Hi all, I have been dizzy 24/7 for nearly 6years . Diagnosed, eventually, with MAV, about 9 months ago. I have built up , very slowly, to 100mg of Topirimate and things do seem to be improving. I also take 20mg Nori. I’d say I’m at about 80% better. ( which is great)
The thing that really bothers me is that I have now been discharged from the neurologist and the vestibular specialist and put under the care of my GP who quite frankly knows nothing about MAV at all.
I was told its possible to increase the Topirimate to 150 mg but how will I know if I should?
And also how long am I supposed to stay on these drugs? Will the dizziness not just come back as soon as I come off them?
I feel I am completely in the dark as to what to do next.
Any advice would be very welcome.
It must be so awful to be left ‘high & dry’ like that. I would imagine that your GP would be able to contact the neurologist with any queries you might have and even give you another referral if needed.
You say your GP knows nothing about mav (so what’s new?). Mine doesn’t either but is willing to learn!! I have given her lots of the evidence-based info to read which, fortunately, she is more than willing to do. However, I agree with changing dosages or meds it is good to have someone who really knows about mav making these decisions.
What country are you in? I think Dr Surenthiran/UK is contactable for advice and my specialist, Dr Granot/Sydney, is also available for ongoing support.
How long have you been on 100mg of the Topamax? Glad to hear it’s really helping so sitting on that dose for a while could show even more progress.
I would ask a pharmacist about the levels to which you can go with Topamax. Mostly it depends on how you metabloize them, and if you are suffering any side effects. If you feel fine on it, then most doctors will usually let their patients max out a med before trying another. I think Nori is one that you have quite a bit of room to move up, with doses to at least 100mg…so at 20mg, you are still in he low range.
Are you unable to see a neuro, or a different neuro to continue your care re: migraine?
Here is my “For what its worth” (FWIW).
Since it takes awhile for the meds to really kick in fully and you are feeling 80% where you are, why don’t you give yourself a set bit of time to see if you get any better without going “up” on meds. If you can manage your symptoms at the stage you are at, perhaps set a goal of 2-3 months–as you may continue to improve over that time. If, in that time you see no improvement, or you feel as though you are starting to slide backward, inform your GP that you are titrating upward on the dosage and do so as you have done in the past, going slowly and NOT EXCEEDING THE DOSAGE THAT HAS BEEN DESCRIBED AS SAFE FOR YOU (150 mg/day) at this time.
If AT ANY TIME you feel as though you are frightened, or getting worse, or experiencing new symptoms, etc.–contact your neurologist and/or have your GP provide you with a new referral.
At this point–what has happened is that you’ve received your diagnosis–and aside from medication management, there is nothing more your neurologist can do. Whatever insurance or health care system you are using may not support a high cost specialist to support medication management and therefore you are under the care of a GP whose job is to ensure that you don’t overdose or have a bad reaction to the meds you are on.
I have a migraine specialist here in the US. I have to say, I’ve been “lucky” on that front. While I’ve fought the diagnosis and didn’t believe or understand it, I’ve had an excellent practitioner with the answers right there by my side for months patiently waiting for me to read Scott’s MAV 10 Commandments!!!
The meds are the answer for us, once we have our diagnosis. As long as we know we have an expert to go to should we find ourselves experiencing new or weird symptoms, the goal for us is to get regulated on the meds.
Good luck–and try to stay positive–you are 80% there already !!!
This is interesting topic for me, as I feel I am in the same boat. The first two weeks I was on 100mgs of Topamax, I was feeling better than ever. Now, the last week or so, I am feeling “off” again. Feeling very anxious and “buzzy”. Now I wonder if I will level off again or if I need to worry about titrating up even more so I can get back to that level of feeling good again.
Its common to have ups and downs on meds especially the topa. I would say continue 100mg for atleast 3 months before considering to up the dose even if u feel like crap. If 100mg has worked well for u in the past, give it time and hopefully it should level u back down. The key is to get to 100mg which is the most difficult task and they stay on it for 3 months “Granot’s words”. I couldn’t get past 25mg. LOL
It does seem to be a common pattern, after hearing from others, that when you first start a med- you have good days/bad days/weeks, etc. Do things eventually level off at some point?
