I panic when i read Hains flow chart as im now a Botox candidate ( had 2 sessions) after not being able to tolerate most of the meds…i see this treatment is last on the list!!!
MAV or MdDS? Or Both!
Firstly, don’t panic, Jo.
Have you exhausted the diet exploration? Supplements?
Perhaps you can try some things that aren’t explicitly on his chart? There are other tricyclics for example. Unfortunately the med “crapshoot” takes longer for some. I bet you there are medications on mvertigo that people have tried that are not on his chart
In any case MAV tends to morph, so it will not stay the same and you may get better spontaneously, but the meds definitely help most people (see the poll).
Also be careful that you weren’t too quick to dismiss one or two of the meds because it wasn’t the silver bullet you expected … some of them take time to help and some take time to get used to before you see the full benefit.
I feel for you … keep going Jo!
Ahh thank you James. I can honestly say i never gave a handful of my past medications a chance. Ditched them after only DAYS!!! So yes you are 100% right there. Plus i have NEVER done the migraine diet except remove caffeine…my neuro didnt ask me to do it. Maybe its time to start. Can i ask what is the treament/ tests for secondary hydrops? Ive had ALL the tests from ENT which were normal but i always have pain in my right ear…why just 1 ear?? I often wonder.
I didn’t do any inner ear pressure tests (e.g. Ecog) mainly because my initial workup was based on my original MAV diagnosis. By the time I got to my current doctor, he decided my history was enough to diagnose Secondary Hydrops (I pointed a shower into my ear, so there was clear trauma). In addition after the trauma there was clearly a fluid sensation that started the following morning which I never had before. This was also indicative of injury, so helped to determine a different diagnosis. My original consultant dismissed this as an ‘aberration’ though. It’s amazing how differently doctors will view your case.
I had suspected hearing loss which did help to determine Hydrops. (suspected because I had no prior audiogram to compare it to). However I did lose 10dB of HF hearing during the development of my MAV, so something is going on in there!
I have mild pain in my bad ear occasionally, but I used to get pain in both. I believe there is some ‘central’ element of pressure regulation for your ears and if one gets injured it can impact this regulation for both.
I do get fullness and pressure in both ears but only pain in my right ear. My nose seems to take the full impact of attacks. It feels like it will split open. I was told by my neuro his is actual migrane.
The neurological stuff I definitely get too. Some of it is super weird!
I think one needs to have a diagnosis one can believe in, that is meaningful and makes sense to you in order to move on.
And as you know Helen i firmly believe in my MAV diagnosis 100%. What triggered it at 49 years old i’ll never truly know but we both have an idea dont we??? Menopause!!
I wish the doctors & scientists could work something like that out!
However, it surely isn’t the only possible reason? … we’ve got many younger board members here too.
No. Hardly, not menopause but fluctuating hormones in women, which occur at menarche, post partum or menopause and probably at other times of life for other reasons, such as stress, eating disorders, overexercise and maybe various other illnesses, must account for alot. Both @jojo65 and I can ‘claim’ menopause to have brought on MAV, @dizzy3’s came on post partum. Fluctuating Hormones have alot to answer for I reckon amongst females of all ages. Hormones are powerful things.
Now I know you are not if Dr Hain’s patients, so you’ve no need to panic.
Had you been one of his patients you’d have had cause to worry because who would want treatment from a doctor who was in the habit of holding his own flowchart upside down! It certainly wouldn’t inspire confidence.
Your neurologist obviously has different ideas of the best way forward for you and you never know. You’ve proved the Botox works for you to control the headaches so if/when you have to trial preventatives next, things have changed for you and you’ll find something that works. Helen
They certainly are Helen. I had been happily shopping on my lunch from work Nov 17th 20014 when this all kicked off aged 49. I have never been the same snce.