Instant relief

So I am going on a ten day trip with my husband to Europe in 4 weeks for our 15th anniversary. This MAV thing just hit me 3 months ago. So far I have tried xanax, nort, klonopin and am now on topamax…5th day in and had to cut my dose in half due to increased dizziness(ugh!). So my question is, if this topamax does not work in the next few weeks(which seems unlikely esp since I am going at a very slow pace now), what can i take to at least take the symptoms away while I am away? At first, I thought the klonopin was helping, but I am not sure anymore(maybe since the intro of the topamax, things have been thrown off)…wondering if I should get off topamax and try the nort again…went up too high(on zoloft as well and came down too fast on that). Any advice would be great…I have had a summer of feeling like crap; I just want to have 10 days of feeling like a human. THanks.

Hi Madcha,

The short answer is there is no such thing as a quick fix for MAV. You can add things to lessen the blow such as a benzo but that can be like putting a band-aid on a haemorrhaging artery.

The rule of thumb for meds is to expect to hang in there on a med trial for at least 3 months as long as you’re not being wiped out by side effects. Also, start low and go slow. Most cannot pile a med into their migraine brain without it reacting badly.

If you are tolerating Topamax better now, I’d stay with that. Chopping and changing meds won’t do you any good.

Good luck!

S 8)

Yeah, I guess I realize there is not quick fix for the MAV, but I am hoping to be able to enjoy the ten days that I am away, even if it means putting a band aid on the dizziness…it sounds to me that the benzos might be the answer for the short term solution. I know it won’t take it away, as I know that in the next month, even if the topamax starts working a bit, I will not be at 100%, I just want to be able to function and actually not focus on this darn thing and enjoy being away with my husband. So if there are any other temporary fixes, I am all ears…I have been such a burden to my husband all summer long, I want to be able to at least for those ten days not be…:slight_smile: Thanks.

I agree with Scott and I have dealt with this for a long time… I have also traveled extensively with my husband… Expect your symptoms to increase during travel especially if you are flying…so many triggers…crowds, noise, lights, time changes, lack of sleep, etc etc… Benzos will help to calm and take the edge off… I certainly would not backtrack from the progress you have made with Topamax just for this trip… You can do both… Stay where you are with the Topa and use the benzos to take the edge off… Believe me I have done it many times… You will inherently relax being away… Don’t worry… You can have a good time…bad news is…it will not go away… Just be good to your body… Dee in Va

— Begin quote from “scott”

Hi Madcha,

The short answer is there is no such thing as a quick fix for MAV. You can add things to lessen the blow such as a benzo but that can be like putting a band-aid on a haemorrhaging artery.

The rule of thumb for meds is to expect to hang in there on a med trial for at least 3 months as long as you’re not being wiped out by side effects. Also, start low and go slow. Most cannot pile a med into their migraine brain without it reacting badly.

If you are tolerating Topamax better now, I’d stay with that. Chopping and changing meds won’t do you any good.

Good luck!

S 8)

— End quote

Hi Scott,

If this is the case then why do so many docs not know this, its so frustrating. I am being taken off my meds after 1 month on them. I havent had any bad side effects as yet but the Neuro believes if it was going to help it would have done so by now :frowning:

I think it depends on who you see? My neuro reckons that it takes a good 6-8 weeks at least before you know if somethings going to work or not. If you can cope with side effects it’s sometimes worth hanging in there! Good luck.
Tracey

The sad truth is that Scott knows more about MAV than most doctors. And there are now some MAV Jedis, like Elisha (people who have been around here long enough and are extra wise and learned, having studied under Scott and having gone to the School of Hard Knocks), who also know more than most docs. Of course we should be angry about this, of course this shouldn’t be the case, but for now, it is.

I don’t know where these docs get the idea that MAV gets better in one month. Most people have to titrate up to a therapeutic dose, and that can take much longer than a month.

I consider myself a near-success story, in that my dizziness is 99% gone (I get only the most vague wobbly sensation on occasion, and my main problem now is headaches which are not severe and which I’ve been able to reduce in frequency).

But it was months before the Topamax (topiramate, actually) was able to accomplish this for me. I didn’t get rid of daily symptoms until I had been at 100mg for 3 months, and it took me several weeks to work my way up to 100. It’s a powerful med - it has to be, because MAV is a powerful foe! But it’s not ALL powerful. Many of us have been VICTORIOUS over it. Maybe not every battle, but in my case, it’s MOST of them because MOST days I’m NOT dizzy and I’m NOT having a headache!

I hope it will be that way for you too, Madcha. But instant isn’t the way it happens. Try to be patient. Hang in there!

Thanks for all of the words of wisdom. From everything I have read and learned up until now, I recognize that this is not an easy thing to deal with in the least…certainly, based on how I have been feeling for the past 3 months, I know I have a long road ahead. I guess in truth I wasn’t thinking there was a way to make it go away instantly but rather a way to really mask the symptoms for the time that I am away. I so do not want to postpone this trip because, in truth, I have no idea when I will be feeling better again. I know the jet lag and flight will all be triggers for me…but I was just hoping there was just something I could take to lessen all of it…and maybe that would just be the benzos. At this point, I have only been on the topamax for 6 days(cut the dose in half 2 nights ago due to increased dizziness); the dizziness is still full blown. I was definitely feeling better before I started it. It is so hard to be convinced that something is going to help one thing that at this time is making it worse…And when do I know if it is not for me? Right now my head is just swooshing around, so do i continue to take a drug that seems to be contributing to that? Honestly, part of me just wants to go cold turkey with everything just to have a baseline…I know everyone has been here before, and my story is not unique, and I apologize for venting, but this honestly sucks. I left a message with my dr. but will probably not hear back until mid week(which drives me nuts as well). So, thanks again…I really do appreciate all of your feedback!

