Hey Stargrave - just wondering if you had your doc appointment(s) yet, if you have tried the MEP, VRT's, etc. Our cases are super similar so I just wanted to follow your progress. I've started taking B-Complex and coenzyme Q-10 and am following a very strict migraine diet to see that that helps. Astonishingly, my ear fullness is disappearing slowing which is a first in 5 months. Don't know if it is coincidence though. I haven't tried any VRT's or the MEP, but read that you were going to. Any luck?
Sorry to jump in on this thread. It's just you mentioned ear fullness. Just wanted to say that your specialist sounded great and bang on the money - apart from one small thing. I think he said to you that your ear fullness wasn't related to the MAV. Many people do experience ear fullness with MAV, some of them have episodes (as opposed to continuous symptoims) which makes the fact that the symptoms are migraine more obvious, namely they only get the ear fullness with the other migraine symptoms.
I'm not sure if maybe he thought in your case the ear fullness was allergy induced - maybe you have some fluid in your ears? But it's often the way that however good a doc is they occasionally come out with the odd weird hypothesis. Obviously the fact that your ear fullness could well be migraine induced makes no difference to your treatment plan - I just thought it was worth mentioning as it makes it less surprising - and also great - that your fullness seems to be diminishing in relation to your migraine treatment.
I had full ears for months and months at the beginning of this - I know how foul it is, I hated it almost more than the dizziness - almost - not quite.
Hi hbep & Missy..... When you talk about ear fullness.......does if feel like pressure? Sometimes when my right cheek goes numb it will travel into my eye and ear. When I get the numb feeling in my ear it also feels like there is a lot of pressure inside the ear. It only last for a minute or two max.
Missy have you tried any of the preventative meds the doctor gave you yet? I have not had and change in my symptoms yet...I have been on anitriptolyne for just over 2.5 weeks.
dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.
Thanks hbep - always appreciated when you add comments/feedback. You were the one who actually really got me thinking of MAV as my dx instead of Labs. And you're right, Baloh kinda "shrugged" at my ear fullness comment, and I wish he would have just told me what the guy in "Heal Your Headache" told me, which was that the ear fullness is completely related to migraines because migraines cause swollen blood vessels INCLUDING those blood vessels in your inner ear area. I am really learning alot from that book - it's really great. The diet is a bit tough, but I am willing to try it for a couple of months to see if it helps. I started it about 1 1/2 weeks ago or so, and I have been less dizzy, definitely less ear fullness, less fog, etc. Now I must also throw in that I happen to be mid-cycle, post ovulation so my hormones are pretty normal right now. The test will be in a week or so during "that time" to see if everything comes back. Since menstruation also causes migraines (and therefore, swelling of the blood vessels), it won't necessarily tell me that the diet isn't working, just another data point.
lynxgal - my ear fullness that has been present since March feels like fluid in my ear. When I swallow, it pops louder than normal. Also, when I blow my nose it pops LOUDLY. It's not as if they are completely closed and stuffed 24/7 (thank God), it's just feels like when you are coming down a mountain or hill and you swallow and can hear a noticeable release. When I swallow now, it sounds practically normal. Yipeeeeeee
Oh, by the way lynxgal - I have not started any migraine meds yet. I'm too scared to be honest. I feel like I'm not "bad" enough to delve into meds. I mean don't get me wrong - I feel horrid a lot. But I really just want to try to do this naturally with diet and exercise before I do the meds. I keep thinking back to pre-March, when I was pretty normal without meds. So with some hard work, I hope I can raise my migraine threshold so I don't experience these constant migraine flare ups so frequently.
Well unfortunately no news here since I've got hit(again) by some infection which even gave my ear soreness and inflammation.
Obviously this made me pay a toll with some extra vestibular trouble. Even as your doc said(correct me if I'm wrong) that an external or middle ear stuff might not be in direct connection with inner ear stuff, I can't see any positive stuff coming out from this soreness.
