I may have spoken too soon

Specific Illnesses & Conditions VM/MAV
1

Hi Guys,

Well, after three weeks happily symptom-free, things went bad on Friday. Really quite bad - bad anxiety, nausea, de-realisation, light/foggy/heavy head etc. Actually had to terminate my shift at work and go home early. Saturday not as bad but still not great, valium helped. Sunday really bad with the anxiety, valium helped again. Today, touch wood, not too bad. Hopefully things will stabilise as on Thursday I have a 24 hour flight to Finland.

As to what set it off, I don’t know. I did have a couple of glasses of red wine (I know, I know) and have had a bad cold, and hormonal stuff (of the monthly variety) - so maybe all that together was too much for the old brain to handle.

Anyway, I’m keeping my fingers crossed and thank God for valium!

Victoria

2

Hey Victoria,
Stay postive! You’ll bounce back. You might have just overdone it. It’s easy to do when you’re feeling good. I’m always careful around that time of the month…if I am going to feel any dizziness, that’s when it will hit (not bad, just kind of lightheaded, background dizziness) So, I try to watch my diet, sleep, etc. so I don’t push my triggers too much around that time. Each month is getting better and better though. You’ll get to the point where you can loosen up a bit, it just might take a few months. Hang in there!!

Colleen

3

Hey Vic,

I think it’s almost certainly got to be the virus. Viruses (as you know) can really trash me with dizziness and anxiety. The wine may have been just a little bit of extra MAV trimming on the cake. Keep the faith and I think it will vanish again. The good news is that you had 3 great weeks … a really good sign. I should also point out that when I was driving out in WA in 2006, I was nearly feeling 100% (was on Cipramil then). I got hit with a heavy cold virus near the end of the trip and it was like I was back at square one with heavy dysequilibrium, anxiety … blah … and it cleared again after about a week.

Have to agree with you on the valium. I’d be dead without it; it’s the only drug I’ve ever found to be hugely effective yet without side effects.

S 8)

4

Valium aka grannys little helper lol

5

Just to agree with Scott, the cold will have taken you down for a bit - you will bounce back. I know someone who has been clear of this rubbish for years, now drug free and still doing great, but even she has a couple of dizzy days now and again when hit by a virus. A virus can set me off too. As Scott says the anxiety and wine are probably revving it up a bit too. Try and stay calm - easier said than done I know, get the anxiety under control as best you can and i’m sure this will pass.

H

6

Hey guys,

Thanks for the feedback - yeah, I think the cold was not helpful, nor was the wine… hmm, no-one to blame but myself there! All seems to be OK again now, thank goodness, as off to Finland tomorrow. It’s about as far as you can go from Australia before you start heading home again (24+ hours) so fingers crossed!

Thanks
Victoria

7

Yay!!!
Have a great time…lisa

8

I can tell you from personal experience being far improved with MAV that I have “mini crashes” once in a while that ALWAYS resolve. you could have just had one. I’ll be fine for weeks and then all of a sudden I’ll wake up and be like “darn, I’m triggered! what did I do?” I’ll always try to figure out what i did lol, and 90% of the time it’s because I didn’t sleep well the night before or the night before that, but sometimes it happens for reason I can’t identify. The key is simply to ignore it, go about your business and eventually, it passes. Again, this is if your MAV is generally under control and you are having more good days than bad. So I ignore it and after a day or two, sometimes 3, the trigger load decreases and I am back to my usual self again :slight_smile: I have had it happen many times since I have stablized. The first time it happened, I thought I “relapsed”, but I got better. The second time it happened, I thought maybe I’m still sick lol. After several months, I started to learn that this is my new “normal”. Out of 30 days in a month, I’ll spend 3-4 days in MAV land, but even still, the MAV is far less than before being on the topamax so it’s very manageable, and nothing stops me from my normal days. I think just ONCE since being “well”, i had a pretty decent set-back that made me think I was sick again. It happened during a stomach viruses and I was having diarhea a lot. It turned out I wasn’t absorbing my topamax so the symptoms were coming back again. it was scary. But as soon as I got better, it took about 5 days and I was back to normal. It made me realize that MAV is probably wired into my brain chemistry for life, and topamax is really keeping me on an even playing field with it. It was crazy. I was having the motion sensitivity, “visual sensitivity” (that’s the worst!), and I could barely negotiate anything visually. It took 2 pairs of sunglasses to cool it off lol. But, as the med was aborbed again, it all went away. Anyway, the point is, we all have set backs, even when we get well. So if you are having more good days than bad, try to ignore your bad days as best as you can, because if you give into them with anxiety and such, you will simply fuel more bad days and more triggers. Letting go will allow your trigger load to lighten and you will get better quicker. I have learned to finally do that. It’s hard. I know lol. You’re all wacked out after finally having a good taste of normality so the anxiety actually hits you harder. But when the symptoms calm down and you see that you eventually DO normalize, you realize that you aren’t stuck that way and you won’t relapse that badly again. Anyway, I hope that helps. I assume you are on a med that is keeping you somewhat stable and you just had a little setback?

