Relapse and increasing Amitriptyline

Are you seeing a Neuro or a Neuro-otologist?

I would be extremely wary of going down the Valium route …

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Valium according to my doctor is something one needs to get used to. She wasn’t surprised when I told her in my twenties and fit and healthy Two tiny Valium put me to sleep for 10 hours, so deep you could probably remove my tonsils and I wouldn’t have noticed. I was using the occurrence as an example of how med sensitive I was and she said she thought that quite normal for somebody not used to taking drugs. Valium, It’s a sedative. Used for anxiety. It’s a benzo and here in the U.K. extremely out of favour and rarely prescribed at all. I was given sone in hospital as a premed to surgery once and also offered two to take night before my MRI ‘to ensure I slept well’. Ever took them as I had to be on the road by 5.00am to make the appointment.

I’d be very concerned being that drowsy and dizzy. Not a good combination at all. Helen

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Yep, by putting the brain ‘to sleep’ with these drugs, you may be putting off dealing with the underlying issue.

The only way to solve this condition in the long run is for the brain to correlate all the incoming signals. Dizziness appears to be a sign it is struggling to do so.

You have to take just enough medication to support the brain in the process and no more.

Specialists also have to consider the role anxiety might be playing and if that is inhibiting things … and if there is any other ‘process’ which might be messing things up.

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And drowsy and dizzy equals a fall down the stairs. And a broken …? One needs ones best awareness with MAV.

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yes, creates a more immediate physical risk too, true.

Hey James

I see a neurologist- she is currently on leave now so I emailed her registrar and he said to take Aspirin or ibuprofen or sumatriptan. I have been having
neck pain along with the dizziness and vision problems, nausea, unsteadiness and ear pressure/head pressure all MAV symptoms.

I know the Amitriptyline probably hasn’t had a chance to work in 9 days so I’m still quite symptomatic I think I’m going to try the aspirin and see if it will help take any inflammation down.

Just feeling fed up :persevere:

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If you are based near one you might want to get an additional opinion from a Balance Centre, not just about diagnosis, but perhaps they might give you a new perspective on treatment.

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I think that’s not a bad idea James, although I have had a migraine diagnosis of the Basilar kind. Amitriptyline was working at 50mg but I think maybe a few factors have caused a flare up. Usually at 9 days I’m getting better but it’s probably not that I’m not getting better it’s more that the symptoms morph so much you never know how you’re going to feel one minute to the next m…

:roll_eyes:

Diagnoses are often just labels for collections of observed symptoms. Would not dwell or put too much store in those. They certainly don’t explain someone’s illness fully.

I’ve had basilar migraines from my MAV and the root cause of my MAV is somewhat unrelated to migraines. (could be ear trauma, could be stress & anxiety, combination of both, who knows?)

Focus on treatment - that’s where they might be able to change the game.

I do think James that you’re right about the root cause element of MAV - mine has almost definitely got to have an anxiety aspect, I’ve suffered with anxiety most of my life and experienced some trauma as a child which I think kicked it all off. It kind of stays and never goes away huh? Plus being a woman there is a strong hormonal link - my mother used to get migraines at the time of the month. Regular ones though, not like the ones we have.

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I think Helen & I are on same page here: don’t forget the impact of the shock of a relapse too, which can exacerbate things.

I remember going 6 months without an attack after starting Ami and I thought the Amitriptyline was the bomb (although disappointed it didn’t fix imbalance).

Then another bomb dropped.

Bit of a shock to realise it doesn’t protect you completely and it takes willpower not to get sucked into a vicious cycle of additional anxiety when you have a nasty relapse.

Your confidence takes a real hit and you begin questioning everything, including your treatment regime (but part of that is healthy).

Then recently, off meds for years I had a BPPV attack in bed after a visit to a dentist (obviously there is a physiological element to my MAV if not everyones). Took a lot of willpower to keep calm and let my body get back to being great again (which took weeks btw). It also took willpower not to jump back onto Amitriptyline. However whilst I had renewed neurological problems, none escalated to migraine, so I knew I needed to stay off meds and let my brain (and ear?) sort itself out. It worked.

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James you must be a very calm guy, I think anyone having a flare up would have reached for the Amitriptyline, especially as it worked so well before! You must have willpower of steel!

When you say you let your body rest and get better on it’s own we’re you house bound at this point? If so I echo the above statement! Did you keep telling yourself that you were getting better? Meditate? Helen @Onandon03 has given me some great relaxation tips as she knows I’m a bit of a worrier.

I hate the thought of weeks at home like this barely being able to do any task. It’s so devastating and of course that causes anxiety. I have been in touch with a psychotherapist to see if she can help me gain some control over my fears and anxiety. We just spoke today. She was really nice, I hope she can help.

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The relapse was uncomfortable but did not confine me to the house. Indeed I made a specific effort to go for a long walk every day of the worst part of the relapse.

I knew Amitriptyline would slow my recovery so it was an easy choice.

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Because It takes some getting used to?

Because it sends your brain to sleep, so it struggles to adapt.

People are misusing these drugs - they should not be leant on to eliminate all symptoms, they should be leant on to kill the migraines and anxiety.

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Oh, I get that sedate feeling with Ami too, I’ve only increased by 5mg do you think it could hinder my recovery? Neuro suggested it as I’d been doing so well for 18 months, I wasn’t symptom free but it’s was a joy to live again…

Even 10 mg will sedate the brain.

I came off and got from significant imbalance to zero vestibular symptoms without any medication in about 8 months if I recall correctly.

The one thing that facilitated me coming off was the lack of migraines and visual disturbance - if I’d not been able to use screens I would have stayed on them at some level. If i’d had one migraine I’d have stayed on them (real migraines, not brain ‘discomfort’ or any other symptom)

But if you can use screens and have no migraines, then imho no reason to stay on meds.

You should be at the absolute minimum dose you need in any case.

James did you ever use a painkiller when your migraines and dizziness were bad?

I haven’t really ever used an OTC medication because I didn’t used to experience true migraine until the chronic phase started. I wonder if for a short time the pain relief the neurologist suggested might be helpful - I am getting excruciating neck pain I have to say.

What you reckon?

Never used a pain killer as read about issues related to them. I just rode out headaches when they occurred.

After starting Amitriptyline I didn’t get one basilar migraine, which was a huge blessing. That said, haven’t had one since stopping Amitriptyline, so believe they were transitory.

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I’ve actually stopped drinking coffee 3 days ago to see if it helps, and currently except for a horrible headache every day, the rest of the symptoms seemed to have calmed down a bit. Trying to avoid taking painkillers currently unless I really have to. Hoping to get an answer from my neuro regarding the Ami dose, I felt better on 25mg and seemingly worse now on 35mg for about a month.

As James said, unfortunately I have not felt that Ami helps with the day-to-day dizziness and bad eye correlation, wondering what might help with that.

Regarding neck pain, this was actually one of the first symptoms I had a few years ago. My GP at the time thought the neck pain was the cause of the dizziness, but after trying to treat the neck (acupuncture, pills, etc) didn’t work, I saw other doctors and finally a few months ago got the diagnosis for MAV.
I can say that I do get neck pains from time to time but part of my treatment is 3 times a day of 30-minutes TENS machine on the back of my neck which seems to significantly help with neck pains, maybe you should try it?

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