I spoke with Dr. Cole this morning (the one who treats me from the Veterans Administration hospital) and I told him at 50 mg the Topamax has not helped me at all … ZERO! Been on this med for nearly 2 months. Plus … there are some mild side effects on an average day … less energetic plus not feeling particularly as intimate. Another thing I noticed is I tend to fly off the handle a bit quicker than normal. Nothing severe … but still noticeable. Doctor Cole said that for a sizable amount of neurologists Topamax is their first choice for headache related conditions. So if Topamax did not help me he is having second thoughts if in fact I have a headache condition and wondering if this is mostly an anxiety condition?? I told him I have been dealing with this for 16 years and going in circles with doctors. At the beginning (early 90s) one doc said I had Panic Disorder … the 2nd doc said I had inner-ear dysfunction w/anxiety … and then in 2006 at UCLA Dr Robert Baloh diagnosed me with Migraine Equivalent and or MAV. I told Dr. Cole I would like to set up a follow-up appointment with him again since he has only seen me once … and review my condition. Dr. Cole said he would reschedule me … but he said after the appointment if he honestly feels that it’s Chronic Anxiety would I be willing to work with him as far as getting some treatment and I told him I would. Dr. Cole finds it interesting in that 16 years the only medication that gives me some relief is anti-anxiety medication. Without it I would have no life. So that is the latest guys. I really feel I am going in circles again … but I am still determined to get to the bottom of this!
Oh Joe, that is discouraging. I hope you are able to get to the bottom of this soon. I know what it is like to go around in circles - both literally and figuratively.
By anti-anxiety medication helping you I assume you mean valium and/or its relatives. Of course that will help with the dizzies as well as anxiety,it is a vestibular suppresant so just because that is helping doesn’t mean your problem is anxiety.
Personally, I get a bit upset when any of my doctors attribute any of my many complaints to anxiety. Anxiety isn’t a big issue with me but I do get anxious over physical things (I admit I am a big hypochondriac) and my PCP glosses over many of my problems telling me I am anxious. Yes, but it is because I have this problem or that problem. That is what is causing the anxiety, not the other way around.
Sorry to hear that Topamax hasn’t done the job for you. But I don’t think this is any indication that you are not a migraineur whatsoever. If Baloh thinks you have MAV, I’d be trusting him far beyond what this Cole guy has to say. Baloh is THE leading researcher in this field. And I have to say that if Cole is attributing all of this to anxiety, I’d probably walk out the door and never return. That’s such a lame thing to say and really shows his inability to understand MAV. Anxiety is a key component of an aura for some migraineurs. And considering we have inner ear/balance issues, it’s probably a constant in almost all people with MAV. We cycle continuously with this sh*t which means we could potentially be living in an aura a lot of the time and therefore feel anxious a lot of the time with attacks. Rich is another good example. His anxiety was out of control and off the charts. He killed the migraine which killed the anxiety.
Does Cole realise that there are numerous treatment options for migraine? I know a few people where Topamax did nothing (Adam is one). What other meds have you tried Joe? Be good if you can post a list of the things you have trialled.
I KNOW from my own experience how significant anxiety is with this condition and I KNOW it is not the cause. It’s a symptom. How do you feel about the anxiety side of this? Does it feel like it’s you that is anxious (ie, real external thought processes) or is it purely physiological as in a by-product of the dizziness and condition itself?
I’ve always had a hard time explaining to everyone who can even start to understand my MAV (and very few people do!) that anxiety is a BI-PRODUCT of the condition. I have NEVER ever suffered from anxiety or depression in my life until my MAV was manifested and my symptoms of MAV, most notably vestibular ones; unsteadiness, dizziness, split-second vertigo/dizziness, intense nausea thus created the anxiety and depression which then exacerbated the MAV. Treat the dizzies etc and voila, reduction in anxiety! Also by treating the anxiety voila, less MAV. It’s been suggested by close friends that perhaps I have an anxiety issue, which sh*ts me to death because I know it’s garbage and the root to all these evils, is the MAV. Incidently my MAV has been progressively improving over the past 3 years and guess what, my anxiety has just about gone too!! Funny that wouldn’t you say :?
regards
Judy
Bookworm…when i speak of anti-anxiety med i’m speaking of Xanex. You are right…it is a vestibular suppresant and this is what i need to get across to Dr. Cole.
