Migraine associated Vertigo has only been recently recognised, just in the last few years, but affects a large number of patients, who until recently had few recognised treatment options. Clinical trials are underway, but pooling patient experience may help others find treatments that help them.
Filling in the polls at the end of the page may help establish a database of what works for which patients.
Summary Information about Migrainous Vertigo
Around 30-50% of patients with migraine experience at times an abnormal sense of motion, at times clearly vertigo (a sense of spinning), at others a more non-specific sense of imbalance. This may be accompanied by other migraine symptoms, such as photophobia (discomfort with bright light) or headache. An increased sensitivity to motion, particularly to movements of the head, or fast-moving objects are often part of the attack. Patients with migraine and certainly with migrainous vertigo have increased likelihood of motion sickness.
It is said that up to 1% of the population of Western countries suffers from this disorder. It is estimated that whilst 60% of vertigo patients seek medical attention, as few as 20% of patients are correctly diagnosed with vestibular migraine. Women are 1.5-5 times more likely than men to be affected.
The mechanism at this stage is unclear, but an increased sensitivity to balance stimuli or a failure of integration of different types of balance stimuli are at this stage possibilities.
Migrainous vertigo is often well controlled with certain migraine (especially preventative) medications. Clinical studies have shown a reduction in duration, severity and frequency of the episodic vertigo with preventative medications in these patients.
It has only been recently recognised by the International Headache Society as a separate disorder and research into the area is growing rapidly.
Results of MAV survey
I performed an online survey to get more information from real patients about MAV and the links to the results are below, in two parts:
Results of MAV survey 1 and Result of MAV survey 2.
You can compare this to the (little) evidence that exists in the medical literature for treating Vestibular Migraine.
Treatment options in vestibular migraine (from Obermann et al).
| Acute treatment | Dosage | Trial (Reference) |
|---|---|---|
| Zolmitriptan | 2.5 mg oral | Randomized controlled trial (RCT) (29) |
| Rizatriptan | 10 mg oral | RCT, motion sickness (30) |
| PROPHYLACTIC TREATMENT | ||
| Metoprolol | 150 mg oral | Retrospective cohort analysis (31) |
| 100–200 mg oral | Retrospective cohort analysis (33) | |
| Propranolol | 160 mg oral | Retrospective cohort analysis (31) |
| 40–160 mg oral | Retrospective cohort analysis (32, 33) | |
| Valproic acid | 600 mg oral | Retrospective cohort analysis (31) |
| 600 mg oral | Cohort study, vestibulo-ocluar reflex (34) | |
| Topiramate | 50 mg oral | Retrospective cohort analysis (31) |
| 50–100 mg oral | Open-label, chart review (44) | |
| Butterbur extract | 50 mg oral | Retrospective cohort analysis (31) |
| Lamotrigine | 75 mg oral | Retrospective cohort analysis (31) |
| 100 mg oral | Retrospective, open-label (41) | |
| Amitriptyline | 100 mg oral | Retrospective cohort analysis (31) |
| 10 mg oral | Retrospective cohort analysis (33) | |
| Nortriptyline | 25–75 mg oral | Open-label, chart review (44) |
| Flunarizine | 5 mg oral | Retrospective cohort analysis (31) |
| 5–10 mg oral | Retrospective, open-label (33) | |
| 5–10 mg | Open-label, post-marketing (36, 37) | |
| Magnesium | 400 mg oral | Retrospective cohort analysis (31) |
| Clonazepam | 0,25–1 mg oral | Retrospective cohort analysis (33) |
| Cinnarizine | 37.5–75 mg oral | Retrospective, open-label (35) |
| NON-MEDICAL TREATMENT | ||
| Vestibular rehabilitation exercises | 5 therapy sessions over 9 weeks | Uncontrolled, observational trial (43) |
| Caffeine cessation | 4–6 weeks | Retrospective, observational trial (44) |
Now your turn…
Your feedback will be valuable to help characterise the range of symptoms and effective treatments you have found to share in bulk with others.
Once sufficient answers have been compiled, I will share the overall responses with commentary. To keep in touch, please submit your email address below:
I have downbeating nystagmus which neurologists say is an indication of a CNS origin. My mother gets visual auras without headache; father also suffers from vestibular migraines but won’t admit it (he’s 88 years old and been complaining of dizziness/imbalance for about 25 years). My imbalance seemed to improve after menopause and is now a lot better than when it first started. Tried giving up gluten to test the gluten ataxia theory but it did nothing.
This format is impossible to use on a mobile device. Scrolling on a page within a page isn’t working.
For mobile, may be use the direct link: http://goo.gl/forms/Wx2yw0c4O1
I have just been to see a natural healer if you are interested in the results and treatments as it has helped more than anything else
What therapy were you given?
Im in Perth, would love to take part in any further studies or if I can help in any way.
