Living With Migraine

By aretiargeros

1 min read

I am a 56-year-old woman suffering from migraines for more than 20 years. I have tried everything, have gone to specialty clinics in different cities, nothing works this past year I have been more days in bed than out of bed. Recently I heard of a doctor who does migraine surgery, has anyone else heard or done that?

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Peggy Artman Moderator
Hi <inline-mention user-id="3869080" username="aretiargeros"/> , I'm so sorry you are having such a difficult time with migraine. A lot of us here on this forum have tried a lot of treatments that didn't help. I googled migraine surgery and discovered that there are different kinds of surgery for migraine. I suppose you could get a consultation appointment to see which kind of surgery is recommended and then go from there. I know there must be others that have undergone surgery for their migraines and they are welcome to chime in! Keep us posted. ~ Peggy (Migraine.com team)
headachemike Member
I'd be very, very weary of any neurosurgeon claiming to cure migraines with surgery. Neurosurgery is a very delicate and precise surgery. I've been to every major medical university hospital center in this country over the past 35 years. Spoken to leading neurosurgeons and neuroscientists around the world about it. Attended AANS Conventions (American Assoc. of Neurological Surgeons) and have had 2 neurosurgeries. My next neurosurgery will be on autopsy. I'm not trying to discourage you, I'm trying to help. My two surgeries were successful, not for headaches tho, the headaches have only gotten worse from having them. The thought of neurosurgery should never be taken lightly no matter how much the surgeon wants you to believe that they know what they are talking about. They just don't understand enough and they never will. The highest power that they have to understanding the brain is their own brain. Do you trust anyone that much to make a non-life threatening decision? Living with headaches is awful, it's horrible and it feels like an act of the devil. I am allergic to all opiates, codeine, barbituates and pain relieving meds. My cocktail consists of sedatives, muscle relaxers and tylenol. Taking that combination will hopefully get me eight hours of relief. Sometimes it does and sometimes it doesn't but there will not be another surgery. Like I said, I'm not trying to discourage you but there are risks involved in any surgery. Best of luck with any decision that you make. Mike
dinamay Member
I have not had migraine surgery, first, but I did ask a couple of neurologists about it. The first was adamant that it was a bad idea. He said that doctors had thought at one time that it was helpful to install something like a TENS unit in the scalp. When a migraine would start, the person with this unit would turn it on, using a handheld device. But over the years, as more of these devices were installed, the results were disappointing. Okay, so I forgot about it for awhile. When I started seeing a new neurologist, I asked about a different procedure, this time killing or excising the trigeminal nerve that goes down the front side of the head. This too has been known to help some people but has not turned out to be nearly as promising as once thought. But it doesn’t hurt to ask about a treatment option. If you find a neurologist who thinks you’d be helped, I’d just suggest you get a second opinion before opting for it. It seems to me that what helps another person is not at all what helps me, so even if some have had poor results, that doesn’t necessarily mean everyone will. Good luck to you!
loraine84 Member
Yes, I had surgery for my migraines, I was desperate too. The surgeon is Dr. Guyron, who works out of Cleveland. He is a primarily a plastic surgeon who discovered his technique, when many of his patients who had face lifts, would comment that their migraines were diminished after surgery. He fine turned it for migrainers and he establishes on each migraine patient, the trigger points that trigger the migraine, and operates on each point, moving nerves around (I think). So the surgery is located on your forhead,, below ears and back of head. Your knocked out and wake up with a blazing migraine because of all the manipulating he has done to these trigger points. I could go on, but for me, it didn't work. I waited a long year to wait for positive results. Sorry for bad news, though you could be the exception!
1. Lawrence Community Admin
 <inline-mention user-id="3810301" username="loraine84"/> ! Thank you for sharing your surgery experience. I can feel your disappointment, in the procedure not resulting in pain relief. As someone who has had surgery in the past, and was very reluctant to do so, the expectation is always for the result to bring healing and relief over time. Have you been able to find a treatment option that has been successful for you since your surgery? Wishing you a pain-free day! -Lawrence (Migraine.com Team)
primrose17 Member
