I thought I’d write a quick message about my new BFF Topamax. Never in a million, billion years did I think I’d say that! I’ve had a few PMs about my experience with it thus far and I know that there are some (maybe lots) of you out there too scared to try this drug because of all the horror stories you have heard regarding side effects.
Here’s my story: When my MAV began over 18 months ago Topamax was the very first drug I was prescribed at 25 mg. That was before I found this site, before I really knew what MAV was and before I was educated about meds, how to take them, etc. I really did not have any experience with meds before as I’d never really been sick. I didn’t even like to take vitamins because they upset my stomach. Talk about med sensitive! I am the poster child! So I lasted 3 days. It was three days of pure hell. I threw the bottle in the trash can and said never again. I went back to my Neuro told him I was done with Topa and he said “No”. He was a very good Neuro. Dr. Freeman with The North Carolina Headache and Wellness Center. Anyhow, he told me that Topa was the best drug for what I had and I had to stick it out, to cut the pill in half and stick it out. I thought forget him and found a new Neuro.
So then I trialled tons more meds, had procedures, went to lots more doctors, pretty much drove myself insane. I found a few drugs here and there that helped me a bit but I had problems with either side effects or the drug just didn’t help enough. So I found Zoloft which is a great med and has improved the vertigo greatly. But it too did not do enough and it did not help at all with the frequent and severe headaches. So since at this point I was pretty much out of options I decided to give Topamax another go. The first few days were really bad. After the first week I was fine. ONE WEEK. All the bothersome side effects were gone. From time to time I may get a wave of nausea, nothing I can’t handle. I do have a bit of an issue with sleep, minor trade offs. The good news is so far the headaches have really been calmed as has the vertigo. It’s very soon into this medication to say that it has cured my vertigo but there is not doubt that it has made a difference. I’m at the point to where even if it does not help anymore than it is now I could live my life like this. I still have vertigo and it still stinks but it’s manageable. Compared to where I was, this kind of vertigo is a piece of cake. I was sooo sick. Bedridden sick for months.
So my point in this long, drawn out story is to try to quiet the fears of so many who are so worried about this wonderful drug. I know what it is, I know the risks of it, but I also know the benefits. Don’t be scared of Topamax. BTW, my GP told me taking a low dose Topamax is safer than taking an aspirin every day!
So if you are on the fence go ahead and try it! You never know until you try!!!
That’s great! I love it myself and wish I would have tried it first, but it is my wonder drug for sure. I hope it just continues to get better for you. But, given your response, I would also not hold out too long at 50 mg if you don’t have much greater improvement. Move up to 75 mg and see what that does. You’ve got a lot of room to go up since literature suggests 200 mg is the max dose at which it is effective for migraine. If you feel this much better with 50 mg, how much better could it be at 100?!
Great post Elisha. I didn’t know you had been to the Wellness Center in NC. That’s where James U Adleman used to work but now retired. He gave a very informative talk here about migraine and medicines:
Your story illustrates very clearly what I’ve seen so many, many times over the years on this and other forums. Some people really are freaked about about medicines like Topamax. Sure, sometimes they can be really unpleasant but I don’t know of one person who died trying one! The worst thing that can happen is you might feel worse – and you’ll almost certainly feel worse on the start up. But you might also feel a hell of a lot better. Migraine brains are hyper-sensitive and that means they are hyper sensitive to the side effects (except Victoria who is not from this planet :lol: ). Patience is definitely key as is bravery to soldier on through the trials.
It’s unfortunate too that some uncomfortable side effects can cause some to think medicines are pure poison and that therefore they should seek a “natural” alternative – almost always totally ineffective – or they just go on and on reluctantly accepting the status quo without a proper treatment.
I hope your post gives anyone sitting on the fence food for thought.
Thank you Scott, yes, if Dr. Freeman read this post I’m sure he’s have a nice little smirk on his face. I waltzed out of his office that day so certain that he was such a jerk and that I would find a Dr. that would be more compassionate and would be able to help me. Well, as it turns out, he knew he stuff! If only I had listened to him from the beginning I probably would have saved myself a lot of grief. I try not to think about it.
Thanks for the link, I’m getting ready to go check it out.
Anne-Thank you as well, and I agree, I should probably go up. I’ve been on the fence about that myself. It just may be time for me to bump it up!!!
Elisha, to be fair to you, I think some of these specialists could probably make a better effort at “connecting” with their patients. They no doubt see so many that, after a while, some probably come across as vending machines for drugs with little compassion. And the patients that are scared or think the “big pharma” conspiracy is real are likely the first ones to fall over and think the specialist is an idiot or knows not what he is speaking about. Of course, there are some who do not seem to know what they’re talking about. We really have to know our stuff and stay open-minded dealing with the management of this junk.
Scott, when I first saw Dr. Freeman he blew my world apart. He diaganosed me with MAV. Told me to give him my valium bc he was so against benzo’s, NO OTC’s pain meds EVER. At this time I was at my worst with vertigo, was having headaches every other second and was surviving on valium and OTC pain meds. Of course I know now that’s not how to manage this condition but at the time I wanted to deck him. So that’s why I walked out, terrible bedside manner. Smart Dr. though. If I knew then what I know now…
I don’t get the being against benzos thing. That to me is just plain crazy and unfounded. As long as we are medicinewise it’s no hassle and is actually a wonder drug for this garbage. One of the things my GP wrote me a script for today was VALIUM. Ask me how happy I am about that. LOL :lol:
Your doc was probably concerned that your overuse of OTC painkillers was perpetuating/ exacerbating the headaches. Probably true.
