Update for Go Gonzaga!

Long time no hear guys!

Thought I would stay away for awhile (ie. 3 weeks or so) as I have been on a newly directed MAV regimen per Dr. Baloh at UCLA and I wanted to give it a fair shot without input from the folks here. :wink:
For the first time in 4 1/2 years…I can honestly say that I have felt better during a 2 week span! :smiley:
(Can I get an “Amen” from the Congregation?)
Not 100%…matter of fact, not even close. Not great…but certainly better. I am not dreading getting up in the morning. I am not needing naps every single day. I am seeing some light at the end of the tunnel (no pun intended). I am more lively with the kids and wife again (don’t go there with the wife questions… :lol: )
Granted, this is only 2 weeks and things can change very quickly, but I will hope for the best! (I think pray for the best is more like it!)
He started me at Topamax at 25 mg for 1 week…then bumped it up to 50 mg the next week…then bumped it up to 75 mg the third week. (I am only at day 2 of the 75 mg) No side effects whatsoever. I know, I am a pharmaceutical side effect miracle :o ) and I am now sleeping like a baby on Tylenol with Codeine (ha ha) So…I am finally getting some quality sleep which is starting my day out better (which as many of you know is very important). The Klonopin has helped to act as a vestibular suppressant where the Xanax was completely lacking. Now the key is the Topamax. We just need to see if this is the appropriate migraine medication for me. Only time will tell. I have no idea if I am feeling better because of the Topamax, the Klonopin, the better sleep patterns or a combination of all 3?

Will keep you all updated. I realize this may not last. I have a long way to go and I am sure this will be a long, long journey. However, even 2 weeks of reprieve has been nice after 4 and 1/2 years of hell! :lol: Love ya guys, Todd

Todd,

I’m writing this with a big smile on my face. Hell, for now, who cares what’s causing you to feel good - just roll with it, eh??!! :slight_smile:
I’m so pleased for you. Amazing that you’ve felt no side effects from the Topamax! You’re on a higher dose in 3 weeks than I’ve been in 4 months! :roll:
Keep it going, mate!

Tony.

Todd – brilliant to hear you are finally seeing some positive changes. At least you can really see that your migraine condition can and does respond to meds. Sorry to hear Celexa was a dud. Keep on truckin’ amigo.

Scott

Thanks guys…I am certainly not banking on anything, just happy to enjoy a few “non-rotten” days! :smiley:

Is my total of 2 mg of Klonopin spread out throughout the day considered high, medium, or low?

Just trying to get an idea if I am “doping” myself too much. I would like to tweak it so I am taking the least amount possible to just sedate the brain enough.

Still not sure about the Topamax and the effect that it will have. I am prepared to go up to up 100-150 mg per Baloh’s approach…and from I hear, you will not get the true migraine treatment until you hit the peak dosage level. (and this is assuming that Topamax is the right med…ugh :mrgreen: )

So much too consider…ahhhhhhhhhh :shock:
Well…let’s all keep our fingers crossed for me. This has been a long , long, long 4 and 1/2 years and I need a little break from this. Not a huge break, just a little break from the big guy above :smiley:

I am still just kind of hanging in there…not feeling my normal “rotten” self, which is kind of odd. I keep waiting for it to pop up!

Thanks again for the prayers and thanks for thinking of me guys…I really appreciate it! I need a break…I really do (and my family does and deserves it to!) I will keep you posted of any major breakthroughs one way or another. This time next week, I imagine I will be on 100 mg Topa!

Hey Todd
My personal opinion is that 2 mg is on the higher side. Since you were coming across from Xanax to klon, it would make sense, but most of us taking it take much smaller amounts. Usually .5 mg a day cut in half. I think it might be ideal to try to cut it down slowly.
It’s hard to determine what to blame/thank when you make many medicinal changes at once. You should keep a diary of how you feel and the changes you make to try to figure what’s doing what,
When you say you’re not feeling like ur "rotten"self, do you mean since MAV?
It’s quite possible the klonopin is calming yr brain down and ur getting some glimpses back to normalcy.

Kelley

Yes Kelley…when I say like my “normal rotten self”…I mean “post MAV”.

Pre - MAV was a new life, a different life (a pretty damn good life :smiley: )

That is my comparison.