Basically you first need to try Botox or nerve blocks to establish if the nerve surgery would help you as it is a very invasive surgery. Years ago I had a consult with Dr Ivica Ducic, who used to be at Georgetown (now at Washington Nerve Institute.) I was not judged to be a candidate because Botox had not been successful. (Actually, Botox made my migraines much worse for 4-5 months, but for some people it has really helped, its always worth trying.) I've had migraines for 30 years, but in the last 5 I've made changes which have steadily made made me feel much, much better. Its been such a journey. 🙁 Like many I had tried everything. I have not suffered trauma or damage to my head or neck. (Which can be the cause for some.) The following has been my experience & is not intended as medical advice. The causes of my migraines are food allergies & intolerances, vitamin/mineral deficiencies, with exacerbation by hormones. I am allergic to dairy, intolerant of gluten, (causes neck pain which causes migraine) and a question mark over sugar. Due to menstruation (& perhaps also genetics) I am low in iron (headaches can be a symptom of low iron-our brains need oxygen but without adequate iron it can't get there!) supplementing with magnesium and vitamin D daily has massively helped me. (I am not a vegetarian.) When I have dairy mucus immediately collects in my sinuses, which puts pressure on my trigeminal nerve, which leads to a headache usually within an hour. Note that my blood tests for dairy allergy were 'negligible,' leading to 10-15 yrs of extra pain. I have come to believe only food exclusion diets provide reliable results. Hormones-ah the joy of being female. I've learned estrogen is pro-seizure, while progesterone is anti-seizure. Headaches & seizures are similar in how they originate. In short my migraine threshold is far lower the 1st two weeks of my cycle (bleeding to ovulation) when estrogen is high (and unopposed by progesterone) than the last 2 weeks of my cycle when progesterone is higher. I've learned I can't get away with eating sugar (inflammatory) the 1st two weeks so I indulge after ovulation for the week or so before my period begins. I use temperature tracking to figure out ovulation. The reason I mention of all this is incase you are on HRT (Estrogen.) last note - while my food allergies were undiagnosed I had very little success with medication or vitamin supplementation. The food allergies were the linchpin, then I progressively got better as I figured out the other stuff. Figuring our the hormonal element has been the last stage & the hardest to resolve. Its hard not to feel we are at war with own bodies as females. 🙁 This is all requires me to be very disciplined with my diet but I personally feel it is worth it. Food shopping takes longer from checking ingredient lists & my food bill is probably a bit higher but I don't daily preventative meds & currently take zomig about twice a month, typically because I ate sugar around my period. For others who want more freedom with food they take daily preventatives. For me they didn't work & I couldn't tolerate the side effects. Best wishes to you & a big hug
1. Lawrence Community Admin
 <inline-mention user-id="3843184" username="primrose17"/> thank you for your detailed response! Food allergies are a very common trigger for migraine. When did you first learn that you are allergic to gluten? The challenge that many within this community have expressed, is maintaining a disciplined diet, primarily finding variety while also considering their triggers. Did you seek help from a nutritionist or your medical provider when you first learned that food is your trigger? Wishing you a gentle day! -Lawrence (Migraine.com Team)
2. primrose17 Member
 Hi Lawrence, I'm not allergic to gluten. I don't have an obvious immune response to it as I do to dairy. I think most allergic responses are to a protein. After a colonoscopy I've been told I'm not celiac either, there is no damage visible. Yet gluten causes undeniable neck pain & inflammation for me, so for that reason I say I am intolerant to gluten. From what I've read there is growing medical acceptance that gluten sensitivity is on a spectrum. The allergy may be to fructan, not gluten. Yes I have sought help from medical providers regarding dietary triggers, but due to limitations on their time & training they were not able to offer much assistance. I pursue a wide, varied & healthy diet & use paleo cookbooks as they seem the best fit for my diet.
primrose17 Member
Forgot to also mention I consume NO caffeine as I don't want rebound (and it causes massive breast pain) and I have alcohol only about twice a year. For a lot of people of course these restrictions would not be acceptable. I seem to be very sensitive to rebound, whether from caffeine or pain relievers. I agree with HeadacheMike that headache/migraine feels like an act of the devil. Best wishes
aretiargeros Member
I don't have any caffeine either, and I have had no alcohol for over ten years. But the last few months I have been getting worse, with muscle pain, either on the left or right side of my neck, which turns into nots,and shoots up my head. I am at my worst point, that I ever been.
1. primrose17 Member
 I am so sorry to hear this Aretiargeros. Have you had an MRI of your neck or visited a chiropractor? Did you suffer any injury or trauma to your head or neck? Have you been tested for any infectious diseases such as Lyme? Lyme can cause muscle pain but from what I've read its typically in the knees & hips. (It can progress to neurological involvement though.) Have you tried an acupuncturist? i'm scared of needles so I haven't but I have friends who were in a lot of pain & acupuncture really turned their life around. I would search this forum for other responses about Botox as what you've described does sound muscle or nerve related. When I had Botox the shots were not in my neck but in my forehead, temples & back of my head. I use a supersoft ergonomic pillow (from Ikea so cheap) as I used to have a lot of neck pain, but as I noted below I linked that to gluten. For me, no gluten= no neck pain. Best wishes to you.
2. primrose17 Member
 A blood test of C-reactive protein (CRP) measures the level of inflammation in the body. I believe its a fairly straightforward test you can request from your doctor. I will note though that I had a low CRP even when I was in a lot of pain, but its always good to rule things out especially things like infection. I wonder if massage from a physical therapist would help loosen your neck & head muscles. Best wishes
aretiargeros Member
Thank you primrose17,I will look in to that