Migraine / Headaches Consultants

[willows]

I've just come back from my own local doctor who has told me that my Neurologist is sending me to a migraine specialist , but my doctor and I both know I dont have migraines!!!!

No one in the family has them and I've never been told by anyone I have them .

What I get according to my local doctor has never had presented to her before and she is somewhat mystified ( as I am )

Right , do any of you guys get this happening to you ?

I've had to of had a bad day before hand, like heart palpitations, excessive sweats and chronic tiredness beyond belief, coupled with really bad out of control pain ( legs+hips + arms) what you might call a 'the pits day' ...........go to bed that night and in the morning I wake up with a horrendous headache............front and in eyes only its so painful.

NO distorted visions.

No tunneling.

No lights flashing ...............just a pounding headache.

THEN...............I stand up..........1,2,3,4 seconds ............headache gone, nothing, not a pain in whole of my head and I feel OK.

THEN...........take a step and I want to be sick , violently sick, over and over again ............so, exhausted I lay down.1,2,3,4, seconds headache back pounding in my eyes and forehead!

Up and headaches gone , move and vomit, vomit ,vomit !!!!!!

I look like death , white as a sheet with no lips showing at all and I'm very unsteady on my feet when I walk.

So does anyone out there get this happen to them ?

My doctor has said it doesn't fit into the migraine scenario because migraines dont just disappear after 4-5 seconds of standing up then reappear again when laying flat

Unless you know otherwise ?????

Willows.

[bttrflyamby1981]

That doesn't sound good.....I hope it doesn't happen again.

I have migraines, and it has never been like that for me. What is going on with you sounds like a warning if you ask me....It just doesn't sound like anything I have heard of. Wish I could be of more help, but I wish you the best.

Take care,

Amber

[Lulu]

i hope you feel better!! i'm now even more thankful i don't get migraines (knock on wood)

you poor thing! that sounds awful!! i hope you are able to get some relief! (hugs)

peace, lulu

[willows]

Thank you for you replies Amby and Lulu...........

I get these very regular and they can last for up to two days, afterwards , when the head has cleared and the vomitting stopped , I'm left just completely washed out and have to rest for another day to get over the 'episode'

I've been having them for about 2 years now.

I was speaking to my doctor about putting this post on today in a hope that someone on here has my symptoms..............my doctor reads this site to , it helps her get a better insight into pots as in the UK most GP's hit their 'head against a brick wall' ( UK saying for cant find anything out ) trying to find or get help for people like myself .

I'm really hoping that someone will come forward and say 'Oh !, I get this to and my doctor has said...............'

Willows.

[bttrflyamby1981]

Hi willow,

I was just wondering if you have had a cat scan or a MRI? I have had both so I know all is well even though I get migraines ALL the time.

Good luck,

Amber

[Guest dionna]

sometimes i vomit with my migraines but the punding never goes away. i have to take something, make myself go to sleep, or get a shot at the doctor's office. and actually when i stand or move my head at all! it is even worse. you said that the pain was in the front and in the eyes. mine are too most of the time. was either eye swollen or droopy or where you couldn't even open it? mine does those sometimes, but just the right one. just wondering. i hope that never happens to you agian. i especially dislike the vomiting for you. if i never vomit again i'd be really happy! take care of yourself and i hope that thye find something for you to maybe prevent that or whatever they can do. oh yeah- phenogren- that is an anti-nausea medication and it knocks out my migraines. perhaps that could help you. i don't know if i spelled that right or not but its what it sounds like to me.

dionna

[willows]

I haven't had a scan or MRI for about 6-7 years now so I'm hoping that this new consultant will have the sense to get one done on me for safety sake as much as 'whats going on in there'

And as for not getting them again...........I know that having another really bad day will bring it on again, just the same pattern...lay down headache ...get up , vomit.

No, I dont get a swollen eye at all or anything like this .

Thanks for your replies they all help.

Willows.

[persephone]

It could be migraine. Did you know there are loads of different types? Some don't even hurt your head? I saw a Neurologist who said the sparkles I see in my vision all the time could be continuous migraine. And of course, there is hemiplegic migraine, where your body control over one side is affected- I've had them too, and sometimes they don't even hurt me- I don't even know I'm having one til my coordination goes way off. Keep an open mind, see what they say.

Remember that migraine can be linked to autonomic stuff because it's related to the constriction of blood vessels in the head. So if anyone is susceptible to them, it would be people with POTS etc.

Good luck, let us know how you get on!

[willows]

Thanks persephone............I just remembered something when I read your post !

A few weeks ago the whole of my left side 'went' I had pain in my face , neck, shoulder, arm, hip, leg, ankle & foot ..... it felt heavy as well and wouldn't move properly when my brain ( ha ! ) asked it to ....if you know what I mean ? how lovely it wasn't at the time.

My GP was so concerned that I am now taking a dissolvable aspirin every day as she is concerned I may be having warning signs for a heart attack or stroke .

I've had heart failure before and get angina so something is not quite right there.

I always try to keep an open mind with all things, crumbs you have to as half of the doctors I go to in the UK haven't a clue as what this condition is and ask me about it , so some chance I've got of ever getting the right medication.

My meds are right off at this time and I'm swelling up with fluid retention ( now on more furosemide) and I'm sweating even more ( double my HRT again) and my bowels ...................dont even go there in fact no body would ever want to go there

Oh well onwards and upwards and waiting again for the 'specialists ' to sort me ......Ha, Ha thats a good one .

Willows.

[marnian]

Some people have similar headaches from idiopathic intracranial hypertension, but it's a very rare condition and not the classic headache from it either. A first step on this would be looking into your eyes for evidence of papilledema (with a bright light at the doctors or eye doctors). It's not worth worrying about, I'd just make sure a doctor does an eye exam.

[willows]

Thanks for your reply marnian.............how strange.

You see I have been under the eye hospital for many years now and have a problems with my eyes to , they think its the start of Glaucoma but just cant be sure , apparently there is some malformation of something in the back of my eye, sorry cant remember the technical name of it.

I will bring this up to when I go to see this migraine expert.

Many thanks to all of you who so far have replies at least this gives me something to ask or talk about when I go to see them.

Willows.