Ami has been an absolute saver. However, I can feel it negatively affecting my body + heart palpitations (and, ironically, sleep) and was wondering whether anyone has managed to beat this sans medication?
Could be a short thread…
Of course there could be more but they’ve likely long gone from the site. Which is a perennial problem with asking this kind of question. Another question that might suffer from the metaphorical tumble weed and struggle to get answers would be “Anyone get to 100%?”.
Though I took Ami for 1.5 years, I was not free of vestibular and neurological symptoms when I stopped Ami, I chose to deal with the remaining period without medication. I still improved, which to me highlighted that the medication was to some extent ‘symptom management’.
@beatles909 also gave up medication whilst still suffering vestibular symptoms and eventually symptoms waned in any case.
I do wonder if in some cases over use of medication prevents people achieving compensation. However, to balance that there were other signs I was improving aside from vestibular and cognitive stuff (I had a fluid sensation in my left ear which decreased ever so slowly over time).
It probably comes down to what’s causing your issue in the first place. If it’s some kind of inflammation or trauma, then that’s like to settle in the longer term regardless of what you are ‘on’ (or not).
I think if you are over 2 years in from day zero and noticing genuine long term improvements year on year it might be worth a try. If you don’t end up with massive migraines but just a mild increase in dizziness it could be an option.
As Andy so rightly says. Could be a short thread however some of that’s because on a forum like this you’re addressing a skewed audience in more ways than one. For one thing a sufferer who took their symptoms to the doctor and was given a preventative that worked pretty smartish at the first attempt would probably never have found their way here in the first place and most on here are extensive computer users which tends to be a major trigger in any case.
In more direct answer to your question I must say I’ve read of people who have recovered without medication. Some people manage by dietary changes and/or use of various vitamins and supplements, ie B2, magnesium etc. It must be possible because People on here from the US have posted saying their consultant (Dr Raunch I believe) insisted on them following a Migraine Diet for a certain number of months (I’ve a feeling it was four but don’t quote me on that one please) before he would consider prescribing medication.
This young woman seems to have had success without meds.
From reading some of your previous posts it would seem you aren’t at all comfortable with trialling meds and that you are perhaps over vigilant to your symptoms both of which could lead to health anxiety so perhaps you’d be happier without meds. After all if you aren’t confident trying them the resultant anxiety might negate the good they are likely to do you any way. Helen
Plus ‘beating this’ means different things to different people. Downing endless kale smoothies and going to bed at 8pm for eternity to gain marginal improvements isn’t beating anything. It’s coping. Not to be sniffed at if your baseline for quality of life has taken a dive but it’s like reading any success stories on here or a tinnitus forum or wherever, its not long before the author starts backtracking and reframes their idea of success.
I took Ami for 9 months several years ago when I got chronic migraine (and the dizziness abated a bit as the MAV morphed) in my late 40’s. My GP said I could come off it as I was suffering anti chologenic effects and felt “dull and flat.” The migraine headaches had subsided to a few a month. I felt really great for about a year, like I could really breathe and feel again, went for long hikes, able to travel on airplanes, buiding up my self employed work again. However, I wasn’t totally symptom free, I still had some degree of ear noise and that feeling of ear fullness to some extent everyday. After about a year the dizziness and MAV symptoms did start to gradually reappear until I realised I was relapsing. My new consultant reckons the Ami helped me but that I didn’t take it for long enough. He uses the allusion of a sticking plaster on a cut. The meds are like the plaster dampening things down and then when the wound seems better you can take the plaster off and see if the cut has healed. If not, you reapply for longer. If you are really unhappy taking the Ami, why not talk to yout doctor about tapering off. You can always go back on them or try a new med.
I agree with James, I think recovery may depend on what caused the issue in the first place. I suspect that for those whom diet alone “cured” the MAV (like in the girl in Helen’s link) that they were on the way to
healing. It was just a matter of time for the inflammation or irritation in their brainstem calming. Perhaps the diet was the little that was needed to bring their threshold down.
My consultant thinks that if you get treatment quickly and are young then the Six C’s diet and a shortish course of meds (9 to 12 months) might be enough to calm things down and let your brain stem"reset" maybe a bit of VRT when all is calm. However, if like me, you have gone untreated properly for decades and are middle aged then it is a much longer and harder road as my brainstem has being coping with misaligned balance inputs for so long and over relying on visual cues and is worn out.
I was misdiagnosed by several ENT’s as having Menieres back in the 90’s and when Serc didn’t work was told I’d have to live with it. It might “burn itself out” if I was lucky but that anyway my body had compensated well. I’d say that for about 13 years I was pretty functional. I still had the feeling of some ear fullness and noise everyday, but mostly I could forget about it and just live life, I’d have the odd few days, often in the summer when I’d be running on empty and have to lie on the sofa as I felt off kilter . I never felt totally “healed” but apart from avoiding the spinning teacups and some other fairground rides with my children I was good. It was only in my mid forties that headaches and the raft of other MAV symptoms started creeping back. It could be hormonal, or perhaps with age my body can’t compensate as well as it used to on top of other life stresses. So, if you’d asked me 12 years ago “has anyone got better WITHOUT medication/” I might well have said yes.
I suspect for me that if I do get to 80 or 90 percent on meds this time round and taper off that it will always be lying in wait to be triggered again as I can see looking back into childhood some markers for it.