The point is, I'm taking some strong antibiotic, and I decided to finish this treatment(tomorrow) before starting my MAV approach(mainly B-complex daily).
I haven't got my next neurotologyst appointment for two reasons: First because I use social care and it can take weeks to see a doctor, and by the time I've got my last two appointments, lots of work came out, and I can't give me the luxury of skip a day for vestibular testing right now, so I'm in the blue there.
Two, I thin I MUST have some alternative to lower my allergic symptoms because If I come to the doc with my ears plugged and sore, like I always have when this allergic stuff gets me, they will immediately discard anything else(as they did before), in terms of my dizziness, and since you can't be taking any antihistamine medication close to the test, well I need to be lucky.
I know that there is co-morbidity between allergies and migraine, but they(my docs) didn't pay much attention to that, besides the fact I've stated above that ear inflammation caused by this, can't be good in any case for my condition.
SO, I'm going to start the B-12 intake next week, when, hopefully I'm out of this cold/infection stuff, and see if it helps, I also plan to start again my daily workout(mainly walking), and try to keep stress to a minimum. This combined with some extra intake of aspirin, helped me back when my migraine was classic(headaches and aura).
I'll skip the aspirin now, and in the mid-time I'll try to get some specialist attention for my allergies, something that unfortunately will also take some time because I've to do it under the social care too(no money for private stuff here)
Hope you're doing well, I'll keep you posted.
One last thing I'd like to state in my case is that:
Reaching into my past, I've now recalled similar episodes of unsteadiness, fog, and some dizziness(no true spinning or oscillating visuals like now), lasting months, where I blamed high blood pressure for this, I even developed some anxiety.
They treated this with a beta-blocker and exercise, which curiously are a Migraine prevention treatment, and it worked after some time.
The thing is that I count my problems starting Nov 2004, two years and months, but actually it happened this way:
Strong Positional vertigo attack(true spins and all) on NOv 2004
VRT recovery in 4-5 months with little or none extra trouble but two mild hiccups during 2005, both BPPV like, no fog, visual or other stuff.
I've got married, and well not blaming that but the extra newly wed stress, and some financial trouble is the thing that I blame for this current MAV(my bet) episode which started on Jan 2006, with all the accursed symptoms of unsteadiness, fog, visual stuff, etc. that we all know and hate.
So for this bout I'm really still on my first year...
Still looking for answers, hope I get some soon, and I'll keep you posted.
I read your story and it is so heart wrenching and disheartening that some people have this thing return time and time again. Firstly, I hope you resolve your condition, and secondly I hope that mine doesn't keep recurring like yours does! Yikes - I feel pretty woosy about complaining about mine that has only lasted for 5 months, when yours has lasted for years!
You know, I was thinking the same thing about the ear fullness. I was just telling Scott that I got hit just today with a dizzy blip, and I was trying to figure out what I did to cause it. There were several factors that may have presipitated it (sun, busyness, stress, heat), but I do specifically also remember when we were driving up this hill and my ears got that full popping feeling again (my ear fullness has been a lot better this week - the best it has been in 5 months). But that darn hill that we went up - it was right after my ears popped that I got my dizzy spell. So I am thinking that the inner ears, or middle ears, or WHATEVER part of the ear it is, is directly involved in the actual dizziness. I don't know - just guessing once again. It's like I want to drain my ears and see what happens (which might be why the Diamox works well for vestibular stuff since it is a mild diuretic).
Anyway, keep us posted on your "natural approach" progress!
Well, to set the record straight, it has only been really this year and months of madness to me, not because of the strength of the symptoms but because their 24/7 (with some clear patches) nature.
Not until now I recall this past bouts that weren't as often or as troublesome like this present one, not even after my stronger spin attack of 2004.
With my present knowledge I'm almost positively sure that those past episodes were actually MAV connected, and not blood pressure related, but add some stress, anxiety and you can have this rise in your pressure with ease. And because of the similarities in treatment between this anxiety/rise in pressure bouts to MIgraine prevention(betablockers/exercise/stress therapy) I was "cured" from that bout, always thinking that I just controlled my blood pressure.
