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Old 07-02-2008, 12:03 PM   #1
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charlotte67 HB User
Update month 22

Hi everyone...

It is 22 months since this garbage started...6 months since I started my MAV treatment. I started on 10mgs noritriptlyine...and have now bumped to 40mgs...I am in week 4 of the bump.

I can say this bump to 40mgs has really helped my symptoms. I was facing dizzy head (whirry head), eyes not working properly, motion intolerance, nausea, fatigue, insomnia, facial pain, ear pain, ramped up loads in busy places or bad lighting, ibs-d.

Now after 6 months, I am left with some motion intolerance...but much more slight. I have eye crap...but it doesn't ramp me up much at all...I get on the computer much more..don't notice much in stores. I do still get attacks when I push it...however, they are much, much more minor. Smaller headaches, belly aches...much more controllable.

Daily I exercise 30-40mins, chase after a busy baby, run a home...garden, and have been dealing with a stressful situation with a parent's illness.

I believe I really should make it out of this heck...soon.

Chins up...there is light...just keep looking up.

 
Old 07-02-2008, 12:30 PM   #2
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LookingForInsig HB User
Re: Update month 22

It's great to hear some good news! Good luck and I hope this is all just a fading memory to you soon! Reading your post is inspiring and reminds me to remember that we all can and will get better!

 
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Old 07-02-2008, 01:25 PM   #3
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Re: Update month 22

Hi Charlotte,

I am soooooooooooooooo happy that you are even better than when we talked last!!!!
I will look forward to talking with you late August or sooner.
Speaking of gardening, Japanese Beetles have made their landing in St. louis!!!! It is so depressing when they come for a visit
I am praying for your dad and please give little one a hug for me.
Oh and our e-mail communication was much much earlier than I said during our last conversation. I erased a bunch of e-mail by accident, so i don't have th original start date!!!!

Pam 3

 
Old 07-02-2008, 05:59 PM   #4
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Re: Update month 22

Charlotte--

I am so glad to hear that you are feeling so much better--that is fabulous news! I am so happy that you are able to have a normal, busy life again and are experiencing fewer and fewer symptoms. Way to go!

--Violet

 
Old 07-02-2008, 07:36 PM   #5
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alexiwildchild HB User
Re: Update month 22

hooray charlotte!!! i'm so glad you are doing so much better--that can give us some hope!! i'm so excited for you that the nori is doing the trick! please keep us posted with your progress!! have a happy 4th!!

 
Old 07-02-2008, 09:38 PM   #6
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Re: Update month 22

Hi Alexi, how are YOU doing? I haven't seen you since the moderator shut down the topic of jumpy shaky vision. are you still about the same? I am on Topamax right now, doing about the same, and probably going to add Effexor at a low dose. I hope that does the trick. The 24/7 dizzies are really just plain insane!! :-)

Rich

 
Old 07-02-2008, 11:47 PM   #7
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sheriff56 HB User
Re: Update month 22

WOW Charlotte this is such good news, makes you realise how bad you felt when this are looking better for you doesnt it.
Lets hope the trend keeps going upwards, I'm so happy for you.

Jayne
xx

 
Old 07-03-2008, 10:00 AM   #8
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Re: Update month 22

Sorry your not feeling well Alexis. If it's just the headache, and not additional MAV symptoms, that CAN be dealt with. Perhaps you are starting to have TYPICAL migraine symptoms?? Maybe you need to be on a second preventative to handle the headaches? I'm on the Topamax right now, working my way up to 100mg, and when I first started with MAV, I didn't get headaches. Now I get daily headaches, but usually at night. Hopefully the topamax will handle that. But it looks like I will be starting Effexor along with the topamax next. the doctor is putting me on it as a second migraine preventative to attack the migraine from a second angle, AND because effexor is good at dampening the visual aspects and motion sensitivity, which i have. it's also good for anxiety, which is a big component of mav, so he wants to quelch all of that. he said that if i don't get relief on those 2, he'll add verapamil, and if that doesn't work, we'll try to add some klonopin. if THAT doesnt' work, then we have to start changing some meds unfortunately but he thinks that this will work. so far the topamax isn't doing much, but then again, i'm not on a whole lot of topamax, but the good news is, it's not giving me any side-effects either.

i'm starting to get a new symptom, which is REALLY annoying. my whole head is constantly VIBRATING and it won't stop. it's a low level vibrating that just won't go away, and i really don't know what to do. that's the deal. i hope this med combo works!

I don't have any problems with my hands or feet. Perhaps you have gout? Yeah, I would definitely suggest the blood work to see what's happening there. Could be nothing so don't panic. Just get it soon so you can get your mind at ease. How is the shifting vision? Still there? Out of curiosity, did you have any history of recent travel right before you were hit with the MAV? like a cruise, long car ride, or plane ride? It would have to be a day or so before the MAV hit. Let me know :-)

Rich

 
Old 07-03-2008, 10:56 AM   #9
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Re: Update month 22

Hey, Rich--

I just wanted to pop in and say that I've read that some experts think Mal de debarquement Syndrome is actually just another variation of migraine...perhaps the travel is just another trigger that sets the vestibular migraine problem into motion. That would explain why the symptoms are so similar...I know what it's like to struggle with a diagnosis, and I know you've been comparing MAV with MDDs, so that's why I wanted to let you know (in case you didn't know already). By the way, did you ever get that Heal Your Headache book?