Thanks
Rob
Thank you. I will see what results we can get from this and then probably try something in more detail, such as talking about side effects as well. I wanted to get a feel for the range of therapies and symptoms before moving further.
Thank you for this survey. As usual I forgot to mention something and that is that I can ‘switch off’ the rocking sensation (but not the migraine) by using a TENS machine. The rocking is sometimes worse, afterwards, as it is after I ‘disembark’ from a moving vehicle. I’d be really interested to know if people with VM experience some lifting of motion symptoms when they are in a moving vehicle. So far this has been seen to be a unique feature of MdDS, but I’ve heard from some people with VM that they feel a reduction or cessation of the motion sensation when they’re in motion.
The improvement with motion as you mention is most typical of Mal de Debarquement (following a cruise, train or plane trip typically). I have only heard of it rarely otherwise. I will add this to the survey and see if there are others who experience it, too.
Thank you. I know some people get some worse migraine symptoms (especially nausea) when in motion but less rocking/swaying/bobbing. I get the impression that if they have rotational vertigo this is *not* mediated by re-exposure to passive motion, unfortunately. I just heard from Scott that you’ve had a great response to the survey, which is excellent, and people have been cross-posting it to other sites. Does migraine dot com have this survey? Or VEDA? I can’t figure out how to post it to them – dratted cog fog!! Several suggestions have come up regarding the survey, one of which is to provide a space to list any other diagnoses and/or backdrop medical information regarding things like a history of head and neck injuries and if onset seemed to be linked to any hormonal issues. Hope that helps and, again, many thanks for this survey.
Not sure how to post to other forums. Have added questions about hormones and head injuries, the latter I think would be somewhat less common in all, though I have many patients with post-traumatic migraine
I too find that my sensation of rocking and twirling is always there to some degree when I am sitting, standing or lying goes, but goes when I travel in a car. My balance and walking are quite often not as good after sitting for longer periods of time.
Please note I also have ms.
This can cause its own set of symptoms, but that is OK, as the symptoms still need to be controlled.
Pregabalin has helped quite a bit with anxiety.
Nortriptylene has reduced the amount of exhasabations
Propranolol was for high blood pressure but never done anything for the dizzies
I still haven’t found a med to help with the dizzies yet or the everyday feeling so ill symptoms.
It is often a difficult condition to treat, hence the importance of finding if anything works more often for patients
With further questions added, should we complete the survey again? Would that skew the results?
PS – I’ve posted the survey to VEDA and Migraine dot com now : )
I have a diffrent type of migrain with virtigo mine feels like the house is moving up and down like an earth quake or boat ride, if I try real hard and find something to keep me occupied and take a couple valumm it helps, but whats weird compared to what others say is it’s when I stop moving that it happens, I”ve never felt it while riding my bike or driving my car. it happens when I sit , lay or stand still the most, sometimes so strong I have to do something because the house keeps feeling like it’s sinking or something. I also have cervical spine/disk problems the list is to long all just say C2- T1 is damaged and causing all kinds of problems in my rt arm and fingers. so that might be part of it I didn’t have the vertigo until about 6 month ago. so I have some pinched nerve damage and bulging disks along with stanosis ? and the rest I couldn’t even begin to spell. and Carcinoid cancer. so??? Joan
Re type of headaches. I get most pain in the middle of the forehead and behind the eyes. I didn’t see this on the list.
Would like to read these comments but the print is too light….anyways, thank you for collecting info from us
Unfortunately, I have answered this survey with each change. How are the responses being sorted? Also, you can answer the survey multiple times. It cannot possibly give appropriate results except to develop a controlled survey at some point using this as a preliminary tool. Great idea, but maybe finding help development and design would provide more significant answers. Thank you.
This is designed as a survey not a detailed study. Those who have subscribed to the results by email may be happy to undertake more detailed surveys, though it is a shame that the survey was filled in multiple times…
Re MTHFR: Have you done any research regarding efficacy of supplementing with Methylfolate for those of us who have a gene mutation and Vestibular Migraine? I have a mutation on A1298C. Two of my chn have similar mutations and their GP is treating them with Methylfolate which has helped reduce their migraine headaches. They do not have VM. I have just started taking it.
There is a suggested link between migraine and folate metabolism, but no documented link between MTHFR mutations and migraine. I will publish a blog in the next few days on this, but the link is here… http://www.ncbi.nlm.nih.gov/m/pubmed/25039261/?i=7&from=mthfr%20headache
See my new post about these genes and migraine to be published tomorrow
Thank you for initiating the survey!
I would love to see studies and research undertaken.
There seems to be a lot of misinformation out there regarding MAV,
And certainly a lot of sufferers seeking better understanding,
There are a lot of us on FB groups, a great collective tool for studies
I put my hand up to participate!
Thankyou