Feeling grim today

I agree about the scans mariann - sometimes they just give you something to worry about. But there was a sound reason for this one as they had to rule out an acoustic neuroma - which thankfully has not been ruled out - hooray!

I dd not realise that whiplash could cause such a problem with migraines - I am glad that things are improving for you.

I sometimes wonder why there is this pressure to have scans etc when they don't help the situation. I suppose you now know you don't have a tumour whiich is a relief -if only the pain would go away!
Your pain sounds similar to when I was suffering Whip Lash. Constant migraines but not the ones which force you to ie in a dark room, just always there and everyday. I'm relieved to say mine have disappeared, after 3 months and as I avoid quite few triggers
am mostly migraine free.
Sometimes I find Codein the best thing for facial pain. old fashioned but it works.
Thinking about you....

for Lucky girl x

"luckygirl" I have no helpful suggestions for you but sending a (((hug))). and
I hope it gets resloved soon.

It was not suggested by the medics Galen, but I thought about that - I think the fact that the pain is not totally excruciating (which I understand is a feature of TN - it is jolly painful, but most of the time I am able to carry on in some measure when it is bad) and the presence of balance problems might be behind the diagnosis of vestibular migraine rather than TN. But there at some features of TN - pain in my one nostril and in my face, numb tongue on one side, pain in one eye and ear.

I just wish someone could make a diagnosis that carried some hope of a good treatment - that would make life so much easier. I keep my fingers crossed!

lucky, sorry to hear it's so bad at the moment. I hope something can be done to improve things for you asap

Has anybody suggested it might be trigeminal neuralgia?

Doc has rung with results of MRI brain scan. All normal (except for changes related to my age; but there is a "small haemangioma in the right parietal bone." It is just an incidental finding and would warrant ignoring, but for the fact that it is on the right side that I am getting pain - in my ear and eye and head - so I will discuss it with GP at my appointment on Wednesday.

Interestingly I had a haemangioma on my tongue several years back and it had to be removed because it would not stop bleeding. Procedure was totally painless - but boy did it hurt afterwards! - deep cut all the way across my tongue with stitches which broke down after a few days - grim, but now in the past!

also ....just a thought how are your potassium levels....I believe my RLS could be that I take bendroflumethiazide which as a diuretic can sometimes upset this balance and make all your bits ache and fidgetxx

luckygirl I am sorry that you feel so unwell,I didn't realise the the technical term for RLS is akithisia,I suffer from this occasionally albeit in a mild form,I am just wondering with your combination of medications that Quinine Bisulphate might be considered....hope you feel better todayxx

Thank you all for your kindness. I think "with horror" about sums it up - I hate it. It is difficult yo explain why it is so very distressing, as on the surface it sounds trivial.

I will look up the ferritin serum level - thanks for that - knowledge is power!

I've come late to this thread - I'm so sorry you are suffering so much Lucky. I suffered from RLS in both my pregnancies and I remember it with horror. Thankfully it didn't continue. I have no advice that hasn't already been given, but just want to offer my sympathy and hope things improve for you very soon

Oops..posted too soon.
Another thing..... ferritin serum is the iron that is stored in the brain and it benefits RLS sufferers if their ferritin level is up around 100..... as opposed to a level of around 20 which doctors consider normal. Easier for you to google - RLS ferritin serum level - than for me to try and type it up. I'm only on my Kindle.

It is indeed RLS Day.

I see from that link that it RLS Awareness Day today!

Thank you so much Coolgran. That is very useful.

Luckygirl I have it in my legs, arms, and shoulder. My treatment is rather hit and miss but better with than without. I find that I have to supplement with a second medication.

The anti seizure medications (rather than ropinerole) are considered to be very useful in relieving the symptoms of rls. One of the leading experts in the treatment states that if an antidepressant is needed then it should be prescribed and any side effect of rls then treated accordingly. If you find you have to cope with rls a good site is rls.org. It is The RLS Foundation and they have a superb discussion board.
Good luck.

Yes indeed Coolgran - akathisia is RLS only applying to the whole body. Treatments like Requip do not mix well with Dosulepin (my anti-depressant). This is why I have to see the doc to discuss how we can deal with it.

I am so sorry that you have this wretched condition, but very glad that you have a treatment that works for you.

Luckygirl - could you possibly be suffering from Restless Legs Syndrome. It is well known among sufferers that most antidepressants can trigger this condition or worsen it. I have it very severely 24/7 and without my particular medication which sort of controls it would be unable to cope. It might be worthwhile googling RLS and see if the symptoms ring any bells.

So sorry you are having such a grim time. No suggestions that haven't been made by others but do agree the side effects are very extreme. Hope the MRI outcome is positive for you.

Hope you feel better soon, we all have these grim times now and then, but they do go away.

I may feel better tomorrow when I have had the results of the brain scan.

Teetime - I am sure you are right about doing too much - but how can I not do the things I love while I still can? It is so frustrating not to be able to lead a normal life without making myself ill. I guess I do not want my life (or indeed me!) to be defined by my ill health. I feel I have a lot to offer this community and my family and do not want to adopt the "sick role."

I have just had to cancel tonight's singers, as running a rehearsal really does require me to be on top of things - it takes huge amounts of energy and enthusiasm which I am not able to muster tonight. It is so annoying.

I am dreading tonight and just hoping that the akathisia does not set in again - it is far more unpleasant than you can imagine if you have never experienced it. I know that others probably have far worse problems so I am probably just feeling a bit sorry for myself today after the lack of sleep.

lucky I wonder if you have been pushing yourself too hard lately and your body is trying to get you to rest more. the migraines must be very debilitating. DH has had them since a child and we have learnt his triggers but sadly he finds as he gets older tiredness will bring them on and it will go on for days and days. Also sadly he finds he is less able to tolerate alcohol and even one drink will set him off sometimes. I hope you are getting some relief and some proper rest. best wishes.

Would you qualify for botox treatment or is it not the sort of migraine that would be helped by it? Other than that I think a complete medication review is due.