I found this forum after a lot of internet searching for MAV recovery stories and really liked the tone and feel of the forum so I decided to give this a go. I’ve been on my own with this for 5 months now and really need some support.
Great to hear! Welcome to the board Lucy!
(but equally, sorry to hear you have been suffering)
Very common. I had those thoughts too. Don’t despair! Once you find the right protocol your outlook will improve dramatically!
Make sure you look at the Big Med Survey for some guidance on what people found helpful.
And of course, make sure you read the Welcome note and Support Wiki when you have chance.
Welcome Lucy! I am new’ish here myself and let me tell you… I am so grateful for this forum! Take plenty of time and search around all of the different categories, there are years and years worth of knowledge and first hand experiences. While I have a loving and supportive family, they cannot possibly comprehend what is going on in my brain and can offer only so much in way of support. So, you’ve come to the right place! I and most here know the feeling of desperation, which has been in the very near past for me. I have gone one whole week without desperation and haven’t cried in a week! This is a pretty big deal and huge progress! I am on day 14 of Amitriptyline and have hope because of it and all the support here!
welcome, and I sympatize, my son is 15 months now. Try to ignore the dizziness and to keep on with life, and at the same time, get a lot of rest, sleep, take it easy. It takes quiet a few time for the brain to settle. I’ve been on my med for 7 months, and I am doing much better. As you say, 80% relief. Stay with us, we will cheer you up!
Thank you for your comments !
@Naejohn good to hear you’ve found a bit of hope! I agree family and friends find it hard to understand what it’s like.
@dizzy3 15 months old he must keep you on your toes
Hi and welcome. You certainly sound like one of us so do come abroad.
Try to answer a few questions for you. (In order with apologies, my Ipad’s current OS isn’t truly compatible
Thanks to recent upgrade, awaiting the next).
It’s ih so easy to overdo exercise with MAV and end up albeit temporarily much worse, Once MAV is hypersensitive it does drag on. You get constant symptoms. Some say the migraine came and never left. It can seem that way, also, MAV seems strongly linked with hormones for many women. But the hypersensitivity also extends to medication so …
Propranolol takes a long time to work. You are looking at months rather than weeks I’m afraud. It will work. I take it myself but you need a high enough dose fir an extended period to obtain good results. Five days is nothing I’m afraid although it may be just about long enough to prove your body can tolerate it which is good sign. Far too early to change yet. Helen
Thank you @Onandon03 for your reply.
I definitely think I overdid things the first few months, I thought it would just pass and I just kept going. But now I’m at the point where anything I do, I get super dizzy and headachy, it’s so frustrating… I’m trying to lie down in between everything I do when I can.
Thanks for the feedback on propranolol. I’ll give it a bit longer, I’m having no side effects on 80 mg so far (nor any positive changes) so at least I’m tolerating it well.
Not meaning to nag. But, no don’t ‘lie down between’ - unless you are so dizzy you cannot sit upright please don’t lie down during the daytime. Sit down but not to slouch. Obviously if you are really ill, you have to lie down. I know, I’ve been there more times than I care to recall. Your balance system is struggling to keep you upright and hopefully up straight. Lying down uses different attributes. Every time you get up again the balance system has to reset. Much better to sit up. Use chair with head rest if needed. Slouching/lounging on sofa means your spine is less able to help you balance. You may find initially dizziness and extra fatigue come from the propranolol, known common side effects, should soon wear off. Has your doctor told you if/when to increase the prooranolol at all. Assume you went straight in at 80mg which is lowest starting point for migraine prevention.
As I said it’s far too early days for you to see any improvement with propranolol. Anything up to Four months is quoted regularly with most preventatives. Pizotifen, one of the quicker ones, is 10 weeks, and it’s all very individual and not set in Stone by any means. This flowchart cones from US where medicines do vary slightly (example Pizotifen isn’t available) but just to give you some idea. It’s the best site there is for MAV. Tons of info. Do read some of it. When it comes to drugs selection doctors have to take your general health, age, medical history individual and familial etc into consideration and then some will only use specific drugs they are familiar with to treat certain conditions. Drugs used fall mainly into three classes: their primary use either as an antidepressant, anti-convulsant or betablocker (to control blood pressure) and they are used, ‘off label’ to treat migraine. My own GP will only supply, therefore take respinsibility for my health, betablockers or one particular anti-convulsant for MAV, unless instructed by a consultant. Many MAVers are ultra sensitive to medication. It’s part of the condition for many so not all drugs agree with everybody. I’m just explaining all thus because I know how long some drugs take to work and how difficult it can be waiting. @Jessyka_Nettleton takes propranolol and she seems very similar to you in symptoms perhaps she might be able to give you a better idea of timescale. Might save some chomping on the bit. Helen
I am so sorry that you are a fellow sufferer…it truly is an awful thing to be dealing with.
You have probably ruled this out as a cause but just in case you haven’t I thought I would mention it - have you been back to the dentist to rule out a possible complication of the surgery as a cause for your headache and dizziness? He should be able to do an X-ray not just of the tooth but of the whole mouth and cheeks - I think it’s called an OPG X-ray, it might be worth considering just to make sure. I know you had it before years ago but for it to strike again out of the blue and 2 days after surgery makes me wonder if there is a link.
@Mav Thank you I’ll talk to my dentist. I do think I would probably have some pain in my teeth or roots if anything was wrong? I recovered from the wisdom tooth removal itself fine as far as I can feel.