@beatles909 spoke to me recently. He uses intense cardio every day to keep the symptoms at bay. Still has symptoms if he fails to exercise.
Gah. Thanks for the update. But at least he’s coping without meds?
That’s an interesting question.
I personally have never had any prescribed medication and I’ve had MAV for many years. Oh, I once had a few tablets of Serc/Betahistine which made me feel worse and more ‘spirally’, so I got rid of them (2014).
I manage my symptoms with diet and supplements and it seems to be working. So I use the traditional migraine diet and avoidance of trigger foods … and supplementary magnesium, B vits, COQ10, Zinc, Vit-C.
Hope you get better, Anthony
I do the same and I hope you are faring well but the Mag, B Vits, CoQ10 etc. are just extra buckets on the Titanic. They ultimately won’t fix anything.
Yes, that’s true, but neither will antidepressants and the like. This is obviously a site that’s highly in favour or medication and pharmaceuticals but there are many sufferers on here who know a lot. I don’t suppose anything would fix it except perhaps stem cell technology.
I agree. I’m not for or against medication personally. I choose not to take it as it clearly doesn’t fix the issue but can be a crutch if all else fails.
I guess it might come across like that particularly for those first dipping in the resource, which I know doesn’t apply in your case but that could just be the fact that the increased sensitivity to meds most MAVers suffer results in many post relating to titration and med side effects. This a common topic of conversation. However MAV can be so persistent and life changing I think most do eventually try medication.
I’d have been shocked years back if anybody’d told me I’d end up taking beta blockers. Would have made my teeth curl for sure. However I’d previously, admittedly mostly by pure chance, tried most other options to absolutely no avail. Indeed pretty much most of them. When MAV was episodic I tried ignoring it which wasn’t difficult because I neither knew what it was nir that it was controllable by medication. Then, roughly in order, I tried physio, Vision Training, looking into the possibility of eye surgery, Tai Chi (four years, enjoyable, met some nice people), VRT (intensive six months an hour a day, gruelling and balance destroying), relaxation, meditation, CBT and then I found out it was MAV and it was possible to take preventatives and, as nothing else had worked it seemed a good idea. To add to its effectiveness I’ve since tried Alexander Technique and Vitamin B2 two more to add to the list of failures. For me meds proved a life line not a crutch. Agreed stem cell technology might have been better. Oh would that it were an option.
I’m not sure how stem cell tech would help? What’s the theory behind that?
I took Ami to stop the migraines and reduce the dizziness. It was non negotiable as otherwise I could not use a computer. I had no choice but to take it. Otherwise my life was garbage and it would have been impossible to work or even socialise.
I’m very glad I did and I don’t regret it for a second.
For those of us who’ve been dealing with MAV for literally decades, the obvious answer is it’s genetic and probably autoimmune. Stem cell technology provides the most hope for MAV that is clearly baked in.
Hi, yes, I think you’re right. My view is: do whatever helps! A
I’ve not suffered with MAV or MAV-like symptoms for long (since August). I’ve not yet been properly diagnosed, I see my neurologist with an updated list of symptoms next week actually.
I take quite a few supplements for different things but my B2 (200 mg a day) seems to help me feel a little more like myself when I’m having an off day. I was taking magnesium (500 mg) but that messes with my insides a bit so I can’t gauge that it helps me.
I also suffer from autoimmune type things, such as PCOS, IBS-C, my thyroid fluctuates (no meds for that yet), and I have chronic gastritis. My body likes to be all inflammatory and junk so I take black seed oil (curcumin) capsules everyday to help reduce inflammation.
I’ve noticed fresh strawberries and avocados seem to help stave off some neurological things to a degree. Lessens the out of body feeling and the swaying feeling I sometimes get. Now this is only if it’s mild to medium, but still every little bit helps.
Working out seems to help me. I went a little too hard yesterday with a tabata style workout so I think that’s why I’m a little off today, but my weight workouts don’t seem to bother me. I did however, stop my protein. Had a known ingredient that can trigger a migraine so I stopped it.
I don’t like that my medication is a triptan because I can’t identify my first symptoms of a migraine anymore as they keep changing so an abortive medication isn’t working out for me. I have naturally low blood pressure so I don’t know if any preventatives would work for me that wouldn’t knock me out dead. Guess I’ll wait and see what the doc says.
Hope some of this helps.
Wow that’s pretty intense, nice work! Just light weight lifting and walking for me (-:
Agreed when symptoms are round the clock! Now that I’m hovering near 100% I am able to use triptans when needed without any side effects. Haven’t had to use them in a couple weeks though!
You might consider reading the threads on Angela Stanton’s book. Those two items that make you feel better? Both high in potassium. You may benefit from an electrolyte mix - potassium, magnesium, chloride, sodium - all deficient in the migraine brain.
Most of us feel better with moderate, steady exercise. HIIT - not so much. I gave up Tabatas.
Also search PCOS on this site - a very common co-morbidity here.
Inflammation is the name of the game. After 25 years and many, many medications my best strategy to date is low carb eating (paleo, primal or ketosis) and taking metformin. It’s a very hard lifestyle but it’s 1000x better than unmedicated MAV.
No point trying to second guess what the Doc will say though sounds as if beta blockers are ruled out in advance but some of the drugs used as preventatives ie Effexor, are inclined to increase BP rather than decrease it and others have neutral effect so it shouldn’t be a problem.