This episodes affected me mostly when I was on a stressful phase, or in hard times of my life. So the fogginess, unreality, off feeling, light sensitivity, pulling down sensation, visual dependence(weird feeling in tunnels)and all the other beauties of MAV(without clear cut spins or oscillating vision) were there in some troubled times of my life, sometimes, like in my teens with the classic migraine headache associated.
Why? Pretty simple, Migraine is a life lasting condition, you can control it you can't cure it, as simple as that. And no I have not followed any diet restrictions, mainly because I want to enjoy life, and also because I can tell that stress is much more of a factor in my case than any specific food.
Back in my teens I controlled this with a similar combination(without beta-blockers), and drinking green juice(lots of vegetables) which surely had lots of B-vitamins, so that's why I'm going to start there to see what happens.
My take on this is that I still have some residual stuff from my BPPV/VN/Vestibular dysfunction episode of 2004, which in a non-migraneur should have already healed or fully compensate, as it almost did completely on 2005.
Many stress combined in my life an this uncompensated(to some extent) lesion, woke up the MAV monster, which in combination with the vestibular injury is giving me my actual harsh time.
That's why I believe that I must combine both VRT and MAV approach for a full recovery from this long lasting bout, which was the reason for me to join the boards, because not even in that strong 2004 attack, I came here, mainly because I did recovered quickly from it.
I'm much more concerned and troubled by the long lasting chronic condition of this present bout, something I blame to MAV, that on those past acute episodes(even as I knock on wood to never have them again), that as fierce as they were, didn't stayed with me as long as this last one.
So, my encounters with MAV have been intermittent during my life, without letting them rule my life, it wasn't until this actual 1 year and months combination of vestibular injury and migraine, that started on Jan 2006, when I did feel that I need help to keep this junk from ruining my life.
On the bright side, I've had some completely clear bouts, ranging from hours to days, and almost a full week completely clear during this 1yr+ mark, so that both gives me great hope and tell me that I need to give the MAV stuff a try.
The only thing that really has plagued me forever is my allergies, but even as horrible as they are I already got used(not the way to go really) to them and to be like in a permanent cold all year with a huge acute infectious episode on winter almost every year, but even as I was able to live with this, ear plugged included, I'm not able to get used to live with permanent dizziness.
I'm also taking more seriously, something I should have done from the beginning, this allergic stuff just because, as you mentioned in your post, any ear trouble from this, results into a dizzy trouble to me. Add the known co-morbidity of allergies with migraine, and it's a no brainer for me to at least give it a shot also to allergies control as another migraine prevention factor.
You're only into your 5th month, and as I know this is not pretty even for a day, believe me that, unless you discover, like I did, some "hidden" past bouts, which you never pay much attention to(like me again), because of their mild strength and/or duration, you're just starting with this, and with the right Dx, that I believe you already got, it's only matter of patience, time and discipline, to get out of dizzy-land.
In any case I'll keep all you posted about my progress.
I've done alot of thinking about my past and you are right - looking back there were definitely some times in my life that I have had brief glimpses of what I am currently going through. I remember a few times when I was walking, I would take a step and it would feel like my foot would keep going through the floor - which would freak me out for a minute, but since nothing ever happened further, I ignored it. It came and went and that was it. Then there were just a couple of times when I was so dizzy that I had to stay in bed for a whole day, but the next day BOOM, I was fine, up and about and getting on with my life.
This thing since March is definitely a clinger - I have never experienced something that has lasted so long! I can only imagine like you, that I MUST have had some kind of viral/labs/bppv/allergies "event", which is my main problem, which in turn woke up my sleeping migraine monster. So the way I explain it is that I am in a very "fragile state" right now until my inner ear is healed. I just can't think it is migraine alone when I have never had problems in the past but a few "tension type" headaches. It's GOT to be something in my inner ear - it just has to be some swollen blood vessels or something that are activated by the migraine.
