Help Needed! What is wrong with my husband?

I’m very med sensitive as many migraine sufferers are. Hence my 5 attempts to get something I could tolerate. I triedboth Amytriptyline and its close cousin Nortriptyline as here in the UK they are most often prescribed as first line migraine preventatives.

Even on very low doses unfortunately both gave me the shakes and a very rapid pulse. Yet I’m on 112.5mg of Venlafaxine, which I titrated upto very gradually, and the side effects have been minimal, much to my surprise. A bit of nausea is probably the worst. Yet I’ve now been migraine free since I started in January. The thing with VM or MAV is that drugs are very individual and side effects vary greatly.

Often side effects are worse when commencing a new medication or when you increase it. Once we become used to it then side effects often fade. Many of us are understandably reluctant to take antidepressants, blood pressure tablets or antiepileptics, but fear of side effects can often be worse than the reality.

And honestly the constant trampoline floor, light sensitivity, head pressure and imbalance was intolerable. I felt like all the joy had gone from my life, it wasnt a life I wanted. I’m glad I overcame my reservations and tried Venlafaxine.

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holy cow that’s huge. can’t lie – im jealous but so happy for you. my migraines are so complex and temperamental i feel like i can only turn the probability knob of them occurring

Wow! That’s great!! I’m so thankful for all the info and advice. We are going to call the neuro on Monday and get something started. Hopefully anyone that is going through this gets an answer. I know I’m not the one having all the pain but it’s honestly to say the least he isn’t alone in this condition. I just want to do everything I can to help him have a normal life again.

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I was diagnosed with an underactive thyroid in June 2020 and although I’ve had migraines since I was a teen, they were pretty sporadic. I could go for a long time between migraines. Whether my underactive thyroid caused the migraines or it was the medication I needed to take is the old chicken and egg scenario.

All I know is my migraines were back with a vengeance, I was getting them very frequently, always with aura. I probably had more migraines in the last 3 years than in my previous 50. I was averaging 2 a week or so. Then they morphed into constant 24/7 imbalance, with visual vertigo and all the other delightful symptoms we are all too familiar with.

Since starting on Ven the migraines have gone. The first week in January I started on 12.5 mg of extended release and had 2 migraines that week,but since then no auras, no zig zag lines, no piercing headache.

And slowly my balance is recovering, the visual vertigo has subsided, I’m managing much better in supermarkets, which used to be horrendous. I’m still getting the trampoline floor at times, but its happening later in the day, probably due to fatigue or sensory overload, whereas before it was pretty much all day everyday. I’m not claiming I’m cured or I’m 100% or as I was, but compared to this time last year I’m greatly improved. I’m not obsessing about my symptoms or anticipating the spongy floor, or dreading going into shops.

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Of course you do, my husband has migraines too, since he was a child. Until I got the VM I would have said he suffered far more than I did, but I’ve had a year of near 24/7 balance issues and visual vertigo so I reckon I’ve evened up the score lol. Its very hard to see someone you love suffer and not be able to help. Really hope you can find something to help him.

It seems like the Ven did the trick for me in that respect, yet Ami and Nort made my migraines worse. I felt like my head was so pressured when on them, like someone was pushing down on my cranium. The neck pain was bad as well. I’m hoping that with time my balance will return to normal. Its improved a lot tbf.

I greatly appreciate it. It’s nice to talk to a person who is going through what he is and he doesn’t feel alone about it. It is a debilitating condition. How did you deal with the 24/7 vertigo? That’s unbelievable.

Let’s be careful about terms. Vertigo is distinct from dizziness and imbalance. These are three different symptoms (albeit all vestibular).

There’s:

  • dizziness (fuzzy unsure feeling)
  • imbalance (a feeling of being lopsided, at a slant, heavier on one side)
  • vertigo, a hallucination of movement when there is no corresponding movement eg falling or even spinning.

I don’t think 24/7 vertigo is “usual”. The 24//7 dizziness is often brought under control early on by meds. The 24/7 imbalance can take a long time to resolve (3.5 years personally!)