9

Rich:
I agree with you about trying your best to ignore the MAV as best as you can. I try to go on with my life and learn “coping” skills. I know if I am sitting at my desk in front of the computer and the bobbing, tipping feeling gets bad, I just need to get up and walk for a while and then go back to my computer. I have had some of the florescent lights removed from above my work station, sometimes I go to the restroom and put cold paper towels on the back of my neck and that makes me feel better. When all this started from almost 3 years ago, I was afraid to get off the couch, but I am tired of missing out on life. A couple weeks ago I went to a Jimmy Buffet concert. The loudness and the bright flashing lights did bother me, but I really enjoyed the concert. I took it easy for the few days after, and I did feel off balance, etc. but it is not as scary when you know to expect it. I try to keep to my regular routine, yoga, working out at the gym, etc. It does make me feel better.
I think a huge part of this is the anxiety it causes, it just “feeds” the migraine state.

Good luck to everyone, just take it one day at a time.

10

Rich and Joan,
Thank you so much for these incredibly wise and kind words. I am far from where you guys are, but I am trying to navigate the world a bit more. Just a bit, such as short trips to supermarket, getting a haircut, etc… yes, very exciting life I lead. I always get so demoralized as anytime I go into a busy environment such as these my symptoms exacerbate from my pretty bad baseline. I get so upset and beat myself up, thinking I will never be able to do these simple things in life that others can do so comfortably. I will try to apply your words to where I am in my journey as well…
Best,
Lisa

11

Such an encouraging post, Rich. I appreciate that you write, even though you are doing so much better. I hope to do that one day as well. I cannot wait until a med helps me as well. you also verbalize the difficulty processing visual information well. I have so much trouble explaining it. It feels like sensory overload; my brain just cannot process visual info. That is definitely one of my worst symptom, but nothing has been as debilitating as my disequilibrium. anyway, thanks again, Rich.

Lisa - I, too, feel very saddened after I leave a store. It is one of the worst experiences I could imagine. But, I guess we just have to expect it to be bad for now, and not beat ourselves up. It is very difficult, though.

12

Hey Rich,

What meds are you on? Would love to know.

Best,

Emma

13

— Begin quote from “Joanmac”

Rich:
I agree with you about trying your best to ignore the MAV as best as you can. I try to go on with my life and learn “coping” skills. I know if I am sitting at my desk in front of the computer and the bobbing, tipping feeling gets bad, I just need to get up and walk for a while and then go back to my computer. I have had some of the florescent lights removed from above my work station, sometimes I go to the restroom and put cold paper towels on the back of my neck and that makes me feel better. When all this started from almost 3 years ago, I was afraid to get off the couch, but I am tired of missing out on life. A couple weeks ago I went to a Jimmy Buffet concert. The loudness and the bright flashing lights did bother me, but I really enjoyed the concert. I took it easy for the few days after, and I did feel off balance, etc. but it is not as scary when you know to expect it. I try to keep to my regular routine, yoga, working out at the gym, etc. It does make me feel better.
I think a huge part of this is the anxiety it causes, it just “feeds” the migraine state.