I'm glad to hear you are getting treatment with one of the best...I'm sure you'll see improvement in time.

Violet

 
Old 07-03-2008, 01:17 PM   #10
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Re: Update month 22

Thanks Violet. Yeah, I read that, but for some reason, on all the mdds websites, they don't seem to give it much credit as being a migraine variant, and they treat it as a separate entity. The "vision shifting" phenomenon is what has me the most baffled, and even though I have other symptoms that are quite disabling, the vision shifting is by FAR, the most annoying, and creates a kind of dizziness that literally makes you want to rip your hair right out of your head. The only way to get away from it is to MOVE!!!! But, the motion intolerance and traditional dizziness limits the ability to move, so I am literally in a catch-22. Someone, 2 towns over from me, called me a month ago and said that their boss woke up one morning, and the whole world was shifting, she was dizzy, and she had a lot of light sensitivity. I couldn't believe it. So I got her on the phone, and asked her how long this has been going on. she said a month straight now. So I asked her about the shifting in detail, and asked her to experiment with this, and said to get behind the wheel of a car, and see if the shifting goes away. She called me back and said that amazingly yes, the shifting goes away when she drives. But even still, she is dizzy 24/7. She was diagnosed right away with migraine irconically enough, but got side-tracked with an abnormal EEG. now that they ruled out epilepsy, she's getting on the migraine meds. But here is this woman, with no history of travel, lives 2 towns over from me, and wakes up spontaneously with the EXACT same symptoms as me. That convinced me that the "shifting" symptom IS in fact a symptom of migraine. Just spoke to a few other people who have confirmed this, as this appears to be a "gaze stablization" problem. I have it REALLY bad. This woman friend of mine actually has breaks from it during the course of the day, but she has it at some point every day. I have it 24/7, sometimes horrible, sometimes just bad. So that might just say that my migraine is just REALLY bad.

Yeah, I got the book, read it cover to cover, and it all makes perfect sense. I got on the diet. It did nothing. I'm on Topamax, and so far, no improvement. In fact, I continue to worsen. The anxiety component may be responsible for that so I am trying to chill out as best I can. I don't think I can do that by "will" alone, so the next step is getting on Effexor for migraine and anxiety, and if tha doesnt' do it, the next step will be to add verapamil for extra migraine support. If that doesn't work, i'll add some klonopin for extra anxiety support. That covers everything in the "MARD" (migraine-anxiety related dizziness) reports that I have seen, so hopefully this combination, or some combination will work. Thanks agian. I was very close to just blowing my head off!

Rich

 
Old 07-03-2008, 02:03 PM   #11
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charlotte67 HB User
Re: Update month 22

Rich interesting..I have vision shifting...I feel much less when I am driving. Interesting.

 
Old 07-03-2008, 05:44 PM   #12
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Re: Update month 22

Hi charlotte, didn't mean to hijack your thread. Sorry about that. I'm just noticing that this "shifting" symptom, which doesn't seem to be common, or at least commonly reported, DOES seem to be a symptom of migraine, and not just a symptom of mdds. Then again, as pointed out to me recently, it is believed by some that mdds is simply a migraine variant ANYWAY, and that the motion from the cruise or other voyage was simply the "trigger" for the migraine.

Charlotte, is just seems like the brain can't process the shifting when we are moving, and it has nothing to do with the brain's adaptation to motion, as previously thought. I just can't believe that. If that were the case, then ALL people with this vision shifting problem would have gotten it as a result of exposure to motion, which at least a handful of people I have spoken to have told me is not the case for them. You would make #5 confirmed. However, are you sure that your migraine situation didn't come on immediately after exposure to a cruise, long car ride (more than 2 hours), plane ride, or high speed elevator)? You would have the symptoms within minutes of getting off so you would remember. if not, you are another confirmed case of "vision shifting" with NO exposure to motion. The mainstream idea about thie visiion shifting from a "mal de debarkment" standpoint, is that the brain has somehow learned this false motion while being exposed to it, and when the motion stops, the brain still thinks the body or environment is moving, or something to that effect. BUT, if this can happen spontaneously to people, and you would be case #5 confirmed, I think we can expect that others are out there as well, as I am only one person searching for others with this symptom, and I don't get around much lol. So, there MUST be many other mav'rs with this symptom. I may start up a poll to see how many mav'rs experience this. But even then, the poll won't be accurate because not every person with mav is on line. But it's a start. I'm starting to believe that the shifting vision is simply some sort of vestibular imbalance in the brain, caused directly by the migraine, and not some sort of "adaptation" problem. So in other words, make the migraine go away, and the shifting should stop. It's one of my WORST symptoms, and I PRAY that I am right about this. Anyway, sorry for the novel!

Rich

 
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