Nabeel- did this happen to you with the Cymbalta? Do you feel like you have sort of leveled off, or do you still fluctuate a lot with how you feel? Has the Cymbalta helped with your balance/walking at all?
Thanks everyone for all your help and advice.
I will carry on with 100 mg Topirimate for 3 months or so and see how I go.
However how do I know when I stop the drugs the dizziness just won’t return?
that is a great question Anne, about stopping the meds and having symptoms return. In my opinion, this is a chronic illness, so I would think logically that stopping the meds (which are controlling the symptoms) would lead to the symptoms returning at some point. If you have asthma and you stop using your inhaler, you won’t be able to breathe as well. If you have diabetes and you stop taking your insulin, you will have problems with your blood sugar. If you are bipolar and stop taking your meds, your mood will no longer be under control. I don’t really see how MAV is any different- but it seems like some drs. think that you can “break the cycle” with the drugs and then stop the drug altogether- I honestly wouldn’t take that risk myself. But then again, my symptoms are debilitating and prevent me from functioning- someone else who has really mild symptoms might think taking the risk is worth it?
I’m like you and don’t really fancy the risk of being horrendously dizzy again. I’ve already been dizzy for 6 years and don’t want to go back. I don’t feel “the cycle can be broken”.
Has anyone been horrendously dizzy, taken drugs,stopped the drugs and then been ok?
I have seen a lot of stories on here where people felt better on meds, stopped taking them, were fine for maybe a year or so, and then all the symptoms came back. It also seems that for most of these people, going on the initial drug again that helped them the first time didn’t work the second time around. I’m guessing there must be people who stayed well but they probably wouldn’t come back to the forum if they were feeling better?
Sarah yes cymbalta has helped me with the balance and walking issues. Its not perfect but a lot better. My days if I have a good sleep can start off very well 80% sometimes 90% and during the day may fluctuate between 70% and 80%. If I don’t get a good sleep I will start off the day at 70% and it pretty much remains this way. However as I get tired throughout the day regardless of whether I have had a good sleep the night before or not by 5:30pm I start to get hammered and and fluctuate between 50% and 60% until I fall asleep. So basically if I need to go out after work or have a late night on the weekends that’s when I use a benzo to help me. This has been my pattern for the past 2 months and I am quite happy with the results. My vision is still off but I’m slowly trying to accept it though it sux but I tell myself that atleast I can see am not blind. I plan to add topamax soon to see if it helps my vision which cymbalta has not touched upon at all. We alll have such weird variants of this illness. If only it had one same protocol of treatment like other illnesses it wud be so much more easier to deal with
Glad to hear the walking is better- that is my most debilitating symptom- I have to use a cane all the time and even with that it is very very difficult. I will probably try Cymbalta at some point, though I am still trialing Lyrica and will probably try a calcium channel blocker next. As for the vision stuff- when I am still, everything moves slightly in my vision- almost shakes back and forth. I notice that in particular when I try to focus my eyes on just one letter on the computer screen- it shakes back and forth. These symptoms are annoying but I can ignore them usually and I don’t think they interfere with my functioning. I also get some visual snow which only started after starting Nortiptyline- I was told it is a harmless side effect of the drug and it isn’t harming my eyes or anything.
So last summer I tried Lyrica for the first time, I went up too quickly and it was too sedating, so I only took it at night for a few months. At the same time, I was taking xanax every day because I was so anxious and it did help calm my symptoms down at the time. I remember I tried to experiment and not take the xanax for a few days during this period. Within a day or two I noticed everything in my vision became perfectly still, like it is supposed to be! But at that point I hadn’t been diagnosed with mav and thought maybe it is my brain compensating or something…but once I continued with the xanax things starting moving again… long story short, this time around, the Lyrica has NOT helped my visual stuff which really sucks. But my point is that I think the meds can def help with that symptom, so don’t lose hope. I am positive at this point that it was the lyrica helping, but i think the xanax sort of masked the effect for some reason. I wonder if adding topamax may help your vision issues? I also want to try that one again at some point.
