Chris just curious, did Dr Hain give a general average on time to recovery with his patients?
Great information and that sounds like a pretty damn good outcome to me from where I am now. About to detox from Nori for a couple weeks and be medicineless which is going to suck. But hopefully the outcome on the other end will be worth it.
All migraines, people, and their response to medicines are extremely different. All the neurologists I have seen have never mentioned a timeliness in the least. It is basically a wait and see approach. People respond to these medicines in all different types of ways - you just have to trudge through until you find the right one, which has taken 2.5 years so far for me. My first I tried alternative methods which just seems like a waste now. Over the last 2.5 though I have honed in and really hope I am close with Ami.
Oh really, can’t you just swap over at low dose? They are very similar drugs?
You also need to consider the underlying condition if it’s not migraine.
In my case ear trauma and I believe its brought on a level of hydrops from loose otoconia (i have ear pressure, though no ‘fullness’, tinnitus, associated hyperacusis and some hearing loss, though its atypically at high frequencies). I’m pretty sure this is fairly common as BPPV is very common. For me to get really better I guess my ear has to clear away the debris over time and that should improve my plumbing. Many academics believe there is a mechanism to clear loose otoconia, but as you can imagine, this is probably a very long drawn out process with potential ups and downs. Many believe that full blown Menieres is probably total blockage by these little rocks.
So it’s a question of getting remission or cure from whatever was causing the migraines, imho. NB I’ve had one migraine my entire life prior to getting MAV, so i’m fairly sure there is some other cause.
A good way of judging general prognosis is having a look at the history of posts on this forum. I’ve looked at how several users have improved and it seems people seem to get much better initially with meds, then takes them another 2 to 4 years to get a lot better still. Some seem less lucky. Good exercise seems to be a very good treatment. See ‘beatles909’ posts.
Well, that is a long story…when I introduced Lexapro for 1 dose while switching from effexor, it made me much worse. So I immediately switched back to Effexor and it never ended up working the same. It would flunk in and out the whole time I took it over the last year. What this means is, I could feel the medicine in my body and its efficacy and then when it gets to a certain level it would just seem to go away for 3-5 days - like I am detoxing…and then bounce back. Very strange and no one seems to have an explanation for it. So when I switched from Effexor to Nori it was a one-for-one and I am experiencing the same thing with Nori
I experienced the same issue while taking Zonisamide and introduced Nori concurrently for four days. I immediately stopped Nori after feeling worse (possibly regretful of that decision) and when just back on Zon it never worked the same. Just would flub in and out.
I am hoping if I give my self some time off Nori maybe a week or so clean, I will not experience this same issue.
At least one reason I having this issue is I have heart side effects which seem to coincide with this issue so it is probably just a matter of not being able to tolerate the medicines well.
Gosh, you have been in the wars, fine then, but take it easy for that period!
Not sure what you mean?
As in look after yourself, sounds like you’ve had a few ups and downs with meds already.
It’s been difficult as everyone here can attest. I am not sure if it is more brutal just having no success or getting there and having it ripped away after thinking you have found the solution for a week. That’s been the case for me a handful of times. It’s why I would prefer to titrate with Ami cold turkey to remove all variables and attest that I did it the best i could. But Hain doesn’t seem to think it matters.
You are extremely lucky having such a good Doctor though. His online material is superb. Good ENTs/neuro’s are so rare.
It is always good to relate with people going through the same thing too. My wife has found this very difficult and cannot really provide much help/support. But stalking forums all the time is not good for me either. However, now that i know what works, I feel like I can at least give back and shift through to find the best information that might work for me. INSTEAD of focusing on the negative side of it.
Yep, Dr. Google can really make you anxious and that is really counter-productive. But if it wasn’t for this board I wouldn’t be so confident that my treatment is appropriate.
I hope everyone has read “More Than A Headache” by Drs. Texeido and Carey from Johns Hopkins. Also, on my resource page I have listed a wonderful article from the mvertigo site on a review of MAV from 2014 (I cannot remember the exact title now). I have had success viewing these issues (ear fullness, vertigo, nausea, hearing loss, etc) as neurological and I have to reduce things that stimulate the nerves in the head… My triggers are heat (July thrugh September/October), motion, caffeine (even brewed decaf) and during the hot months even talking too much will excite the nerves in my head. I follow the “Heal Your Headache” diet by Dr. Buccholz but I have learned that small amounts of some of the foods do not bother me. I rotate small amounts, even plain chocolate, through my week. I really have to be careful of anything that raises the heat in my body (exercise, social stimulation, hot beverages) as these are triggers. I must “keep cool”. I have been on a course of Nortriptyline 4 times with varying lengths of no medication in between - one time I went 14 months without the medication. This summer I am taking an Allegra (not decongestant) each night and an occasional Nasonex spray (every three or four days) and that is helping get me through the heat - SO FAR! I feel that paying attention to the migraine diet, and NO coffee or brewed decaf or alcohol , is critical even if you are on medication. It is important to do the whole thing. I must prepare most of my own meals. (vertigotalesandtastes.blogspot.com)
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Completely on the alcohol. And the nice part is that I have fewer migraines now (well zero) than I used to have hangovers I have got away with coffee, but drink it very rarely now. Herbal tea is the order of the day, or just hot water (which is surprisingly pleasant!)
