Giving Up

Specific Illnesses & Conditions VM/MAV
1

Hi All,

I’m 31 years old and have had MAV / Chronic Dizziness for going on 10 years now. At first I thought I had a problem with my eyes. I went to numerous eye doctors and just thought they didn’t know what they were talking about. I’ve always been an avid reader, but starting about 10 years ago my reading slowed down as my “eyes” have had trouble with the reading. It’s hard to explain to someone who doesn’t struggle with it, but its like my eyes jump around the page involuntarily, and then just zoom in and out of focus like wild. This happens even when I’m not having a flare up.

I started taking xanax about 7 years ago for anxiety, and I didn’t notice, but my flare ups were more under control and only got really unmanageable in the spring. After years of benzo use, I realized I was addicted, and going down a very dark path. So, I took the steps of getting sober from xanax. About a month after stopping my xanax use (safely), I started getting very painful migraines that my imitrex couldn’t touch. Then the dizzies came in full force. It’s been almost a year since I stopped taking xanax and the dizzies seem to be here to stay.

After all the research I’ve done I made some major lifestyle modifications, making an effort to go to bed and wake up at the same time every night. I worked out consistently, even when it made me dizzy. I followed the MAV diet, etc.

What I’m leaving out of this story is the many years of drugs I’ve tried. I can’t even, at this point, remember them all. I saw Dr. Cherchi / Hain in Chicago, the Diamond Headache Clinic, and finally Mayo Clinic in Rochester. They all seem to prescribe similar drugs. And all the drugs seem to give me increasingly intolerable side-effects. I’m not working now, I’m on medical leave from work. I’d like to go back, but with the issues with reading, it doesn’t seem likely.

So, at this point, I wonder if I’m the only one who this maybe all this isn’t worth it. If I just live life as if I’m not dizzy, and just go big, then go home when I’m WAY too sick, what’s the harm at this point? It’s not like I"m going to make it so I can work even less, right?

Could use some advice from the dizzies…

2

Hey - sorry to hear you’ve had such a hard time with this horrible illness for so long. I’ve been muddling through for about 2 years now and I can’t even think about how I’d feel with another 8 years of this… I think it does help, though, to just live each day for itself and not keep “waiting” to feel better. I know I’ve spent the vast majority of the past 2 years just hoping “maybe tomorrow I’ll wake up and feel good/normal again.” And that was making me really miserable, since day after day I would wake up and be disappointed yet again. I think you may be on the right track with the “go big and then go home” idea. To a reasonable point, anyhow ;-). I’ve found that the more positive my outlook on the day, the more I do, the better I feel emotionally. I’ve gotten really good the past couple of months at basically pretending I feel okay, and acting like it. I think folks around me think I feel better, and in a sense I do, though, really my head’s still “off” to a good extent. But they treat me more normally (instead of tiptoeing around me “How arrrre you today?”) and that helps me again to feel more normal even though I’m far from it. Does that make sense?

So, all that to say, “Keep your chin up” and do what you can to enjoy life, but don’t give up on finding the right answer for your MAV. (I’m about to give Petadolex butterbur a try. It’s a longshot, in my opinion, but my neurologist seems to think it could help, as it helps her and some of her other patients, so, why not? I can always dump it if it doesn’t help…)

If you’re new to this site, be sure to look around at all the info - there’s so much! - as you may see some ideas which you haven’t tried yet. Who knows - could be the least expected one that tips the scale for you in the right direction. Till then - hang in there and enjoy things as best you can! :smiley:

3

I know you may feel like you’ve tried everything (and maybe you have) but this is a good list of all of the potential migraine medications that can be tried. It might be a good reference point just to see if there are medications that you haven’t tried out yet. All it takes is one medication to help you out.

Evidence-based guideline update 2012 - migraine treatment

4

I don’t think you should give up…have you looked into chiari? You are so young to be suffering with this, there are many things it could be, keep searching…I have eye issues…double vision in the distance, complex fabric patterns appear to breathe, it is all due to high csf pressure, Long story, I am in rebound after having a spinal leak patched, so now have appreciation for both high and low csf pressure symptoms. All the MAV drugs by coincidence treat high csf pressure, if they are not helping, then maybe low pressure from leak or chiari, or something else.

