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New to this forum and of course looking for some answers


#1

Hello,
I am very new to this forum and of course looking for some answers as well. I have periodic attacks that are called “silent migraines” as per my neurologist at Cornell. The definition means that I have all the symptoms of a very serious migraine attack without the headache pain. However unlike my true migraines I get the all the horrible symptoms. Here it goes… the first symptom is visual aura it feels as thought there is movement in my Peripheral vision, next my sense of smell becomes very acute and this leads to the perception of very foul smells then nausea and unfortunately sometimes vomiting. But the worst is the equilibrium imbalance and feeling of light headness/dizziness. These episodes last 3-4 days and then start subsiding. Once the episode is gone I feel as though nothing had ever happened. Mentally I’m devastated of course and can’t help thinking about when the next attack is going to come. There is still no diagnoses other than silent migraine… I read about it on diff sites and yes the symptoms do concur. I went to two great neurologists who have ruled out , meniers, bppv, hearing loss and vestibular inefficiencies I have had a head mri and EEG and ENG.
I am hopeful and hopeless at the same time. My NYU neurologist who has been in practice for over 35 years said my symptoms are intresting, I don’t want to be intresting I want to be diagnosed. I have been reading so much and some of you have some symptoms and not others. Intrestingly enough everytime I have an episode it always feels like it’s my first time and I can’t cope with it this time. Someone please help !


The Manatee Diaries
#2

Hi

Welcome to the site.

You may find this strange to read but, from where I sit reading your post, I’d say ‘Wow, you are so very lucky’. I say this because you fell ill, you saw an appropriate specialist who is very experienced, and, quickly, got a diagnosis, ‘Silent Migraine’ - that’s it, you’ve got a diagnosis. I’d say ‘Brilliant’. Now I tell you why I said that. I was much like you (and that’s surprising cos plp’s symptoms do vary considerably), but no my attacks were just like yours. Mine lasted 72 hours almost guaranteed, and included room spinning vertigo, no headaches, and, for twelve years, I had no diagnosis and therefore no treatment, and loads of attacks then, in 2014 another attack hit me, all the usual symptoms constant vertigo, photophobia, nausea etc but it didn’t go away. It just went on and on and months turned into years before I saw a neuro-otologist and got a diagnosis of ‘probable MAV’ in 2015. So, if I can say so and I know at this minute it will seem crazy to you, you are actually in a reasonably good position. You had obtained what seems to be a creditable diagnosis before the condition became too entrenched so you should now be able to move forwards. Actually there’s an added ‘bonus’ for you here, the neurologist found you ‘interesting’. That’s great. Play on that. Use it to your advantage. If you’re an interesting specimen, they are much more likely to help you control it. I was told the exact opposite, the neuro-oto I saw has no interest in migraine and told me not to come back, he couldn’t help me further beyond diagnosis so I had to try for migraine specialist neurologist instead.

What treatment has so far been suggested. I would imagine you’d be starting on a migraine preventative to reduce the attacks together with lifestyle and diet maybe. I’m sure you’ll find something which will help quite quickly so you won’t need to worry so much - anxiety is another enemy if MAV sufferers. I’m sure you will find your path easier than mine simply because you are still at the episodic atrack stage and your system is still able to reset itself. I’m convinced chronic MAV is much more resistant to treatment than episodic so do jump on it now and nip it in the bud. All the best with the journey. You’ll find plenty of info on the Welcome section and plenty of support on mvertigo.org generally, meanwhile do try not to panic about when it’s going to happen again. Unfortunately that won’t stop it and in fact could make it more likely. I know it’s hard to do but try to keep busy and not think too much about it. Might be idea to keep a diary noting foods, environments etc to see if you can establish patterns/triggers and also note down in detail one typical attack for future reference, sometimes that can be quite reassuring and remember you survived last time, you’ll do it again, honest. Hard, I know but true. Helen


#3

Welcome! I think a good first step would be to try the John Hopkins migraine diet for a couple months. Some people resolve migraines on diet alone.


