Hello to all

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Hello to all

Post  amanda42 on Sun May 13, 2012 2:46 pm

Hello to you all, my name's Amanda & live in the UK

Although I have other long-term medical problems and my head killing me like mad daily regardless due to the condition and surgery I had done. They are normally bearable to cope with (although I'd rather I didn't experience them) and have pain killers for them on prescription. I've had Brain Surgery, and it's from there I have experienced them 'on a daily basis'. Although I was never pain-free before surgery, my quality of life has been improved in the long-term.

I am finding my head killing me like mad (due to an increase in my medication) worse than ever, and so sleepy, head killing me like mad constantly and nothing helps clear it. I've been sleeping most of the weekend and felt awful because of it. But my Neurologist at Kings College Hospital will NOT reduce it back down to the level I was previously on. Evil or Very Mad As take 3 different medications for my condition and my head is chock-a-block full and can't cope with all 3 doses, since he increased the 3rd one I'm on. I am taking a risk, and not something I'd normally do, but \i'm ommiting the extra morning dose out tomorrow as want my head to be free. Not something I would normally do, but my medical condition is quite controlled since surgery in 1991 & 1992, and starting on the 3rd medication in 2004. Just I've found things unbearable for most of this week, and been on the increased dose since December.

I do generally eat healthly, as was going to Rosemary Conley classes until recently. But I've had to give it up for now, unfortunately, because I haven't got the energy for the Aerobics, and my head can't cope with the music because of my head killing me like mad. I've been going to it for nearly 3 years this year. I do keep fit and walk everywhere also, as love walking.

Just need to vent my frustration, and want to find out (even those these effects are side-effect induced) do you find any particular foods not good for Migraines?

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amanda42

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Re: Hello to all

Post  Beldame on Sun May 13, 2012 4:15 pm

Hello Amanda42--Re your last question: I think most 'migraineurs' have some food-triggers, though it can be very individual. What also seems to be true about migraine is that the triggers aren't always automatic.

For example, it's usually a bad thing for me to have smoked food of any kind, but every once in a while I can get away with it. Of course, I rarely take the risk, but from time to time I have.

For me major triggers include cheese (which I have almost entirely banished from my diet) and peanuts or peanut derived food and MSG (a food additive, unfortunately available under many names, so I can't always tell when it's in something).

About the earlier part of your post...I'm a little surprised your Doctor does not seem willing to work with you in adjusting dosages of medications that are having problematic side effects. I would definitely fight that or, if possible/practical find a Doctor more willing to work with you.

I hope you are able to find the right dosage that works for your pain and other problems w/o making you too "cloudy" or sleepy...


Last edited by Beldame on Sun May 13, 2012 4:16 pm; edited 1 time in total (Reason for editing : correct capitalization at beginning of sentence)

Beldame

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Re: Hello to all

Post  Mini on Sun May 13, 2012 4:19 pm

Hi Amanda, I am also from UK. I am so sorry that you are suffering so much. You are obviously in much pain and sound unhappy about your treatement and medicines prescribed.

You mention surgery, but you did not say what was the reason for your repeated brain surgery, nor do you say what is the medicine that makes your pain worse. Is it a rebound effect? What are the main side effects?
I am not sure if any of us can help you, but I can assure you that we do understand about pain and how badly it affects all aspects of our lives so you ceratinly can keep venting and come as often as you wish, there is always someone who will listen.
I hope your head is better tomorrow.
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Re: Hello to all

Post  amanda42 on Mon May 14, 2012 2:26 pm

Mini wrote:Hi Amanda, I am also from UK. I am so sorry that you are suffering so much. You are obviously in much pain and sound unhappy about your treatement and medicines prescribed.

You mention surgery, but you did not say what was the reason for your repeated brain surgery, nor do you say what is the medicine that makes your pain worse. Is it a rebound effect? What are the main side effects?
I am not sure if any of us can help you, but I can assure you that we do understand about pain and how badly it affects all aspects of our lives so you ceratinly can keep venting and come as often as you wish, there is always someone who will listen.
I hope your head is better tomorrow.
I take 1200mg Tegretol Prolongued Release, 550mg Lamictal & now 375mg Keppra. I was on 250mg Keppra, but could handle that (but didn't keep the condition under total control, but has improved things since started on it in 2004). I'm just struggling on the 375mg Keppra, but going to see my GP tomorrow as doing my head in, it really is.

The first two operations in 1991 were exploratory surgery inserting electrodes in the head to do what they needed to do, and the 2nd one weeks later was to remove the eletrodes and re-insert the part of the skull that had had to remain in some solution to preserve it (as keyhole surgery didn't exist then). Then in 1992 I had part of my Left Temporal-lobe removed to improve the medical condition. But just endured headaches daily since surgery although the medical condition has been improved from surgery in the long term, and given me a better quality of life. Just not 100%. But life seems to be Trial & Error with continual changes of doses of medications not knowin how it will affect individuals, etc, and just become so wearing on the brain, grrr. I'm 46 now, and developed the cindition at the age of 18 months old due to Bacterial Menigitus. so wasn't born with it, but had it most of my life. Sometimes I wish I could just chop my head off to rid of the pain. It's not rebound pain, but side-effect pain.
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Re: Hello to all

Post  Mini on Wed May 16, 2012 3:11 am

I am so sorry that you had to suffer for such a long time. Meningitis is a horrible disease, still as serious today as it ever was, so I am sure you parents were thrilled to have you survived as a baby.

Still, you are left with so much to cope with and daily pain is a high price to pay. Which one of your medicines is causing the headache? Or is it all of them? But it sounds as if you have to take them, and this must be tough for you, if you have no choice. Life sometimes, gives us choices which are just too difficult.
But you can be certain, that most of us here can relate to what you say:
Sometimes I wish I could just chop my head off to rid of the pain

My migraine is now more under control these days, but in the past for many years, my head was really bad, and I still remember this feeling very well.
Keep posting and venting, and I hope that you are having a better day today.
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Re: Hello to all

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