Living in your own kinda hell

Being made to feel crazy by doctors. Being told they know what’s wrong but it’s small so it’s not really a concern. Having such horrid headaches you see stars… anyone else ever feel this bad and if so what did you do to cope. My pills (topamax) is no longer working

Teah I understand totally. My story in short. I had an AVM which bleed on April 25th 2013. Gamma Knife August 31st 2013. Since then my headaches are worse and so is my balance.
I have spoken with my doctors many times I know they mean well. But how can they know how our heads really feels inside. It’s hard to explain at least for me. I am so ready to wake up in the morning and not feel this way. I was on Topimax I did not like it at all.
I am now on Gabapentin 300mg I take 2 bills three times a day.
It has helped and they are not addictive.
I try to focus on how happy I am to be here with my husband and kids. Pace your self so you don’t get too tired. Set goals that you can work towards. I use to run so I have started walking and running short bits with my husband so my brain can learn what to do. Plus I have to deal with some abalance issues but more then that the way my head feels when I run.
Write down what bothers you in a journal and try to work thru that a little at a time. I also feel this site has been great for me. You can see you are not alone.
Prayers and hugs that things get better:)

Hi Niyani, I think you gave great specific advice to Teah and showed your understanding of her situation. All my best wishes to you and I hope your family is well.

Thank you Susan I am getting there. Trying to get ready to drop off my youngest at University soon. I was never much of a crier but since my AVM bleed I’m not sure why but I cry much easier. I am going to try to keep it together that day. My daughter has been so wonderful thru all this. My husband have been great as well but I feel she is the one who really got hit when this happened. We were living in London,UK and she was getting ready for AP exams and finals her Junior year. We moved back to the states her Senior year to be near family so we had help. She has been wonderful especially since she is only 17 that is a lot to ask 17 year old to handle.
Lost her freedom since she did not drive and was dependent on others. Well sorry to ramble on. Needless to say I will miss my “little” sunshine!
I hope you are well Susan.

Hi again, Niyani, and it's great to read a little life update on you. I have read of others on this site who cry easily after their burst so you have lots of company. Actually, I was just the opposite and as I react emotionally to things, I know I am getting better ... lol. Awww regarding missing your sunshine for I am the mother of a 25 year old son and a 22 year old daughter. Our daughter is currently a day's travel away and just completed a summer internship at AT&T. She is now exploring and traveling further west and I expect her to return here next week for a few days until she returns to complete her dual degree in college. I can relate to your feelings for your own daughter but I am thrilled to have my children happy and living their lives. Take good care of you.


Hi Teah and I like your name. I apologize for continuing with the thread to Niyani and she can relate to your distressing discussion posting. I hope you receive some helpful replies.

Teah, do you have a pain management specialist? The neurolists and NSes don’t always do all that well with pain management. If you can get a doc who specializes in pain management, you might be able to get a different medicine that is more helpful to you. Also, click on “Groups” at the top of the page to find our Coping with Headaches group, for other suggestions.

I haven’t. I live in a town where there is no pain management. …

Oh no its completely fine… :slight_smile:

Go see another doctor. I used to think they were always right, no matter how much it sounded like bull to me. Never be afraid to push and to know everything there is to know.


Teah I live in a small town and the doctors here know I had a dural fistula in 2009 and ordered the MRA, which of course was not the test I wanted. I wanted an angiogram. But when it was read "normal" as many are, he told me to go back to Tampa. He wouldn't accept me as a patient anymore. He was the only doctor left in my ins that I could go to. The first group told me the same thing. I know I was feeling crazy too. and my Topamax doesn't work anymore either. If you haven't gone to a bigger clinic like a Mayo-I don't know where you live. But I did check out the recommended doctors on this site. If I can't stand to wait until late next month, I guess I will see I can get into see the doc at Shands in Gainesville.
What I am trying to say, it don't give up. You aren't crazy, they are. They are only practicing medicine. I try to remember that when they disappoint me as my neurosurgeon in Tampa did by not telling me the whole truth.


I’m so grateful for everything I’ve learned in the last week. I go see a doctor at the University of Utah. This week. So hopefully I will at least be able to get a grasp. But my faith in the doctor s in my community is scary. I found a massive growth coming from my daughter s tongue from like the throat area but the er doc said he doesn’t see anything. So I’m hoping this new doctor will be able to give me insight. I’m very grateful for everything I’ve learned so far.

Teah: Can you travel to a city? or can someone take you? Are Salt Lake hospitals ok? If you cannot find the right neuro person, you must become your own advocate, and get what you need.


Teah, your daughter needs to be checked out by someone who knows about AVMs outside the brain. If she has a tongue AVM, she will need treatment. If you both have AVMs, you need to have genetic testing for HHT or other conditions that can predispose families to have vascular anomalies.