Headaches for 10 years

[ptomlinson]

I had this headaches institute diagnose me with Intracranial Hypertension and Chiari.  But then I had to start going to neurologist and specialist.  They ran test like MRI and MRA, eye test etc.  Since everything came back normal accept for my field of vision test the doctors would not preform a Lumbar puncture to confirm that I actually have IH and Chiari.  I have been suffering with these terrible headaches for 10 years and they won't go away.  I get told by the neuros that it is just exercise induced migraines.  Noone is doing anything.  I can't take these headaches any longer.  I have went through most of Maryland and Delaware trying to get help from a doctor and noone will listen to me.  How long does one have to suffer before someone finally listens to you.

[thyroidian]

Hi.
Headaches.......
Im going to ask you a few questions about them.. to give me a better idea of which type of headache you are experiencing.

When does the headache start,? or do you wake up with them.
What treatment do you take for the headaches?
Where is the pain in what part of the head or face?
How long do they last for hours, or days?
Do the headaches come on after food,? or after chores and exercise?
Do you ever see flashing lights, or have vision problems with the headaches?
Do you lose your balance, vertigo, or feel deaf with the headaches?
Do you ever vomit with the headaches?

Sorry to ask a lot off questions, but after being a headache sufferer for 12 years,  i know how rotten you must feel. I am trying to figure out what type off an headache you are actually suffering from.

I was diagnosed in 1998 with MS. due to suffering neurological problems, headaches being one of my most severe symptoms, they would just wipe me out, and put me in bed for days. affecting my vision, balance, memory, co-ordination, etc. right down to me suffering projectile vomit.. even my speech would go slurred, and weakness in my limbs.
In 2009, my neuro said he didnt think i had MS, and tried to fob me off , like many do, with being a medical mystery syndrome. In other words, he was trying to say i was a hypochondriac,,,,,,etc,,,

Thats when i started my journey, i developed pnuemonia, and was admitted to hospital, where i was tested for anticardiolipin antibodies, and the lupus anticoagulant..
and bingo i tested positive for the anticardiolipin antibodies.
The hospital kept sending me these blood cards through the post for a total off 9 months, and without any answers,
So i took matters into my own hands and searched anticardiolipin antibodies, where i came up with Hughes syndrome.
I had to pay private to go to the London Lupus Clinic, to take my test results from the last 9 months, where my terrible local NHS hospital, never told me what i had.
I met the man who found this illness in 1983, his name is Professor Graham Hughes.
and he was the bees knees. He is a specialist in Lupus- Hughes syndrome, hence Hughes syndrome being named after him.
One of the main symptoms are headaches, and to be tested for Hughes is two simple bloodtests which your own GP, could do, and you only have to test positive for one of them.

If it is Hughes with proper anticoagulation, your headaches will lessen dramatically.
I would suggest being tested for this as soon as you can, as you have to have two positives, at least 8 weeks apart for a diagnosis.

I hope this has helped you, if you would like anymore info just give me a nudge.
Maybe you could also try this simple test, the next time you have a headache, take 150mg of aspirin, and see what this does.

Good luck
Nicola.
I was diagnosed with MS in 1998, due to neurological problems, h
f

[MrsAristotle]

Hi and welcome sadly to our little forum.

Now how long must one have to suffer, well how long is a piece of string......

4 years for me. I mean if i treated my dog the same I would be arrested for cruelty......

Ok lets put our thinking caps on.

When did it start ..... when you were about 43?

Did anything happen........operations, stress, something personal anything......

What pain killers do you use?

Have you been tested for allergies.... wheat is one of the worse apparently......

Also there is a disease called Hughes Syndrome which can start in your early 20;s but return with a vengeance later on in life and will give you constant headaches.

Just a simple blood test would tell you either way on that one. Apparently it is one of the most under diagnosed diseases of this century, and many people are suffering and diagnosed even with things like MS and actually have this disease.

Now not saying it is HS but perhaps we need to start looking outside the box.

The trouble is when you are diagnosed by an institute without any proof you are kind of stuck with just looking at these diseases and nothing else.

You need to think why these headaches, what happened when they started. Do a diary of things you do. For example you said you have been diagnosed now with exercise induced migraines.....

So ok they have diagnosed you with this. So the best form of attack for me would be to either prove this is the case or disprove this is the case. So I went off and found you this information which could help you.

http://www.relieve-migraine-headache.com/exercise-induced-headache.html

Did you know also that menopause can trigger off terrible migraines.........

http://www.relieve-migraine-headache.com/menopause-headache.html

What I am trying to do is help you look outside the box to see other things that could be causing this. The good thing if there could be a good thing is you have had them for 10 years.....and you are still the same albeit in terrible pain...

I would think if it was Chiari you would have deteriorated in the 10 years.....

I hope i have given you a little help I would be interested in seeing if anything did happen 10 years ago that could be a clue, but I really think you need a blood test to check for hughes syndrome, and thyroid problems.

Hugs Mariaxxx

ok. Well I found this website which could help you control the headaches when exercising.