I am so sick of dizzyland, that is for sure. I can handle the headaches, but the dizziness is sooooooo unbearable and gets me so dang anxious and feeling out of control. Hate it, hate it, hate it!!
Just to say, migraine can just flare up. Sometimes it is to do with age, it's particularly prevalent in women in their thirties. I also had events prior to the big meltdown - I also do not know if I had VN which triggered this monster or whether it was migraine alone. But what I am saying is that the fact you never had a big event before due to migraine, doesn't mean it isn't all migraine now. It could be. And if the drugs work for you that can be very good news as it means it can blitz this rubbish entirely.
I do know of some people who have got rid of it completely bar the odd few minutes of dizziness here and there once in a blue moon. As it happens, two of the people I'm thinking of had never experienced this stuff before and were suddenly hit with it out of the blue. Unfortunately I'm not one of those who has got rid of it entirely, but I have never been able to tolerate a high enough level of a drug due to side effects, so that might be why. Still, I am able to live long periods of my life in a relatively normal state, having experienced and months of severe symptoms, I am very happy about that. I may try multi pharmacy and add another drug to the mix in the future to see if I can feel even better and avoid relapses.
You're right, you're right hbep - I was caught in a moment of frustration and weakness when I blamed inner ear disaster. Baloh told me the same thing - it can just happen out of nowhere, with a "stack up" of various triggers piled on top of one another time and time again and reaching it's max (threshold). Yep - my age I think has lots to do with it - just turned 40. So we've got fun hormone hell which in itself is a big trigger, plus my lifestyle with 4 children, running around doing soccer games, etc..., I just had, as you put it well, a complete meltdown that I can't seem to dig myself out of. I mean, I probably could be done with this (or at least better) if I would just bite the bullet and take some preventative meds. I'm really digging my feet into the ground on the meds because of fear of side effects. But I know for sure that if I don't calm this beast down real soon I certainly am going to delve into the meds. I will perhaps firstly try what Baloh told me to try - Diamox, and then if that freaks me out too much I will move on to others like Propan (that's yours, eh?). Since you are sensitive to meds too, maybe that one will work well for me since it has helped you. I would love to have months of feeling well instead of what I have now adays which is mere days.
Thanks for the further info! It it inspiring to know that there is help out there to feeling normal again!!
Just like you and hbep, mine hit out of the blue (4 years ago on the 30th). I'm still not certain if I really ever had labs or VN at all now. What has thrown me off the trail for at least 3.5 years was the fact that when this hit I was also hit with a massive sinus infection and was just a viral/surreal mess for about 6 weeks. I thought labs/VN for sure. When first diagnosed with labs, they said it would get worse over a two week period and it did. So I don't know. It may be that the sinus infection really pulled the migraine pin in a huge way. I likely had a whole pile of other migraine triggers sitting there ready to blow as well - just like Krakatoa waiting to blow its top. Who knows. But whatever it was the current vestibular migraine thing fits the whole picture like a glove. In many ways I can't believe I didn't see it sooner. I had to get BPPV (2 months ago) to seal it.
Re the meds. It gets to a point where having to deal with some side-effects is probably easier than the none-stop hell of this thing. I'm there now. About to see the doc and work out the next drug plan. I'll let you know if they give me pizotifen. And don't forget, you may have no side effects, just a clear head again.
edit: just back from the doc. Really impressed with this doc I'm seeing now. She actually listens and read the clinical trial I showed her. She admitted she knows little about vestibular migraine but is keen to learn and to liaise with a migraine specialist friend of hers at Prince of Wales Hospital to help me sort this out. I have to wait to hear on whether or not I can take Pizotifen while on Cipramil. She was keen for me to reduce Cip to a max of 10 mg. At the moment though I think it could be catastrophic so will wait to hear about the other med first.
