newbie with a question

Hello everyone, , I'm 42 year old mum of 4 & just wanted to stop by and introduce myself, I never really had a headache in my life until 31/2 years ago, when I got one that put me in bed for near enough 3 months. My Dr couldn't work out what was going on with me, I had and continue to have an unending pain in the back of my head, across the forehead too, which comes with a stiff neck, body aches (like the flu) total and utter exhaustion, to the point whereby I sleep 22 hours a day; on a bad day I'm totally unable to focus, can't string a sentance together. The Dr put me on Amitriptyline, and that has for the last 3 years meant that I have been able to at least cope on a daily basis. I was referred to a neurologist who said that he believes I may have had viral meningitus which has left me suffering from residual migraines.

The Amitriptyline stopped controlling the symptoms, and several months ago & I've returned to total and utter exhaustion, head pain, neck pain, joint pain, unable to focus concentrate or string a sentance, felt and looked awful, my Dr has now added Propanolol to my medication, which has left me more able to focus, more movement in my neck but I still have an almost constant dull throb in my head. The Doc did blood tests looking for Autoimmune, which came back normal, other blood work done has all be normal too, I was convinced that fibromylagia (sp?) would show something lol!

There is a family history of migraines but I seem to be the only one who is totally debilitated by them 24/7, therefore am wondering if this is really migraines or if I need to be asking to return to see the neuro.

Does the way I'm affected sound familiar to anyone here?

Many thanks

id go back to the neuro, a classic mig only lasts between 4-72 hrs, keep going with the tests, also mig pain is one sided. which country are you in?

Did you get tested for Lyme disease? If so, what test did they use? Most are unreliable, Western Blot is best. My symptoms were a lot like yours. I had 3 negative tests, then the 4th was positive.Depends on how long it has been since the bite. It was over a decade for me! Years of antibiotics later, I am much better. Daily headaches are gone. Mostly hormonal now.
Hope you get some answers soon,
Cindy

Thanks for your replies, I'm in the Uk, I've never been tested for Lymes, but will have a look and see what I can find on it, will ask to go back to the neuro.

Thanks again

whereabouts are you to visit your neuro?? some good ones nr london.

Dawn I'm in Hertfordshire, about 30 miles outside of London so if you could recommend that would be good. Kids go back to school on Monday so am hoping to get to see my GP next week to ask for a re-referral

the one who you could get to from herts, i see in colshester essex and you can see him privately there or on nhs or on nhs in the barts london or harley st! if you want me to eamil addresses to you to contact, my emal is peter.binks@virgin.net and if you mail me il send all the info.

mail sent, thank you ~ I'm not far from the Herts/Essex borders, will let you know how I get on

littleman wrote:Dawn I'm in Hertfordshire, about 30 miles outside of London so if you could recommend that would be good. Kids go back to school on Monday so am hoping to get to see my GP next week to ask for a re-referral

Hey, there, and welcome. If you are in Hertfordshire about 30 miles outside London, you can be too far from me in Bedfordshire 30 miles but north of London.....

I have a page on FB if you are on there and feel like stopping by. More Brits on there than on this forum, so you might get more pertinent info. Having said that, this is a great forum...

Pen

Pen,

I'm not that far from you being the top end of Herts! Could you please let me have a link to the fb page?

Many thanks

littleman wrote:Pen,
I'm not that far from you being the top end of Herts! Could you please let me have a link to the fb page?
Many thanks

Here you go, see what you think, but stick around here as well, please.

https://www.facebook.com/#!/group.php?gid=34139546290&ref=ts

littleman, your eail hasnt arrived yet, can you just check the address you sent or message me on face book, same name, theres only 2 dawn binks so am easy to find.

Pen, I have joined the fb group going to go and have a proper look in a mo,

Dawn, Have resent the email to you, will have a look and see if I can find you on fb too

That's great. Will you be revealing yourself to me.....I have no way of knowing who joins at any time...
Hope you find something useful. Check the Discussions tab....

Pen

I too had no problems with headaches until I was 46. Since then it was almost everyday. Severe neck pain, headache by 3 pm and pretty much in bed the rest of the day was the pattern. It finally changed to typical migraine symptoms (mostly sound sensivity). In the year I spent chasing solutions to that it got much worse. Not 24/7 like you describe, but several months in bed with severe nausea. I now think much of that was a reaction to the medication, so look carefully into that.

Surprisingly the thing that finally worked for me when nothing else did was
100 mg natural progesterone /day
400 mg magnesium /day
12.5 mg iodine/day
5000 mg vitamin D /day
4 omega-3 /day

The key in this is supposed to be the natural progesterone. According to Dr Andrew Jones of Texas Womens Clinic women are susceptible to migraines due to lowering levels of progesterone either due to getting messed up by birth control pills or hormone replacement pills (which are not natural progesterone), or due to lowered levels for other reasons. This is why many women get relief from migraines when pregnant. Their progesterone levels are like 10x higher.

Anyway you may want to give it a try.