New here; the wife has seen every specialist and had every test (MRI, MRA, scans, Lumbar Puncture, blood work…etc) and all have come back negative as if she had no issues at all. Yet she has a non-stop migraine for the last 12 weeks not (NON STOP…not even a day without one).
I have seen other threads at other site from folks who suffer for years every day with no relief! I have not seen that here thus far. So I am wondering if anyone here has that issue, advice, help…..please help.
I’d like to welcome you and your wife to the discussion forums! I wonder if there is any way your wife can come on and read in the forum too?
I’m not sure if it will make you feel better, but currently migraine is not diagnosed by a test, MRI or blood work. Migraine is diagnosed by a complete neurological exam with a doctor, a review of the patient’s medical history and the family’s history and review of her symptoms.
Another problem we can get into without realizing it because we just want the pain to go away, is if we take migraine abortive migraine medications such as triptans or any kind of pain relievers whether they are over-the-counter or prescription more than two to three days week called medication overuse headache or moh. Here is information on how to avoid this problem; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/
I just wanted to say that your wife isn’t the only one with this problem.
I’m 19 years old and I got diagnosed with chronic migraine last summer after suffering from a migraine-attack that lasted 3 months… yeah you don’t read it wrong: 3 entire months with headaches every single day. I went to see a specialist, had an MRI and an EEG. My diagnosis was easy for the doctors. I hope that one day you and your wife will hear a final diagnose, however don’t give up. Some doctors aren’t that fond of using the term ‘migraine’, because it’s so complicated and different. Not one person with migraine is the same. I hope my (short) story can give you hope again that maybe one day your wife gets the same diagnosis as I did. 🙂
Thanks for replying.
Yes, my wife went through every test possible and saw every specialist (as described in my original post). It was a true nightmare so I understand all you are going through.
HOWEVER, we now have our diagnosis. We were at our wits end and went to see an ENT even though we knew she had no sinus issues. This particular ENT though happened to work with a Neurologist who specializes in migraines and other type issues. She seems a lot of his patients via referral and said in about 3 minutes to my wife “you have occipital neuralgia.” As we were not sure to believe such a simple diagnosis as this is not her field of work, she made a call and got us to see a PT (Physical Therapist) she know works with the neurologist’s patients, got us right in and he then pressed his finger on the back of her neck on a nerve and said the same thing. Her pain went away instantly when he pressed. He then in turn called the actual neurologist for us and got us right in and they did the same thing, diagnosed her and simply said they see this all the time and it is easily overlooked by many professionals.
While it will take a bit of time for the headaches to go completely; as it needs a series of injection to relieve the nerve pain in conjunction with phys therapy, at least she is either headache free of has a minor normal headache on any given day sine (has been over a week now). Soon, the nerve will be healed right and the phys therapy will keep her in check as not to damage it again.
I know there are folks who have regular migraines with no rhyme nor reason, but this something I think anyone who suffers from chronic migraines should look into. Not to say they all have this issue, but since it is so easy to overlook, maybe a few of them out there do and it is something that can be treated and the pain goes away fully.
Thanks for writing Sarah. I hope you have some headache free days soon.
I’m happy to hear that your wife finally got her diagnosis! It’s never easy to live without any answers. Before I was diagnosed, every day was a nightmare. I kept thinking I had something bad and that I would die from it. I was so happy to hear my diagnosis because from that moment I knew things would get better because I could start taking medication for my migraine. Today I’m much better because of my medication. The attacks are less painful and go away faster.
I hope you and your wife can start living again now, with answers and hope that your wife will get better soon! 😉
Wow!!!! I’m a migraine sufferer for 37 years!!! Chronic for the past 13 years….haven’t gone more than 2 days migraine free….I am going to look into the diagnosis your wife received and see if this is the route I need to go. I’ve never been recommended to see an ENT doc…but that’s so typical. I was the one nobody could fix…and I’m sick and tired of I’m sorry but if you won’t take this or that pill were out of options. I’ve taken enough of this and that and have need left with permanent side effects. So no thank you..and I do speak from experience and after many many years of docs, hospitals and different preventatives that have really hurt me physically and emotionally…I’m off that merry go round. Your post is the first that even shines a small light of hope for me.
It was the ENT who diagnosed her only because she has seen it may times, but it is not their field. She knew of it only because the Neurologist she deals with refers to her and deals with that as a specialty. Go the neurologist route and mention occipital neuralgia. Make sure they know of it before you go else you may be on the standard wild goose chase. A phone call to them cannot hurt. Better yet, look up the issue and map it out locally to see which neurologist in your area knows lots about it.
I hope you find a diagnosis for it. Maybe this is your answer, but I know we are all different.
I’m so glad you have hope! Please try not to despair, there are still lots of options event though you may feel as if you’ve tried them all.
In addition to seeing an ENT, have you seen a “true” migraine specialist? A doctor who is actually board certified in headache medicine? Seeing as there are only about 418 of them in the country, I wonder if you have. The thing is many doctors who say they are “headache specialists” do so because they treat a lot of migraine and headache patients. Treating patients alone does not make you an expert. To become an expert migraine specialist, as I said you need to be specially board certified in headache medicine and complete continuing education courses in migraine and headache. Let me share some information with you that tell you what’s so specialist about these doctors; https://migraine.com/blog/how-are-migraine-specialists-different/. If you’d like to look for one, take a look at this article; https://migraine.com/blog/looking-for-a-migraine-specialist/.