I eagerly await your trial of Pizo, seriously. Sorry to use you as a guinea pig but since we are similar in hell health woes, I am really curious (and hopeful of course) to see if the Pizo gives you relief.
I just got a call from my dad yesterday and he said he spoke to a cousin of his about my condition and that his cousin said he has the same thing! This guy is around 65 or so, and he said he has always been super-sensitive to motion and car sickness. In fact, my dad remembers how when they were younger, his cousin would always get to sit by the window because he was SO car sick. Anyway, this guy said that he gets the same thing - "dizzy spells" and that he just takes Meclizine when those happen. He didn't go into the whole migraine med thing - I'm going to have to call him and ask him. I just thought it was interesting and another "clue" that I do in fact have some serious migraine issues (i.e. runs in the family, car sickness, etc.)
Let me know asap what happens upon taking Pizo! I hope, hope, hope you can write us with GREAT results!
I heard back from the specialist today from a migraine clinic at one of the big Sydney hospitals. Apparently I can take an SSRI with Pizotifen but should aim to drop the SSRI and stand on the Piz only. He told me to start at 0.25 mg instead of 0.5 mg. Said to watch for any bizarre symptoms (which goes without saying).
Pizotifen is a serotonin antagonist and oddly this is what it says about the drug on the MIMs database (drug info for doctors):
Pizotifen is a cycloheptathiophene derivative structurally related to the tricyclic antidepressants. It possesses appetite stimulating (damn) and antidepressant properties.
So it looks like my main worry on this stuff is turning into an obese mess and serotonin syndrome but unlikely I would think on such a small dose of Piz and Cip. Let the trial begin ... not sure when I'll take the plunge yet.
Definitely keep us posted when/if you take the plunge Scott! I surely hope that this does the trick, or at least gives you some very needed relief. I've had a couple of good days without too much dizzy (yay).
Hang in there! Sorry to hear about your spinning episode the other day. Ugggg
Well I finished my antibiotic treatment for this last infection episode, and I'm OK in that front, maybe with a litlle leftovers so the doc set me for some other 5 days of treatment(to clear the sinus), specially now that my wife got ill too...
On the bright side, and I can't tell that it's related, I've had almost two days clear, aside some hiccups.
I can't tell if it's the clearing of the infection the cause, but certainly the not soreness in my ear helped a lot, I almost forgot how good feels to have a clean head.
And let me tell you I still feel this leftovers, like a residual cold, so I'm not in overwhelming health, BUT, even with that, the clear head of having no dizzies at all felt so good that I almost started to dance.
So as the infection may or may not be the cause of this last episode, I still believe that, in complete compensation, like subs, we will be able to endure a cold, feeling bad obviously because of the cold, but not with the added dizziness...
I'll see what happens after this other 5 days of treatment, and hopefully I can get my allergies specialist appointment soon because, as Tummy said in one post, I feel as delicate as glass when talking about sinus/cold/infections, even as I try to drink lots of citric juice to get some extra vitamins.
Obviously I didn't made any formal VRT, or took anything else to get clear, I can tell that I was more relaxed, and that I walked a lot, not in a workout scheme but because of something I needed to do for my work, and well walking is my main advice for anyone with this for a bunch of reasons, I'll post something on that later.
Finally on my hiccup, it occurred right before I took a hot shower and went out to the cold rain(thanks to Dean), which was exactly what I did the night before my first strong morning attack of 04.. maybe there is something related...
So glad you are doing well stargrave - doesn't it just feel WONDERFUL to have a break from this freaky stuff??!!
Speaking of antibiotics, not to get your hopes down, but when this thing first hit me in March I went to my ENT and he gave me antibiotics (I think it was amox). My dizziness cleared up after the 5th day and I felt wonderful after the full 10 day dose. In fact, I felt normal for all of April and thought for sure "it" was gone. But it came back with a vengeance in May. I'm certainly not saying that will happen to you, stargrave - it's just a warning.
