The accomplishments of an intractable MAV patient

Hi guys, I wanted to just alert you to a post I made in the “members pictures” area, which may not receive much attention these days. I posted some photos of some of the attractions I have built for my haunted attraction this season. I explain more in the post. I just wanted to show that even someone with intractable MAV can still get out there and accomplish a great deal! Granted, I have topamax now in my corner, but I still have MAV, I still get triggered and have to deal with my MAV days, and I am also a stay-at-home dad with two year old twins, one with a disability. Even with all that, I manage to get things done :slight_smile:

Rich

Rich,

I saw the website. Nice job – it scared the p*ss out of me just clicking around on it. If I walked into that thing I’d probably go out the other end on a stretcher from a fear-induced MAV attack! :lol: Good job getting all of this done after the nightmare you went through.

Scott

Thanks Scott. I posted the information because I just wanted people to see how far they could come in such a short amount of time. I am going to post the “other side” of this as well,…the photos of me when I was sick. They are just me sitting around doing not much lol because i couldn’t. The difference, to me, is staggering because before, if I had attempted this, my head probably would have exploded lol. Now, it’s like it was before I got sick, not a challenge at all. I remember seeing friends post photos of their pet projects on other forums when I was sick and I remember thinking “how the heck did you even negotiate that”? Of course, they don’t have MAV which is how they did it lol.

My only point is, to anyone reading this is, if you are down because you can’t do much, there IS life beyond MAV. Of course, there are plenty of others who have figured out how to live despite this thing, but still others haven’t, feel they can’t do much, and I just wanted to share the possibilities. :slight_smile:

Rich

Wow Rich!

I just checked out your website and pictures. That is amazing! I have to admit…it actually looks a little too scary for me :slight_smile: It’s great to hear how well you are doing and how far you have come. I am looking forward to Halloween and trick-or-treating this year. Last year, I was a complete mess on Halloween and struggled to get through it. I think you’re right, it’s important for people to believe that there will be a life (and a good one!) when they get their MAV under control. Hang in there everyone! Thanks for the positve post Rich!

Thanks Colleen! I remember last Halloween, I was much better, but still not where I am now. I was able to enjoy most of my haunt season, but leading up to it was just a disaster lol. I am looking forward FAR MORE to this season now that I am much more under control. I just thought I would put some photos to the phrase “holding 90% on topamax”. I hear others saying that they are doing pretty well also but sometimes a pictures speaks a thousand words! If I had saw last year what I was going to accomplish this year, I would have broke down crying, but smiling, saying “oh my GOD, I’m going to get out of this mess!! I can’t believe it!! It’s actually going to happen!”. I have read a few posts from people asking if they are ever going to get out of this. My answer is a resounding YES!! It’s just a matter of when it will happen for them :slight_smile:

Rich

Thanks for posting that. I am so grateful for your posts. I hope that one day I, too, can improve and give others hope like you’re doing. You are a good person, and I am so glad you have your life back. I actually have a question: I know you said it took 4 mos for the med to work. Was the improvement gradual or did it hit you at the 4 month pt. I know we’re all different. but, I was just curious. Thanks so much.
Lisa

Wow, Rich! Awesome pictures! :slight_smile: I’m so glad to hear that your still doing well. I am much better, but I am hoping one day all my sypmtoms will disappear, especially when walking and I’ll be myself again!

Rich, most impressive! You’ve already had your own “horror” experiences with the MAV, so this should be nothing for you! LOL. I was especially impressed that you used actual props from the movies, not reproductions. I think that place would scare the bejepers out of me! Good luck with it and glad you are feeling so well.

