Forum

Disheartened with waiting

Hi, Ive joined on here to try and get some other points of view. Brief version is that ive had numbness tingling on and off for over 7 years. Along with back pain, muscles cramps, weakness, twitches, eye pain, bad fatigue, difficulty walking, no energy. Since january ive had constant numbness and its really starting to annoy me. My oesteopath suspected nerve damage of some description. The Gp sent me to the spinal clinic who also said it was neurological, not the spine. Today i finally got to see the Neurologist. But am very disheartened at my appointment. I had to fill in a sheet of symptoms, medications and previous history before going in. When i went in to see him. He looked at the sheet, checked my reflexes, and said its chronic migraines. gave me a sheet to follow and said to follow it for a month (but im already doing what it says on the sheet), then if not better go back to GP, which would then prescribe anti phycotics for 3-4 months. if its still not better, then ask to see him again and he’ll sort a brain scan! I was in there about 10 minutes, i felt like i wasnt listened to at all but instead on a conveyor belt to get out of his office as quick as possible. I havent had a migraine for months (on average 2-3 a year) Im really so confused and down. has anyone else had this experience?

sorry i havent had that experience

but have bumped you up

carole x

Thanks Carole x Forgot to say GP had already suspected MS after doing several other tests. As did Physio.

Am I reading you right? Did you mean antipsychotics, or is that a typo, or one of the weirdly random corrections that occur on some tablets & phones?

Is there any evidence you are, or ever have been, psychotic? They are sometimes used to treat other conditions, including depression. Did you history suggest you’ve ever suffered from anything like that?

I’ve never heard of antipsychotics being prescribed for neuro symptoms before, or for migraines (although there are lots of things I haven’t heard of, so it doesn’t necessarily follow it’s not legitimate).

But in your place, I’d certainly query why I’m being considered for antipsychotics, and especially why that is being suggested BEFORE getting a brain scan. I know there’s probably a cost argument here (MRIs are expensive), but personally, I’d rather have the scan to check if anything’s wrong, BEFORE I started antipsychotics, just “to see if they help”. I’m not sure a neuro is the right person to be suggesting antipsychotics anyway - I would have thought that’s more of a mental health issue. And although they deal with the brain, neuros are NOT specialists in mental health, strange as that may seem.

Perhaps you can have a chat with your GP, and ask why this is being suggested? You could also ask to be referred to a different neuro, for a 2nd opinion.

It’s worrying that a physio already thought you might have MS, but they’re still putting the scan on a back burner. With hindsight, I firmly believe a physio was one of the first to suspect what was wrong with me - well ahead of my GP, or anyone else. He actually noticed the spasticity (though he didn’t call it by that name), and asked if I’d been ill! I, of course, had no idea what he was talking about, as I had no inkling of being ill at that time. I’d gone in there feeling quite fit (apart from the injury I’d gone there for), and was shocked to be told I had the shortest calf muscles he’d EVER seen! OK, I realised I had an injury, but I didn’t think I was some kind of mutant.

Now I look back, I think he must have known or suspected what was wrong, but probably didn’t feel it was his place to spell it out for me, if I clearly didn’t know. He didn’t work for the NHS, so I suppose he felt his hands were tied. He couldn’t write to my GP or anything. But physios know what normal muscle tone is like, and they know what abnormal is like, too. I wouldn’t dismiss a physio’s suspicions.

Tina

OK, update…

I’ve just found out that some antipsychotics (i.e. at least one!) are occasionally prescribed “off-label” (i.e. not for their licenced use) for “severe migraine”.

So if migraine is what he believes you have, it’s not barking that he’s suggesting antipsychotics - but still a little unconventional.

But if you only have 2 or 3 migraines a year, I’m not sure 3-4 months of antipsychotics would prove anything either way. The chances are, you might not have had a migraine anyway, in that time.

Tina

Thanks Tina. It’s totally thrown me. I’ve been waiting so long to see the neuro I thought finally something would be done, ie a scan. And then he came out with this. I felt very rushed through the appointment and he didn’t even ask about my history of symptoms. Episodes of eye pain, fatigue and numbness going back over 10 years. Am going to try and see my GP to see what on earth is going on. If I wasn’t down about all this before, I am now Mel x

Hello and welcome to the site :slight_smile:

I’m guessing that the neuro thinks you are having silent migraine most of the time, i.e. migraine without headache, and therefore that taking a migraine preventative should improve your symptoms. This really is worth trying in my opinion as I can’t see that you have anything to lose: if it works, then brilliant; if it doesn’t, a few months more won’t make a huge difference after seven years and you will have ruled migraine out and therefore narrowed down the possibilities.

And migraine really is a possibility: quite a lot of people don’t get headaches with migraine and migraine can cause all sorts of neurological symptoms. I don’t think it would cause worsening symptoms over the years though so if, e.g., your walking has got progressively worse over the seven years then I would have thought that it isn’t migraine and I’d want a second opinion, if I were you. (By progressively worse, I mean that walking has got more difficult rather than it’s difficult more of the time.)

What was on the sheet he gave you btw? I’ve had a massive improvement in my migraine from taking 400mg vitamin B2 once a day. My headache specialist neuro recommended it because I didn’t want to take more meds if I could avoid it; I was rather suspicious (“Seriously?! A vitamin to stop my migraine??”), but after reading the studies that have looked at its effect, I had a go and was very pleasantly surprised. I took 100mg a day in the first week, 200mg a day in the second week and by the time I was on 300mg a day I’d noticed a big difference. (Beware: it turns your urine bright yellow!)

There are loads of meds used as migraine preventatives including beta blockers, anti-epileptics and antipsychotics. Finding what works for an individual can involve a fair bit of trial and error, but it’s worth it if it works in the end.

Of course all of this is only relevant if it is actually migraine causing your problems. Fingers crossed that it is, and that you find a preventative very soon.

Karen x

Thank you Karen. He didn’t explain that at all. I am following his instructions, but am still at a loss as to how migraines can cause the numbness etc. the spinal clinic, physio and GP have all said nerve damage but don’t know where from. Mel

The info sheet he gave me says to cut out caffeine and painkillers. Drink plenty of clear fluids, 3 litres per day, avoid missing meals, avoid daytime sleep and/or morning lie ins. As a single mum with 2 kids I hardly get lie ins anyway. Migraine prevention drugs that I may be given are listed as anticonvulsants, SSRI’s, antipsychotics or antihypertensives. I was on propranolol last year and it actually gave me headaches! It was prescribed as an anti anxiety med. I’m not getting an aura, headache, visual disturbances, etc.

It must be very frustrating; he really should have explained his thinking better :frowning:

If your GP reckons it’s not migraine, then maybe go straight for a second opinion or he/she could send you for an MRI him/herself? Worth asking I would think.

Kx

I have numbness and even paralized with migraine, first was 16 years ago paralized arm for a few days told it was migraine and put on beta blockers for 3 months ok after that no migraine or problems. Jump forward 16 years migraine after mega stress arm paralized again, when still numb 2 weeks later I go off to Gp. After beta blockers, epilepsy Meds, nerve conduction studies, MRI, no more migraines top of arm still numb after 18 months! At the end of the day migraine can cause pazalises and numbness but its short lived. Think they say migraine give you some tablets and send you away, most people won’t return, but if its more than the migraine it won’t help and you will come back. I’d try the Meds and if that does not work I would ask to be reffered to a differant Nuerologist.

Thank you for your comments. My head has been in circles all day (from over thinking thou, not migraine!) I shall carry on without caffiene, but with all my other symptoms making me not have chocolate to treat myself is just plain mean! Mel