#4

Hi Anna,

interesting you are on Pristiq. I am on a sister drug to Pristiq called Venlaflaxine. Pristiq should we working for your migraine/MAV/dizziness ?


#5

Hello.
Yes I am on 50mg Pristiq and 200 lamictal however I am on these two meds because about 8 years ago I started getting very random panic attacks that would last for hours and almost always end up in an ER. Since then I was given klonopin for an acute panic attack plus these two meds on a daily basis.


#6

Hi Anna,

Did dizziness trigger the panic attacks or they were anxiety triggered panic attacks…sorry to ask but i suffered panic attacks initially triggered by the dizzy symptoms. Pristiq should work for VM/MAV as well, you can consider going up in dose to help the silent migraine symptoms.

cut and paste from https://www.dizziness-and-balance.com/disorders/central/migraine/treatments/venlafaxine.html
Pristiq (desvenlafaxine) for migraine

A close relative of Venlafaxine is " Pristiq ". The generic name is desvenlafaxine, discussed extensively above under the metabolism section. This drug can be substituted for venlafaxine, and is associated with less interactions with other drugs as well as a more predictable response. We suspect that desvenlafaxine has more “norepinephrine” type side effects than does venlafaxine, because it has a higher affinity for the norepinephrine transporter. Desvenlafaxine is the active metabolite of Venlafaxine – the conversion occurs in the liver through CYP2D6. The bioavailability of Pristiq is higher than venlafaxine, after you factor in the metabolism. Thus, the starting dose of Pristiq (50 mg) is FAR higher than the starting dose of Venlafaxine that we recommend (12.5). For this reason we generally switch to Pristiq only if venlafaxine fails at a lower dose. Logically however, just increasing venlafaxine might work as well.

We have had a few patients complain of withdrawal. This makes sense as withdrawal is dose dependent with venlafaxine, and 50 mg of pristiq has more “active ingredient” than 37.5 of venlafaxine. We simply do not believe the suggestions made that pristiq has no withdrawal syndrome.

Pristiq is available only as a brand name drug, and unfortunately, only as a tablet rather than the simpler capsule with beads. This means that Pristiq cannot be “split” so that people can gradually ramp it up. Another reason not to use Pristiq. We will probably have to wait till the generic comes out, as the “bead” technology of venlafaxine would seem perfectly suitable to Pristiq too – they just chose an unfortunate delivery method.

The bottom line for Pristiq is that we think it should be reserved as a fallback for venlafaxine, mainly for individuals who don’t respond, or perhaps in people who are taking many other medications that potentially interact with the P-450 system and reduce conversion of venlafaxine into its more potent cousin, desvenlafaxine. It costs far more than venlafaxine, it probably has more side effects due to the increased affinity for norepinephrine, and it cannot be “split”.


#7

Thank you so much for the information you attached I will show this to my dr next visit.
Please ask anything you’d like, I am here to help and hope that if anyone who has been diagnosed with silent migraines or a migraine equivelant will respond with some helpful tips and also let me know if they experience dizziness, acute smells, Nausea, vomiting and most importantly the episode lasting 3-5 days at a time. My panic attacks came at times that they were least expected for example I can be watching a great show or having tea with a friend and suddenly I would experience tunnel vision, nausea, palpitations and inability to breathe. I tried many types of cognitive therapy and still nothing worked so I gave in and started taking the klonopin as soon as an attack would start and that saved my life. As a preventative my psychiatrist put me on Pexeva and Lamictal. After about 5 years the Pexeva stopped working and I started getting a lot of serious anxiety but not as severe as the panic attacks at which point my dr switched the Pexeva to Pristiq. I have had migraines since I was a child and would miss school at least once month. As an adult (I’m 41) I never really paid attention but as the migraines became intolerable I still didn’t see a neuro. I know it’s pathetic to say but I rather have a migraine everyday then have these “silent migraine” attacks with all the other symptoms sporadically. And of course I wonder if it is a silent migraine or something else that nobody can explain. I can’t tolerate tripto’s so I can’t prevent migraines and the silent ones come without warning so they can’t be prevented either. Hopeful and Hopeless at the same time.


