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Vestibular migraine 24/7

My son has a medical condition of VM .
The maigrane is 24/ 7 and so is the imbalance …

One of the symptoms we are concerned is about my son samirs eyes being shut all the time .the moment he keeps his eyes open ,his miagrane starts…When he opens his eyes ,vision is shaky and gets an immediate headache
Morning to night constant pain ,imbalance ,no respite and generally incapacitated .walking or standing also gives massive headaches .
The MRI was taken which is normal
My son cannot type ,use laptop nor g.his cell phone so i am writing on his behalf
is taking velnflexine and flurnazin for last 10 days .under guidance of a Nerologist
Hope to get some inputs
Stay safe
Farida

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Hi Farida

Sorry to hear about your son’s illness. He is obviously very poorly at present. Not wishing yo make you more worried I must say that it’s a horrid condition to experience but his symptoms sound quite typical. This can happen and unfortunately can sometimes last for some time. I expect he is experiencing constant violent room spinning vertigo each time he tries to open his eyes. That would be why he says his vision is shaky. I have experienced that myself many times. These vestibular attacks if he has been told he has Vestibular Migraine can often last up to 72 hours sometimes longer. And sometimes the attacks become back-to-back with little respite between.

As he has been prescribed both Venlafaxine and Flunarizine I can only suppose he has seen a specialist. If that’s the case he has had a diagnosis and been prescribed preventatives which mean he is in the best hands and most likely to begin to show some signs of improvement quite soon. As your introduction was so brief I’ve no way of knowing what information you have already been given but you need to bear in mind these drugs are designed to prevent future attacks. They will not stop his current attack. Ask your own doctor for some painkilling abortive remedy which he can take now in addition to the Venlafaxine and Flunarizine. If you have no medical access speak to a pharmacist about Over The Counter migraine relief medication you can buy. Failing all else you could try getting him yo take Soluable Aspirin. Once he can get some control over the head pain the vertigo - shaky Vision - may well stop and he will be able to keep his eyes open again. I well remember sitting/lying with both eyes closed about three full days with each attack. Once diagnosed I was prescribed a preventative medicine and it was then several years until I had another attack. So there is hope, plenty of hope. Try not to worry too much. Him keeping his eyes closed is just his best way currently to avoid the horrendous symptoms he’s suffering.

Hope the attached might help. Feel free to come back with further questions and don’t worry. We do have parents on here researching on behalf of suffering children and vice versa. We are all quite happy to help all in difficulty.
Southern Pain Society Migraine Guide

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So sorry to hear what your son is going through.

Everyone on this site is different, and has different symptoms, though we mostly have the same diagnosis! But your son’s symptoms do sound quite typical.

It’s so difficult to give advice, and again we’re all different, so what works for one person might not work for another. Obviously he’s already doing medications.

The things that have helped me are really small, for example powdered ginger spice. Research has shown that ginger can be more effective in migraine treatment than medications. I have a ginger tea (literally 1/2 a teaspoon of ginger with hot water) every day, and it really helps.

Another thing a lot of us take is a magnesium supplement. Also taking a walk in nature… obviously at the moment it’s difficult for your son to walk… but in the future, when he can, he’ll want to get some exercise, get his body moving again. There’s obviously been a huge disruption to his balance function, and his body needs at some point to start moving again so it can re-learn how to be upright and stable. It sounds like his eyes are currently carrying the weight of his balance-function, hence they become easily overwhelmed (“visual dependence”/“visual vertigo”).

I think with VM, the brain/central nervous system - for whatever reason - has tensed up, gone into high alert and become hyper-sensitive to everything. It needs somehow to calm down, release the tension and return to normal, which is a long, slow process.

It’s all very unpleasant, but he’ll get through it and be happy again in the future. Stay positive!

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Thanks for responding .yes it is true that maigrane is painful and we are under the guidance of a good Neurologist .
What i do not understand why there is 24 /7 migrane .
My son has been taking venilor xr37.5 for past 4 weeks but no respite .
Any inputs on this will be appreciated .
Farida

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Nobody in the medical world does either. It’s not been sufficiently researched. In fact it may not even be true migraine for some people in whose cases the migraine is just one of its many symptoms. All very complex so don’t worry. You are not alone. So far there’s only theories, no facts to support the many hypotheses.

Preventatives can take four months to start working I’m afraid and sometimes a person has to try several different ones before they find one that does work. Pizotifen is often used for young people but hasn’t available worldwide though countries often have a similar drug to try in its place. Ask about it next time you consult.

