Headaches lasting 48 hours or more.

[janna8]

I was diagnosed four months ago after having a brain MRI. I've had really bad headaches for the past five years and doctors always said they were tension headaches. Then I had a seizure in my sleep in April (first and only seizure) so that's how I was diagnosed. Has anyone else ever had a seizure? And I'm wondering if anyone gets the headaches for several days. Meds don't help as most of you already know. I'm at a point where the last thing I want is surgery but since the seizure I've been getting tinitus and tingling and numbness in my arms and legs. I think its time for a visit to the neurosurgeon huh.

[*Stormy*]

First off, I am so glad that you said "no thank you" to the meds and didn't let them mask a problem that is quite serious!!

You definitely need to find a specialist that knows what he is doing...it's sooo important.

B4 surgery, when I was lying down and sleeping I would feel the pressure in my head get really high and I would wake up in the night with the feeling that my brain was shaking...but I never had any outward appearance of a seizure. I am wondering if you slept in a position that caused more blockage of the CSF flow and therefore the high pressure caused a seizure.

As for the headaches...I would have ones that lasted for weeks b4 surgery...I still do know but it's the difference b/w being bearable or not..

Good luck..keep pushing for answers!
Carolyn

[janna8]

I absolutely agree Jackie I had a similar situation when I wad diagnosed.
I was told by my regular doctor about the CM but I
Couldn't believe how nonchalant he ead about it. It
Really gave me the impression that it was no big deal.
So for five weeks before I saw the NL I was like " oh whatever
I have this thing but it's no big deal" Atleast he was a lot more serious
About it and wanted to refer me to a neurosurgeon right
Away. But I could tell he didn't have much knowledge of
CM. He wanted to try me on Topamax for anti convulsant
and migraine Cuz he said he still didn't think my headaches
Were from the CM but sounded like migraines. I am currently
on Baclofen (muscle relaxer) when I have bad days or need
Help sleeping but no Topamax for me thank you. I've
Learned how to say yes and no about these things.Jackie I'm so sorry your
Son is going through this at such a young age that is really tough.
But it sounds like he is lucky to have such a great mom to help him through this. Sometimes I miss my mom so much and wish she lived closer
So I could lean on her more. Moms are the best: )
I feel very grateful to have found this forum!

[jacmurphy]

When my son took his 1st seizure they told us that 1 in 4 people have one seizure and never have another one.  So they didn't run any tests then. It was only after he took his 2nd seizure that they ran the tests. They knew from January that he had the CM but they didn't tell us until May when we went for follow up and gave symptoms. Headaches, back pain, sensitive to light. Since then he's having a lot more symptoms but his NL still insists that they are not CM related and that it's all tension and stress.
I think in a lot of people it's just luck that they have the MRI. But even then the CM can be put down as an incidental finding.
I worry that he's not going to be taken seriously. If a NL doesn't believe that his pains are real how will anyone else?
So I do as much research as I can. I find out as much about CM as I can and I make sure he knows that I believe him.
I also try to spread awareness of CM. We really need to get word out there that this condition exists.

[selmaS]

Hi and welcome to the Chiari forum.

It seems Jackie and Ray answered ur question......I wanted to welcome u and let u know if there is ne thing we can help u with please feel free to ask : )

Here is a list of chiari drs...be advised u will have to research all drs on the list as we do not do background checks...this list is compiled from members of their drs.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

"selma"

[janna8]

Ya I did have an EEG and was cleared of epilepsy so it
Is strange that I had just the one seizure that doesn't really
Tie in w the CM. But I have been dealing w the headaches
since 2004 so I try to see it has the reasons why my CM
Was discovered in the first place. Without the seizure who
knows how long it would have taken doe people to take
me seriously. It makes me wonder how others have been
Able to get an MRI when drs just want to send u home with
Migraine meds. Argh! My neck is hurting from typing
On my phone keyboard.

[jacmurphy]

LMAO!
And there was me being nice and blaming it on the loudspeaker.. I didn't even mention that the girl on the loudspeaker has a Cork accent!!
But you are right.. I drive him crazy too!! What sort of mother would I be if i didn't!!

[rod44]

Are you sure it the loudspeaker Jackie and not the fact he is out shopping with his Mum that drives him crazy :) LMAO.....

I get that amplified hearing as well, some tones worse than others, I also get ringing in my ears (Tinnitus)

Ray

[jacmurphy]

Hi Janna.
My 14 year old son started taking seizures in January. He was diagnosed with Epilepsy and then in May they told us he also had Chiari. They say there is no link between the 2. (I have my doubts as all his symptoms started around the same time.
They increase his meds every time I say he's having symptoms.. but I'm not sure if his symptoms are Chiari or Epilepsy. So now i'm being very conservative about contacting them with symptoms that could be Chiari related.
His headaches can last up to 10 days and they have said that they are tension headaches. (I'm the one with tension headaches not my son!!!)
Since his 1st seizure my son's hearing has been amplified. Most of the time this doesn't bother him. But if we're out shopping and an annoucement is made over the loudspeaker he goes crazy!

[rod44]

lol that shows just how much this NL knows. Headache is the most common symptom of CM....

We have a list of Doctors here that people recommend but you must research the Doctors and find one that you are happy with....

You will find a link in the health pages, top right of this page.....

[janna8]

Yes I did hav an MRI of the cervical and thoracic and they were
OK. I live in California just wondering if anyone knows
Of a specialist here? And you are so eight about the headaches
The neurologist said that headaches weren't a very common
Side effect of CM he wanted to try me on a seizure/ migraine
Med and I was like no thank you I have enough problems
W/O th side  effects of drugs.

[rod44]

Hi and welcome to the Chiari Community :)

I find that all my symptoms cycle and can last for days or weeks, weather seems to influence this as well.
Most here have been told our HA are migraine or tension headaches, even after a DX of Chiari.
I am not aware of any link between seizure disorders and CM but we do have members who have experienced seizure like symptoms, many suffer "drop attacks" a fainting like episode where you drop to the ground but you are fully aware but have no control over movement etc.

Yes you need to see a NS, not just any NS but one who deals with CM as the major part of their practice.  
Surgery is not a cure, the goals of surgery are to improve quality of life by relieving symptoms.

Have you had other MRI scans such as a full spinal scan to rule out related conditions such as a Syrinx and a CINE MRI to determine if you have a CSF obstructions.

Ray