Cheers, Bonnie

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Thanks for posting that. I am so grateful for your posts. I hope that one day I, too, can improve and give others hope like you’re doing. You are a good person, and I am so glad you have your life back. I actually have a question: I know you said it took 4 mos for the med to work. Was the improvement gradual or did it hit you at the 4 month pt. I know we’re all different. but, I was just curious. Thanks so much.
Lisa

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Hi Lisa! Thanks very much. The topamax worked gradually. I’ll lay it out for you. For example, at first, it would show up as me having a one day break from my 24/7 misery and then going back to the MAV crises again. I never had breaks so I thought this was definitely a good sign. I would just generally feel a little more “resiliant” on that one day. The next day though, I would be back to square one, and it would be a while before getting that day back. Next, it would manifest as an increased ability to do a little bit of work. Doesn’t matter what kind…changing a tire, changing a light bulb, and I wouldn’t suffer for it the next day. That was another big step. Before, anything I did one day would show up the next day in the form of being brutally beat up, and having even worse head symptoms. Once the topamax started kicking in, I was still suffering, but I seemed not to suffer for the things I pushed myself to do the day before. I would simply “reset” the next day. This was another indicator that something was happening for me, and I had to stick this out! The next step was that a few symptoms actually just stopped. The head vibrations were the first to go. Well, actually, not really. interestingly, the “rocking” sensations stopped early on in the topamax treatment which is one of the reasons I continued it. Nothing else budged but the rocking stopped maybe 2 weeks into treatment. But after the 4 month period, the head buzzing was the first to go. Then the brain fogginess. The de-realization. Before I knew it, I was feeling normal most days, with set-backs every 3rd to 4th day. As the weeks went on, I had more and more good days until I had my first “perfect” week with no major MAV incidents. The following week I had a set-back, but I didn’t think much of it. then it was 2 weeks of being normal. Then 3 weeks. At this point, having a set-back felt almost “abnormal” because I was used to being well. I would start to question if I was well or still sick. But after looking back on my progress, and seeing that every set-back ALWAYS resolved, I realized this was normal. Now I only have maybe 3-4 days of MAV per month, and they consist of light sensitivity for the most part. If i have a bad set-back, I might have some slight tunnel vision, or feel slightly funny in the head, but that is the extent of it and I am fine in a few days. And during the MAV flare-up, I am not stopped from doing anything I need to get done. It’s maybe a 30% flare-up because of the topamax. So, much like it works with headache, it has reduced my MAV by 90% and has made the flare-ups far less as well. I don’t think I have heard of too many people waking up instantly well, but the signs are there as you can see, and you just KNOW you are on your way! Sometimes I don’t have a lot of time to come here, but I try not to disappear, because when i was in pain, there was nobody here saying “I got well, and the medications work”. I found those people, but it was difficult. My good friend Joe on the forum here introduced me to one person who choses not to come to the forum. She got better on prozac and Toapmax. She got it bad as well which is why she needed two meds. But she’s fine now. Another woman named Stephanie used to post here. She got well on just Effexor but she hasn’t been back since. You really can’t blame them because they are out living life, but i wanted to make sure I at least made an effort to come back, and let people know that this IS manageable. Also, Brian is still here too I believe and I am pretty sure he is pretty managed with his depakote and klonopin. So, as you can see, all these meds work! It’s just a matter of what you can tolerate and what works for you! I hope that helps

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Wow, Rich! Awesome pictures! :slight_smile: I’m so glad to hear that your still doing well. I am much better, but I am hoping one day all my sypmtoms will disappear, especially when walking and I’ll be myself again!

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It’s good to hear from you! Just saw your post I was about to reply! Glad the Nortrypt is working for you! Even though I am at 90-95%, I still have a lingering symptom which I am hoping will disappear but I ignore it. It’s not the end of the world, and I guess we all can’t be perfect. But I had SO MANY symptoms, it’s a miracle they are all gone but this one (just a visual appearance that everything is shifting around in my visual field a bit. But it only does it when I am standing still). Keep up the good work :wink:

Rich

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Rich, most impressive! You’ve already had your own “horror” experiences with the MAV, so this should be nothing for you! LOL. I was especially impressed that you used actual props from the movies, not reproductions. I think that place would scare the bejepers out of me! Good luck with it and glad you are feeling so well.