Maryalice You must titrate up to a therapeutic dose (which is different for all of us) and be on that dose for 3 months before you know if it’s working!! And believe me…those titrations can be very unpleasant as we are dealing with our central nervous system!! You must see a neurologist who is current enough to know that “migraine associated vertigo” exists and is not just a migraine…

Sadly, it is a long road, but there are a lot of success stories… I hope to be one someday…I think we are all pretty brave to deal with this… We all have our ups and downs… Go on this trip with your husband and just take the smallest dose of Topa you can tolerate and use the benzos to help (with drapproval of course)… I have done this many times…

You will get through this…promise!!

Whoops…cut off part of my previous post… I was saying that Maryalice is absolutely right that I takes longer than a month to know if a med is working!!

Thanks Dee for your kind words and support. I will see how the next several weeks go…I just hate the fact that the dizziness has gotten worse. that is the worst part of this…I will talk to my dr.and see what he says:) Thanks again.

— Begin quote from “RichyF”

— Begin quote from “scott”

Hi Madcha,

The short answer is there is no such thing as a quick fix for MAV. You can add things to lessen the blow such as a benzo but that can be like putting a band-aid on a haemorrhaging artery.

The rule of thumb for meds is to expect to hang in there on a med trial for at least 3 months as long as you’re not being wiped out by side effects. Also, start low and go slow. Most cannot pile a med into their migraine brain without it reacting badly.

If you are tolerating Topamax better now, I’d stay with that. Chopping and changing meds won’t do you any good.

Good luck!

S 8)

— End quote

Hi Scott,

If this is the case then why do so many docs not know this, its so frustrating. I am being taken off my meds after 1 month on them. I havent had any bad side effects as yet but the Neuro believes if it was going to help it would have done so by now :frowning:

— End quote

Rich, I don’t know what the timetable for the med you are on is, but for Topamax I was told not to even look for improvement for at least 8 weeks. I was barely even ramped up to my max dose at a month. My doc kept pushing me up on higher dosages of Nortriptyline for at least 7 months before I gave up on it.

— Begin quote from “RichyF”

Hi Scott,

If this is the case then why do so many docs not know this, its so frustrating. I am being taken off my meds after 1 month on them. I havent had any bad side effects as yet but the Neuro believes if it was going to help it would have done so by now :frowning:

— End quote

Hey Richy – the thing is not all neurologists or ENTs (even fewer) are migraine specialists. We cannot assume that because the neurologist tag is pinned to their white coat that they know a whole lot about migraine. In med school it is barely touched upon and even when they go off to specialise as neurologists or ENTs they might get a few hours on the topic at most. And so that is why we must hunt down known migraine specialists who know what’s going on – like Rauch, Baloh, Granot or Hain for example. All of these physicians will know to start low and go slow AND to allow at least a few months to rule out non-efficacy.

Cheers S 8)

Madcha,

Several of us on the boards have actually felt BETTER on holidays - in spite of the flying. Victoria is one, and I’m another - and I flew from Oz to the UK non stop (2mg of valium each leg to help with the flying but because I don’t like flying) and then had 10 weeks there with a total change of routine, changing diet, irregular exercise, slightly messed up sleep, working hard etc and I had almost no issues. In fact I’d say overall I was generally a little better than normal. I certainly didn’t have a major crash or exacerbation of symptoms.

So the holiday might be just the thing to boost your spirits! And try not to assume that you will definitely be worse - it’s not a certainty. Personally I’d stick on the topa even if it’s just on the current dose, and titrate up once you’re home with lots of happy memories. You certainly haven’t given it a fair trial yet as the others say it’s 6 weeks at an effective dose, and for topa that can be quite high I think. If you can get some benzos to tide you over then so much the better. I call mine my “valisman” (the valium talisman) - if I carry it with me it seems I never need it :lol:

Good luck!

Thanks for the responses. The interesting thing is my dr. took me off the topamax 2 days ago. I did not argue with him because I was not loving the way I was feeling. Since then, the dizziness has subsided, but I have been getting headaches(I have no clue if they are migraines or not…I never actually had the headache part of the migraines…or maybe I have and did not realize it) I am still on klonopin, and I have wondered if that could be contributing to the headaches. So sort of back t square one again. My dr. told me to call him on Friday to report how I am feelling. I have a potential plan…I want to try to come down on the zoloft that I have been taking for years at a very slow pace this time, so that either a) I can start taking the nortriptyline again…safely or b) so I can come off the zoloft and transition to effexor…any opinions would be welcome. I will talk to my dr, I just have a feeling he is not very knowledgable about effexor.

Hi Madcha,

Just to echo what Gabrielle (Lorcalon) said about travelling. The change in routine/jet lag etc can be unsettling but for the most part I do feel better on holiday. No stress! My advice is to just not schedule too much stuff and go at your own pace. You have to do what you feel comfortable with but you also can’t put your life on hold for migraine, especially in fear of what ‘might’ happen (you don’t know that you will feel worse on holiday, you are simply scared that you might). Chances are you’ll have a great time.

Take some Valium with you as a back up in case things get rough. As Gabrielle said, just knowing you have it ‘in case’ is a good feeling.

Vic

Thanks…all great advice!