does anyone have transformed migraine?

[kimsuzw]

I was diagnosed in 2010 and the neurologist put me on Toprimate a anti-epileptic drug which seems to be working I still get the occasional left sided headache, would love to know how you cope with your transformed migraine, he also diagnosed me with a weakness to the right side of my senses, i.e touch and feeling.

[Hidden]

I don't know what transformed migraine is but I'm familiar with Topirimate. It didn't suit me at all. I lost a huge amount of weight, I lost much of my sense of taste and also became very depressed. On top of all that, it didn't work! You're lucky if it's effective for you!

[kimsuzw in reply to Hidden]

Sorry to hear that the Toprimate didn't work for you. I have been luck in that respect but cannot handle more than 10mg at night otherwise I am no use at all completely spaced out, I am also on an awful lot of other medication for chronic low back and pelvic pain so a cocktail of drugs which all seem to interact with each other and have their own side affects which I cope with as best I can. Wish you well and thanks for your response.

[Hidden]

Hi there

I think the neurologist has used this term to describe episodic migraines which have gone into chronic migraines. It describes the migraine 'frequency', not the migraine type.

Going from episodic to chronic migraines seems to be quite common amongst migraineurs. It has happened to me in cycles over very many years, and more recently I have been in a constant chronic phase for the past 7 months. Migraines are termed chronic when you have 15 or more in a month.

I hope the new medication works well for you.

Best wishes

[Hidden]

Whooops....forgot to say how I cope with chronic migraines. Not well at times,and I am currently unable to work. However there are things that I have tried and are worth trying to see if they help you:

1.Migraine diet - try cutting out caffeine, msg etc and see if you have food triggers. I have read only 20% of migraineurs have food triggers, but it is worth trying out as the diets do seem to work for some.

2. Hot/cold pads on neck, head or wherever you get pain

3.Trying to go to bed and get up at the same time each day, and making sure you get enough sleep. Try not to get over tired.

4.TENS - I started using a TENS machine 2 weeks ago and have noticed a considerable drop in my pain levels.

5. Make sure you eat and drink regularly, if possible with small snacks in between to stop your blood sugar levels dropping. Sometimes food helps me feel better.

6. Exercise/walk when you feel well enough.

7. Keep stress levels down - easier said than done, but avoid the stresses that you able to.

8. Rest when you are unwell - there's no point fighting it, it just makes you worse.

I hope that helps!

[kimsuzw in reply to Hidden]

I am on a dairy free diet and also no eggs too, this was because of my migraines many years ago and also suffering with sinusitis, I have been on this for nearly 20 years now. I also know that stress brings on my migraines so I do try avoid it if I can. I also have a TENS machine for my chronic low back pain and pelvic pain. I hope that your condition improves wish you well.

[lisa_s in reply to kimsuzw]

I have read many stories about people who cut their dairy and eggs. Thinking about doing the same (adjusting diet in general). What did you substitute them with? Thanks (probably won't be seen but still asking) peerdiagnosis.com/how-long-...

[VictoriaS]

Is this what you mean by Transformed Migraine

migraine.com/blog/living-wi...

Or some refer to it for Chronic Daily Headache as well.

I'm currently on Topamax as well but the Doc at the National Migraine Centre rather cleverly put me on a sprinkle cap that I can pull apart and start on a paediatric dose and increase as slowly as possible, at my own pace. I think a lot of people start at far too high a dose and suffer horrific side effects, but the advice for Topamax is go as slowly as possible, and hopefully your body can cope! But obviously everyone is different and it is a serious drug, and I'm still not up to the dose I should be & having quite a lot of side effects. There are a lot of other anti-convulsants to try so if that one doesn't suit you, did your neurologists suggest others in that family to try? I haven't lost any weight yet! Quite the reverse!

[kimsuzw in reply to VictoriaS]

I am actually on Topriamate, 10 mg at night, was originally prescribed morning too but it made me too drowsy and I couldn't do anything. But now it seems under control although I still seem to get that left sided headache at least twice a month sometimes more, but not as bad as it was. I hope you continue to do well on your medication and wish you well thank you for your response.