Hi,
I saw Dr. Hain in August after 6 months of wondering what the heck was wrong with me and the only place I ever got any answers was on this siteā¦which lead me to his siteā¦which lead me to my āah haā moment. I wish it were for something good, but there is some sort of comfort in knowing Iām not alone.
I flew to Chicago to see him and really liked him. I had a fear he was going to recommend Effexor, based on my symtoms and that he seems to really like that stuff, and sure enoughā¦left with a script. I tried it and after 3 weeks on the 1/3 capsule, I was crying daily and feeling more anxioiusā¦I asked him if I was supposed to get worse before better and he said no, just better. Recommended adding Inderal to the mixā¦that was too much and I just couldnāt handle being on so many meds. Saw my local P-doc who said maybe we shoudl try a tryciclic. So Iām now on Ami at 10 mg at night and itās making my dizziness worse, but my daily headaches have subsided. What a trade, huh? So now Iām nto sure what to do. There is a local āheadacheā specialst in my area that wants me to try ami at night and cymbalta too. Iām worried about Seratonin Syndrome, and also just going through the SE; s of yet another drug. Iāve tried Lexapro, Remeron, Effexor, Inderal and now the Ami. I think itās like trading some bad problems for another set of bad problemsā¦I know you guys understand. One of my biggest āweirdā symtoms is I wake up trembling every morning and have bad anxiety for the first 3-5 hours of the dayā¦itās terrible. It started about 3 months into the MAV symtomsā¦
Welcome to this board. I just wanted to mention that I tried Nortriptyline last year (similar to amit) and it made me much worse for the first 7-10 days of starting or increasing the dose, but then my body adjusted. I think itās very normal to feel more ill at first. One doctor said that it may actually be a good sign of your body responding to the med. Unfortunately, after only reaching 20mg on the med I saw another doc who didnāt use Nort. and took me off of it. Many, though, have success on tricyclics. I am pregnant now, but will most likely retrial it in a few months. Just wanted to let you know that it is normal to feel more off until your body adjusts. Many othesr on tricyclics have also shared these experiences with me. btw - what are your symptoms ? seems like we all have a variation of the same symptoms. anyway, welcome again. this site is such a great support.
Thanks for the welcome. 
My symtoms started out as ādizzinessā, but not spinningā¦just like I felt āhighā or drugged. Especially noticed it on restaurant lighting or dim lighting. I never had a headache in my lifeā¦but I would have moments of just being off. IT became more apparent that it was my vision causing my my dizziness, and I went to 3 eye doctors, including a neuro-opthomologist. All good. Saw a Neuroā¦got a battery of tests and they scared the bajeesus out of me and then cmae my insomnia and anxiety. I think mine is particular to āvisual flowā and hypersensitivity to what I see. I frequently feel off and itās hard to decribe. Then came my daily headaches around 3:00 pm. In the mornings they were replaced with terrible anxietyā¦flip flopping every day. Then my hedaches became more regular and started earlier and earlier. The ami has stopped the daily headaches (which were around my eyes/orbital sockets)ā¦every med increases my dizziness. I have had a crazy amount of emotions going on as well and can cry at any time, and do. MY family canāt figure out what happened to me because they canāt āSeeā the problem. Like with a broken leg or something. I hate taking meds and I hate the side effects and ahve tried to many natural approaches, but since we are going into month 8 with this thing, I am getting more desparate. I feel like it stole my lifeā¦my personalityā¦I am consumed with it and itās like I canāt help it. It effects everything I do, say and feel.
I am leaving in a few hours to the Deepak Chopra Center in California for a week of āNaturalā healing and relaxation. I am trying to hit this thing from all anglesā¦I just am desperate to have my life back.
My symtoms are dailyā¦sometimes the headaches and dizziness get worse or better, but Iāve never had a day off in 8 months. I did have some temporary relief from Remeron in July when I first went on it, but it pooped out on me quite quickly. That is why I know this is about neurotransmittersā¦I felt the change when it worked.
