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New - could do with some support!


#1

Hi everyone,

I’ve been having a really difficult time dealing with a diagnosis of MAV. A quick background: I’m 23, and have been experiencing the following symptoms for 7 months now:

  • Disequilibrium exacerbated by movement
  • High pitch tinnitus in both ears, predominantly in the left
  • Ear pressure in my left ear that was initially there constantly, but now is only felt when I move my head up-and-down or side-to-side
  • Pulsating sensations in left ear
  • Clicking in ears when running
  • A very slight feeling of my eyes pointing in different directions sometimes
  • Fatigue, brain fog, poor concentration
  • Depression and anxiety

These are my only symptoms - I very rarely get headaches, but have had two episodes of migraine headaches with aura in the past. Initially I was incredibly worried that I had early onset Meniere’s due to my ear issues mainly occurring on the left, but a vEMP test revealed abnormalities in my right ear which, along with my bilateral tinnitus, is apparently more indicative of MAV.

I’m doing everything that I can practically: I’ve been put on 10mg amitriptyline which doesn’t seem to have done much other than make me feel sedated. I increased this to 20mg last week. I’m taking magnesium, co-Q10 and turmeric, and plan to add riboflavin, feverfew, ginger and vitamin D on the off-chance that they make a difference. I’m on an elimination diet and have cut out everything recommended in ‘Heal Your Headache’. I’ve also eliminated gluten, dairy, and have reduced sugar and salt. I’m trying my best to stay on top of sleep and stress, and exercise regularly.

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I’m not entirely sure what I’m looking for on here, but know that I could do with some emotional support. I’m in the final year of an Oxford degree and finding it incredibly difficult to manage this condition and the way it’s making me feel. This illness has already affected my life in a number of ways: my social circle is shrinking, my relationships with my parents and boyfriend are suffering, my grades are slipping, I find it difficult to leave my room, I’m sick of being on a highly restricted diet, and my anxiety and depression are terrible. I’m unable to afford private treatment or therapy so I’m dealing with painfully slow NHS waiting lists. Above all else, I’m really struggling with the idea that this isn’t going to change; that all of the medications I try are going to fail, or even worse, that it may get worse or turn out to be Meniere’s after all. It’s so difficult for me to accept that my life might be dramatically limited by this whilst watching friends planning and beginning successful careers. A cruel irony of this all is that I was planning on studying graduate entry medicine and specialising in Neurology, and if things stay the way they are, this isn’t going to be possible.

I’m sorry that this is so negative, but it’s so exhausting trying to maintain an optimistic outlook after 7 months of suffering. I was so careful with my health before this started which makes it all the more frustrating. I just want to have my life back. If anyone has any encouraging words, I could really do with them.

Daniel


#2

Hi Daniel,
Due to lack of sleep because of this nightmare condition I don’t really have the energy to write too many ‘encouraging words’, but,having suffered from it now for a year in total I can say that I understand in terms of how debilitating and depressing it can be. I don’t think there’s any onus on you to be ‘optimistic’; I mean, it basically does suck.
That said, you seem to be taking lots of positive steps to try and get on top of the condition and other posters here seem to be saying that the amitriptyline really can work, so maybe see how you get on with the increased dose. Regarding the NHS waiting lists, I found the clinic I wanted to go to and asked my GP for a referral. The wait was a couple of months, which is not ideal, but I think it helped that I knew where I wanted to go.

Do you think it’s better to have MAV than Meniere’s? In other words, do you think MAV is more easily dealt with? From my own research I felt there seemed to be trial and error with medicating for both conditions, but that maybe things were a bit more clear cut (with fewer variables) with Menieres. However, I could be wrong about that.


#3

OMG poor you!!

My first love did a degree at Oxford and she had to do so many all nighters and that’s tough enough fully fit!

Can you get a dispensation from the college and do an extra year, or is that not possible?

Amitriptyline is BRILLIANT for MAV, I hope you get on with it, I’m on 20mg too. This should REALLY help you conquer your studies and remain sociable, even if not so crazy as before.

You know its UNBELIEVABLE how many young people seem to get MAV … I thought ear trouble was a middle aged man thing!

