Please help! Am I getting worse?

Hey everyone,

I am so scared, it’s so hard to handle these symptoms anymore! I don’t know if I’m getting worse, but the last week I feel like I’m a major bobble head 24/7. When I first had my MAV crash several weeks ago I had great echo of movements everytime I moved, but if I held my head very still I didn’t feel like I was bobbing up and down all the time, although I felt like I was rocking 24/7. Those great echos of movement have ceased but now it seemed like this symptom has morphed into where I feel like I’m bobbing up and down a little bit all the time. Also whenever I move my head, body there is still an echo of movement, so I still have disequilibrium. I also feel like I’m rocking back and forth still, but that isn’t as extreme. I also feel almost like I have no gravity at all times if that makes sense. I feel like my feet and body are super sensitive to everything so whatever I walk on even in daylight I feel every bump. Before, if I walked around the tile in my house, it’s always been kind of smooth. Now for the past several days it feels very rocky when I walk on it. I don’t know if its the Topamax I’m on or not causing these newest symptoms. Did anyone’s symptoms kind of morph over the weeks and gradually get better as the brain learns to compensate? I was hoping Topamax is the answer for me but I don’t know if its making me worse. I don’t want to live like this for the rest of my life, I’m so scared!

How long have you been on the Topamax? You should call your doctor, if possible, & see what he/she says about your latest symptoms/situation. Hard to say if it’s the Topamax causing this or something else.

I always hated it when people said “the brain learns to compensate.” Basically that always felt like “you’ll get used to it” … and that sounds so depressing. Unfortunately there are some things about our new lives that we *will *have to get used to.

Seems like our symptoms do change, so the best thing to do is call your doc.

Are you on anything besides Topamax? Valium or Xanax **might **help settle you down.

I agree you should call your doctor. He/she will have a better sense of if the med is causing that or if you have another problem, or if it is just a flare up.

I can say this to you - anxiety goes hand and hand with MAV. Not only does it physically trigger it in MAV patients (just ask anyone here who prior to having MAV never had anxiety problems), but it also just happens when you are not feeling well. In other words, you feel poorly, thus you start worrying, thus the anxiety starts taking over, thus it makes the MAV symptoms worse. I’m sure many of us have had our “scared” moments - I just recently did myself! Try to stay as calm as you can for now. It is true that the brain will compensate, but who the heck knows how long that will take anyway? One most often needs a med or multiple medications. Anti-anxiety meds seem to help with both MAV and anxiety, so I too suggest you ask your doc about that.

Hang in there! We’re with ya!

Dizzyinaz -

This is what I would do - -I agree with them, I would call your doctor today and tell him what is going on. If you can’t wait it out on the Topamax, maybe you can try Verapamil or Effexor. I know exactly what you are describing - the no gravity feeling. In my case, I believe the Verapamil has pretty much taken care of the “weird” walking feelings. I still get them mildly but not as much or as bad. If I eat MSG or trigger foods, I notice it more. If in doubt, call your doctor. He will give you some insight. I have never tried Topamax, I only know I felt “off” with the Verapamil at first and wanted to give up on it. But for some reason I didn’t. Try to relax, I know it is hard. Somehow try to get your mind off of it. I used to hate when people told me that. I am here for you, you’ll be okay. This will pass. You are going to get better, I promise you that. Call your doctor, take a deep breath, kick back today if possible. I used to close my eyes, sit back and picture myself perfectly healthy again doing fun things. I still do that. Do you have any caffeine free chamomile tea? I bought some Celestial Seasonings “sleepytime” tea bags at the grocery store. It seems to relax me totally. I also would heat up my “bed buddy” in the microwave, put it on the back of my neck, drink my tea, and do biofeedback. The bed buddy is a neck wrap filled with oatmeal smelling beans. I bought it at Walgreens years ago, I’d use it during my cluster migraine season. I know that Walgreens still has them. They are by the Medicines at our store. I have a hard time relaxing, but that works for me. You are going to get over this mountain one step at a time. Everyday you are closer to getting better. I have been there, I know. I am praying for you.

Sincerely,
Nance

Thanks Nance, Joy, Bcrelief,

I’m still taking the topamax, but I’ll probably go off of it next week when I see my neurologist. I get worried that maybe topamax will help me in the long run but I don’t like the way that it makes me feel. I think I’m going to try Verapamil next. Hopefully that will work for my disequilibrium, which is the most awful symtpom by far. Thank you so much for all of your replies. This is so hard to deal with because I can never get away from feeling like I’m constantly moving. I wish with all my heart this would all go away and I swear I will never take life for granted again! I keep praying to my deceased Dad to help me through all of this. I just want a second chance at a normal life and I’ll live it to the fullest!

dizzyinaz - my heart broke when I read your post as I can relate 100%. Disequilibrium is my worst symptom by far, and have had it for 2 years. Sometimes I feel like I just cannot handle it anymore. And, I too, always say that I now will never take life for granted again, learned any lesson I needed to, and am ready to get better. Hang on. there are lots of drugs. something will work. that’s what I keep on telling myself.
Lisa

Hi dizzyinaz,

Sorry to hear you’re having such miserable symptoms. Can you remind me how much Topamax you’re on? Have you recently increased the dose? I’m sure Rich might have some advice on this … he definitely had a real rollercoaster ride on this stuff, and it did all stop after a while. These migraine meds can really cause symptoms to escalate sometimes. Try not to worry … perhaps you’ll only need to reduce the dose for a bit or maybe this med just isn’t right for you – whatever it is, the increased symptoms will go away again.

Hang in there … Scott

dizzyinaz,

What you describe is how I felt 24/7 before I started the meds. Maybe you just hit a bad spell and need to give the meds some time.

Brian

Thank you so much for all of your help. This has been so hard on me and all of you guys are heroes in my book for putting up with all of these horrible symptoms. Do you think I really have MAV? I’m double guessing everything because a lot of my symptoms sound like MDDS, I feel like I’m walking on a waterbed, trampoline most of the time now and I feel better in the car. I also remembered a few days ago that before this started for me I was sick and I blew my nose really hard and I heard a whistling sound coming form my left ear, almost like something gave way inside my ear. I totally forgot about this because I have been so stressed as to what was happening to me. I’m pretty sure it was the same day as I started having disequilbrium. I hope I didn’t injure my ear! I did take the VNG 2 weeks after this happened and everything came up normal.