Good luck to everyone, just take it one day at a time.

— End quote

That really is the key (again, once you are under control) because anxiety is such a huge trigger that you can end up stacking up your triggers and messing yourself up for many days or even a week whereas the setback might have just been for a day or two if we just “road it out” lol. It’s good that you are doing that too. we all freak out at first, both when MAV hits for the first time, and when we have our first set back when we are doing much better. Good for your for getting to the concert!

Rich

14

— Begin quote from “MAVNY”

Rich and Joan,
Thank you so much for these incredibly wise and kind words. I am far from where you guys are, but I am trying to navigate the world a bit more. Just a bit, such as short trips to supermarket, getting a haircut, etc… yes, very exciting life I lead. I always get so demoralized as anytime I go into a busy environment such as these my symptoms exacerbate from my pretty bad baseline. I get so upset and beat myself up, thinking I will never be able to do these simple things in life that others can do so comfortably. I will try to apply your words to where I am in my journey as well…
Best,
Lisa

— End quote

No problem whatsoever. I read your post here and think to myself, wow, you are getting out to get haircuts, the supermarket, etc! When I first had my big MAV crash back in January last year, I could not go anywhere! I was completely housebound for the first few months and in fact I spent much of my time in bed. I look back and I can’t believe just how bad it was. The first time I got out, it was to rent a video. I just went there, got the video, and came straight home. I had to sleep for 5 hours before I could even watch it because I was so exhausted from dealing with the disequlibrium, the “spongy” feeling of the ground, the “visual sensitivity”, like having the world coming at you at 100mph but the reality is that everything is normal, and you simply can’t process the information, and the intense light sensivity. Those were just my surface symptoms. Nevermind the valsalva induced dizziness (like from blowing my nose, coughing, bending over, going to the bathroom, etc), brain fog, head vibrations, ear pressure, my God I could go on and on. So, the fact that you are getting out is a good thing, even if it’s only on a limited bases. I was so disabled I thought I was done for sure. I couldn’t walk more than 8 or 9 steps in a row without feeling like someone was violently shoving me in various directions, or feeling like the ground was falling out from underneath me. I would almost fall over in the shower. The point to my rant is that now, I can do just about anything. I do manual labor for hours on end and I feel nothing :slight_smile: If I can get well, I honestly believe that anyone can. I do consider myself to have been a particularly violent case, as did my doctors at Johns Hopkins. The key is of course not to give up, and to not believe, but KNOW that you will get better if you keep trialing meds, and keep working hard to make sure that this thing doesn’t win. If you do, it can’t win, it just can’t, because eventually you will find your med or med combo. I’ve seen some sick people here, people sick for more than 5 years become very well just by finding the right medication or combo. Keep at it!

Rich

15

— Begin quote from “MAVLisa”

Such an encouraging post, Rich. I appreciate that you write, even though you are doing so much better. I hope to do that one day as well. I cannot wait until a med helps me as well. you also verbalize the difficulty processing visual information well. I have so much trouble explaining it. It feels like sensory overload; my brain just cannot process visual info. That is definitely one of my worst symptom, but nothing has been as debilitating as my disequilibrium. anyway, thanks again, Rich.

Lisa - I, too, feel very saddened after I leave a store. It is one of the worst experiences I could imagine. But, I guess we just have to expect it to be bad for now, and not beat ourselves up. It is very difficult, though.

