I finally had success with Topamax for 4 years at 150mg. I had a heck of a time finding a med that worked because I never tried a med for long enough or for a high enough dose. My body needs high doses and for a long period of time, its slow and dumb, Im not med sensitive like many of the members here, I have to throw the whole pharmacy at my body just to do anything. So anyway I relapsed a month ago, which was probably my fault due to working 12 hour shifts, a ton of stress, and food triggers. i increased my dose to 200mg a month ago but still feel like crap. I know that this medication takes 3-4 months to work, so I need to be patient but its so hard, i forgot how aweful this illness is. In addition to being on 200mg Topamax I want to ask my doc to add Nortriptyline or Effexor just to give me a little edge. What do you think?
I’m so sorry to hear that you’re having increased symptoms. But I have to say that it’s encouraging to hear that you did so well on your meds for a long time. If you’ve increased your meds dose it may not take long for the symptoms to abate, since you managed to keep them under control effectively for a long period. Once they subside even a bit they will likely drop under that threshold again and disappear. (I have to say I loved hearing that you had forgotten how awful the illness is—I would love to forget! But at the same time I sympathize so sincerely with what you are experiencing now and hope/expect that it will subside very soon.)
@ichbindarren I know you are a old timer and i have read your older posts…so glad to find you still use mvertigo…relapses are bound to happen especially when you overwork yourself like you did…infact did you try like exercise, meditation, cutting back on work, eating right to see if it will calm down…even with meds one is not bulletproof.
I would recommend Effexor just because it works at a lower dose like 37.5mg as Dr.Hain says and does not need a monster dose especially as a second med.
Id say I was close to 90% recovered, I never thought about MAV unless I was in the car for a long time, or missed sleep because that would cause me to feel imbalanced, but I have been that way my whole life so it probably isnt even an MAV thing. But thats the reason why I say 90% and not 100. I need to be confident that the increase in Topamax should work, this med is just VERY slow compared to others. No natural “cures” have ever helped for me. The only thing that Ive noticed is to avoid stress, caffeine, chocolate, MSG, artificial sugar, and get regular sleep.
I’ve no way of knowing why you think so but I see no reason why ‘being in the car for a long time’ and/or ‘missed sleep’ shouldn’t be MAV symptoms and/or part if the MAV person’s make-up. Being imbalanced after long time in a car is a sign of a poor balance just as motion sickness is, and all the lifestyle changes listed seem to insist on sufficient uninterrupted sleep. Not that it really matters whether it’s cause or effect but it’s probably part of what predicted you’d develop MAV in the first place. Part of your own uniqueness.
You say Topamax is slow to work, very slow. Can I ask how slow you found it to be. Out of interest. I take Propranolol and that’s slow. Trouble is with slow working drugs I’m sure people just must give up on them too soon and then think they are ineffective. It’s so hard for some to keep motivated enough to go on taking them. I cannot think there’s any way to be confident extra Topamax will prove effective without trying it. How would you know otherwise? Helen
I have been on Topamax twice, and both times I experienced the following. I titrated to 150mg over about an 8 week time period, the titration was aweful, I had horrendous increased dizziness from the medication and the rare side effect of depression which went away.
After 2 months at a dose of 150mg I started having 50% better days mixed with baseline days (0%). After the 3 month mark I had mostly 60% better days. After the 6 month mark I was closer to 90% all the time.
Thanks for that. It’s quite a long time to wait but as MAV affects entire system is not really surprising, i take Propranolol. An ineffectively low dose, in my case 130mg/daily, didn’t do much for 15 months, so, saw another consultant who upped it, and then I started to see some improvement but it was eight months then before any sign of the 24/7 dizziness easing up. Very slow improvement since and ongoing. I’ve read it can take 6-8 months so we are one of each! I’ve also read on average one might be 70% better after nine months of treatment. Helen
Dr S patients in the UK talk a lot about how he says recovery is a slow process, especially if you have had this for a long time, or if you are a women in menopause, etc… In my opinion it is a slow process but many others have found it to be fast so everyone is different. Comparing cases really messed me up in the beginning and thats why I didnt give my meds a long enough trial or go to a high enough dose because everyone on here seems to need micro doses, and most success stories reacted fast to the meds they tried. So I didnt want to waste my time if the med didnt work for me at the same dose at the same time as it did for another person, but everyone works different.