Cheers, Bonnie

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Hi Bonnie, yeah lol, you’re referring to the attraction I have called “The Horror Museum”. Everyone loves that attraction. I’ve been collecting original props and costumes from the movies since I was 15. I took a break last year and even sold one or two pieces when I was really sick and needed the money for doctors bills (that was a shame), but now I’m back to being able to buy more for the museum. The haunt is definitely scary lol but it’s also a lot of fun. I’m enjoying building it for this season. I’ll make sure to post the final haunt photos when customers are coming through this season,…just for fun :wink:

Rich

Hi Rich,
I too wanted to thank you so much for staying involved and sharing your story and success. I am so happy that you have gotten your life back and can live as you did pre-MAV. Must seem like a dream come true!
Keep up the good work.
Best,
Lisa

Rich,

Thanks so much for explaining your trajectory toward better health. Just wondering - did the improvements start when you were at the dose you are at now, or on lower doses too? Perhaps you reached the 50 mg (I believe that is what you’re on) fairly quickly. When you say the “rocking” stopped, are you referring to the disequilibrium (feeling like on a boat when walking)? Although I have many terrible sxs that is my worst by far.

Thanks again,
Lisa

— Begin quote from "MAVLisa"

Rich,

Thanks so much for explaining your trajectory toward better health. Just wondering - did the improvements start when you were at the dose you are at now, or on lower doses too? Perhaps you reached the 50 mg (I believe that is what you’re on) fairly quickly. When you say the “rocking” stopped, are you referring to the disequilibrium (feeling like on a boat when walking)? Although I have many terrible sxs that is my worst by far.

Thanks again,
Lisa

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For me, the only improvement on the lower dosage was the stopping of that one symptom, which happened at 12.5mg. For me, the rocking was the sensation of movement while sitting or standing still. You could call it disequilibrium but mine had a distinct rocking sensation. I actually didnt have too bad a time walking although I always felt like I was walking on sponges and I would have feelings of being shoved, pushed, and also would get “dips”, “elevator drops” and various other sensations that brought me to the point of madness. Because of that, I could never walk far or for too long, but I never felt like I would fall or anything like that. Those were just a couple of the dozens of symptoms I had. I was a mess! I actually reached a maximum dosage of 62.5mg but suffered bad breathing problems and had to lower it back to 50mg. When i reached the 50mg the 2nd time and the breathing got better, I knew this was all I could take so I just waited it out. It took an additional 2 months at this dosage to get the benefit so it was an overall slow process. At first I thought it was going to happen fast when the rocking stopped at 12.5mg, then I got no more benefits until just about 4 months later when I lowered the dosage back down to 50mg. I just couldn’t tolerate the higher dosage. For me. 50mg is the magic number :wink:

Rich

Thanks so much for the response.

Thanks Rich for pointing out the success stories on the various meds. I would also like to add Nance to that list as she is still doing well on Verapamil. It took her a number of months to get to that point, but she is out living her life as well.
Here’s to success to us all one day!
Lisa

I want to thank you Rich for making me laugh out loud last night when I was looking at your website! Your haunted house and everything that goes with it looks like so much fun! I don’t laugh that much these days because I am feeling pretty crummy. It was nice to feel happy- if only for a moment… thanks!

Claudia

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I want to thank you Rich for making me laugh out loud last night when I was looking at your website! Your haunted house and everything that goes with it looks like so much fun! I don’t laugh that much these days because I am feeling pretty crummy. It was nice to feel happy- if only for a moment… thanks!

Claudia

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I’m glad you got a good chuckle Claudia lol. If you saw me last year, I basically had these HUGE old man sunglasses on and I just basically sat around doing nothing with a big sour puss on my face because I was physically incapable of doing it. And if I tried, I suffered so badly with even MORE symptoms the next day and probably for 3-4 days afterwards until the symptoms calmed down to the usual crappy 24/7 stuff. It was aweful. It was like being at a “10” on a scale from 1-10 in sickness, but if I tried to push myself, I’d skyrocket to a 15 for a couple days and then settle back down at a 10. It was crazy. Then, enter Topamax, and “Vola”! Now I can do all these crazy things lol you see. So, don’t dispair. If my insanity can be broken, so can yours. Are you on any medications? :wink:

Rich