— End quote

I remember listening to others on the phone, and even a few posts here from people saying that they got well, and I said to myself,…what about me? I am such an absolute DISASTER!! Now I am well, or as well as I think I can expect, which believe me, is MILES from where I was just this time last year. I don’t think it’s a matter of IF you and others will get better, I think it’s just a matter of WHEN it will happen. WHEN will you find your medication or medication combo? WHEN will you find your main triggers that keep your trigger load high enough to keep you in 24/7 mode? It’s a matter of WHEN. I found a very important trigger for me. Three of them really. Sleep, sleep consistency, and stress. If I keep a “schedule” and also sleep WELL, there is very little that is going to trigger me, including food. See, even if I get 10 hours a night, it does me no good if it’s from 11pm-9am one night, an then 1am-11am the next night. If I do it exactly the same every night, and also take my med every night at the same time, I am not triggered about 27 days out of the month. Not even weather bothers me anymore. I think the key is first to find a good medication. After that, it’s easier to find your triggers because you will NOTICEABLY go from well to crappy and you will have a better chance of finding out what is doing it to you. Right now, with the MAV not under control, you have symptoms 24/7 so it’s difficult to find out what is triggering you. That’s just the way I look at it. That’s just the way I have experienced it. Others might have a different view.

Rich

16

— Begin quote from “emmasaga”

Hey Rich,

What meds are you on? Would love to know.

Best,

Emma

— End quote

Hi Emma,

I am on 50mg of topamax, which is HALF the recommended dosage for MAV. I didn’t need the full 100mg. 50 did it. The reason I stopped, is because if I go higher, it induces asthma. At this dosage, I have no side-effects. It took 4 months for the drug to work by the way. A long time but well worth the wait!

Rich

17

Rich - that makes a great deal of sense about the triggers. Right now, with 24/7 misery, it is nearly impossible to figure out my triggers.
Was the improvement gradual, or did you just feel better at about 4 mos. I know everyone is different. Just curious. Thanks again for keeping us posted on you. It means so much.
Lisa

18

It was gradual but it was noticeable. There were no two ways about it! The head symptoms went away first (head vibrations, head fogginess). next, my ability to visually track objects improved. By the summer of last year, I was about 60% better but having relapses a few times per week. Now, I have mostly a normal month with only a few days that are “off”, and those “off” days are not bad at all as mentioned. It takes time. But I realize that MAV is tied into my brain chemistry and topamax is simply keeping me from getting “Triggered”. I still have MAV and I know that. So I will never stop taking Topamax. I will take this drug to my grave :slight_smile:

Rich

19

Hi guys,

I was just re-reading this thread as I’ve been feeling a little despondent that despite now being up to 125mg of Prothiaden (to go to a maximum of 150mg this weekend) I really haven’t been feeling much better, even a little worse. Last night and this morning were particularly bad - lots of nauseating vertigo, racing heart palpitations, anxiety, brain fog etc.

BUT, what has lifted my spirits is remembering that I am still so far ahead of where I have been previously - ie pretty much house bound and on the edge of the miserable abyss. So, I just wanted to again say thank you to everyone who posts on here with such words of encouragement. It really does make a big difference - the support as well as the advice. It all helps.

My unfortunate outstanding issue of concern has to do with my work. I am a police officer, and while I don’t currently do operational work (I’m in an office and work on policy and projects stuff) I am expected to be “operationally ready”. That is, that at any time I could be deployed to the field either permanently or as a short term measure (when there are riots or big events like APEC or World Youth Day). That just isn’t really an option at the moment. A dizzy person really shouldn’t be carrying a fire arm :lol: . We have to do qualifying shoots each year and I got an exemption from my doctor this year, but now management is asking what my “status” is. If I have to go on restricted duties that is really going to affect my career opportunities, both laterally and if I want to get promoted. Given that symptoms come and go, with no predictability, this could be a problem. I’ve asked for a few weeks’ grace to see if my meds kick in but, as per above, it’s not looking great. I can struggle through my desk job (kinda) but operational stuff - which includes night shift - is not looking like a great long term lifestyle.

Sigh
Vic

20

Victoria - I am so sorry that things are not looking up. I am glad, though, that you were able to look back and see that there was some definite progress. Have you spoken to your doctor about the exacerbation of symptoms? i feel for you in terms of work. Being out on the field as opposed to working at a desk situation are two very different scenarios with differing demands. The unpredictability makes this so very hard to figure future plans out. I just hope that your job will be understanding and patient. I wish you all the best.