The Migraine Associated Vertigo Community
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Being off of medication!!

For the past month I’ve come off my medication as I have to have a blood test, an ECG and blood pressure test for new potential medication. I was on ami and another called dosulepin And moving back and forth between home and uni it’s been taking me longer to have my appointments so I’m currently in a bad state.

Baring in mind neither of the medication worked for migraines nor improved my vertigo so I can still feel myself getting worse. How with the ami I’ve realised it actually worked for me as an antidepressant and I was on the highest dose. And I’m now back in a down state majority of the time. All I do is sleep and unable to complete my uni vacation work.

I still have another month before I can return to uni and just restart the process of all this trial to find something that works. And considering the period we are on its difficult to try and go do things that help!! I struggle to even do things at home because I have no energy and my head just feels disconnected from my body.

Does anyone else experience hallucinations from having MAV? Because I only used to get it with a lack of sleep but without being able to concentrate I get it a lot more often.

Sorry to read you are struggling. Very unfortunate that you have had to temporarily quit the medications for ongoing tests. That change is bound to have an adverse effect on MAV. Have they told you when you can resume? Sooner the better by the sounds of it.

Now might just be a good time to reread the lovely and extremely comprehensive Positivity post @flutters wrote you the last time you were so low and lacking in motivation. Packed full of excellent tips.

As for the hallucinations, can you describe them a bit more fully? One man’s hallucination is another man’s Visual Vertigo and then there’s AIWS, Visual Snow etc. Are these visual, auditory or something completely different? Unsettlingly as they must be to witness I would doubt they are anything to worry about. Just another symptom aggravated by the ongoing changes in the brain as a result of stopping the medication I suspect. Sensitive brains do not appreciate sudden change and revolt accordingly.

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1 month taper is pretty short, what dose of medication were you on before you started to come off it? It sounds like you were on a large dose of Ami (you wrote “largest dose”). So 100mg or so? If you tapered that large of a dose in a month I can see how many withdrawl effects could come into play. Did your doctor tell you to taper that quickly? For perspective, I went down from 20mg to 10mg of Ami in June, now I’m fairly well adjusted and thinking to go down to 5mg starting Sept (3 months). I understand you may have other medical conditions which are forcing you to come off quickly, but 1 month taper from a maximum dose of Ami sounds really tough to me.

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I went from Ami 100mg onto dolseupin in April time. And then was to slowly come off Dolseupin because the doctors said that they are no longer producing that medication because there are no benefits to it. So I did come off my medication slowly but still hit a wall pretty hard after coming off of them