Complex Migraine or something else?
Hello there, I have a daughter, she is 19 years old, in Nov 2018 she suffered her first migraine attack (10 in scale of pain), before that she had normal headaches nothing bad.
After the first one, 2 days after, she had 2 more (also 10), and after that she became weak, very weak. She walk and speak very slow. Like I said to the doctor, If I did not know that what my daughter has is a complex migraine, I would think that what she has suffered is a stroke.
She has already had 2 MRI and 2 CT of the head, EMG, Spinal Tab, Carotid Duplex, EKG, Blood test, Hormone test, Urine test and all with negative results.
It is been almost 4 month since the first migraine attack and she is still weak, she use a walker to walk around the house and wheelchair if we need to go out. She has been seen by neurologists and psychiatric to help her with anxiety and depression.
They tried different medicine as a preventive, Topamax, Keppra and Lithium but all these three medicine had bad side effect on her, after a week of trying the medicine she became very weak that she even coudn't walk and lost her speech for 2 or 3 days. After stop the medicine she recover to the same stage of weakness.
Right now she is trying Zonegram, but apparently it is doing nothing on her so far(11 days) because she is still having headaches every day (4 or 5 is scale of pain) she is still very sensitive to the light, smells and sound. I believe that is what is keeping her weak.
I don't know how to help my daughter, sometimes she is crying because she is afraid of being disabled of her life. And apparently the doctors gave up on her case because they said they can't find anything wrong with her. They said what she has is a complex migraine but I have my doubts, I have not been able to find information that tells me that a migraine puts a person in that state of weakness, specially for such a long of time.
Please if somebody had a similar experience, share with me information. We are waiting for her first appointment in Shands Hospital in Gainsville, Fl with a neurologist specialize in migraines. Unfortunately they are very busy and her appointment is in April. I would appreciate any help. Thank you.
Hi meslopez,
I'm so sorry to hear your daughter is not feeling well. I understand how frustrating it is to see our children in pain. Let me see what information I can give you that may be helpful.
Migraine is thought to be a genetic neurological disease that can impact our entire body for days, depending on how long the attack lasts. People can have migraine attacks that are mild, moderate or severe with many different symptoms. Typically when the migraine attack is over, so are the symptoms, however it can be difficult to tell when one migraine attack is over and another begins. This can make treating migraine disease difficult.
Getting an accurate diagnosis is vital so your daughter can get the correct treatment and learn about her particular type of headache disease.
It's good to hear your daughter is seeing a doctor soon. I do wonder if he/she is board certified in headache medicine, which is different than being certified in neurology. Seeing a doctor who is board certified in headache medicine can make all the different. Here is information on how these doctors are different and how to find one; https://migraine.com/blog/seeing-a-board-certified-headache-specialist/ and https://migraine.com/q-and-a/finding-specialist/. This link contains all the doctors in the U.S. who are board certified in headache medicine; https://migraineresearchfoundation.org/resources/find-a-doctor/doctors-certified-in-headache-medicine/.
Your daughter may want to start keeping a detailed migraine journal to see if she can identify and triggers and/or patterns her attacks may have. Here is information on how to do that; https://migraine.com/blog/keeping-migraine-diary-basics/.
To prepare for her doctors appointment, we have tips on how to do that so she gets the most from her visit. Let me share that information with you here;
https://migraine.com/getting-help/six-tips-for-migraine-patients-at-your-doctor-appointment/ and https://migraine.com/topic/preparing-for-your-doctor-visit/.I hope this helps. Please let me know how your daughter is doing.
Nancy