#8

Try not to let yourself get into ‘Hopeless’ mode. It’s all too easy with MAV. It’s not hopeless but it can be long gruelling path. I’ve been on it for 15 years so I‘ve a good idea. If I’d had a choice I’d never have developed MAV either. It’s a real pain, all round. Please don’t persuade yourself ‘silent migraine’ comes on without warning ‘so they can’t be prevented’. Mine are just like yours, acute attacks with no headaches and I would just wake up in the morning with it going full blast. Migraine preventatives will reduce their frequency, duration and intensity eventually even if it does not eliminate them completely. Just need to find a tolerable drug and take sufficient of it for long enough - many months in some cases. It will work. It is not ‘Hopeless’. Believe me. Helen


#9

Hi Helen,
Thank you for your positivity.
How often do you get your attacks and how long do they last?


#10

For about a decade I had totally self contained and completely debilitating attacks that lasted 72 hours. They would start on waking and stop equally abruptly. Only symptom then might be difficulty turning over in bed. At one point had to retrain myself to be able to lie on my right side again. I kept no written records so cannot be absolutely sure but I’d say never more than three attacks a year and virtually always between end August to February time. Then, next decade, started to get breakthrough symptoms indicating balance system struggling. Not that I knew that at the time but it was, then attacks got longer in duration, up to 8 days and nights, and took longer to settle. Then, in December 2014 the day after a pre-Christmas meal with my Tai Chi group I had another long, week long one, and some symptoms never left, I was left 24/7 dizzy, light sensitive, constant feeling of nausea etc. Doctor diagnosed Anxiety and prescribed Citalopram which I refused to take. I then embarked on extensive programme of VRT, as per suggestion of an ENT consultant I’d seen 18 months before. This went on for roughly six months. I continued to feel worse and worse and in August 2015 the attacks really ramped up another gear, and I was having 8 day attacks, with just a few days between each one giving no time to recover. I then saw a neuro-otologist in October 2015 and he diagnosed ‘Probable MAV’, and suggested preventatives. First I’d ever heard of such a thing. Up to this point I’d had no medication except Buccastem. My GP gave me Propranolol. It wasn’t until I saw a migraine specialist neurologist in February 2017 who got me to a higher dose that I really began to see real improvement.

The experts reckon preventatives a success if they reduce frequency, severity and duration of attacks by 50% which came as a surprise to me but most people do alot better on them than that. As Propranolol is one of the slowest working preventatives and I’ve only been on this high dose about 18 months, it’s too early for me to quote figures and anyway everyone’s different and lots of other variables come into play no doubt, but overall I’ve been doing OK. It is possible to control ‘silent migraines’. Helen


#11

I’ve been dealing with the same symptoms you are describing, but I also have extreme sound sensitivity along with everything else. I have been to physical therapy for months, seen an ENT. The ENT couldn’t figure out what was causing my almost constant dizziness, so he said it was cervicogenic. I also have TMJ which exacerbates my symptoms. After a bad bout a few weeks ago, I realized all of my symptoms minus a headache matched up perfectly with vestibular migraine or MAV, most importantly food triggers. I have an appointment with a neurotologist next month. I have no thyroid or ovaries. My TSH has been extremely low for months. They lowered my synthroid dosage last month which initially made me feel worse. I started HRT a few weeks ago and started feeling better almost immediately.(I was experiencing a great deal of fatigue, anxiety, and nausea before starting HRT). I am still having symptoms/attacks, however, and I think stormy weather and certain foods are my triggers. MSG in any form seems to be my biggest trigger and it is in so many foods, particularly packaged foods and restaurant food. My current bout was triggered by Chick Fila and a rainstorm. Could your silent migraine be related to hormonal factors like I believe mine is?


#12

You can read this for more triggers…hormones is certainly a trigger


#13

Thanks for that post. Very informative and interesting. Describes the myriad symptoms well.