Scott…my only healthcare if with the VA (Veterans Administration)…and they paid for me Twice to visit Dr. Baloh and Dr. Cole is basically their to monitor the medication. You are right…he appears to show little interest in wanting to learn more about MAV even though he said he believes there is such a thing. I think he tends to forget that i have MAV and works with me like i have a run of the mill Migraine condition.
Scott…i didnot really know that Anxiety is a Key componet of an Aura for some people with MAV? I honestly got the feeling Dr. Cole was ready to just let me go…but i insisted that i wanted to review my case. I told him…“you hardly know me, you have only met me once and prescribed medication one time”. But he shot back with…“well i have read your history and it appears that much of it sounds like anxiety”.
Scott…this chronic motion, tension w/anxiety in my head that i have 24/7 is something that has been with me after having an intense 45 second vertigo spin in 1992 with lots of vommiting. I mean…after finishing in the bathroom…i crawled to the couch…and 15 minutes later the motion and tension and waves of motion in my head began and here it is 16 years later. But…prior to 1992…i had approx 6 vertigo attacks (1989-1991) (always waking up from sleep at night w/vommiting) but i always returned to normal within 3 days. But the big crash in 1992…i never returned back to normal. So is this some kind of Anxiety thing…i just don’t know? It’s something that builds very gradually every day…as soon as i wake up in the morning. I get up to fix breakfast and feel a little tension in my head…then take a shower and begin to feel some motion…get on the computer for a bit…increased motion w/tension…put on my work clothes…symptoms increasing. Then i know it’s time to take the one tab on Xanex or else i cannot function properly…cannot talk well or listen well…cannot retain or concentrate. I don’t feel stationary. I become irritable and not very chipper. Dont’ want to leave the house. Once i take the one tab of Xanex…it’s like something in my head begins to help relax my brain (like a piece of ice melts a little)…so that i can function in a part-time job, go to a movie, visit with friends, fly in a plane, live my life. On the weekends when i don’t work i can generally go a little longer without takening the tab of xanex…maybe late morning. But the bottom-line is i just want my mind to feel RELAXED again…you know…feel normal again. It never feels relaxed. I hardly ever feel pain…only the tension.
Scott…i really don’t know what to think right now. I have been thru this circle so many times. I’m going to e-mail Dr. Baloh’s Assistant at UCLA…Dr. Cha and let her know the latest telephone call resulted with Dr. Cole. I thought about trying Neurontin…so that is a possiblity. Maybe i can get Dr. Cha to speak with him??
Yes…i have read Dr. Hains site…thank you Scott very much! If you or anyone else have any other thoughts or ideas to share please feel free because i just don’t know what the heck to think at this time.
Joe
I KNOW I don’t have anxiety/stress as the cause of my problems, I KNOW it’s MAV related. I also take Klonopin; 2 tabs (I think each one is 5mg, and that’s a pretty stiff dose) as well as a tricyclic antidepressant (75mg) which I’m currently ditching because I don’t think it’s helping my MAV, and also Sandomigran 5mg. Many might say that the Klonopin and the Dothep are taken because I have anxiety issues, but that’s nonsense in my case. The Dothep unfortunately doesn’t do much at all but the Klonopin seems to ease/relax the vestibular problems I experience which coincided with my MAV manifestation. After living with it now for nearly 3 years I have NO DOUBT ABOUT IT, I don’t have anxiety as my sole ailment, it’s simply a bi-product as I previously mentioned. I am lucky enough though Joe, to have a great neuro who has always thought I have had MAV and has been very receptive to my own experiences and my interpretations of the various symptoms I have. He’s been a great sounding board for those particularly early times when I had many doubts about the real ‘identity’ of my condition. The experiences you mention with your anxiety, mimick some of my MAV anxiety related experiences. Mine builds most days to a crescendo and I don’t often go out at night because that tension inside my head is too much. By the morning it’s much better and so repeats the cycle!
You’re not alone Joe and you have to go with your ‘gut feel’, it can be really overwhelming being torn between specialists varying opinions. We’re a ‘minority’ migraine group of sufferers and so little known about it - isn’t that enough to make you feel anxious I wish you much luck in your search for answers.
regards
Judy
Your description of your attacks with intense spinning and vomiting does not sound at all like anxiety to me. But they certainly would provoke a lot of anxiety in me. And If a doctor tried to tell me the anxiety was causing that kind of attack I would think I had a very uninformed, stupid doctor who didn’t know his head from his backside when it came to vertigo issues and wouldn’t even give him a second chance.