One last thing - BE OPTIMISTIC - most people DO ACHIEVE REMISSION! There are those that are less fortunate but you are young and that will surely weigh things in your favour. Hang in there! Mine is way better now than 12 months ago (I’m nearly 2 years in in total and seems like on a very slow remission with occasional relapses)

Best of Luck!!


#4

Thanks very much for your response. I took at the thread that you started and I’m so sorry you’re having to go through this; it sounds as if your symptoms are far worse than mine, which are bad enough. I really hope you’re able to find a medication that works for you.

It’s probably a waste of time comparing two horrible conditions, but the prospect of hearing loss and long term, progressive damage to the inner ear in Meniere’s terrifies me. In some ways I take comfort from the larger number of variables and treatments for MAV, because I can maintain hope that something will eventually work to rid me of these symptoms long-term. There also seem to be more promising migraine treatments in the pipeline than there are for Meniere’s. I’m not sure if CGRP monoclonal antibodies (which are currently in phase III trials in the US) will work for MAV, but they seem to be showing promising results for treatment of classic migraine, which is reason to be hopeful.


#5

Thanks so much for your reply. It’s certainly not easy, but to be honest I count myself lucky to be at university, where I can work from my room or in libraries rather than having to commute and move around a great deal in the work environment. I’m so happy to hear that amitriptyline has worked for you, that must be such a relief. Can I ask which symptoms you had specifically, and which symptoms the amitriptyline has improved?

You’re right that most people seem to achieve remission, and I’m trying to keep this in mind. It’s just challenging when these threads are filled with with stories that are similar to mine but have persisted for years. I’m also really struggling to accept this diagnosis over Meniere’s given that I don’t experience the range of other symptoms that others on here seem to (headaches, nausea, numbness, photophobia, visual aura, pins-and-needles etc.). Most symptoms seem to be relegated to my ears. In an odd way I wish I could experience the odd headache just so I could be sure.


#6

Just a note to say that they call it ‘Migraine’ but I suspect for most its still ‘Ear Trouble’ of some kind. Migraine is secondary to the trouble you have with the sense, imho. If you look at Dr. Hain’s website you can see that many kinds of ear trouble give you migraines, but he also notes a similarity between MAV and Menieres as if ‘part of the same spectrum of conditions’.

Meniere’s presents very differently to MAV though … its not continuous and you usually have major hearing changes during an attack. MAV has continuous symptoms (but NOT continuous migraines in my opinion, I just don’t buy its a migraine giving you continuous tinnitus and the tinnitus never responds to the meds!). However, the migraine meds work and I suspect that that is because a lot of migraine sufferers have peripheral problems of some kind.


#7

Hi Daniel, Just to say hang in there and try to stay positive. I cannot imagine what it must be like trying to study with this beast on your back - but just think - if you persevere and go on and specialize in Neurology, you will have first hand knowledge of this affliction, and think how many people you will be able to help!!!

I know that a lot of people seem to fear Meniere’s more than MAV, but as one who suffered Menieres from age 20 until it seemed to morph into MAV during last year (48 years later)…apart from the partial hearing loss and low grade tinnitus in the affected ear I’m inclined to feel that there is little to chose, except that I did’nt suffer the 24/7 feelings of tiredness, off-balance and borderline nausea etc, etc with Menieres’!

On a practical level, you are certainly doing well by trying to cope on several levels. I think that especially on the restrictive diet, the addition of riboflavin and/or possibly a multi B vit combo would be a good idea. Hopefully you will soon be able to find the right strength med to help keep the symptoms at bay and that you can get back at least some of your social circle. Sadly, some will fall by the way side - just remember that they were probably not worth the effort anyway.

As turnitaround says - most people do have remissions - so just try to stay optimistic and believe that 'this, too, will pass!'
Good luck!!


#8

Daniel on symptoms take a look at my long term journal I keep in one thread, here:

Any ear trouble is a problem because it’s so hard wired to the brain. It doesn’t have to be as serious as menieres to be very very upsetting as you’ve discovered. Any disturbance of the inner ear fluid will upset a vestibular system that was tuned when pristine. And that will make you susceptible to a migraine.


