My visit with Dr. Hain

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 site…which lead me to his site…which lead me to my “ah ha” moment. I wish it were for something good, but there is some sort of comfort in knowing I’m 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 enough…left with a script. I tried it and after 3 weeks on the 1/3 capsule, I was crying daily and feeling more anxioius…I asked him if I was supposed to get worse before better and he said no, just better. Recommended adding Inderal to the mix…that was too much and I just couldn’t handle being on so many meds. Saw my local P-doc who said maybe we shoudl try a tryciclic. So I’m now on Ami at 10 mg at night and it’s making my dizziness worse, but my daily headaches have subsided. What a trade, huh? So now I’m nto sure what to do. There is a local “headache” specialst in my area that wants me to try ami at night and cymbalta too. I’m worried about Seratonin Syndrome, and also just going through the SE; s of yet another drug. I’ve tried Lexapro, Remeron, Effexor, Inderal and now the Ami. I think it’s like trading some bad problems for another set of bad problems…I know you guys understand. One of my biggest “weird” symtoms is I wake up trembling every morning and have bad anxiety for the first 3-5 hours of the day…it’s terrible. It started about 3 months into the MAV symtoms…

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 it’s 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 didn’t 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. :slight_smile:
My symtoms started out as “dizziness”, but not spinning…just like I felt “high” or drugged. Especially noticed it on restaurant lighting or dim lighting. I never had a headache in my life…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 Neuro…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 “visual flow” and hypersensitivity to what I see. I frequently feel off and it’s hard to decribe. Then came my daily headaches around 3:00 pm. In the mornings they were replaced with terrible anxiety…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)…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 can’t figure out what happened to me because they can’t “See” 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 life…my personality…I am consumed with it and it’s like I can’t 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 “Natural” healing and relaxation. I am trying to hit this thing from all angles…I just am desperate to have my life back.
My symtoms are daily…sometimes the headaches and dizziness get worse or better, but I’ve 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 neurotransmitters…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. You’re in good company here – probably 95% of the people posting here are still suffering from the same illness, and for a long time. I say, don’t hesitate to post whenever you feel the need to, even if just to say “I’m having a really lousy day”; no one will mind your saying whatever’s on your mind.

As for the depression / anxiety / ‘emotional roller-coaster’ you describe, it’s hard to say whether it’s 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 it’s some of each.

For short-term relief, a lot of people (though not all) have tried “benzos” like Valium or Klonopin. A couple of those seem to help me out for a few hours. Have you tried any? They don’t solve things, but they can make the day more tolerable.

Whether you continue with Dr. Hain (who I’m 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 didn’t 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 SE’s for many people.

Are you still having difficulty getting your family to understand your problem or what it “feels like”? If so, some people here (including me) would be happy to help try to give you some ‘suggestions’ (i.e., imagery or words/phrases we’ve 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 ‘motion’, etc?

Anyway, one thing that everyone always says here is that no one’s experience is incurable. It may take one medicine trial, or it may take multiple tries, but you’re bound to eventually find the drug (or drug combo) that solves it. I’m kind of a hypocrite because I’M not very good lately about this whole “staying hopeful” thing, but I have to remind myself it’s 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 “Free to Heal, Free to Love”. I think there’s 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 “one”, 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? :slight_smile:
Secondly, everyone says how impactful meditation is. I’ve been doing it twice a day for 9 days, and I’ve seen a little improvement. I’m 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 plight…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)…anyone else see that? With that being said, Klonapin is a benzo but I always see it listed under anticonvulsants…which leads me to wonder if that mgiht be a good thing for me to try next if I can’t get where I want to go on the Ami alone. If anyone wants to PM me about any above stuff, i’m happy to have the connections…

Hi Rockyksmom,

— Begin quote from "rockyksmom"

Dr. David Simon (medical director there) suggests that 90% of physical illness is rooted in emotion.

— 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 “wrong” emotions going on? Second, saying this to a person implies that it’s their fault that they’re 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 don’t because we happen to have a genetic disease called migraine. While I think it’s 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 “your emotions” 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 it’s 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. I’d 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. I’m into a course right now developed at U of Mass that uses what they call “mindfulness” to accomplish this. I’ve also been trying to make the time for meditation. You’ve been doing much better than me at it. I’m 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. It’s too early to tell but I’m 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 …

Best … Scott 8)

Hello Rockysmom,

While I’m very sorry you’ve 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 ‘holistic’ approach to getting well.

I’m 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 it’s also going to improve the quality of life for people who aren’t “unwell” also. That’s 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 aren’t 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 - I’d 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 “metabolism must chew through this stuff” and that he was surpised I didn’t end up in hospital :lol:

Scott,
I’m 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 I’d often get limited sleep (eg a 15+ hour shift, back on again after 7 hour break). I’m also an insomniac so I’d 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, that’s 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 “sleep hygeine”. 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 don’t like the change. So for us, keeping to routines in all aspects of our lives is good. Just my two cents worth…

Cheers
Vic

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Scott,
I’m going to disagree with you on the sleep thing as being a potential (black) magic bullet.

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Blast you! You’re killing my theory. :lol: Well, for now I’m 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 I’d just run the Boston marathon! So all things going well, it’s lights out at 10.30 pm. Maybe I can will myself into a MAV-free day thinking it’s the sleep that’s sorting me out.

Scott :slight_smile:

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 there’s a valium crushed up in that milk :smiley:

Calm blue ocean, calm blue ocean Ommmmmmmmmmmmm
Vic

quick side note - I love the show Dexter!! so funny that we’re watching it around the world. very cool

Hi Lisa,

I’m 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 “business”. :evil: <-- supposed to be Dex when he’s wound up.

I’m glad you can at least enjoy some TV while feeling crappy with the MAV. It’s nice to have a mental holiday from this junk.

Cheers … Scott

Scott,

It’s 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 you’re doing ok.

Lisa

I’m a HUGE Dexter fan!! This season is great…they all are. I’m lucky that watching TV is one of the few things (and going to the movies) that doesn’t 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 :wink:

…Something we struggle with every day but no one else could possibly understand.

— Begin quote from "MelissaH"

Maybe we all like Dexter because MAV is our Dark Passenger :wink:

…Something we struggle with every day but no one else could possibly understand.

— End quote

LOVE Dexter. We usually switch to Showtime specifically FOR Dexter. We didn’t this year. I’ve gotten way into Lie to Me (always did love people watching), the NCIS’ and CSI’s.

Oh…and never miss a season of Hell’s Kitchen.

I know all about Hell’s Kitchen. I stop there every day. I also make daily visits to Hell’s Dining Room, Hell’s Living Room, Hell’s First-Floor Bathroom, Hell’s Bedroom, Hell’s Upstairs Hallway, Hell’s Front Walkway Up to the House, Hell’s The-Grass-Needs-Cutting Front Yard, and Hell’s Office.

so true, George. right there with you.

George and Lisa,

I’m right there with both you guys :frowning:

lisa

— Begin quote from "MAVNY"

George and Lisa,

I’m right there with both you guys :frowning:

lisa

— 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.