5

I have had MAV for over 8 years. I decided instead of waiting to feel better which I did for years, that I’d have to accept I might always be this way, and deal with it the best I can. I say if you are going to be sick, might as well try whatever you can try, even if you get sick. You can be sick at home or out trying to live life. With that said, I know my limits, and some days I’m vomiting and spinning and fainting and I can’t walk or think straight etc. and those days I stay in bed, but if I have a day sprinkled in every now and then where I can try to get in the car, even if it’s to go to the shopping center 10 minutes down the road (which is all I pretty much make it to before the motion sickness is unbearable) then I do. I’ve been having a lot of friends over my house if I can’t leave. It boosts my spirits and makes me feel more “normal”.

Have you tried any supplements? B2, Magnesium, Feverfew, Butterbur?

Never give up. Someday there might be a better medication that comes out that works for you.

Also, there are people on this board that have to take 2 or 3 different groups of migraine preventatives at the same time and then they get relief. Has any of your doctors tried more than one at a time?

Personally I couldn’t tolerate the side effects of anything I tried and there aren’t many others left to try, so I know how you feel. I use Valium just for the super bad attacks (I have Basilar migraines and the attacks are bad) and otherwise I just try to deal with the daily dizziness and sickness the best I can.

Have you tried anything else for the dizzines? Meclizine or Dramamine? I’ve read some people here have even used Benadryl and gotten relief. I used to use Meclizine but it lost it’s effectiveness after 5 years or so but for those 5 years, it did help some.

6

Thanks for the Replies!

I have done the B2, Magnesium, Feverfew, and Butterbur route. I took each of them for about 4 months (individually). They didn’t make the slightest difference, other than my stomach getting upset from the supplements.

I have just felt like the side effects of the drugs I’ve tried have been too harsh and the results too minimal to continue. For example, I took protriptyline and ended up in the ER with tachycardia. Metoprol made me very light headed, and didn’t seem to do anything for my dizziness (so it seemed to compound the problem). I started on celexa and I ended up not being able to get off the couch I was so dizzy (bed didn’t feel stable enough at that point). I think I’m just extremely sensitive to medications, but at this point, it is getting ridiculous.

Thank you for the list, Jamie, I recognize a lot of the drugs on it! I know there are many drugs on the list I haven’t tried, but given that each new drug causes side effects that are much worse that my baseline problem, isn’t there a point at which I call a stop to the insanity and just find a way to function without them? Maybe lifestyle changes? The drugs just don’t seem like the answer (after so many years of trials).

Inafog - I am going back to the doctor this week, and will ask him about chiari. The symptoms do look a lot like me. Especially with the vision and neck pain.

I don’t know if anyone else has experience this, but my number one complaint is lack of mental focus. Regardless of the medication, or whether I’m having a bad spell of dizziness / migraines / etc. or not, I have noticed my ability to focus on complex ideas / tasks shift significantly. It has been a huge contributor to why I can’t work right now. I know its not due to the topamax I’m on because on or off topamax I have the same difficulties.

Shelly - I may be the only one, but dramamine and meclizine just made me more dizzy. Forget about Benadryl, it knocks me out and I end up dizzier and sicker the next day.

I know giving up sounds bad but, I’m not saying I give up on life. I just give up on feeling better than I do now. I have been taking topamax successfully for over a year and it has helped me with the triggers. I can shop in a grocery store now, and even drive as long as its not rainy / snowing or in a construction zone. I’m still quite dizzy, but I just think this may be as good as I’m going to get. Maybe finding a job that requires less computer usage (not sure those exist these days)?

7

— Begin quote from “runfastclaire”

I know giving up sounds bad but, I’m not saying I give up on life. I just give up on feeling better than I do now. I have been taking topamax successfully for over a year and it has helped me with the triggers. I can shop in a grocery store now, and even drive as long as its not rainy / snowing or in a construction zone. I’m still quite dizzy, but I just think this may be as good as I’m going to get. Maybe finding a job that requires less computer usage (not sure those exist these days)?