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Yes whats difficult is the dizziness imbalanced rocking swayibg internal shaking is all day long.
EVEN LYING DOWN THE SYMPTOMS ARE SAME
in fact during the day he has s respite for barely 2 hours thru the day .
We are seeing some impact of venafĺlyxine and now we will double the doze .does as per the doctors advice .
Was interested toknow if any one has success stories with this drug venaflexine or f/and luranazine.

Thanks

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Yes, unfortunately when one is chronic with vestibular migraine the symptoms do present themselves 24/7 oftentimes. They did for me. It didn’t matter whether I was standing, sitting, laying, eyes open, eyes closed… no relief came no matter what I did. This is the common story for most of us I’m so sorry to say.

The relief only came when time, patience, supplements, diet, lifestyle changes and (for me) the right medication… and more time. You will find many references to the medications using the search function of the site. My guess is you will find positive results for some and negative results for others, it’s just the nature of this disorder and how each of us handle medications differently.

How old is your son?

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Sorry to hear about your son. I had migraine 24/7 with dizziness that got better when I closed my eyes and started the moment I woke up. I’ve been able to get better fortunately.

One of my triggers is light (hence the eyes opening), the main issue for me is LED lights, florescent lights and stormy/cloudy days. Venlafaxine has helped me greatly, I am on a high dose and have used some other anti-migraine medicaitons that are helping me. I also found a lot of dietary triggers I had to remove that has made my life a lot better to.

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Thanks for the response .my son is 36 years old .ghe too finds his vosionn shaky , and internal body shaking
So he prefers to shut his eyes .i wonder if there is any remedy for this .
What are the anti migrane meds you took

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Try Amitriptyline in first instance imho but always take doctors advice.

Has he had any head or ear trauma in past year?

A lot of prolonged stress?

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Thanks for your response .he had this condition in a mild form 3 years back and he managed it well .
Yes he did have a prolonged stress related to his business finances due to the Covid pandemic .
His MRI and other nerve tests ate normal .
He also quit smoking all of a sudden in january .from 12 cigarettes a day he was down to none .
This may have had some impact .
Farida

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Samir my son is on venaflexine 37.5 and flurazine and has been told to double the dose .
What are the dilatory maigrane triggers and what are the drugs ypu took yook
.

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Sounds like stress. There’s no clinical MRI accurate enough to see the required level of detail. It just rules out cancer (which is great!)

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Sorry to hear about your son, it’s an awful condition but things will improve with time and meds. The 24/7 happens I think when it’s chronic and I was in that phase for a couple of years until the meds were introduced. One of my meds is 150mg venlafaxine and its been great for the visual symptoms eg shaky eyes and for nerve pain. I take propranolol and ajovy too. In terms of triggers, stress and hormones are mine.

If your son can get his head into a place of acceptance just for now, it might help him settle in a little to trying to live with this condition and tolerate the whole trial and error process that surrounds meds. I found when I was fighting it it drove up my anxiety and stress levels and sure that’s the worse thing for this condition.

I’ve been lucky and with time and meds I’ve greatly improved. Your son will heal, sending you all healing wishes. Take care

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Hi Farida,
as James mentioned also adding had great success with, Amitriptyline is the medication I used that took me from chronic to having a normal life again. I have since switched due to weight gain but if I became chronic again, I’d go right back on Amitriptyline immediately. It was truly a lifesaver for me.

I heartily agree with @nin on all points she mentioned. His mental health right now is as important to his healing as the physical aspect. The brain is a slow healer, this is something we all had to come to terms with… but he will improve!

Please let him know he’s not alone. I remember feeling so desolate and like I had to be the only one in the world who felt this way. Thank God I found this forum and realized I was not alone in this! :sparkling_heart:

Thankypu .yes its true that samir is not alone .now that he hears your experiences , he feels motivated totake the meds .
Samir now is doubling the venaflexine dose to 75 and flurazin to 10mg

The med you have suggested will be added a little later in consultation with the doc
. once we see the impact of venaflexcine we find this drug very useful…
IN CASE Y HAVE ANY SUCCESS STORIES OR OTHER POSTÌS WE CAN REFER TO DO LET US KNOW .
FARIDA

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Farida we file all our success stories here #success-stories-positivity (so let’s not duplicate any here)

Note that most people make significant progress within one year: POLL: Are you getting better? But recovery can take much longer.

The first 6 months of this condition were one of the worst experiences of my life, but it shouldn’t remain like that. The body has its way of sorting things out given time.

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