#9

Hi Daniel,

I had this condition happen to me at a top British uni as well. Four years ago exactly to this month. I would like to reassure you that you will find a solution that will enable you to lead a normal life again, but you will have to limit stress more, at least in my experience.

I would recommend that you go see another neurologist who knows about vestibular migraine if your current dr isn’t willing to ramp up your dosage enough to eliminate your systems, trial you on different things if you aren’t finding enough relief, or mix drugs in combos that might help more.

Your body will naturally heal in time as well, that’s the main thing to remember.
My disequilibrium is far better now and I do not get as much sensitivity to light. You need to eat a lot of B12 to get your nerves repaired from initial onslaught. I think it usually is caused by labrythitis/vestibular neuritis. I was a vegan/vegetarian for several years before it started and being in the UK I was likely also Vitamin D3 deficient- that’s also a very important vitamin for immunity.
You may want to start eating both Vitamin D3 supplements and B12 supplements (a high quality one that is absorbable). Get a GP to check your D3 levels.

Heal Your Headache is a good book to understand how food and other things like MSG affect your symptoms. You will probably find that high tyramine foods like citrus, nuts, and especially the vasodilator MSG will make your symptoms worse by making your blood vessels in your head expand and press on your nerves, aggravating them - they are already inflamed and hurt by the initial vestibular neuritis. It takes time for them to heal and calm down. The main thing you can do is try to eat very healthily, well rounded diet, exercise when you can to try to get your balance back, and be as positive as you can.

(NB from admin: these images link to a products this member has found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. Thanks for your support!)

I know it’s hard to be positive. God is there and prayer helps. At least it helped me. There were outcomes of this illness that were positive to the extent it taught me not to be so utterly stressed out all the time and open myself up to other things in life- find more of a work/life balance.

I work full time again and am only taking KAL brand magnesium glycinate (400-600mg a day in split doses) but it took me a while to get there and I do have to be careful about MSG or tyramine or else I get a full one migraine if I eat enough of it - pressure behind my eye, sometimes ear clicking etc.

Take solace in the fact there are many more people out there with this than you might think. There needs to be more research done on this variant of chronic migraine.

Moreover, since you have a good sense of what you have (vestibular migraine) you can go to a dr and trial some meds to see if that calms stuff down. As for me, I had good results from gabapentin at low doses, nortriptyline as well , but a friend who has this responded well to zoloft. I did not like topamax, but others on here swear by it. (For instance this is someone who responded well to a mix: http://www.xojane.com/issues/migraine-associated-vertigo)

All medications for migraine had side effect for me as someone who is senstiive to meds, so I am happy to say that I have responded well to supplements even more than meds. I recommend this site below very highly, as well as St Johns Wort (which acts like Zoloft) . Don’t take SJW if you are on meds. Ask your dr first. Feverfew is also helpful. Magnesium (a nerve relaxer) is my most important suggestion of all. https://www.drweil.com/health-wellness/body-mind-spirit/headache/migraine-headaches/

I’m getting married in May and feeling very happy that I can enjoy life again! I am mostly recovered but of course never will be exactly the totally carefree- out all night type of person that I was before. A lot of people have migraine symptoms that involve their ears, and so do take comfort in the fact that this is extremely common especially in an age where people are cutting down on their red meat consumption (I try to stick with grass fed, humanely raised though) not getting enough sun and having too much stress. (that’s my theory anyway)

Best,
Liv

PS I eat gluten and dairy no problems- so I wouldn’t go overboard with cutting out things you like to eat. Chocolate, citrus, MSG (“natural flavorings” in many processed foods, including yogurts and salad dressings), too much red wine or beer and any caffeine beyond 1 coffee do me in. It causes more eye pressure (usually left), left ear pressure, and then just general anxiety because I know the migraine symptoms are coming.


