Newly Diagnosed in OC

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Newly Diagnosed in OC

Postby theotis5555 » Wed Mar 28, 2018 12:34 am

I have no clue what's going on! Ugh.

I'm a triathlete. My body and training create a pain, recovery, pain, recovery cycle. But certainly not in the head. In December, out of nowhere I had a debilitating headache, as in beyond a 10. I've had occipital neuralgia my adult life, but this was clearly inside my skull (not surface), like an ice cream headache. It subsided slowly after an hour or so to about a 5. My headache didn't go away a few days, maybe a 4.

Eventually, what started as 10, became a persistent 2. I have now had a headache since December. I started reading about Daily Persistent Headache. It was mostly isolated on my right temple, with some pressure in my neck and behind my eyes. Figured it's probably from over training. I stopped training. Then, thought, caffeine...cut that down. Sinuses.... etc. NOTHING.

Finally broke and went to my primary care. I lost a brother to a brain tumor. So, my doc ordered an MRI/MRA just to be sure. And was more concerned with an aneurysm given my training. I stopped everything.

I was diagnosed with a 5mm cavernoma with a DVA in my cerebellum next to the flocculus. No evidence of recent hemorrhage. My PCP is sending me to a neurologist for further evaluation. Meanwhile, from January to March, my headaches have are now worse in the morning and at night. Constant 2 and as bad as 6-7. Nothing helps. Aleve, Tylenol, Celebrex. I find I'm constantly pressing on my eyeballs and massaging my neck.

I read a lot about how doctors don't attribute headache to a cavernoma, but after three months, what else can it be? And what was that first headache? Just coincidence? If no evidence of hemorrhage, why worry?

I guess my hope is that I have some chronic sinus infection, that my CM is just one millions of asymptomatic ones that people live normally with.
Last edited by theotis5555 on Wed Mar 28, 2018 4:18 am, edited 1 time in total.
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Re: Newly Diagnosed in OC

Postby Michelle2000 » Wed Mar 28, 2018 2:45 am

theotis5555-

Welcome, but sorry you have the need for us. I'm not an expert, but even if a lesion hasn't had an overt bleed, the seeping of blood that leaves the hemosiderin ring that shows up on an MRI (that they use to diagnose CM) can cause problems. Hemosiderin is the leftover iron and blood product after blood is reabsorbed, and it can be very irritating. There could be something else causing your headaches, but CM does seem to cause them, too. Are you sleeping well?

Hopefully your neurologist will be able to help.

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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Re: Newly Diagnosed in OC

Postby theotis5555 » Wed Mar 28, 2018 4:14 am

Thanks Michelle.

I have a tougher time falling asleep, that's nothing new. But, lying down a night and in the morning are definitely tougher than most of my day. Afternoons and evenings their toll. I have noticed, the physical drain from fending off a constant headache, and much harder time concentrating.

Fingers crossed!! And, apparently my blood vessels are cross too :)
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Re: Newly Diagnosed in OC

Postby theotis5555 » Thu Apr 05, 2018 5:00 am

Update:

Met with the Neuro. What can I do for you?

Explained the four month knife in my head. Ran through the explorations that my PCP and I did.
1) Exertion? Cut back training...Check!
2) Caffeine? Cut almost completely....Check!
3) Med evaluation? Nothing changed....Check!
4) Hydration? Drinking adequate...check!
5) Stress? Slowed down...Check!
6) Sinuses/Allergies? A few meds, no change...Check!
7) Blood Pressure? looking good...Check!
8) Eyes? All good....check! Reduced screen time...check!

Litany of meds we tried for headaches: Aleve, Advil, Motrin, Tylenol, Celebrex, Vicodin (the only thing that worked, but can't do that every day!)

Asked if he'd received the scans from the lab. He said, "oh, let me check". Read the report, but didn't review scans. (The report was two lines.)

He suggested that headaches are unrelated. Can't explain why I have headaches. Couldn't explain why they're day and night, always on. 4 and half months and running. Said some people, mostly women can have a thunderclap headache that don't resolve for a year.

I guess he has no reason to review my scans since he had the report which said no signs of recent hemorrhage. Feel like a hypochondriac. Maybe it's all in my head...well not may not.
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Re: Newly Diagnosed in OC

Postby Michelle2000 » Thu Apr 05, 2018 10:20 pm

Ugh! I'm sorry you had such an unproductive appointment.

I'm not sure where you are, but it might be worth travelling to one of the Centers of Excellence where they see plenty of CM patients and are more likely to be able to help you.
http://www.angiomaalliance.org/pages.aspx?content=482

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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