I realize that you are limited with your healthcare and that is unfortunate. What kind of doctor is Dr. Cole? He obviously knows little about this disease. I truly hope you are able to see Dr. Baloh again. Just because Topomax didn’t work for you doesn’t mean there isn’t something else out there they will do the job. How long have you been on Xanax? Is is possible you are suffering withdrawl from it and that is causing some of your symptoms?
Hi Joe ,
I absolutely agree with everything said by Judy and Scott.
An interesting thing happened just the other day Joe, I went to my Doc, turns out she was on holidays, I saw a knew Doc.
I told her I have MAV and wanted to try a knew med… yadda yadda!
Only to find her telling me all about myself and my mav, it blew me away how she explained MAV, she said Mav’ers don’t get the headache (pain) Mav goes to the other end of the spectrum, and can effect the brain with anxiety ect… This is the first Dr I’ve ever heard talk about MAV like this, it blew my mind how much she knew about it.
I think all of us at one time or another, been put off track by yet another well-meaning Doc.
As Scottie has said, everyone is different Joe, and topa might not be you’re med.
I’ve been trying effexor, only to find a third of the capsule WAY too strong, (insomnia, anxiety) so have cut it down even further, it has reduced my brain fog immensely.
It’s been a week and my energy levels are better too.
I’m still seeing Aura every morning, by around 10am I’m migraineing, but it’s only a week so far,
I give this effexor a few more adjustments and I’ll be feeling at least half way there.
theres more to aura than just the visaul stuff joe
Just so you guys know, a new member at the mdds site was first diagnosed with mav by dr baloh, tried 6 different preventatives without success, and has know been diagnosed with mdds by dr cha at ucla.
I know there are probably some who have been misdiagnosed with mdds when its really mav, but most likely there are several cases of it being the other way around. Especially since “spontaneous onset” has been controversial, but seems to be accepted moreso now.
If anyone here feels better when theyre in passive motion, such as in a car + dont get enough relief from mav-meds, I would at least consider mdds…
I think in one sense mdds is migraine, at least if one defines migraine as having the neurons firing spontaneously.
Sorry to hear that things aren’t working out so well. I had a similar problems with Topomax, but my temper was a lot worse by what you describe. I was on the verge of hurting people a couple of times, and two arguments at work before I said enough was enough.
— Begin quote from “joseph0952”
Scott…this chronic motion, tension w/anxiety in my head that i have 24/7 is something that has been with me after having an intense 45 second vertigo spin in 1992 with lots of vommiting. I mean…after finishing in the bathroom…i crawled to the couch…and 15 minutes later the motion and tension and waves of motion in my head began and here it is 16 years later. But…prior to 1992…i had approx 6 vertigo attacks (1989-1991) (always waking up from sleep at night w/vommiting) but i always returned to normal within 3 days. But the big crash in 1992…i never returned back to normal. So is this some kind of Anxiety thing…i just don’t know? It’s something that builds very gradually every day…as soon as i wake up in the morning. I get up to fix breakfast and feel a little tension in my head…then take a shower and begin to feel some motion…get on the computer for a bit…increased motion w/tension…put on my work clothes…symptoms increasing. Then i know it’s time to take the one tab on Xanex or else i cannot function properly…cannot talk well or listen well…cannot retain or concentrate. I don’t feel stationary. I become irritable and not very chipper. Dont’ want to leave the house. Once i take the one tab of Xanex…it’s like something in my head begins to help relax my brain (like a piece of ice melts a little)…so that i can function in a part-time job, go to a movie, visit with friends, fly in a plane, live my life. On the weekends when i don’t work i can generally go a little longer without takening the tab of xanex…maybe late morning. But the bottom-line is i just want my mind to feel RELAXED again…you know…feel normal again. It never feels relaxed. I hardly ever feel pain…only the tension.
— End quote
I wanted to comment that this sounds so much like me accept for the start before I got a proper diagnoses. I would wake up in the morning feeling just off. I would then struggle to get ready for work, and then at work I would struggle to keep my eyes focussed on things, because they were constantly trying to adjust for illisusionary motion inside my head. As the day wore on things just kept getting worse. Couldn’t focus my thoughts on anything, which makes reading and understanding a tech manual next to impossible. Thanks to the descriptions you use, I have been able to better describe things I experience inside of my own head. The tension you describe though is something that I have problems relating to.
