MAV and maybe Hemicrania Continua

Hello, I was on this forum years ago with my Migraine associated vertigo. Things improved for me eventually although I couldnt tolerate the migraine preventatives.
I used to get severe vertigo attacks all the time, but over the past few years, just maybe one a year.
6 x weeks ago I woke with the stuffy nose, pulsating ear, and slightly deaf.Used steroid spray and the following day ear drops, this all resulted in a full blown vertigo attack which went on for 12 hours and then the migraine started. I am used to this pattern but what followed is totally different. I ended up with a one sided migraine, up the nose, above the eye down deep in one side of the head, the same side ear muffled and head in a bucket sound and pulsating tinnitus roaring, this had now gone on for 6 x weeks and its there all the time.
I have read about this new type of headache called Hemicrania continua and wonder whether
this is part of vestibular migraine or another type completely.
I also woke in a recliner chair at the time with my neck bent over where my head had fallen on my chest and my teeth were clenched and numb, but the ear fullness etc. had started 3 x days before that.
Any information would be appreciated as my doctor gave me propanalol (which I couldnt tolerate all those years ago) which has given me side effects so am having to stop.
I also suffer endolymphatic hydrops, and eustachian tube dysfunction.

Hi and welcome back. No doctors here to diagnose you I am afraid and as you have two other likely culprits in your other existing conditions I would imagine it could prove difficult even for the most expert experts as one might say. Better seek out medical assistance.

Hemicrania Continua certainly gets mentioned occasionally. All I really know about it is I read there is a drug treatment which is both diagnostic and generally successful. The drug is called Indomethacin. Sometimes other drugs are used such as Verapamil and others MAVers are familiar with such as Amitriptyline.

I notice you list both Paracetamol and Codeine on your User Card. From what I read Codeine is not favoured from migraine and is also very addictive. From reading that together with being on this site what actually comes to my mind from reading your script is the possibility of Rebound Headaches. These are caused by the overuse of painkillers and will both produce continuous symptoms and also stop preventatives working. Use the Search facility on here and you will find many references. I think you will find Rebound Headaches amongst migraineurs are common. Somehow much more so than Hemicrania Continua. Check it out and see what you think.

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Hello Ornandon,

Thankyou for your reply.
I used small amounts of painkillers nowadays for my MAV as I tried 20 preventatives many years ago with too many side effects for me. Although painkillers dont offer complete relief, they have given me a life over the years.
I was under Neurology at Oxford for 10 years and have been to Goadsby in London in the past. My problem is that I am very med sensitive.
I dont think I am on rebound as I take a very small amount of painkiller (eg quarter of codiene tablet with 1 x paracetamol.
I was doing OK until this other type of head developed and affected my ear which is still very muffled, feels worse after laying down at night.

I get headaches that last up to three days, are on one side of my head, and sometimes have a stuffy nose on that side. While mine don’t meet the textbook definition of hemicrania continua, the only thing I’ve found that helps is Indomethacin.

Indomethacin is a powerful NSAID that is usually used for certain types of arthritis. It would be worth a try for you to see whether it lessens the headache pain; you’d know after one or two doses whether it helps.

If you do take it, be aware that Indomethacin is very hard on the stomach. MAKE SURE you always take it on a FULL stomach (immediately after a meal) and with a full glass of water.

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Hello, thanks for the reply.
I have had migraines for a number of years that have lasted 3 x days, they are usually at the back of the head. This one is one sided and in the exact same place day and night.

Can you tell me, are you taking Indomethacin every day all the time or just now and again for the headaches? Do you find it causes constipation? I know Brufen causes me to have constipation so I cant take it long term.
It certainly seems worth a try.

Oh, no, it’s not a preventative. Not something you’d want to take all the time. I only take it if I have a headache, and only if the pain is too much for me to function.

For me, Indomethacin tends to cause the opposite (loose stools). As I said earlier, it’s hard on the digestive system, like most NSAIDs are.

Thanks. I might ask my GP for some to try and take away the constant headache, I will make sure I take it with a plate of food!

One sided and ‘lasting three days’. Sounds kind of textbook. Why can’t these be ‘migraine’ or at least as the neuros are so fond of saying ‘migraine equivalent’? Symptoms morph over time. Apparently the dizziness often gets totally replaced by headaches or vice versa. Chronic Daily Headache/Hemicrania Continua (Latin for the same thing) probably all part of the migraine spectrum. I know they are totally disruptive and until we get them under control we are going nowhere fast but I suspect they are just all part of the alloted package. To feel good I know I need a crystal clear head day and I could certainly do with more of those.