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Relapse and increasing Amitriptyline

Hi everyone

Hoping for some advice, I’m currently in relapse and appear to have been getting very slightly better the last few days (I mean very slightly) I increased my Amitriptyline as per neuros advice only by 5mg 4 days ago and today I seem quite a bit dizzier. I’ve called neuros office to see if they can give me a call for some reassurance that it will pass but waiting is making me so anxious.

I’m not really able to do anything at the moment because as soon as I move my head I’m really dizzy again. I know the Amitriptyline is doing something because I have had a few side effects within the last few days.

Any advice is great :+1:

Hey, not much of an advice unfortunately, but I understand what you’re going through. I’ve been feeling the same currently, so would be good to get some answers.
I’ve increased from 25mg of Ami to 35mg about a month ago, and since then I’ve had 2 full-blown vertigo attacks and daily dizziness, difficulty focusing my eyes on anything and even headaches sometimes.
I also tried contacting my neuro and haven’t received any reply yet unfortunately.
I will say that on 25mg things were pretty good for a couple of months, so I’m definitely thinking that the increase in dosage is the cause. Guess I’ll have to wait for my neuro’s reply…

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I agree with Jonathan, an increase can sometimes help. Unfortunately, this does not work on everybody.

Hi Johnathan

So sorry to read you’re going through the mill too! :pensive: are you currently resting up a lot? I think that’s the key, it’s so uncomfortable doing any task when you’re symptoms are so very pronounced. I think increasing your Amitriptyline is a great idea providing you tolerate it well?

I’m on 50mg but I only titrate at 5mg each dose because of the side effects. I find that works best for me. Definitely try to get in touch with your neuro. Some advice I just got from mine is that I can go up in 10mg increments upto 100mg if necessary. Great to know that there is a lot of wiggle room for sure. I think your Neuro will probably suggest going up a little more but yes wait for a response.

Hope you’re not feeling too bad today!

:relieved:

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Hey!
Since I have to work (new baby in the house in the everything :slight_smile: ) I can’t really rest up a lot. But after an attack I usually take a couple of days sick leave, and in Covid times it’s pretty easy to work from home so I do that also.

Regarding the Ami, a couple of weeks ago I actually wound up in the ER after what was the strongest and longest vertigo attack I’ve ever had, and they suggested to go up to 50mg, but the next day I went to see my neuro and he said that since I’ve only been on 35mg for a few weeks, he suggests to wait a few more weeks before going up to 50mg. I spoke to my neuro’s receptionist and she says he’s out of the country in some convention, so I emailed him and I hope he replies.
I also understood that we could go up to 100mg, and if that doesn’t work we’ll need to try another medication. Hopefully we won’t get there :slight_smile:
I’ve also been taking 400mg of B2 for a few weeks, but haven’t noticed any change yet.

Hope you’re having a better time!

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Hi Johnathan

Yeah it does sound like you may need a slight increase. Interestingly enough I just spoke with a Gp about prescribing me more Cinnarizine for motion sickness and I asked him how long does Amitriptyline take to work for migraine. His answer was immediately it only takes time if it’s used for antidepressant qualities. This is not what common knowledge reflects or that of my neurologist. He also said it’s probably caused by my neck being stiff and I should do some head manoeuvres ( I thought is he kidding?! I’ve just told him I can’t sleep at night because I’m too dizzy with any movement!) seriously, GPs are too quick to answer questions when they don’t really know enough about the condition. :roll_eyes:

Thanks, today I’m hoping for another small little change as I’m now 7 days in on 5mg Amitriptyline increase, my eye sight is much better and they’re correlating more so that’s some progress, I’m also walking a little more stable (at times) but resting as much as possible because it doesn’t take much to make me feel sick and dizzy. Ear pressure is another frequent visitor the last few days :smirk:

How are you feeling today?

By his answer I would suspect he’s referring to using Ami as an abortive. Not from what I gather a common usage. @flutters has done/does? This I remember her saying so, you got to remember Ami is commonly used off label to treat chronic pain (arthritis, nerve pain etc not just migraine) and from what my opticians wife said when she had it it took about 20 minutes and was most effective. People with MAV are generally in an ongoing heightened state of hypersensitivity where nerve pathways are opened for long periods of time. It’s that that takes the controlling. Without doubt shorter duration pain is more responsive.

Unless the stiff neck was the first symptom to appear I would lay money it’s the other way around. The brain is causing the head to be stationery to avoid receiving false signals and that’s what makes the neck stiff.

When it comes to doing much by way of head manoeuvres when totally acute, he ain’t got a clue but then I’ve only been suffering this for 18 years and he’s the doctor.