I can relate to much of what you said. my symptoms have been unrelenting for over 2 years, and I am disabled from work, and not able to function very well. The dizziness is very extreme. I wish you all the best with finding a treatment that works.
rockyksmom,
Like Lisa said, welcome to the forum. Youāre in good company here ā probably 95% of the people posting here are still suffering from the same illness, and for a long time. I say, donāt hesitate to post whenever you feel the need to, even if just to say āIām having a really lousy dayā; no one will mind your saying whateverās on your mind.
As for the depression / anxiety / āemotional roller-coasterā you describe, itās hard to say whether itās a symptom of MAV (like of some sort of chemical imbalance) or just a reaction to it. (This stuff can depress ANYONE, and big-time!) Perhaps itās some of each.
For short-term relief, a lot of people (though not all) have tried ābenzosā like Valium or Klonopin. A couple of those seem to help me out for a few hours. Have you tried any? They donāt solve things, but they can make the day more tolerable.
Whether you continue with Dr. Hain (who Iām seeing) or with anyone else, I suggest (based on personal experience) making very clear your concern about drug side-effects. A lot of people suffering MAV are unusually sensitive to medicines. Perhaps you are as well, to a degree (Effexor and Inderal both didnāt agree with me).
One good thing about Dr. Hain is that if you tell him as much, he will try to start you with better-tolerated, more innocuous drugs. Verapamil and Neurontin have virtually zero SEās for many people.
Are you still having difficulty getting your family to understand your problem or what it āfeels likeā? If so, some people here (including me) would be happy to help try to give you some āsuggestionsā (i.e., imagery or words/phrases weāve used to try to describe our own situations).
By the way, are you mostly experiencing (what I call) visual hyperstimulation, or do you have more than that, like a feeling of being off-balance, or a feeling of āmotionā, etc?
Anyway, one thing that everyone always says here is that no oneās experience is incurable. It may take one medicine trial, or it may take multiple tries, but youāre bound to eventually find the drug (or drug combo) that solves it. Iām kind of a hypocrite because IāM not very good lately about this whole āstaying hopefulā thing, but I have to remind myself itās true.
George
Sorry I took so long to reply. I just got back from a wellness program at the Deepak Chopra center down in Southern California. What I took away from that was two important things. One, Dr. David Simon (medical director there) suggests that 90% of physical illness is rooted in emotion. He has written a book āFree to Heal, Free to Loveā. I think thereās some truth to that. How is it that I have been completely healthy my whole life and then all the sudden got this thing? I look back and realize I got married to a man with teenagers and quit my job, completely changing my life. I guess its possible I internalized all the challenges that came with that. That may sound nutty, but the mind-body connection is as āoneā, and I think it helps to make sure we are dealing with our emotional and mental issues as best we can in support of healing our physical issues. Any feedback there?
Secondly, everyone says how impactful meditation is. Iāve been doing it twice a day for 9 days, and Iāve seen a little improvement. Iām commited to continuing it for 21 days (as long as it takes to make something a habit) and seeing if that offers any help with the anxiety.
I appreciate the feedback from my original post. This is at least one place I can go where I feel people understand my plightā¦It helps to know we are not alone.
For the record, I am going into week 4 of Ami at 20Mg (titrated from 10) and it is helping me deal with it better mentally, but my dizziness and visual flow still annoying the crap out of me daily. However, I do think I see an improvement when I add Klonapin to the mix (which I usually do for anxiety, but now noticing it helps with the dizziness)ā¦anyone else see that? With that being said, Klonapin is a benzo but I always see it listed under anticonvulsantsā¦which leads me to wonder if that mgiht be a good thing for me to try next if I canāt get where I want to go on the Ami alone. If anyone wants to PM me about any above stuff, iām happy to have the connectionsā¦
Hi Rockyksmom,
ā Begin quote from ārockyksmomā
Dr. David Simon (medical director there) suggests that 90% of physical illness is rooted in emotion.
