Hi charlotte,Scott,HBEP,ADAM,:

Charlotte:

Great advice and great attitude on the other thread..... Half the battle...None of us want this but we need to do what we need to do... I replied the same post but figured I would start a new thread. I am trying to stay off the boards and try as best as possible to move on with my life

How are you feeling on the Meds... I am like 85% to as high as 95% on certain days.... So me bad days still but I am learning that this is par for the course and not make things worst with stress and anxiety. Not easy but I am getting there.

I am going up on Zoloft one more time to 100 Mg's this week so hopefull that kills the rest and gets me to 100%

My support group is once a month with MAV patients in NYC. Second Support group is next week. Very informative and a lot patients that are a lot worst and severe. There is a lot of research being done. They are close to a test for Migraines.. A lot of the research to get a med is what Adam has stated that they feel this is genetic. Research is all over the world What my doctor explained we are born with Over Active or Hypersensitive Trygenial Nerve. This is connected to the Vestibular Nerve thus our symptoms. It can also cause seratonin problems thus why a lot of us are treated with SSRI's and have a secondary anxiety and depression condition. Very interesting. He is a Migrainer as is every doctor on his staff. His 2 young children get Migraines

He reccomended Biofeedback and it has helped with my anxiety and help me develop a more realistic positive attitude. What he says is a lot of young children have migraines and they dont want to do drug trials on 8 year olds so they work with Biofeedback and Accupuncture...
a lot of meditation or Lamaze based. It has helped me to cope on bad or frustrating days

I asked him about the food triggers and he said everyone is different... I cut everything out for the most part. I like coffee and asked him. He said 16 0z of coffe a day or less should be ok. Have half decafe. But just like some meds work for some and some do not. It is trial.. If you like your tea and coffe try at a minimal basis.

He is doing the first news report on MAV on CBS NY to try to create awareness.

Very proactive doctor

Continue good luck.....


Howie

Hi Howie,

Really interesting post. Sure wish I could come along to a meeting like that!

I know you're trying to stay off the board lately but if you can find the time to post any new bits of info such as:

>>> we are born with Over Active or Hypersensitive Trygenial Nerve. This is connected to the Vestibular Nerve thus our symptoms. It can also cause seratonin problems thus why a lot of us are treated with SSRI's and have a secondary anxiety and depression condition.

That would be great. Good to hear it from the horses mouth! Hope the higher dose of Zoloft does the trick for you. I'm not doing too badly considering I'm sitting on 10 mg of cipramil. I added in a magnesium supplement with some B vits in there too which has definitely perked me up quite a bit. Mood is fine and no anxiety but a lot of achiness and headaches lately. Very reactive to foods too. Such a bore.

Later ... Scott :cool:

Sure thing Scott:

I will pass along anything as we are one big happy family.

Glad your fighting away... All we can do.... Lifestyle change. We try to to do the best we can under the circumstance. Life gave us Lemon so we make lemonade...

I am trying my best to change my entire attitude and mindset with CBT and Biofeedback. If I can conquer the mental stuff I think the physical stuff will take a back seat to enjoying life..... Their will be non-linear times but thats ok as long as I make it ok

Best,

Howie

Howie..you rock!

Totally great for doing what you do. We have to make changes. That said, I am joggin now..and am going to try and run a 5 k. Prior to meds, I would have never even tried it. When I wake up feeling wonky I don't push it...or take it easier...

What else can we do.

How does work affect you both? Do you tell work superiors so they know what is going on?

All the best to you.

Charlotte:

You have come a long way. I run 25 to 30 miles a week alos. I do not get dizzy anymore so it does not affect me. I lost 20 pounds and lowered my cholesterol from 300 to 200 but cutting out red meat and eating good. I get nausea , head pressure and that is it now. No more vision problems either. Only in a certain area like a big mall...oh and the anxiety which I am working on myself

as far as work, people know. I have had this for 4 years with 1.5 stable. However there are days were I get nausea bad and anxiety but I try not to complain. I used to in the begining when I was anxious and scared . I have a pretty high level job. I am director of finance for a county govt in ny . I have a 19 month old and we want more soon. Been married 5 years. So really I have no choice as I need to get my act together whether I like it or not. My wife works but I have a lot going on between work and home. With that said some days I breakdwon and need someone to talk to at work. Everyone is very understanding but I do get my work done and hide a lot of frustration.... been coping much better lately with the biofeedback and the support group when 1 time a month I will see and talk to real MAV patients and doctors.

keep up the good work and remmeber with mav it is not linear you will have bad days and weeks but as long as you are on track and are gettting on with life that is half the battle. It is sometimes 2 steps forward and one back

This relapse stated in october so its been slow but I have days and weeks with 90% to 95% and other days like 75% at worst

Howie

Howie...how kind you are for sharing so much of your journey. We have a 17month old...so I totally know what you are talking about. The lack of sleep, the stress. We too want more children..i get worried because mine hit me when I was 8 months pregnant. That said, do I want this head monster to stop me in my tracks...no.

