The Vestibular Migraine & Secondary Hydrops Community
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Advice


#1

Hello,
I came accross this site searching for suffers of vistibular migraines. My husband (26) has been suffering with many of the similar symptoms that many peiple here have described.
We have been to countless doctors including ENTS neurologists cardiologists and the general practitioners with no concrete answers. Except the last ENT suggested his symptoms are those of vistibular migraines.
My husband thinks that doctor is crazy and there is no way he is suffering from migraines. She prescribed nortriptylin. He is afraid to try any medications and even more terrified to try anything that has to do with anti-depressant.
He has been auffering for 3-r years. He has been unemployed much of that time due to his dibilating symptoms.
I am at my breaking point. Idm what to do. I feel like hes not even trying to get better which makea me less sympathetic and just not want to be around him. Please give me suggestions on things i can try to do to help him. Thank you.
His sympthoms are constant, just most days are worse than others. Here is a list of some symptoms:
Feeling weighed down, feeling of being pushed to one side, face numbness, leg numbness, dizziness (not necessarily spinning dizy), anxiety, depression, feeling of walking on a boat, heart palpitations, blurry vision, tunnel vision, ringing in ears.


#2

Hello and welcome! Many of the members of this forum live in the UK (where it is the middle of the night right now), so I’m sure you’ll hear from some of them tomorrow.

I’m sorry that your husband is suffering from this but glad that you found us.

Your husband’s reaction is similar to what many of us thought, too, the first time someone said “you probably have vestibular migraine.” I know I thought that was crazy. That’s because we all think of “migraine” as a headache.

Migraine is not just a headache. What they’ve found over the past 20 years is that migraine is a collection of symptoms that are all the result of some sort of neurological disturbance. (I don’t think anyone knows quite what that disturbance is, at least not yet.) Migraine can cause dizziness WITHOUT a headache. It can also cause visual disturbances, like squiggly lines in the field of vision, without a headache. There is even something called “abdominal migraine” which, again, can occur without a headache.

And what they are finding is that many drugs that affect the brain in some way work to help prevent migraine in many patients. Antidepressant-type medications sometimes work. In patients where they don’t work, anticonvulsant drugs can work. Sometimes even beta-blockers (usually used for heart conditions) can work.

Please tell your husband not to be afraid of the nortriptyline. Yes, it’s classified as an antidepressant, but it’s used for many other things and this is one of them. Many of the members here take either nortriptyline or a similar drug called amitriptyline.

Unfortunately, with neurological conditions that are defined only by symptoms (in other words, there is no “test” for vestibular migraine), the drug treatments are all trial-and-error. You try one, and if it doesn’t help after a period of time (usually a number of weeks), then you stop that drug and try one from a different class. Usually they start with a drug from the antidepressant class and if that doesn’t work they move on to the anticonvulsant class, and so on.

The dosages of most of these drugs are much lower for treating vestibular migraine than they are for treating other illnesses. The dosage of nortriptyline that they will give him, for example, is most likely going to be much lower than the dosage that would be given to someone if they were being treated for depression. And generally they start someone with a tiny dose and move up from there if the patient tolerates the tiny dose. So there’s not much risk in giving it a try.

Our moderator, James (@turnitaround) has created a welcome post and several of us contributed to the pages contained in that post. I suggest you start there:

Welcome to mvertigo!

There are two experts on vestibular migraine, Dr. Timothy Hain in the United States, and Dr. Surenthiran in the UK. Dr. Hain has an excellent website that he created for other doctors (and patients). Start on this page from Dr. Hain’s website:

Migraine Associated Vertigo (MAV) – and the subset called Vestibular Migraine (VM)
http://dizziness-and-balance.com/disorders/central/migraine/mav.html

Dr. Surenthiran is in the UK (London area, I believe) and many of the members here have seen him. Here is a thread where some members talked about him:

One thing we have ALL found is that there are only a handful of specialists who know and understand this condition, and it’s best to try to go to one of those specialists if it’s at all possible. Most other doctors don’t have a clue. (My primary care doctor said, “Vestibular migraine? What’s that? I’ve never heard of that,” when I told her that was what I had been diagnosed with.) If you can tell us where you are located we might be able to point you toward some specialists in your area.


#3

In addition to what @manatee said tunnel vision is not a good thing. Get opthamologist to rule out binocular vision and vertical heterophoria. They can cause same symptoms as vestibular migraine. Tunnel vision can also be simple migraine aura.

Dont get cross about my suggestion. Your husband should be in this forum as things can get lost in translation.


#4

Your hubby sounded alot like me before i got educated on this forum regarding the migraine and the antidepressants. Just like what manatee said, antidepressants are used for not only depression but many other things. I thought i would never be on one but i am and glad that i took the plunge because symptoms are more manageable.


