A start anyway an introduction of sorts

Well It all started for me as far back as I can remember. I have been having debilitating headaches since I was a young kind to the point that no medicine would help, I needed a quiet dark place and extra sleep. As I never knew any different I never thought anything of it and just lived with it.

At 15, my father, who was the healthiest person you would ever meet, dropped right in front of me from a leaking anyerism. He was rushed to the hospital where he admitted that he had been having bad headaches for a while, and scheduled for emergency crainiotomy the next day. He died four hours following the surgery.

After the initial shock wore off I began doing all the research I could on anyerisms. I did not understand how my Dad, who to me was invincible, could fall so quickly. Thats when I started getting worried over the headaches that got severe. I started going to the ER when they were really bad. All the ER ever did was give me a quick CAT Scan and say I was fine and send me home. Sometimes they would give me pain killers that didn’t work, but they would always send me home.

When my son was young, probably about four years ago, I FINALLY found a good doctor willing to help find the cause of my headaches because of my Dad’s history. She sent me for an MRI at the local hospital. Of course, the local hospital is crap, its KNOWN for being a bad hospital and I hate it lol, but it was my only choice so I went. They diagnosed me with a STROKE! Immediately I went and called a Neurologist in the next largest city and got an appointment. She sent me for an MRI with CONTRAST this time (the first time they didnt bother with that part) and some other tests and quickly said I hadnt had a stroke, in fact I’d had a venous angioma, not harmful to 90% of people with them, nothing to worry about, and they shouldnt be causing me headaches, she said my headaches were just migraines, gave me meds, and sent me away. The headaches eased but never ceased, but I dealt with them, up until early last year when I started complaining that i could ‘feel pain where the angioma was’. Of course no one believed me, because we were told that you could not feel it. So my fight to be heard started again…

Then the headaches got worse, and I started having partial focal seizures. My doc sent me to a different neurologist as mine had left the area, and he wanted me to get an MRI (just to check on the size of the angioma and make sure it hadnt grown or wasnt pressing on a nerve or anything) and an EEG. Well my GP got the results from the local hospital originally and the report said no change in size of angioma and EEG was fine. As I said though, I don’t trust this hospital so I went and got my MRI films and brought them to my next Neuro appointment. He left the room to look at them and within minutes he came back to tell me ‘its not an angioma its an AVM and I need to send you to a Neurosurgeon right away’ I felt instantly sick to my stomach, yet at the same time relieved that they had finally found the cause of all this. That was last month and because of my insurance I am STILL waiting to hear from a Neurosurgeon to get my appointment, but have had plenty of time to gather all the info I can on AVMs. I realize treatment options are out there, and depending on what my Neurosurgeon reccomends I might change my mind, but I really think because of Dad I will go with the crainiotomy. Its the only way I can be sure its gone for good, and if I don’t do that, I will always always live in fear and freak out every time I get a headache.

I am so glad I found this group. I have no support at home, my family doesn’t know how to process this, so they avoid it or down play it, and I am disabled so I don’t go out much and didnt grow up around here so I have no real ‘friends’ to speak of. Plus I have two young kids, so I have to always put on what I call the ‘happy mask’, I dont want them to know how frightened I am by all of this…

Anyway, thanks for having me here, and thanks for reading my ramblings!
~ Jo

Well, Jo, you’ve got friends now! And we totally understand how you feel. I try to downplay my pain as much as possible to keep my family from worrying too much as well. Because the painkillers are so strong, I don’t drive much anymore, so I’m on here a lot. So if you need to talk, just check here! :slight_smile:

Thanks Connie, so glad I found a place where people understand!

Hi Jo
This is exactly the place to come and ramble we all need to let off as like you we don’t want to worry family and friends. My son Paul is seven and i also have the ‘Happy Mask’ as i don’t want any difference to his life than nes. So when you feel like letting off steam feel free :slight_smile:

Hi Jo
I used to get increddibly bad headaches. I thought they were sinus, until the sinus pills didn’t work anymore and I couldn’t open my eyes. I’d stand under a hot shower in the middle of night for ages (it was the only thing to reduce the pain) although all situations are different, I’m lucky to get 1 or 2 headaches a year now. Keep searching for the right doctor.

Hi Jo, So happy you found this site before you decide the treatment that will be best for you! I just read you bio and want to say welcome…I too love this site and the friends who have walked the path before me! They have all be so wonderful and I am truly thankful to all of their input. You can ask anything , and everyone is so willing to share. I wish you well and if I can answer any Questions for you please let me know. I’m here!
Sending Angel Light and Love your way…d

Hi Jo
I feel bad for you and what you are going thru. Headaches of this kind are very debilitating and put a damper on your day. I get bad headaches quite regularly and they will start one day, go the next day and nite and then the next morning they start to go away. Part of three days is how I describe it. Ha
I dread them. I used to find that if it was a low pressure system, cloudy, they would come on. Also if I allow myself to go too long between eating or if I lift or carry something. That all sounds like typical migraine triggers. But these headaches almost always occur on the side of my head and behind the eye where I had an hemangioma. It has been 39 years since my craniotomy and other than the headaches, I have led a normal life. Aside from the fact that I now have CML. Since my sister had an AVM/stroke and is now disabled, I acquainted myself with this site. As a result, my sisters and myself are all being CT scanned with dye. Because 3 of us 5 girs have already had this malformation. We however, are all 58 to 70 years, so this sort of thing is not unusual. However, you are so young and also you are continueing to have problems. I hope you will get promt treatment and then have peace of mind and relief of pain. Persons of your age shouldnt have to deal with these situations.

This is my first comment

Welcome Jo, I’m sure you’re scared and relieved at the same time. These people on this site are wonderful!! They could probably give you the best advice of anyone you know and can understand most of what you are going through. This is the place for all your rantings and ramblings. I hope you found the right dr, now and will start on a better path. If there is anything you need to talk about, I’ll try to help- or just be a friend. Good luck Jo! marijo

Thanks for welcoming me, Jo. I too am glad I found this site because for a long time there hasn’t been such a thing. It’s so nice to be able to talk to others that are going through the same things. I will keep you in my prayers.