I have been at 200mg for 30 days now. I’m feeling about 50% better which I am happy about because I know this medication is very slow to work. It has taken away the rocking and headaches. It has also lessened the head motion intolerance, visual vertigo and light sensitivity. There is still a lot of room for improvement though, I am considering adding an anti depressant, Im having serious issues with anxiety/depression.
You can chose between celexa or effexor.
Dr.Rauch has had good success with Celexa for MAV as well as it is an SSRI.
Effexor is SNRI.
Thank you @ichbindarren I resonate with this so much I’ve had mav for a year chronicly. My biggest issue was doing all that you said above and I regret it a lot . But I’ve been on pitzotifen 2.5mg which has got me to 50% I see dr s Monday to see what to add in so I pray he can help. I wondered did you ever have the spaced out dream like disconnected feeling ? This is my worst symptoms and I’m wondering if topamax helped with this ? I am sorry your having a rough patch but I 100% think it will calm down although I can understand the fear when this returns so try to be kind to yourself .
Please update me with what Dr S says! I am confident that he will get you feeling better. I definitely have the spaced out feeling. When Topamax was working at its best before the relapse, that feeling was greatly reduced, thinking back it it would have probably improved if I had increased the dose past 150mg.
I will 100% share my details of dr s apt please god he gives me some answers ! I’m really happy to hear the spacey feeling lessened this is my hardest thing to deal with as it makes me feel I’m living in a dream . When you were well would you say you had days of feeling back to your old self ? It confuses me as dr s says no one is on meds forever yet a lot of people on here can’t seem to come off medication
Amy, remember ‘on here’ you are looking at a skewed population. Non typical. All the people who had no med sensitivities or added comorbid conditions that exacerbate the condition and/or prevent smart recovery never came here in the first place. They didn’t need it. They took the pills, felt better and trotted off happily into the sunset. Thousands of them, tens of thousands probably. Then also remember consultants say the longer you have had MAV, the longer it stays after treatment. That Laura Kossack’s blog states with Migraine Diet you need to maintain it for as long as you had MAV pre-treatment. Most people on here are still struggling to find a med to give sufficient relief to obtain some quality of life. Most have only just started medication. Consultants reckon at least a year in the ‘sweet spot’ dose. I suspect that’s optimistic. @turnitaround was told to expect MAV to last 2-4 years. JamieH just returned here in response to an emailed query and he’s six years of topiramate, six good years it seems. I’ve just entered Year Five since MAV went chronic and I’m getting 100% symptom free days now. Had one yesterday and today’s looking gokd so far and that’s anazjng considering yesterday I had longer car journey than usual and an extended (nearly double in time) eye test. I did develop a rather tight stiff neck which wore off later in day but returned this morning but that’s all. So it can go away. Helen
In my case I had a whole 3 years of serious crap of which 1.5 years absolutely completely sucked even on Ami!
I was told by my first oto-neuro “It recedes into the background” (MAV), and my recent one “it burns out” (Secondary Hydrops).
When Topamax was working I felt close to my old self, but most days I could have used just a slight improvement, and I think a dose increase or a second med would have done that. Looking back now, I was just so happy to feel 90% better that I didnt care about the extra bit honestly, I didnt want to even think about meds or MAV anymore and I lived my life lol.
We definitely have a skewed population of people who post on here.
Yeah I totally get that ! I really appreciate yours posts you make a lot of sense it’s super exhausting when ur in this mav hole ! I’d be happy just to get rid of the spacey feeling I can hack the rest if I atleast felt present ! Let’s hope dr S can serve up some answers on Monday. I hope ur starting to feel better on the higher dose
Thanks James ! So do you mean the neuros basically said it eventually goes or calms down with time ?
Thanks so much Helen appreciate that , it’s just so tiring after 13 months of this I’m so exhausted not feeling like me anymore . I can handle a lot of this mav stuff but the dreamy feeling is awful it feels like I haven’t been real for the last 13months. I’m so happy to hear ur getting 100% days that gives me hope ! I think when this things goes on for so long the fear is overwhelming . I also would like kids soon so that is why being on the meds forever bothers me so much. I would like to think if I had it for months at a time as a kid and it went away there is no reason that can’t happen now
That was my interpretation, yes.
The one caveat she and my psychotherapist said was that they suspected that the minority that didn’t was down to “anxiety” in those individuals. (When trying to understand why I note that anxiety probably impacts both the brain and the inner ear).
I’ll leave it up to the board members to decide if that’s reasonable …