#5

I had a similar reaction and turned out my condition was slightly more complicated.

Sure I was getting migraines but in my case they were caused by an injury to my inner ear (I have many ear symptoms eg sensation of fluid leaking, tinnitus, pain & pressure). The big clue was definite trauma.

I was initially diagnosed with MAV but subsequently with Secondary Hydrops, a condition with identical symptoms.

In any case the treatment is also the same and I did very well on a low dose of Amitriptyline (a relative of Nori). I found the drug really helpful and they are highly recommended. The side effects are minimal and easily worth the improvements they provide to your quality of life. There are other medications to try if Nori doesn’t work out.

If you are not satisfied with the diagnosis do consider additional opinions (though it seems you’ve had many already?) but my advice would be to try to follow the MAV treatment protocol (including the diet) in any case and see if things improve. This might really help to take all the pressure off the situation.

Out of interest did your husband suffer any head injuries especially to the side of the head in the few years prior to onset? A car accident?

It’s very important to make sure he’s getting out and about. I found long walks very helpful.

My wife has also struggled with my condition and it has impacted our relationship but the treatment really has made a positive difference and we live a relatively normal life now.

Your husband is more than welcome to join the board.


#6

Hi

Good morning. I’m UK based. Sorry to have to have to welcome you to this forum but you will find it a step forward. I really feel for you as the partner of a sufferer. I’ve had MAV for 15 years and since it became constant all day dizziness 3 years ago I’ve certainly suffered however my husband must have been through hell and back many times. Sometimes I’ve been envious but generally I don’t think I’d swop places with him. You can only make so many sympathetic faces in a day. I’m blessed with my partner. He’s brilliant and I am so lucky as is yours. You are obviously just as caring. Cos you are here, trying to sort it for him.

@getbetter’s right though, your husband needs to be doing this himself as things do get lost in translation. Unless his condition’s so bad he finds the screen intolerable, get him involved. Currently he’s obviously in denial. He needs to find a diagnosis he believes in to move forwards. Does he truly find it cant possibily be ‘migraine’. Why? Has he ever had a migraine. Get him to look at what was happening before this started. Any trauma, as @turnitaround mentions. @manatee’s written a brilliant summary, get him to read it, and follow the links etc. If, after all that reading, he’s still in doubt, suggest he tries to see a neuro-otologist. In UK just finding one could keep one occupied for days! However, even one of those, will do tests, ie MRI to eliminate the ‘nasties’ and give you a probable diagnosis. I’ve twice be given ‘probable’ MAV. I have also been told if I obtained a favourable reponse from the preventative drugs, then, in all probability (that word again) it was MAV I had! To get to that state however, you do have to bite the bullet and swallow ghe pills and a response takes time, often some months although I believe @turnitaround had a positive response to amitriptyline in four days.

Meanwhile, what ever he’s suffering from, there’s obviously a vestibular connection and the treatment for most overlaps quite considerably. Noritriptyline is a very old drug alot of people have had success with. Yes, it’s an antidepressant but at the low doses it’s used for with vestibular conditions is not working like that. It’s being used what the medics call ‘off label’. Doses used to treat depression are generally 10 times what he’s being given. Amitriptyline is the same class of drug and both my opticians wife and my brother take that in tiny doses for pain relief.

Fight the Good Fight, as they say. Good luck and Hang in There!


#7

Hey wife, welcome to the forum, although it’s unfortunate that you have had to come here. I live in the US, am about your husband’s age (29), so I can relate to a lot of whats going on with him. This is a long journey from what I’ve found, and if he hasn’t had a balance and hearing test I’d recommend he get one, from That I found that i also have a 40 percent loss in my left ear to my vestibular system and an undetermined amount on the right. There could be more going on than just the migraine. As to him, if hes anything like me he is going to have a lot of anger and grieving for his former self. He needs a lot of support during this time, and I’m sure your giving it to him. My long term girlfriend couldn’t deal with my condition and the limits it put on me and what I can do, and she left, that did not help the process. What hes going through mentally and emotionally is something that’s normal, especially coming from the age he is. He needs to keep some sort of activity in his life though, as hard as it is, and I can relate to him not working with these symptoms its sometimes nearly impossible. As I’ve been told many a time, you have to take it a day at a time, theres going to be a lot of ups and downs, more downs unfortunately. Find a good doctor and start trialing meds, and get a balance test done to make sure the make up of the ear is ok, like me and some others here, there could be something else going on that needs to be addressed other than MAV as well. Dont hesitate to contact me through direct message, or if your husband needs someone to talk to who understands how it is at his age dealing with this, I’d be happy to chat with him too