I first was diagnosed with an AVM in Oct of '87. I have been getting cluster headaches since 1984. Does anyone else have this same issue? I have always been told they are “probably” unrelated. This can make a HUGE difference to my life as it helps to determine if the Army is going to classify me as service connected at all.
I really appreciate anyone’s input on any aspect of this.
Robert
Headaches and AVMs go hand and hand. Well for me anyway. I had headaches for as long as I remember. They were really bad for the past 15 years and now that my AVM is gone and so are my headaches. My AVM was on my r. temporal lobe. I was also told by all of my docs (and I have many) and from what I have read they are very much related.
Good morning and thanks Jamie. Actually cluster headaches are VERY different from regular headaches. The question lies in the source of cluster headaches which is thought to be the hypothalamus. Plus it seems rare to find someone with both conditions (I guess I’m just lucky). I most sincerely appreciate your input.
Robert
Robert,
Bless you for putting up with headaches that are chronic for so long! Before my first AVM I was swallowing aspirin 2 or 3 times daily because of them, attributing the pain to allergies. Well, after the obliteration, the headaches disappeared. Three years later I was having difficulty breathing and experiencing flu-like symptoms and thought I might have pneumonia, but it was another AVM in the same area. I was due to have GK last summer but lost insurance when my husband lost his job. Over the last six weeks, the headaches have returned and I take Aleve, not aspirin (dr advice) before retiring each evening. For me, they were little angels, I can say, because had I not had them, I would never have been concerned enough to go to the doctor to begin with. Is your AVM brain related? If so, it’s difficult to imagine that the couldn’t be related to your problems. Let me know how it turns out. Remember you know yourself better than anyone, even your doctors, especially when they use terms like “probably”. Take care.
Thank you Vickie. Unfortunately there is no over the counter med that has even a slight effect on this type of headache. Pure oxygen at 15 liters per minute through a non re-breather mask helps sometimes but mostly I get slammed with super strength pain meds to make them go away. I take Percocet daily and after three years (yes I know I must be an addict by now) I really don’t notice that I’m “stoned” any longer. After the three craniotomies as much of the AVM as possible has been removed. Any further attempts will do more damage and greatly reduce my quality of life so I’m just going to deal with it. Embolism and/or the Gamma Knife are not viable options in my case so I just want to maintain quality of life over quantity. I’m over nine years now since my last bleed. I’m hoping for another fifty! I’m in no way giving up but I have led a fun life, I’m retired, divorced and never had kids, my dog is 13 and in kidney failure now so as long as I live long enough to see her until her end I’m really okay with everything. With any luck my next bleed will be while on my boat drinking a beer with friends. I don’t want it to happen but if this thing gets me I’m okay with it.
I’m sorry about your husband’s job loss and your insurance. Did you investigate COBRA? I know very little about this stuff. Fortunately I’m an Army veteran and am able to use the Veteran’s hospitals. Without them I’m not sure where I would be. I might have tried “self embolization”.
The very best of luck to you and thank you sincerely for the comment and well wishes!
Robert
Vicki said:
Robert,
Bless you for putting up with headaches that are chronic for so long! Before my first AVM I was swallowing aspirin 2 or 3 times daily because of them, attributing the pain to allergies. Well, after the obliteration, the headaches disappeared. Three years later I was having difficulty breathing and experiencing flu-like symptoms and thought I might have pneumonia, but it was another AVM in the same area. I was due to have GK last summer but lost insurance when my husband lost his job. Over the last six weeks, the headaches have returned and I take Aleve, not aspirin (dr advice) before retiring each evening. For me, they were little angels, I can say, because had I not had them, I would never have been concerned enough to go to the doctor to begin with. Is your AVM brain related? If so, it’s difficult to imagine that the couldn’t be related to your problems. Let me know how it turns out. Remember you know yourself better than anyone, even your doctors, especially when they use terms like “probably”. Take care.