#10

Hi. My daughter (12) was diagnosed with “recent glandular fever” in January. February she started getting vertigo and headaches 24/7. We have seen neurologists, endocronologists, physio and chiro, homeopaths, rheumatologist, dentist, ENT, optomotrist and now, a Functional Medicine doc. The headaches and vertigo are severe and no meds seem to help. She was put on Propanalol end July and a week ago on Cerp and Eltroxin (was tested positive for antibodies). We saw a Biological dentist today, he reckons her milk teeth are blocking the permanent teeth, the permanent teeth are growing into the sinus and thats the cause of her headaches. Im not sure. It kills me that she is so young and have no quality of life. She is homeschooled but can hardly do any work and have given up sport and friendships. She is seeing a psychologist for anxiety and depression. Any suggestions? And how long for the meds to kick in, if at all? Thanks :smirk:


#11

Dear Daniel,

Don’t give up. It may take you longer for your symptoms to subside than most. Stick with the migraine diet and make sure you get plenty of rest. I know with school and studying this is hard. The stress could be making it worse also. I find that doing deep breathing several times a day helps. If you continue on the diet and get your rest I feel you will get better. I found that omitting gluten really helped too. Are you omitting gluten? Its worth trying. My symptoms appeared after I finished nursing school. The drive to keep a 4.0 average nearly wrecked my health. As I reflect back a 3.5 would have been just as fine. We can be so hard on ourselves. I also find that the crystalized ginger (it has to be crystalized) helps a lot with the motion sensitivity. (Available at trader Joes and Whole Foods Keep in touch and continue to let us now how you are doing. You will get better.


#12

I guess you missed the date on this post, March 2017. We’ve actually heard Daniel’s success story since. You’ll find it i. The Welcome/Wiki section. On 70mg Noritriptyline, he’s now going to train as a neurologist so at lesst we will have one more, somewhere, who understands MAV. From small acorns and all that. Helen


#13

Thanks for letting me know that. I will go back to March 2017 read Daniel’s story. Daniel will be a wealth of information as a neurologist for this forum.


#14

If you click on his Avatar top ofthis thread you can pick up all his posts right through. Applies to everybody else too. Or his story is under Success Stories on front section. Helen


#15

I am having trouble navigating the website and responding. I am pretty computer savvy but I feel it could be brain fog right now. Do I check at the top of the page for responses to my questions? I see there is a green circle with numbers in it and when I click it on I see a list of responses. I also get email alerts but when I go to the website I lose the where the question is and have to go hunting for it. When I get a headache and feel weird, I can’t concentrate that well when I am on the computer. I will do my profile when I learn how to use the website better.


#16

to pick up threads you are ‘involved in’., Check there’s a blue circle close to the last date right-hand side. If there isn’t one look under last post lefthand side for word ‘tracking’, click on it and chose, once system knows to track, it will advise you of new replies to that thread, tiny cicle with a number in will appear to right of yr avatat top right of screen. Circle to left with no. In means somebody is PM’ing you, private messaging you. To just see what threads hv recent post check home screen for last activation time. Subjects you havent seen before will appear bold, others shaded. Somewhere @turnitaround can say where, there’s a tutorial bit but I’m not sure what’s in it. Never looked.

Half the world never fills Profile in. It’ll wait. Know what you mean, brain fog doesn’t aid comprehension a bit. Mine’s on go slow today too. Helen


#17

Thank you so much for helping me with the website. The website is a wealth of information and encouragement!


#18

You are very welcome I’m sure. I’d hate to see a willing contributor held back for the sake of a couple of minor practicalities. Many plp just lurk in the background, read, and learn which is fine but without active participants there wouldn’t be anything to read and everybody has a contribution to make which might help somebody else now or in future so the more that join in the better. Helen


#19

Yes Helen is correct. The website also isn’t so busy that the Topics go down the list too far. If you are on ‘Latest’ view (selected at the very top and is default) you should see the Topics you are involved in fairly high up the list even if you log in once a day. As Helens said, look for ones with blue circles and numbers in them.

However of late everyone has become very chatty (which is great) but that can mean the Topics get very long and occasionally people of on tangents :slight_smile: . You may need to scroll back up a Topic to see people’s responses. Direct responses may show with an arrow and your avatar if they are not the exact next post and have pressed the reply button on your post, not the one at the very bottom.

Once you have enough time on the site you should be able to edit posts you’ve already submitted with the grey pencil icon at the foot of that post.

Any questions, please don’t hesitate to ask.