As in look after yourself, sounds like youāve had a few ups and downs with meds already.
Itās 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. Thatās been the case for me a handful of times. Itās 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 doesnāt seem to think it matters.
You are extremely lucky having such a good Doctor though. His online material is superb. Good ENTs/neuroās 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.
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Yep, Dr. Google can really make you anxious and that is really counter-productive. But if it wasnāt for this board I wouldnāt be so confident that my treatment is appropriate.
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I hope everyone has read āMore Than A Headacheā 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 āHeal Your Headacheā 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 ākeep coolā. 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 ā¦
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 Peetās, Trader Joeās, Ralphās 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. Itās the same at physical therapy when walking on a treadmill - as long as Iām walking on it, Iām āokā, but they stop it and itās like Iāve 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 donāt care for it a whole lot, other than the fact it knocks out my headache definitely, but if I donāt immediately go to sleep (sometimes I suffer from insomnia), it makes me nauseous.
Physical therapy (vestibular rehab) head movements (constant for a minute, yes/noās) 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 ā¦ 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 didnāt 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 didnāt feel the need to constantly hang on to my husband when going out places - although I didnāt let him get far from me (or if he isnāt 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 couldnāt get away from fast enough and that was THE TRIGGER, and now Iām pretty much home bound again. Iāve had 3 episodes of what I call unexpected loss of balance - I didnāt feel dizzy at the time of the loss of balance, didnāt 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 Iām 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 Iām noticing my vision here lately has been really blurry and even my glasses arenāt seeming to help. I had lasik several years ago, and have ā20/20ā, but my left eye didnāt 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, itās kind of comical, because Iām 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 youāre moving youāre 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 itās normal to get worse first, (but then hopefully it will improve.)
Itās been a bad week - kind of a bit scatterbrainedā¦ hope I answered what you were askingā¦