Today I went back to the clinic and they explained the diagnosis of MAV a bit more; they think I had vestibular neuritis the first time round which might have made that area more sensitive.
I’m still baffled and bewildered as to why I’m still so dizzy five months in.
They also said to give the propranolol a good month. Fingers crossed.
Hi. You seem to have good medical support if they are ‘explaining’ MAV to you. That’s helpful, and not something I’ve ever had the opportunity to experience. Here’s a good written account for reference.
Please try not to be bewildered. MAV is the strangest thing to get your head around. It’s common, normal, routine even for it to make you dizzy long-term. I was 24/7 dizzy from December 2014 until March/April of this year - over three years in fact, then propranolol rescued me. I’ve had weeks of not being dizzy since, interspersed periodically with shorter periods (couple days at a time) of lower grade dizziness. The hypersensitivity takes time to settle. The propranolol will kick in eventually although I’d say giving it ‘a good month’ to work is being overly optimistic. That’s more the speed amitriptyline is predicted to work. Helen
I have been suffering for 2yrs, tried loads of migraine meds and nothing worked. I recently had a sinus ct scan and it was discovered that I have a major issue with my sinus that may be the cause of my daily headaches and dizziness - sinus surgery is the only way for me to find out for sure.
Are you seeing an ENT at the balance clinic? I ask this because 2yrs ago I had VNG/ENG testing with a normal result and was told by a consultant audiologist that my ears are not the problem - however I only recently discovered from my ENT surgeon that ENG/VNG only tests the semi-circular canals in your ear so a normal ENG/VNG only tells you that your dizziness is not being caused by the semi-circular canals. Apparently there is a whole range of tests that need to be done before the ear can be TOTALLY ruled out as the source. There is a poster on here who recently listed all of the ear tests but I can’t remember who it was - it might have been manatee who listed them but I am not sure. Based on my own experience, I would be dubious about ruling out ears without an ENT opinion.
You mentioned the mini-pill - I was on it for many years in my early forties and had no problems but 3yrs ago I suffered some mild hair loss so my doctor took me off it. When I went to the neurologist 2yrs ago with headache and dizziness he told me that it was the onset of the perimenopause that was causing my symptoms - fluctuating hormones to be precise! So I went to a gynecologist, she tested my hormones and while she didn’t agree that I was perimenopausal she put me back on the mini-pill as a way to take my hormones “out of the equation” to see if the headaches and dizziness would stop. I lasted 14 days on it before I had to stop - it gave me a permanent headache in my forehead and my head felt “swimmy” on it. As u know the mini-pill works by drastically reducing your estrogen levels and for me at my age I guess it just pushed them too low. You mentioned that your first episode of this occurred after the birth of your baby which is a time of major hormonal fluctuations - I wonder if you have a hormonal imbalance that could be causing this for you. I do know that some women who suffer hormonal migraine are treated successfully with the combined contraceptive pill. (It was not an option for me to try that because I am on the wrong side of 40)
Lucy I have learnt over the last 2 yrs that something causes this - if the current meds don’t work for you then keep digging for answers. Check with your dentist to rule the surgery out and then take another long look back to before this all started, there may be some clues that might help you get to the bottom of it.
In the meantime, stay strong and keep up the fight. You will get great support and advice on here.
Lucy it was a post from manatee that listed a number of ear/balance tests - you will find it in this post
Here is Dr. Hain’s page on testing, with lots of links to the individual tests:
@Onandon03 gosh 3 years that’s a long time. May I ask when you started the propranolol? How many mg are you on now? I’m at 80 mg but not feeling anything,neither side effects nor positive effects.
@Mav thank you for the comprehensive way you looked at everything I wrote, what you write echoes my sense that not all is clear yet; maybe yes it’s MAV but still, I had a tooth out, there’s a hormonal aspect to it… maybe I need a second opinion and look into things more.
Question that probably gets asked a lot, forgive me, but I thought migraines come and go, and I seem to be dizzy all the time… is this a normal variant of MAV?
The balance clinic person I saw yesterday said that the ENT believes I had vestibular neuritis four years ago, recovered in normal time range (7-8 weeks of symptoms tapering off gradually), but maybe was left with increased sensitivity in that area, which was then triggered by tooth removal and other factors. Does this sound plausible ?
Nearly five months in now… this is so tough. Will it ever go away ?!?
I started Propranolol in December 2015. I worked up to 130mg which helped quite alot, controlled some symptoms and helped with others. Was too low dose for me I guess. Saw another neuro February 2017 and she upped it, over the maximum UKGP’s can prescribe cos it’s over recommended migraine prevention dose and I’ve been there 18 months now. Even then it took 8 months at upped dose before really good results started to kick in, ie the 24/7 dizziness stopped then gradually.
The ‘dizzy all the time’ is MAV. Summed up in one phrase. That’s it. There are alot of other symptoms too. Each gets their own allocation it seems. It will most probably eventually go away. The balance clinic person’s hypothesis is plausible. Something tormented an already wound up vestibular system. Doubt you’ll ever know for sure. Helen
It should get much much better.
I’m 3.5 years in from my acute balance episode (that lasted 5 weeks) and after 3 years of chronic, my balance is usually perfect again (although I get the odd relapse, the latest just an ‘off’ feeling during cold )
Also take a look at this poll