Chronic cluster/migraines
 

I have been suffering from chronic cluster/migraines for 38 years. I have tried EVERYTHING over the years. I have been treated by neurologists and I continue on with a local pain clinic.

I have had 3 ablations (which did work, but left me with extreme pain in my neck for months), I had botox for migraines about 8 months ago (which left me with the posioning... went into my kidneys and heart for 3 months).

Needless to say I have suffered depression from dealing with pain 24/7.

I have just been approved by my insurance company to have the P-Stim the week after next. I understand that pain is the loneliest experience anyone could ever endure and I have so much compassion for anyone who has to live with this trial in their lives. There is nothing I wouldn't do to relieve this pain in my head... I have even been looking at surgery.... I don't want to live the rest of my life like this. I have had it. If anyone has any ideas I am open to them. I assure you there is nothing I having tried short of surgery. Thanks

Hi Happygma,

First, we have a dedicated Headache forum.

Have you been to a headache specialist? Not a neurologist who treats headaches -- most claim to do that. I mean a doctor (may or may not be a neuro) whose practice is limited solely to headaches/migraines. That's what it took for me; after years of being bounced from neuro to neuro, I found a migraine specialist who was able to dx me the first visit with 3 questions. Treatment took a bit longer, but he was eventually able to reduce my headaches in frequency (>15/month to <10/month) and intensity.

Doc

also have you had a cervical MRI to see if you have Chiari Malformation

Hi! Tell me about your experience with botox please! I also have chronic, daily migraines for 4 years. I had severe hydrocephalus and a vp shunt placed 4 years ago after 3 surgeries. My headaches are debilitating. They wake me up at night. I have 2 young kids and I have to take way too much over the counter pain medicine daily to make it thru. I can't take anything else because narcotics interact with my seizure meds (I developed epilepsy after my surgeries) I had botox and my headaches got even worse for about 3 weeks then they gave me a little relief. I still have headaches everyday. It's time for me to have botox again, but I'm terrified of the headaches getting so much worse at first. Did this happen to you? I totally and completely understand your emotional pain. Chronic pain is terribly emotionally and physically exhausting. I'm so sorry. I know how you feel. But 38 years. I can't even imagine.

what are these ablations you had? i dont understand how this is done. hope youre feeling better by now

Hi Happygma
 

My Neighbor Lori, has had these headaches like you for years. Recently she went to Tampa Bay Hospital, where she was taken off all her medication over a period of months. She had the fentanal patch. They have been doing a form of bio feedback with her. This is an on going situation, but she has had some relief from the techniques used. Docs. up that way said that meds. really don't work very well with cluster headaches. Pain levels do go down but do not go completely away. I don't know if would be of benefit for you to investigate but I thought to mention it to you. I am sorry you go through this. I know how much Lori has suffered over the years. ginnie:hug:

chronic migraines
 

I am so sorry for what you are going through. I have chronic migraines for many years now and the neurologist and pain specialist have not been able to help me. I had epilepsy brain surgery in 2002, I'm not sure if the migraines are a result of the brain surgery or not. Not sure where to go from here. The neurologist I'm seeing now wants to do botox...I've heard good and bad about botox. You get to where your desperate and will try anything for some relief from these sharp stabbing pains in your head.

I wish you the very best of luck finding something that will help you.