I noticed that you said you are drinking a lot of citrus juice to help with your sinus problems. Did you know that citrus can be a big trigger of migraine? And I recently saw on the news that extra vitamin C does not help prevent colds. So I am just wondering if maybe you are doing more harm than good loading up on too much citrus? Just a thought.
I'm definitely glad you are feeling good - that is great!! I hope, hope, hope it lasts and that you have reached a positive milestone in this illness.
Thanks for the advice, but don't worry, I've been clear for some weeks, and even months and then back to dizzy-land...
I believe, if in both our cases it was VN well the antibiotic sure helps to finish the infection, but now I can't se a relapse, but a decomp, related to all the metabolic mayhem that an infection causes.
Again, in my case I've always been "sick" with some sort of cold/sinus or similar during my dizzy episodes. Curiously enough I could tell you that I've been clear of dizziness while I have a cold(sometimes), but I've never been dizzy without a cold(or similar) involved.
The point is that due to my allergies, I'm "sick" 90% of the time so... unless I get a miracle cure for my allergies, my body should have learn to compensate even when they're present.
As I mentioned before it's not the first time I've been struck by the MAV stuff, mainly fog, unreality, weird vision like looking through glasses (BUT NO jumping or oscillating vision like now), sometimes unsteadiness(mild and without the feel like zombie stuff I get now), and a pull down sensation(like if I was going to fall) but NO SPINS of any kind, No Jerky walking, like sometimes I get this days.
So as my vestibular Issues did started with a true spinning vertigo (BPPV like attack), during a cold, and a year after that(with months free of dizziness) I get, first time ever, oscillating and jumping vision, balance unsteadiness, occasional spinning and nausea, and I have a caloric test detected right ear dysfunction, I could say I'm experiencing both some decomp, or incomplete vestibular compensation, and MAV altogether, with some allergic trouble on top.
The MAV theory goes because of my degree of compensation(I performed quite well in almost all vestibular tests), my past history of Migraine, including those unreal episodes I mentioned, and the fact that somedays, like yesterday, I can compensate in full out of the blue one day, and get dizzy some other, like if I've had a switch, something I relate more to migraine than to a deficit in compensation.
(UPDATE)(More on MAV as a main cause of my dizzies)
After reading what Im dizzy's post on MAV and some of Scott's answers there, no I know you can also woke up with MAV vertigo as I did woke up(sometimes) with Migraine headache.
And now that I recall, my most troublesome vertigo inducing positions and movements, are related with my bending my body forward, and I don't know how much it's related but back whe I've had classic migraine, after the strong attack I spend at least the rest of the day with "leftovers" that mainly consisted in some quick pulsating headaches, mostly when I bend my head or my body forward.
(End of UPDATE)
I'll finish my antibiotic treatment, try something to stay clear from colds, as long as I can, and start right away with B-2 and working out(for VRT) to see what happens.
I'm right there with ya - I still believe I have/had some real ear thing going on to start this whole thing. I too have allergies and sinus infections GALORE. I remember a couple of years ago I had such a terrible ear infection that it made me cry when we were driving down a big mountain. I seriously thought my eardrum was going to burst. Hmmm - I wonder if that particular incident put some "lesions" or something in my ear and it just kept getting worse.
Anyway, I started allergy shots just in June so hopefully this will help me from getting so messed up with sinus problems, and hence, help with the dizzies. My ears are still full and sometimes when I swallow, one of my ears (usually the left, but sometimes the right) stays closed for about 30 seconds so I can hear myself breath (know what I mean?). So to me, this just doesn't sound like something that MAV would totally cause. I mean yes, migraines can cause the blood vessels to swell in the inner ear area - but for 5 months straight??!!
I haven't had vertigo wake me up thank GOD - that sounds completely horrid - but I have had a 15 second episode hit me out of the blue where the world seemed to turn upside down for a bit, and then I was totally unsteady for about a week after that. That was the only time I had that happen and I hope it never does again but I'm not getting my hopes up.