If it is migraine related, there are other family of meds for migraines. Each one will work differently for different people depending on the root source of their migraines. Maybe you could find a doctor that might try some medications from the other groups to see if they can find something that will help you.
This was the first time I had seen “auditory hallucinations” as a component of an aura. I get them all the time and had no idea why. One doc years ago suggested I migth have schizophrenia in the family! Can you believe that? Joe, I think your doc is simply uninformed. He doesn’t understand migraine very well which is surprising if he’s a neurologist. But then I saw a “neurologist” two years ago at a migraine clinic here in Sydney who said that I did not have migraine but that it was chronic tension-type headache. Since when do TTHs come with an aura of dizziness and hallucinations? He was about 78 years old … totally old school.
I had a brief chat with Adam about Topamax. He couldn’t handle the side effects so not sure if it would have worked for him or not. However he has had success with Neurontin and Keppra (also takes pizotifen which is not available in the US), both of which are anticonvulsants like Topamax. You could try these next if you’re up for it or move onto another class of meds – beta blockers, Ca+ channel blockers or tricyclics. Not sure if you’ve tried any of these before.
Mikael - interesting comments about MDDS. I guess even Baloh might get it wrong occasionally … but appears we can never know for sure unless all of the meds fail whether as monotherapy or in combination.
Jenny - I’m really interested in hearing about the Effexor trial. How much are you on right now do you think?
Ha! You’re going to laugh when I tell you Scott,
A while ago Rich had told me that Dr H, said to divide the 37mg tabs into 3rds and take a 3rd for the first week, then slowly if need be move up each week until you were taking the whole 37mg capsule, well I tried a 3rd for a week and had trouble, I was going to ditch it,
until I realized within a day or so without it ,my head was back to fairy land, **chronic **brain fog,
So now I open the 37mg capsule and take around 10 of the tiny pellets, nothing miraculous has happened as of yet , except that it helping my motion intolerance and is taking away the intense feeling I get when the migraine hits, I have energy to burn and brain fog has lifted , I feel I’m present, not in fade out land all day…
for me this IS a big result; I could live like this happily enough, went shopping and was able to move along at quite a speed, YA!
So I’m gonna stick with 10 tiny pellets for a while.
You might think it’s funny picking out those tinny pellets, but it’s well worth it for me.
No insomnia either.
So yeh , the drug companies should make lower doses for people like myself, at least that way,they wouldn’t have so many people ditching it due to unwanted side effects.
That is funny but I’ll probably have to do the same thing if I use effexor. It’s becoming clear that I won’t be able to use 5HTP now for mood. For some reason it is losing its efficacy and instead giving me stomach aches all day and making me feel anxious and more surreal plus very lethargic. I’m only taking 25 mg every other day. It’s nothing. Some people take 300 mg daily! So I’ll be following your lead if Effexor revs me up on 1/3 of 37.5 mg. I have a box of the stuff in the house now and am thinking about it.
Scott 8)
ps thanks for the Australia day jokes! I forwarded them around.
Yes … it is amazing all you guys trying to help me out! Really makes me feel good that someone cares. I really didn’t expect this doctor to react so cool to me … it was like he’s ready to get rid of me. But anyway … I emailed Dr. Robert Baloh’s assistant Dr. Cha at UCLA and gave her an update on that conversation with Dr. Cole and I’m hoping she will contact him and they can have an informative talk as to where to go as far as medications. Well if in fact the migraine holds … then maybe I am experiencing a sort of aura daily of anxiety? But it is every day … the same.
As far as Mal de debarquement … most folks I have been in touch with or read their posts they appear to be experiencing motion outside of their body … but for me it’s the inside of my body … particularly my head. That is the main difference.
Bookworm … the vomiting and spinning that I mentioned was mostly in the 1990s when the condition was way out of control. At that time (1992) I was diagnosed with panic disorder … then a few years later the diagnosis was changed to inner ear dysfunction w/anxiety. Fast forward to 2006 is when I was diagnosed with MAV at UCLA and just recently I have been seeing Dr. Cole at the Veteran’s Hospital. Since I am only working part-time … this is the only health care I have. Dr. Cole is a Neurologist.