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My stomach churned when he said that Helen, It’s not the first time I’ve been told by medics and Chiropractors about manoeuvres. It’s ok I guess if you’ve never dealt with the kind of dizziness we experience but right now? Not a chance

Although he said about Amitriptyline working quickly I think it is and has helped my eyes to correlate more for sure, the dizziness is still there when I get off the sofa to negotiate the corner or any turns but it does seem fractionally better. It’s even there when I’m still like I’ve experienced before and if I’m asleep in bed and turn over… :nauseated_face::nauseated_face::nauseated_face: I meditated again this morning I think it’s doing my anxiety some good. I am optimistic that things are looking better but also the lack of sleep due to waking up dizzy is playing my mood right up. I can see some kind of end in sight today at least. 7 days in :smiling_face_with_three_hearts:

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Yes, I use ami as an abortive. Actually I’ve been migraining since the moment the drunk totaled my daughter’s car on the 6th. Thanks for the reminder. I’m maxed on Ubrelvy but can still take ami.

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Interesting. What dose do you take as an abortive?
I’ve never read that before. All I know is I’m starting to feeling a little better and the Ami and cinnarizine are currently my friend :sparkling_heart:

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What’s cinnarizine? Sounds like a pastry.

Just 10 mg ami. It spikes my blood sugar so I keep to a low dose.

I hope you feel better soon. Weren’t you on Botox or am I remembering it wrong? Botox has pretty much failed this round. Not sure if it’s Botox’s fault as I’ve had some massive stress of late.

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Cinnarizine is a motion sickness tablet, just helps me feel a little sedate too.

Yes I’m 5 weeks in with Botox now but it’s failed to stop a relapse this time round. Similarly I have had some stress issues recently too. It’s probably cumulative for us?

My Gp mentioned today that the Gaviscon (drink for stomach acid, heartburn) shouldn’t be taken anywhere near the time that you take any tablets as it can stop them from being absorbed properly and so I’m thinking maybe the Ami hasn’t been able to be absorbed properly. I swig that daily for GERD symptoms.

Maybe I haven’t been absorbing the Ami properly, the recent stress and having I cup of caffeine a day is just too much all at once. :sparkling_heart:

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Insane, isn’t it?

Cinnarazine is an Hi antihistamine. Not available in US or Canada. Cinnarazine makes me SO very dizzy. Pure dizziness, not vertigo. A very well meaning male staff nurse gave me some once following an op. Once was enough. Pure dizziness like the very very dizzy, I’m about to spin right up into unconsciousness type dizzy from that Cinnarazine. Btw I was still episodic when I had that and in hospital as am emergency having a straight fish bone removed from being stuck on my voice box though how a straight fish one gets hooked? I never will know and could only have happened to me I’m sure!

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Ah, the ‘well your problem is so rare!’ diagnosis. Got one just this week. I’m thinking of making up a bingo card for every time I hear that.

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I wish there was an easy fool proof way to break the cycle!
‘Do head movements’ while very acute - oh my goodness! NO WAY! I remember all to well how that feels. Even just the slightest movement would send me throwing up. For weeks!

GP’s - in my opinion - are very general. They know a lot about day to day illnesses, but not too much about much else. When I told my gp I had vestibular migraine, she laughed and said “oh that’s a good one, good old vestibular migraine” as if it wasn’t even a thing!

Neck pain is obviously from the migraine (umm hello) and that you are most likely sleeping elevated (I’m guessing). I slept elevated for over a month as I had heaps of positional vertigo.

You really sound @MNEK18 that you’re taking this in your stride. Well done. So proactive… good girl.

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Hey Belindy,

Thank you for being so kind! Today I’m actually feeling so deflated. Yesterday my balance was better upon moving and I could just manage to get a drink from the kitchen then get back sat down and my vision also improved somewhat too. So I thought I’d have a shower and wash my in the evening as it lulled me into a false sense of security. Afterwards I was left with almighty head pressure. I went to bed at 9pm and woke at 11pm absolutely sick to my stomach and very unsteady trying to get to the bathroom. The neck pain was something else? I contemplated calling the ambulance but I didn’t.

Today it’s more vision problems and balance issues. I managed to get downstairs to feed my dogs but had to come back up as it was too much stimulation for me. So here I am again back confined in my room. :weary: I am now 8 days into the relapse and I thought I was seeing the light at the end of the tunnel. Apparently not…

I wish I could tell you that I’m super calm and relaxed but this is not the case unfortunately. You think you’re getting there and bam! No you’re not.

Xxx

Have you tried Valium? It’s great short term. I took some this week with an attack. My neuro prescribed it for 2 weeks with steroids to try to break the cycle last October

Hi @Belindy

I’ve never tried Valium, do they use that for migraine in the Uk? My Neuro is currently on leave now and I’ve called their office to see if there is anything else we can do about it. I’m taking a motion sickness tablet but it’s up and down with the sickness really.
What does the Valium help with?

Just feel awful :weary:

@Belindy

Just got an email, he’s saying he’s never used Valium as an abortive. He suggests I go to the GP and have my ears check incase this is an inner ear problem?! :woman_facepalming:t3:

The best abortives according to him are asprin 600mg or ibuprofen 400mg or Sumitriptan (which made my headache worse last time)

Thing is I don’t have any pain right now? Does that matter or will they still work on the dizziness? I don’t know :woman_shrugging:t3:

:sparkling_heart: