I have had headaches all my life. I can’t really remember a day that past without one. I guess that I really just learned how to live around it/or with it. However the hemorrhage headache was very different than what I was used to. My head was pounding allover and felt like someone was beating me on top of the head with an iron skillet. On a scale of 1-10, it was 12+. After gamma treatment the doctor told me your headaches should start to go away. (I need two treatments because my avm is so large, so how is treating half the problem going to make my headaches stop.) So I asked the nurse about the headaches and she told me the hemorrhage site will heal and the headaches will stop. I told her that I have always had chronic headaches that weren’t the same pain as the hemorrhage headache. She really didn’t have an answer for me. I think they have this part of my condition confused. Now that I know what it is I would like some relief from chronic pain but I don’t know who I should consult. The nurse I talked to worked for my surgeon. Who to call???
Erin, who is the neurologist you are seeing at home? He/She would be the one to consult with.
I agree with Connie. The neurosurgeon was invaluable with treating the AVM, but now that I have a neurologist, I find him to be much more concerned with side effects, long term treatment, healing, and more patient with explanations about pain, nerves, alleviation of symptoms.
The neurologist sent me a letter and will continue to treat me!!! YEAH!!!
Good news, Erin!
My best advice would be to consult a headache neurologist, mine was fantastic and could help you recognize a headache coming on 24 hours ahead of time even and stop them, Compazine is the greatest little pill ever invented. I had migraines 10 years before my ruptures and I still have them today. I was like you and the headaches were different before and after but your brain is different now. You will probably find that most of them will center right were your AVM was, anyway that is how mine are now. For the headaches stopping, mine did not, they are a lot less frequent now but it was a very long time coming. Finding a combination of meds that will work for you will probably be the best solution, it takes time to find the combo, mine was a daily dose of Prozac & Compazine at the first clue of a migraine (like being a motor mouth or snapping (like PMS at the wrong time of the month), the headache neurologist taught me the signs, even the ones you say NO WAY, COULDN’T BE A SIGN, and the triggers, certain foods, smell, light and a host of other things can trigger your headaches. I taught my friends and family to notice the signs in me and tell me, whether I wanted to hear it or not that I needed a chill pill (that is what I called the Compazine) and I prevented or lessened the effects of many migraines this way. I only have one about every other month now. I have even gone 6 months w/o one. I do not take anything now though except when I get them unless they start clustering again. I hope this helps some, everyone is different.
Hi what happens when you have not had surgary but have headacks all the time no neurolagist just go to hospitall every few months for them to ask how is things going and how are you doing is it worse or is it still the same …same old question’s no answers 10 mls of sibelium 500mls of epilim still sore heads keep taking paracitimal every time i need them like sweet so ya i know how you feel …john-r
All the meds listed here are good. I have two other simple suggestions that you probably already thought about. First, get your eyes checked. I had continued headaches, had my eyeglass prescription changed and cut my headaches in half (yours may be different, but its worth a shot). Secondly, your diet. I went to see a naturopath and his point of view on what I eat also helped. It reduced the number of mid-day headaches by increasing my protein and reducing sugar.
I still get headaches several times a week, but they aren’t as sharp as in the past.
Erin, Tryston was the same way but at 4 he couldn’t tell us and it took him to have atoxia and vomiting for us to know anything was wrong. Now that he is 11 his neurologist has had him on proponanol and that helped his migrains he has also been on neurotin and they both have helped keep his headaches/migraines away so that way if he does have a migrain we know to be worried.
I found out Gluten allergy caused many of my health problem, encluding Mirgrains, have you every checked food allergies with a specialized that will explain the elimiation diet and monitor your safety. Be safe because I did it on my own and it can be every dangerous. WE don’t really know what allergies we have; till we don’t eat them for a long length of time. Then when we put them back in our diet we can find out just how great this poison is for us. The body heals and is so aware after not eating some thing for a while, that it puts out an immune attact; mine was life threating. I can nerver eat Gluten again. All I had was a vitiamin by mistake that had gluten in it.