I have been on Xanax ever since this nightmare began in 1992. But I’m only on one tab 0.25 mg per day which is the smallest dosage you can purchase. Back in the 1990s I was on 7 tabs of Xanax and a 0.5 mg strength. But I was in terrible shape … with lots of vertigo. The vertigo had calmed down … maybe one half spin per year now. I have never felt addicted. But a number of years ago I weaned myself down from 7 to one tab of xanax but for some reason I cannot get down to zero no matter what I do. I tried taking a 1/2 tab … but I always have to go back to one tab.
Brian … so your temper was a lot worse on Topamax? I noticed I would get aggravated a bit more easier and yell at my partner louder than normal. At times I would feel a little sad … but still not too extreme.
Thank you again everyone … all of your input means so much to me! I will keep you posted on this story.
Joe, what do you mean with motion inside/outside your body? You know when you look at an optical illusion and the twirls sorta move when you move your eyes over them but not really, thats a bit how it FEELS (all the time) with mdds for me. Its sometimes accompanied by strong “g-force” sensations, but usally its a feeling of the ground going upupup,downdowndown…
But its not like being on a boat really, as theres both the “normal” sensation" and the mdds sensation “on top” of that. So usually my body feels really freaked out. I usually have like an “anxiety-lump” in my stomach, regardless if im anxious or calm, happy or sad. Its like my body is wondering what the hells going on ^^
Brian … so your temper was a lot worse on Topamax? I noticed I would get aggravated a bit more easier and yell at my partner louder than normal. At times I would feel a little sad … but still not too extreme.
Joe
— End quote
Joe,
My temper was so bad that I was throwing things in order to prevent myself from hitting one of my kids or wife, over nothing. I shattered a few different belongings around the house (lamps, dvd’s, remote controls, etc…) in an attempt to avoid hitting one of my family members. I never did hit anyone, but came close. Against doctors orders, (it was working for the dizzies after all) I quit taking it before my temper took me over the edge and landed me in jail or took my kids away from me.
Mikael…the way i understand Mal de debarquement is either you feel like your moving or the outside world is moving and or swaying… rocking…one or the other. Although some people say they feel both. I don’t…i’m positive about that. It’s only me…i feel the motion in my body but the bulk of it is felt in my head with the swaying motion and head feeling likeing its a bit Squeezed. Sometimes it feels like i just got off a amusement park ride but the majority of the sensation…again…is felt in my head.
Brian…that is pretty intense and scary! Well…glad you are off it. By the way, i only got as high as 50 mg. The doc says the way too wean down on Topamax is to go from 50 mg to 25 mg for a week…then the next week take 25 mg every other day for a week then i can stop. Well this is my 2nd day weaning down at 25 mg and today was difficult for some reason…more swaying motion. Is it uncommon that i might have a little side effect with it for a day or two while i wean down?
Joe, my temper got worse on Topamax too, but it was temporary. It lasted for a few months, and then I was fine. I have never heard of anyone being chronically irritable on Topamax in the long run. Just an observation. And as far as it “not working”, have you been on it at LEAST 50mg for 4 months yet? if not, you haven’t given it long enough to work at full force yet, nor have you given it long enough for the side-effects to go away. You’d be leaving the trial early. If I had done that, I would not be where I am today. I suffered the whole way with topamax, only to get the results in the end. My anxiety was through the roof!! But once my migraine calmed down, the anxiety calmed down with it! Just something to consider. I would personally see it through the full 4 months if you can make it. THEN, if it is still doing nothing, then get off it. At least you can say that you gave it the correct full trial. otherwise, you may just end up coming back to it later realizing that you didn’t give it the full trial. Yes, topamax starts working in about a months time, BUT, it doesn’t reach full effect until about month 4. I didnt get much effect on anything but the rocking until after month 4. Then it all started to come together. I had TONS of side-effects too…racing heart, irritability, worse dizziness than normal, fatigue, break outs, low blood pressure, and on and on they go. ALL of it went away after the 4th month. Again, just something to consider. You may ultimately not do well on it, but intil you’ve gotten through 4 months on it, you don’t really know. At least then you can say you did it! Just a perspective Joe. Good luck buddy
I wish you much luck in your search for answers.
We’ve got a great group of brains working on this!