I still get woozy feelings when I move, not every moment then. My eyes feel strained and not "locked in" if that makes sense?

Can I ask...how long did it take to lose that woozy/dizzy feeling...and how long to lose the eye crap(what type of eye crap did you have)?

Thanks ever so much for your help.

I was never really woozy or dizzy....I had blurry vision worst at night and sometimes jumpy vision when I read. Yeah what you are saying makes sense. You are getting relief but you have not broken the Migraine cycle . Vision problems are very common but vary with all of us with Migraines. Once you break the cycle it should ease. Anxiety and stress can also aggrevate the symptoms. Deep breathing, meditation and temple massages sometimes relieve the vision temporarily....Eye strain will be common as your head has pressure and thats right where your eye's are. I am on the computer all day at work so I often take breaks and breathe and change the focus of my vision

The vision was the last to go first time and first to go this time so who knows there is no straight forward method. I mean I was on 50 mg's of Zoloft last time and this time 100 and even though better still not where I was on 50. One thing CBT and biofeedback is teaching me is roll with the punches. Take your meds, keep active, live in the moment. Over analyzing will drive us insane as we are all different and every week to day can be different...just give it time and you may need to tweak meds or add things but your doing everything you can.

your on the right track

we will have more kids soon.....that still works pretty well LOL

Great advice! Thanks so much.

I am hoping to break the cycle. We too will have more or so I hope!

Thanks again!

Howie..thanks for that information.

Today my daughter gave us a scare...My anxiety jumped...and I felt really gross. I know what you mean about it making you feel worse.

I was going to say...I have been on the meds almost 3 months. I have noticed so much improvement. That said, everything is much milder...even when I ramp up it isn't as bad.

What is left is this fuzzy head, woozy feeling, eyes feel stiff and when I look perepherally (sp?) it feels wierd like things are moving..vibrating?

I guess I wondered how long it took you from starting meds to feeling 100%? Am I better..heck yes, and I totally agree to live life now..in the moment. That said, hell...I really want my old self back. I felt like crap today... Did you get bad bits even until you felt back to 100%? Did it just slowly go away and finally there you were at 100%?

Thanks so much...

Yeah that is about right. There is no timeframe as you never know what the correct dosage is till your there. I am on month 6 of this relapse from coming off the medication. Am I better yes. Do I still get symptoms almost every day just some days very mild and non existent yes. Do I get bad days like when I dont seep or anxiety yes.....Anxiety is a problem with me...but I am coping and handling better

The first time I was at 100% it just happened you start to think about it less and then months later your like wow no symptoms for a while. But different things trigger brief moments

everything you explain is normal but the timeframe is hard to pin point as we all are different and take different medications and different dosages, lead different lives, handle stress better than others

you are explaining the normal process

Hey Howie,

>>> ... and sometimes jumpy vision when I read.

I suddenly realised this morning that I have this going on too. It only seems to be bad when I first wake up in the morning and can be avoided if I move further away from whatever it is I'm reading. You know, I think I had weird visual stuff like this going on long before the dizziness started - and always within a few hours of waking up if it was going to happen. I just paid no attention to it and so haven't brought it up until now.

Can you stop the jumping vision by moving further away from the text?

Scott :cool:

Scott:

not sure but I'll try that.... Usually when that happens to me I just stop for a moment do some breathing and relax so I do not get any anxiety stirred up. However what you are saying makes sense that if it jumpy it is probably due to the fact we are close and that disappears when we move further away. I'll check it out

I am going to bed only slept 4 hours last night due to my son being up and starting the increase on Zoloft... Today was a little rough due to the lack of sleep. I am going to bed early tonight

Howie

Teething Howie? I have some remedies if you need them...I know what you mean about being off if sleep is off...

Charlotte:

My little man Mason has all his teeth so I am over that...just one of those nights. I slept great last night went to bed at 8:30 woke up at 5:30 for work....

Feel much better...just some mild nausea which really for me seems to me the last and most annoying symptom...

I have my 2nd support group tomorrow night so IK will bring that up

I dont notice many food triggers but 3 triggers I notice for me are 1) sleep 2) to much heat 3) anxiety or stress

Well glad to hear things are better...I notice Chocolate, heat (got really ramped up after a hot tub soakin), lack or too much sleep.

I wish I could figure out more but it is not easy.....

I am hoping the increased Zoloft kills the Nausea...Maybe it is anxiety related....Either way very annoying