— End quote

I am so sorry to hear about all that you’ve been through with the drugs. All of that on top of MAV is too much for one to deal with and remain sane. I haven’t tried as much drugs as you but I am also very med sensitive and most made me even more dizzy and sick in the beginning. That’s why we need to give it a few weeks as most of the se’s go away. I finally found one that was tolerable in Effexor.

I was really curious about your driving being improved with topomax??? Can you please tell me how your driving was before topomax? Many of my symptoms are like yours and have improved a good amount with the Effexor generic. But I still have a very hard time driving and still a bit of dizziness. I had really bad brain fog like you but it got better after Effexor and giving up caffeine. I hear topomax really helps with the motion problems and my doctor is going to add it soon to my Effexor. I just want to know how much it has improved your driving.

Thanks and please hang in there until you’ve tried everything.

8

For me, almost every one of my motion triggers has improved with topamax. It used to be that after a very short trip I would start feeling like I was in a moving tunnel and I needed to pull off the road and rest immediately because I couldn’t really see anymore. Now, it takes a lot longer for me to get to that point and I don’t have to rest for as long to be able to drive again.

This is my second round with topamax. The first round I gave up on it because of the cognitive side effects, but I’ve found that those side effects are no stronger than the cognitive issues I have when I’m not on topamax and dealing with all the motion / light triggers anyway. I’ve just had to come to a point where I accept I’m not quite as quick mentally as I used to be.

I’ll ask my doctor about effexor. I tried it before, and it didn’t have any effect on my dizziness, but I’m willing to give things a second chance at this point to see how they interact with the topamax.

Good luck to you MAVprincess!

9

I was on medical leave for 6 months and recently returned. My job is 100 percent computer based. I have had problems with computers since this problem started with me two years ago. I have also had problems reading as well. I was wondering if you have seen a neuro ophthalmologist. I saw one in April (who got me a pair of computer glasses) and I went through a round of vision therapy but had not been diag not with mav yet and it was out of control. Since then went on topamax and now feeling the best I have felt in two years.

When I went back to work a few weeks ago the computer strain on my eyes was very difficult. I went back to my neuro- ophthalmoligist and I’m going through another round of vision therapy. Now with the mav under control seeing incredible results. He also put scotch tape on the rim of my computer glasses and oddly enough that has made a huge diference on me being able to do my job. Only working four hours a day now but thinking I will move it up to eight soon I am pretty sure I can handle it.

When you mention the type of problems you had with reading it made relate it to my own. I don’t know if vision therapy would help but what you describe sounds similar to what I’ve experienced when reading. I’ve been stuggling with dizziness since I was in my early 20’s. I’m 43 now. It was minor for the first twenty years, disappering for 5-10 years at a time. Then it showed it ugly head two years ago and never went away. It took me two years to get a diag and feel better. Please dont give up. There is a light at the end of the tunnel.

10

Mark,

Thank you for your reply. I’ve never heard of a neuro-opthamologist, or vision therapy. I’ve been doing vestibular therapy which, frankly, seems like it won’t be effective for me and the key complaints keeping me out of work.

I got a pair of glasses (even though I don’t really need glasses) with a special lens to help with the computer and fluorescent lights. The lenses seem to help a little bit, but really not much.

I don’t know if you experienced this at all, but did your vision issues first present as procrastination? I don’t know if this makes any sense, but before I understood that reading caused dizziness / migraines and was just plain uncomfortable then progressively impossible, I would start putting off tasks at work and at home that involved reading. Once I noticed the pattern I started to really force myself to do the tasks that involved reading, and that is when I realized it wasn’t just a laziness issue, it was a pain issue.

I go back to the Mayo clinic on Friday, so I am going to ask my doctor there about all the things that have been brought up in this thread. I’m reluctantly admitting this…(just because I’m stubborn) but I’m feeling hope again. Thank you for sharing. Its scary to be 2.5 months into my medical leave and have no answers and think I’m not going to get any. I worked so hard to get into my career, and now my health is forcing me out of it. I hope I do find answers here.

Thanks!
Claire