ā End quote
I think a statement like this from a doctor is incredibly negligent actually and hugely unfair to you. First, why 90%? What hat did he pull that figure from and what evidence does he base that assertion on? Why not 83%? What about a young child who develops leukemia who leads a normal happy life? Does he or she have the āwrongā emotions going on? Second, saying this to a person implies that itās their fault that theyāre ill, that they somehow caused their own illness because they never had their emotions under control. So the healthy person has their act together but we donāt because we happen to have a genetic disease called migraine. While I think itās true that long-term stress and even depression can make it more likely that we may become more susceptible to certain diseases (for example, there is evidence that stress can contribute to cardiovascular disease). To say that āyour emotionsā caused your migraine to me is completely false. There is overwhelming evidence that migraine is caused by an inherited genetic defect. I could buy that a serious amount of stress might act as a trigger for a migraine brain that was already on the path and finally pushing you over your threshold but then itās not a reason to explain why it might become a chronic illness. There are millions of migraineurs who only experience this episodically, perhaps when stress levels and other triggers are high. The stressful period passes (or not), the season changes, they eat better, and they feel normal again. Iād just hate for you to walk away from this thinking it is somehow your fault. What do you think?
Meditation, however, is great and think that it can only help to keep the sympathetic nervous system in much better control and stop a person from letting their minds go crazy with rumination. One thing is for sure, that staying calmer more often and keeping the stress hormones etc down makes for a happy migraine brain. Iām into a course right now developed at U of Mass that uses what they call āmindfulnessā to accomplish this. Iāve also been trying to make the time for meditation. Youāve been doing much better than me at it. Iām finding it hard to set aside the time for it. Congrats on keeping it consistent for 9 days.
I had this thought today about sleep patterns for a migraineur. I wonder if this aspect of it could be a main or THE main function on whether or not many migraineurs will be ill or not most of the time. Itās too early to tell but Iām noticing that if I deviate from going to bed by 30 minutes or more, or not getting 8 hours in, that I am much more likely (guaranteed) to get hit with symptoms the next day or be taken down by what I thought were the main triggers such as foods and exercise. Not certain yet how big this is. The experiment continues ā¦
Best ā¦ Scott 8)
Hello Rockysmom,
While Iām very sorry youāve got MAV I am happy you have found us on this site. I have found it a great support myself and am sure you will too. Congratulations also on taking such a proactive and āholisticā approach to getting well.
Iām also going to take issue with this doctor who says that 90% of illness is rooted in emotional causes. That just sounds like absolute bunkum to me. Illnesses are caused by genetics, infections, lifestyle and any or all combinations of those. Are 90% of the people with malaria, H1N1, scoliosis, arthritis, endometriosis and myopia (just for starters) all suffering needlessly because they have emotional issues? I think not.
What I do agree with is that, whatever illness/condition anyone may have that a good diet, regular exercise, regular sleep, minimal stress and a positive outlook are going to help them feel better. But itās also going to improve the quality of life for people who arenāt āunwellā also. Thatās just common sense. Given that migraineurs have these hypersenstive migraine brains it also makes perfect sense for us to do all those things, even when we arenāt in the grip of MAV, to help us stay well. As most of us know - stress, anxiety, lack of sleep and so on can all tip us over into migraine hell, so doing meditation, relaxation techniques, CBT along with a good diet and sleep routine can have real benefits.
As to the side effects from drugs - Iād just caution about paranoia before trying a drug. Not ALL mirgaineurs are hyper med sensitive and/or not to all drugs. I can tell you from my own experience with Prothiaden/Dothep for example that the first couple of weeks were rough and then things settled down. I also once accidentally took 225mg instead of 75mg. Did feel weird and migrainey but I got through my days. My usually cool and calm neurologist flipped out when I told him and said that my āmetabolism must chew through this stuffā and that he was surpised I didnāt end up in hospital :lol:
Scott,
Iām going to disagree with you on the sleep thing as being a potential (black) magic bullet. As you know I used to do shift work. As well as the inconsistent hours Iād often get limited sleep (eg a 15+ hour shift, back on again after 7 hour break). Iām also an insomniac so Iād have real trouble sleeping during the day, worse even than nights. I had MAV and migraines then and I have MAV and migraines now. BUT, thatās just me. What I DID find, was that a combination of factors could trip me over. So, if I was fatigued AND stressed (eg at work) AND there was a storm brewing (personal trigger) then it could be all too much for my poor migrainey brain and send me into migraine meltdown.
