasonable to assume a side effect of the drug.
Could be migraine or Vestibular Migraine, they are associated with balance/ swaying/ spongey floor sensation. Feels like you are on a boat. Plus neck issues are common with VM. Meniere's is rare and there are other more likely conditions causing symptoms.
I forgot to add my occipital lymph node on the left side has been swollen for a few years
What does your doctor say about this?
They said not to worry because it hasn’t just appeared and been there a while
If you get to see a neurologist, mention it.
Has MCAS been ruled out for you?
No, I hadn’t ever heard of this before?
Might be worth researching
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