Anyway, what a difference when you know what 's going on eh? What did people like us do 30 years ago when they had no idea. I shudder to think.
I rarely have to take valium anymore but I have a whole bottle in my pocket book, it’s such a comfort to know it’s there bc it’s my crutch. It would really scare me to think about having a bad MAV day and not being able to take a valium!!! I do understand that lovely feeling of getting a valium script filled LOL.
Kathleen-ear fullness kind of dissipated over the past year on it’s own, ringing went away with Zoloft. I do seem to have more energy now and I don’t feel as over all sick feeling. The headaches thus far have been the biggest with the slight improvement in vertigo. I’m going to bump up to 75mg’s when I get back from the beach next week hoping to see quicker results in the vertigo but I know I need to try to be patient!
Yeah! That is great and glad you had the courage to try it and can’t wait to hear as you progress in mg. I got up to 100mg but am back down to 75mg but would like to see myself at 50mg. Topamax has been the right drug for me as I have not had a true vertigo attack since being on it. I still have tinnitus, probably, worse brain fog- concentration, memory, words getting out etc. as the drug has the nickname (dopamax) for a reason! But I’ll take that over the vertigo.
Hi Elishat,
I wanted to ask you about your definition of Vertigo. To me, vertigo is when a wave hits you on your head hard and there is a roaring spinning , so fast, that you literally have to hold on or sink to the floor and hold on to anything, like a table leg or chair, as you feel you are going to zoom fast across the room if you let go. It is a horrible, scary, terrible thing to feel. Mine lasted about a minute or maybe two or three, but not much longer than that. Once it stops, you immediately throw up, like you would if you were on a fast spinning carnival ride and got sick to your stomach. Then after you throw up, you have to have help getting to the couch or bed and lay there for hours until you feel stable enough to stand. Your mind is so upset at what had just happened. It happens to me ( I now know) after I have one of my strong triggers ( that I never new I had for about 4 years of this) but now I know what they are…coffee, cigarette smoke inhaled, orange juice and tea. So far, that’s what causes it for me. When people on the forum say they had vertigo for days or weeks, I can only wonder what they are talking about. Maybe what they mean is they feel DIZZY, as I feel dizzy and buzzy from having MAV, but vertigo, to my mind, is a totally different animal.
Glad you are getting along with Topa. I am thinking of it for myself, as it doesn’t cause weight gain, so I hear. Good luck with it and glad you are feeling better. meredith
I think there are vestibular disorders caused by migraine that are being lumped under vertigo that probably aren’t the true vertigo you are describing. For example, the constant rocking sensation I was having that mimmicked MDDS probably wouldn’t be considered true vertigo by definition, but falls under the definition of MAV for some reason.
The disorder should probably be referred to as Migraine associated vestibular disorders or something like that. MAV is probably not the best name for it.
Oh and I should comment–I’m 4 months in on Topamax (100mg/day) and still doing great. I haven’t had even a hint of the rocking sensation since I got up to 75mg after about 3 weeks to a month on the medication. It has been a life-saver for me. I’ve had one very painful kidney stone that may or may not have been Topamax related (I suspect it was) but no other significant problems.
I’m HAPPY for you, Jamie. It’s so nice to hear someone really feeling better, and seeing a medication really working for them. Thanks for the explanation of the “vertigo”. It always confused me so much. I never had “rocking” constantly , as so many describe, but I realize that a lot of people on the forum have never had true spinning vertigo. Both are equally horrible, I’m sure. My verapamil and Nort. keep me 90%, unless I do a known trigger, like drink a 6 oz glass of orange juice. THEN I got a huge hard vertigo and was in bed for the day. So, I’m careful with known triggers now and feel good. So glad that you do, too.
Yeah, I don’t like to try and compare symptoms to decide which are “worse”. The unpredictability of what you are describing must be extremely scary and cause you to constantly worry about when it is going to strike again. That must be very hard to deal with.
I’m glad to hear you’re doing mostly better with the medication you are on. I know the weight gain is a bummer, but I’m glad you’re doing mostly better.
Thanks, Jamie. Weight gain is a bummer, but at 5’4’ and ( weighed this morning)139 lbs, I’m not going to jump off a cliff about it, just keep trying to walk alot and eat less. It has worked so far, as I have lost about 3-4 lbs in the last 2 weeks.
Meredith, I would love to be back at that weight again!!! I’m an inch taller than you and I once weighed 135…now have an additional 25-30 pounds that won’t budge since starting SSRIs. And this weight gain all started while I was nursing and had lost all my baby weight and had dropped back to my pre-pregnancy weight of 135. It sucks! Topamax hasn’t really helped me much other than keeping my appetite down, but I’m also still on Lexapro. I truly believe these meds mess up your metabolism.
Hi Anne,
I absolutely agree with you about these drugs messing with our metabulism and causing an unusual kind of weight gain. I know that they do. As long as we are ON these drugs, I guess we are going to have to eat like we are on a strict calorie diet, plus exercise. Even just walking ( with a purpose, arms swinging) is enough to keep our “engines” running and burn a bit of the fat. It’s a conundrum, because we are depressed and anxious because of the MAV, and yet the drugs we take to help that, causes us depression and anxiety because of the weight gain. I have no answers other than what i’m doing, so far. If I think of a miracle, I’ll let you know.
I once gained 8 lbs just by looking at a bottle of Lexapro!
The only one that did not cause weight gain was prozac.
I have since dumped all SSRI’s. I am thinking of adding St John’s Wort to my regimen, I’ve used it in the past with good results, and I find taking 5htp to be helpful as well.
I have no answers other than what i’m doing, so far. If I think of a miracle, I’ll let you know.