I found the vertigo was always short-lived and sometimes position dependent but very rarely 24/7. Are you saying your husband feels like he’s falling or spinning 24/7?

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Just to add to what Turnitaround has already said I never had vertigo in the sense of spinning either of myself or my surroundings, my husband had Labrynthitis and could barely move as he was so nauseous and incapcitated. He had to cling on to furniture to get to the loo. I’ve thankfully never had that.

Mine is feeling like the floor is spongy, marshmallow or trampoline floor is the common term. I notice mine particularly if I’ve been standing for a while or if I’m moving or walking. I’m better sitting or laying down. In the early days, even when sitting I felt like I was being pushed off to the side. Very disconcerting. I also get a heavy head sensation like my neck can’t support my head and pressure and stiffness in the back of my neck.

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His is actual vertigo. He gets to the point where the room is spinning and he can’t tell what is up, down, left, or right. It last for a good 20 min or so has lasted longer, it even has waken him out of his sleep.

20 mins is “normal”. Especially when reclined.

So what’s the 24/7 vestibular symptom?

He’s had head pain and pressure since Dec. Neck pain and muscular pain as well in his neck. He said it almost feels like some of the pain is in his upper spine. When he gets the bouts of vertigo the pain worsens. His vision pulsates to his heartbeat as well.

You are a great wife. I hope your husband finally regains his health and strength. I think you should see an otoneurologist. I hope he can help.

He is seeing one but they want to do gentimicine shots but if it’s not the ear itself and it is a migraine issue then he would be losing his hearing all together. It’s like a lose lose situation.

Ouch, no no no!

This is not advocated in the UK and it is irreversible.

With this kind of complex, uncertain situation you need to be extremely careful, patient and conservative.

Gentamicin treatment is a bit like having a floor collapse so you blow up the house.

Gentamicin guarantees you will always have dodgy balance, so what is the point?

From the features you are telling us how can they be sure it is Meniere’s?

Has he had a suitable hi resolution MRI to prove there is hydrops? And has this been done several times to determine if there is a change to the level of hydrops?

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I will ask I know he has had an MRI done of the inner ear. But I have never heard of hydrops.

then you should stay far away from gentamicin until you are fully educated in this space.

(endolymphatic) hydrops is one of the underlying pathologies of Meniere’s (and potentially VM/MAV too btw as there has been shown to be some association in some individuals).

If you can’t prove he has hydrops, then there’s absolutely no justification for him to have a gentamicin shot which could permanently destroy his balance.

And in any case there’s no proof hydrops is not spontaneously reversible (even if it takes years to do so).

It’s far better to control symptoms and look forward to learning to live with any changes in the inner ear. The neurological symptoms will dissipate as you compensate.

The dramatic, highly fluctuating and seemingly endless neurological fallout of ear conditions can drive people to take short-cuts, but it is far better to take the longer road imho.

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It appears Gentamicin is considered in the US according to Hain … as Last Resort, see: Meniere's Last Resort (this is a very useful and informative website so take a look around there’s loads of info).

But really, you surely have to exhaust everything else first and please learn all the implications here.

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I will ask I know he has had an MRI done of the inner ear. But I have never heard of hydrops. He said today he feels worse than before More like just a general feeling. Dizzy like he’s right about to have an attack. Also very fatigued. He says he gets out of breath and his heart rate rises drastically. Just walking in and out of the house. Standing up hurts.

Here are some of his questions? I have to copy paste since he just talks in his watch and send them to me since he can’t look at a screen for a long period of time.

Have any of them said anything about hearing loss, tinnitus or fullness in the ear? Any ear pain?

I’ve had several firearms go off and that ear. As well as some head trauma in the Air Force. It’s not impossible that the two things are unrelated. But if they detected a loss in my vestibular system, it seems like that would definitely be a cause of the vertigo. I’ve had several fire arms go off in that ear. As well as some head trauma in the Air Force. It’s not impossible that the two things are unrelated. But if they detected a loss in my vestibular system, it seems like that would definitely be a cause of the vertigo.

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