I have visual snow syndrome which currently has been categorized as permanent migraine aura but there is more research going on with this condition in order to determine whether it really is related to migraine or some other malfunction in the brain. This is bcz there r plenty of people out there that suffer from this condition without any past history of migraine and have no other symptoms but this. I have static/shaky vision 24/7, after images, tinnutis, foggy head and balance issues. For me all symptoms have improved on the cymbalta but the visual crap. I am not surprised that Lyrica helped your visual as its an anti convulsant like topamax, keppra, gabapentin, lamictal etc. There have been anecdotal evidence that anti convulsants do seem to help the visual snow syndrome but not enough cases to be considered a valid treatment. Once again, its a matter of trial and error which sux. Good luck with your drug trial and hang in there. I once thought as does everyone else that I will never improve but I have. If u read my previous posts u will see how much I was suffering. Basically everyone improves it is very rare that no1 does and I am sure that u will too with the right combo of drugs.
I am currently taking 150 mg and I totally understand what you mean when you say how do you know if you should increase it? For me, I kind of went up quickly with my topamax. I never really gave it the the full 3 months. But now at 150 mg… I wont go any higher. I feel at 150 mg… it was the same as 100 mg. (So actually, I may even go back to 100 mg.) I still get bad days. But now, I have ALOT of GOOD days. My life is SO much better. SOMETIMES, I even forget I have forget I have MAV! (This is recently) I did have a crash at this beg of this month and it was awful, but I kept on living and dealing. Topamax is wonderful, but honestly 100 mg is prob enough for most of us. I hope this helps you =0)
Lisa, how long did your crash last for? are you back to baseline now? rich2008, who wrote his success story about topamax, said he had good and bad days for almost a yr, and eventually more good than bad- i saw another update where he wrote that a couple years later, he barely has dizziness anymore. i think with that med (and maybe others) it can take a long time to see the full effects?
Hi Lisa thanks for your advice on Topamax. How long have you been on full dose now and how long do you intend to stay on it?
I do feel better on 100mg but not better enough!
Anne hi, I am so pleased you are seeing success on topiramate. I have been thinking it may be the next med for me to try if I am not much better in the next few months. I see you are also on nori…what dose of nori did you get up to at the highest? did it help any of your symptoms? Also, how was it going onto topiramate and what side effects did you get? x
The highest I got up to on nori was 40 mg . It definately helped with the facial /tooth pain and also to some extent the headaches. When I last saw the neurologist he told me to gradually come off the nori and I am now on 20 mg. However the facial pain has started to come back and I am thinking of upping the nori again.
When I first went on topirimate I went up in 12 .5 mg doses probably taking between 1-2 weeks between each increase. So it took me quite a while to get to full dose. At first I did feel more dizzy ,had more headaches and felt generally strange. Each time I increased I felt not very well for 4-5days. Now that I’m used to it I still quite often feel nauseous, get pins &needles in my fingers and have a horrible taste in my mouth. I was very scared of trying topirimate but I can honestly say that it hasn’t been as bad as I thought and I’m glad I’ve tried it. I don’t think I’ve been on it long enough to know if its worked properly yet.
I’d definately give it a try if you’re thinking of trying a new med.However,unlike me, make sure you have given nori a good and fair trial. I wish I had upped the nori first but the neuro said not to.
Have a great Christmas
Hi Sarah and Anne,
So sorry for the long delay on getting back to you!! Merry Christmas and happy holidays!
Sarah - my crash lasted about a week and a half. I blame my crash on eating ALOT of chocolate and stress. But I belive the topamax and paxil helped me recover a lot faster!! I am now back to my baseline. The tricky part is that I also had my period during my crash…and last month when I had my period I also had two very bad days. I believe hormones have a HUGE HUGE part in this!! I am keeping a log to track my progress… I’ll keep you posted. But for now, the dizziness and headaches are at ease! LIfe has been 80% lately =) Topamax took A VERY LONG TIME TO WORK. 3-4 months.
I have been on the full dose now for about 2 months going on three(100 mg). I upped it to 150 mg around thanksgiving and like I said before I feel like it may be too much… but I do feel great now! I prob wont go up any higher. It’s so hard to tell bc I went up so fast. I do intend on staying on the med for at least a yr until my symptoms go away to 90%… my doc said people can come of the meds, its not something thats forever. I sure hope not… i do notice my hair is starting to get thinner =0**( But it has saved my life! How long have you been on topamax, Anne? Hope you are well!