Ears are ringing a bit more than usual today…have no idea why? Just popped .25mg of Klonopin, we shall see if it helps or not :?

At day 3 of the Topomax of 75mg. What side effects (if any) should I be expecting folks?

Because I have been so stinking med resistent, I am imagining that it is going to take being at a very, very high dose of a migraine med before I ever begin to truly see long term benefits from this crap!!!

Todd

Todd -

My ears are ringing more too, but I think it’s the stinkin’ weather pattern. I thought it was mostly the plains and eastward, but maybe it’s also affecting your part of the country too??

Please don’t go anticipating what side effects you might experience! A lot of people have problems with Topamax at MUCH lower doses than where you’re at already, so I wouldn’t start getting all worried now - signs are VERY good for you, bro!

Besides, side effects that happen to one person may not happen to another, or may happen to a much different degree or at a different dose. And they may disappear after your body gets used to the drug. And side effects can be GOOD! For example, I found Topamax made fizzy drinks taste icky, which helped me finally kick my Pepsi habit and helped me lose some weight (which I REALLY needed to lose). Now, I’ve heard that particular side effect often goes away - but do you think I’ve tasted Pepsi in the couple years since I’ve been on Topamax? NO WAY!! I was such a Pepsi junkie I don’t trust myself!!!

So just observe your OWN response to what’s going on, and see if there are any side effects (bad or good!) that crop up - maybe you’ll have none! With Topamax, it’s a long waiting game. But the signs so far for you are very good, because you’ve actually noticed some slight symptom relief and no side effects. And even if you do notice side effects, as many of us have, you may find that they are mild enough (or good enough!) that they are just fine to live with compared to the potential or possibly by then actual symptom relief this drug may provide.

Hang in there, OK? Power of positive thinking is what you need now while you’re in that several weeks of waiting! I know because I was where you are now! It was worth the wait for me, and I so hope it is for you too!

:smiley:

Great to hear that things are looking good for you!! I hope it just gets better and better :slight_smile:

Hey Todd,
Glad to hear you are having some relief, finally. Here’s hoping!

I went up to 175 mg of topamax and had no side effects except at the start I would have some very mild tingling in my hands. But it was self-limited and it went away after the first few weeks. Unfortunately it did not work for me, but I found it a very easy drug to get to a high dose. From my experience, the general population of patients (non-MAV) folks have very little trouble tolerating this med so please don’t think of yourself as very unusual or keep thinking that some bad side effect will happen.

All the best!
Lisa

Hi Todd,
That’s just fantastic , so happy for you.
Try not to think about the * what might happen* and enjoy the moment.
It’s about feeling better.
awsome! :smiley:
cheers
Jen

Todd,

Great to hear you’re doing well. I am currently at 150mg of Topamax, the side effects are self limiting and the positive effects of the med outweigh the negative for me at this point. Enjoy feeling better, and hopefully you are on the right track with these new meds. All the best.

Cecilia

Hi guys,

It has been a whopping 16 days or so since I have started feeling a little better…yeah :smiley:

I really, really, really do appreciate the well wishes from this group. You guys are the best and are true caring and loving folks who deserve nothing but healthy and happy (and big lottery winning) lives.

Now…I need to remind you: I am doing better…but certainly not great. Work has not been torture, mornings have not been suicidal, etc. So…I do not want to jump on any bandwagon that I have beat this thing by any stretch!!!

I have been feeling better though…no doubts :mrgreen:

I have a very hard time believing it has anything to do with the Topomax yet. The good feelings started neartly 2-3 days after the Klonopin. (started the Klonopin and Topomax at the same time)
Regardless…I will continue down my Topomax trial (at 75 mg now…will be at 100 mg by next week) and see where all of this takes me.

So…thanks again for the well wishes. I just do not want everyone to get the impression that I have mysteriously woke up and feel 100%…not the case :x I am better though, and hoping for more gains as the Topomax takes control.

Will keep you guys posted. Love to all…drinks are on me tonight, send invoices to MV Vertigo c/o Scott , he will take care of the details!
Todd :smiley:

Thank you very much for sharing your positive update. I wish you all the best, and please do continue to keep us posted.

Hi Todd,

Really pleased to hear you are seeing an improvement, and may it continue on upwards until you are back to normal again :slight_smile:

Keep us posted about how you are getting on.

Great news Todd - long may thr upward curve continue~~