Spinning girl LOVE your post! Thanks so much! I recently moved to Texas and this heat is definitely a trigger. Sometimes I think it is what caused this all …
The problem with triggers, like coffee, is that they can be cumulative and additive. If you have a little over several days then it accumulates and that can be a trigger. If you have a small amount on top of other triggers, then it becomes additive and that may be a trigger. It is best to just eliminate caffeine. I learned the hard way that I have to eliminate brewed decaf except maybe once or twice a month. Remember, most restaurant decaf is not CO2 or water processed so it also has chemicals in it. All caffeine is a stimulant for the nerves in the head. I have good luck drinking the following everyday without problems: Mount Hagen Instant Decaf Coffee (not bad tasting and it is CO2 processed).and Red Rooibus Tea (Not Chai!!). I put a little cream in the coffee and a little Agave in the tea and I am very satisfied. I even take them on trips so I do not feel deprived. The coffee is sold at Amazon (2-pack is least expensive way to go, use Prime) or Whole Foods (when they have it in) and the Plain red rooibus tea is at Peet’s, Trader Joe’s, Ralph’s and online. I have a current shopping list at my blog if you are interested. (vertigotalesandtastes.blogspot.com)
I get just slightly dizzy when in a car, but when the car stops at stoplights and stop signs, then the spins really hit. It’s the same at physical therapy when walking on a treadmill - as long as I’m walking on it, I’m “ok”, but they stop it and it’s like I’ve been on a merry-go-round. The dizzier I get, the worse the headaches are - and they can last for days until I break down and take my rizatriptan - I don’t care for it a whole lot, other than the fact it knocks out my headache definitely, but if I don’t immediately go to sleep (sometimes I suffer from insomnia), it makes me nauseous.
Physical therapy (vestibular rehab) head movements (constant for a minute, yes/no’s) will spin me up, but only after 30 seconds or so (although I remember in the beginning it would just take 5 or 6 seconds and I was ready to quit). Physical therapy truly did help, but I could never find anything that could totally eliminate the dizzy / off balance feeling, and nothing helped with the sensitivity that I have to sound (loud and/or high pitch sounds make me dizzy).
Hi @Foxn4cubs. I have been doing VRTs for several years now and it has been the only thing that has seemed to make my condition at least somewhat tolerable (not complete hell). I have slowly paired them down in the last year due to success with controlling env. factors, diet mods, and addition of meds, but still continue the mainstay exercises. When attempting to stop or reduce them I have experienced quite a bit of increased MAV symptoms. Also, when I am not doing well with my meds or env. conditions, the VRTs seem to make me worse - increased symptoms do not go away after 15-30 mins as my Vestibular therapists suggested should be the max.
I was wondering: How long did you continue your exercises? Have you stopped? If so, what lead you to eliminating the exercises? Additionally, how did you stop - was it a gradual reduction or complete elimination?
Hi @chris3268 … They released me from physical therapy in March - after 6 months of 2 to 3 times a week 1 hour sessions - plus my exercises that they gave me to do at home (1 min x 7 head positions at first x 3 times a day on days I didn’t have physical therapy - nothing over 15 minutes per session at home). I was still dizzy every day, but at the end it took so much (like jumping on a trampoline) to get me to a 5 (on a scale of 1-10) - when they released me to be honest, I was just sick of going and I was sick of being dizzy. I hit a plateau - I was still dizzy every single day, but I didn’t feel the need to constantly hang on to my husband when going out places - although I didn’t let him get far from me (or if he isn’t around, I walk by walls, counters, tables, chairs, etc). When I first started physical therapy, I could only stand on a piece of foam for 7 seconds with my eyes closed before losing my balance, so 6 months brought me a long way.
When they released me from physical therapy - I quit doing my exercises all at once. It was my attitude that made me stop - I was frustrated, I still am, and slowly since March, the dizziness is getting worse. End of April, I flew on an airplane and while on vacation (5/1) I heard a really loud generator noise that I couldn’t get away from fast enough and that was THE TRIGGER, and now I’m pretty much home bound again. I’ve had 3 episodes of what I call unexpected loss of balance - I didn’t feel dizzy at the time of the loss of balance, didn’t feel myself falling, I saw the floor rising to greet me - if that makes sense.
So, I took the first time as my hint to start my physical therapy exercises again. They did an evaluation on me at physical therapy and I’m not as bad as I think I am (as in my confidence level), but the nystagmus is back on a head shake, which had been completely eliminated by the time I had left. They are seeing a huge problem with me tracking this go around and I’m noticing my vision here lately has been really blurry and even my glasses aren’t seeming to help. I had lasik several years ago, and have “20/20”, but my left eye didn’t take as well as my right eye. On dizzy days, I have layered vision-I see a clear image and a blurry image on top of it. So, when they say tell me when you see two images, it’s kind of comical, because I’m always seeing two here lately. Glasses helped previously because they made the prescription the same in both eyes, so I guess I need to go back and get a new prescription and see if it helps again.
What helps in not giving myself a headache, especially on the head movement ones, is using a metronome app - I got one for my phone that has a timer - when it stops, I know my exercise time is over for that head position. That way you also know what speed you’re moving you’re head and keeping it consistent. If I start getting a headache, I knock it down 5 beats and try again. Also, when starting exercises - I noticed this time and the previous time, it always makes my symptoms worse the first few weeks while my brain says what the heck are you doing to me? My physical therapist said it’s normal to get worse first, (but then hopefully it will improve.)
It’s been a bad week - kind of a bit scatterbrained… hope I answered what you were asking…