On the other hand, I have been to the sleep clinic for both group and individual therapy so have learnt all about āsleep hygeineā. For insomniacs one of the main things you have to do is keep to a sleep routine, with the most important being consistency of time of getting up (from memory I think the variations should be no more than 20 mins). Possibly that same principle could apply to a migraineur (as you are experiencing) not so much from the insomnia perspective but in training the body to a routine, so that the quality of sleep is improved. Also, as we all know, migraine brains they donāt like the change. So for us, keeping to routines in all aspects of our lives is good. Just my two cents worthā¦
Cheers
Vic
ā Begin quote from āVictoriaā
Scott,
Iām going to disagree with you on the sleep thing as being a potential (black) magic bullet.
ā End quote
Blast you! Youāre killing my theory. :lol: Well, for now Iām going to continue to delude myself that sleep is IT.
At any rate, no Dexter tonight because I spent the entire last night being chased around by a serial killer in my dreams and woke like Iād just run the Boston marathon! So all things going well, itās lights out at 10.30 pm. Maybe I can will myself into a MAV-free day thinking itās the sleep thatās sorting me out.
Scott
Scott,
Dexter is obviously to blame for your nightmares - the serial killing scamp! I prescribe a glass of hot milk, an episode of Skippy and happy thoughts of Christmas. You will sleep like a log. Especially if thereās a valium crushed up in that milk 
Calm blue ocean, calm blue ocean Ommmmmmmmmmmmm
Vic
quick side note - I love the show Dexter!! so funny that weāre watching it around the world. very cool
Hi Lisa,
Iām completely addicted but wow, is it black or what? Just made it through to the end of season two. Nice finale with Dexter in Paris for the evening to finish up some ābusinessā. :evil: ā supposed to be Dex when heās wound up.
Iām glad you can at least enjoy some TV while feeling crappy with the MAV. Itās nice to have a mental holiday from this junk.
Cheers ā¦ Scott
Scott,
Itās not easy to watch tv with this crap, but i try my best, and can watch tv much easier in bed with my head back - still not that pleasant. I actually tuned in late to Dexter. Only saw this and last season. He was also great in six feet under.
hope youāre doing ok.
Lisa
Iām a HUGE Dexter fan!! This season is greatā¦they all are. Iām lucky that watching TV is one of the few things (and going to the movies) that doesnāt make me dizzy. I better thank Goodness for small favors!!
Hope you are all having a decent day with a better tomorrow.
Maybe we all like Dexter because MAV is our Dark Passenger 
ā¦Something we struggle with every day but no one else could possibly understand.
ā Begin quote from āMelissaHā
Maybe we all like Dexter because MAV is our Dark Passenger
ā¦Something we struggle with every day but no one else could possibly understand.
ā End quote
LOVE Dexter. We usually switch to Showtime specifically FOR Dexter. We didnāt this year. Iāve gotten way into Lie to Me (always did love people watching), the NCISā and CSIās.
Ohā¦and never miss a season of Hellās Kitchen.
I know all about Hellās Kitchen. I stop there every day. I also make daily visits to Hellās Dining Room, Hellās Living Room, Hellās First-Floor Bathroom, Hellās Bedroom, Hellās Upstairs Hallway, Hellās Front Walkway Up to the House, Hellās The-Grass-Needs-Cutting Front Yard, and Hellās Office.
so true, George. right there with you.
George and Lisa,
Iām right there with both you guys 
lisa
ā Begin quote from āMAVNYā
George and Lisa,
Iām right there with both you guys
lisa
ā End quote
Lisa
How long have you been on the medication now and when are you going to try and either add another medication or try a new one all together? It seems to me you would have seen some improvement by now if this was going to make a difference, no? i am so sorry you are having such a rough time.
Which medication do you think you will add when or if you do? Here is hoping your days get better.