Complex Migraine Syndrome? PLEASE HELP!

Alisha,

The "gold standard" for Migraine and headache diagnoses is the International Headache Society's Internation Classification of Headache Disorders, 2nd Edition (ICHD-II). One of the problms when doctors don't follow that, as yours have not, is that it's difficult to know what kind of Migraine someone is talking about. Under ICHD-II, the diagnoses Complex Migraine Syndrome and ocular Migraine do not exist.

Topamax is frequently prescribed for Migraine prevention. According to the prescribing information, the beginning dose is 25 mg once a day. You can read more about Topamax dosing in Dosage and Tapering of Topamax for Migraine Prevention.

Migraine is a genetic neurological disease. A Migraine attack can have up to four phases and many differing symptoms. I think you'd find it helpful to read Anatomy of a Migraine. Also, given your previous diagnosis of ocular Migraine, I also suggest taking a look at Ocular, Optical, and Opthalmic Migraine.

Given the severity and frightening nature of your symptoms, a Migraine specialist may well be in order. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

I know you're going through a rough time. If you'd like some additional support, come join our discussion forum. You'll need to register again once there because it's a separate membership database, but you can use the same member name, email address, and password that you used here. You can find our forum at http://forums.healthcentral.com/discussion/migraine/forums.

Good luck,

Teri

Hi Alisha

  I got out of the Hosp a couple of weeks ago diagnosed with the same thing.   I live in the Atlanta Area.  I have had migranes since 20yrs old and Im 36yrs now.  I had a really bad headache, not like a regular migrane, my left side got weak, shortness of breath occurred and I had trouble responding to people.  It was like my whole body slowed down and weight was on it.  My left side eventually went numb and my speech became very slow.  I stayed in the Hosp 5 days, I had a ct scan and mri and they found no evidence of a stroke.  The drs came up with complex migrane syndrome.  I think they really dont no what happened, but I decided to do some lifestyle changes.  I watch what I eat, Ive totally eliminated caffine out of my diet.  Ive been finding out what are some triggers for the migraines (for myself).  Ive decided not to get stressed out because for me it does trigger the headache to start.  'The drs released me with napryson and another medication for nausea so that lets me no that they really don't no the cause of this 

I am a 39 yo female experiencing same issues. However, I was also found to have a heart condition, patent foramen ovale (PFO) with TIAs. I had this corrected in surgery with a closure device. Eighteen months later I have been diagnosed with complex migraine syndrome after fainting and remaining unconscious for over 30 minutes. The prescribed treatment for the migraines is Topamax, which aids in prevention, and Midrin (at onset) for the pain. Vicodin was originally prescribed for pain, but tended to exaserbate the symptoms.

Perhaps your medication is the same, if not ask your neurologist about this combo.

I have complex migraines. They are very rare. My migraines started all at once with the occular and then I go into non-verbal communication then I go into paralysis if I do not get help at the hospital.

I just went to John Hopkins in Baltimore, MD for a review.

I take a combination of meds.

I would tell your doctor that the meds don't work and you want to try something else.

I have been changing meds for a year til I got the right mix.

Hope this helpS!

Deb,

One of the most important things is to get an accurate diagnosis. To simplify matters and make it easier for people to get information and treatment, doctors usually go by the gold standard for diagnosis, the International Headache Society's International Classification of Headache Disorders, 2nd Edition (ICHD-II). Under ICHD-II, there is no diagnosis of "complex Migraine" OR "ocular Migraines." We do see thse terms used, but doctors use them differently, so it really doesn't tell anyone what type of Migraines you actually have. You can read more about this in Ocular, Optical, and Opthalmic Migraines and The Type of Migraine Does Matter.

The only type of Migraine that has paralysis as a symptom is hemiplegic Migraine. You can read more about that in Hemiplegic Migraine - The Basics. We can't diagnose, but we can certainly share this information.

Teri

Hello Alishia,

     I originally had symptoms similar to yours. I am a registered Professional Nurse. I experienced a visual phenomena that I now know is called scintilla. I then experienced an episode of right sided tingling going from my little finger and progressing through each finger and the thumb and up my arm and then progressing to numbness (Hemiplegia), right sided weakness progressing the same way to paralysis (Hemiparesis), slurred speech progressing to garbled speech (Expressive Aphasia) and loss of consciousness. CT scans showed no loss of cerebral blood flow. I awoke about 1 hour later with the mother of all headaches. I was seen by a Neurological attending at the hospital where I was employed, and he diagnosed this as a Transient Ischemic Attack. I was worked up for carotid vascular disease, cerebral hemorrhage and arterial sclerotic heart disease. These were all negative. The only positive they found was a bi-cuspid Aortic valve, unrelated to the episode. Two weeks later, I experienced another attack and was seen by a resident in Neurology. She diagnosed it as Complex Migraine. I have bee treated for the last 14 years with oral Divalproex  Sodium Tablets with no further attacks. She explained that Complex Migraine is related to Epilepsy. She explained that it is primarily an electrical phenomena in the brain with attendant vasoconstriction. The vasoconstriction with the subsequent cerebral edema is the cause of the headache which follows the attack. She also said that, had I still been a smoker, the hemiplegia, hemiparesis and aphasia would have been permanent. In other words I'd have had all of the symptoms of a stroke. One of the common symptoms is an optical phenomenon called scintilla I had this for at least 20 years, and like all good nurses, never mentioned it to my doctor. My advice is that you continue to see your neurologist regularly, keep  a diary of all related incidents, take all your medications al ordered and, if your physician does not seem to be taking you serioiusly, find another Neurologist, preferably one associated with a teaching hospital or University.

Hello.  Like you I had a very active life prior to getting hemiplegic migraine initially, and then began also suffering from occational basilar artery migraine.  I was an EMT as a profession which I am now on medical leave from totally unable to do my job which is devistating after fourteen years of service.  I am 37 years old.  I had normal migraines growing up, and started getting complicated migraines with numbness in the left arm and face in my second pregnancy.  They ended up taking my baby a month early because they were afraid I was going to have a stroke.  I started having black outs four years ago when my husband came home from work to find me unresponsive on the floor, and they believe I had been that way for approximately 3 hours before anyone found me.  They transported me to a bigger facility and they ran tests, and found that I have a PFO in my heart, which is a congenital defect that is a hole in the heart.  I also like you have hypothyroid.  I recently developed orthostatic hypotention which is very low blood pressure so I have to be very careful about getting up quickly, and I run arrythythmias in my heart which they have me on medications to control.  I take zonigran which is also a seizure med. to try and control my complex migraine syndrome. 

One year ago while at my mom's house I had a bad trauma where I passed out on an open staircase and fell out over them sideways appx. 6-10 feet they had to help me breath and airlifted me from the scene to a level one trauma center.  I now have a neck injury which aggrivates the complex migraine syndrome.  So, I know what you are going through and it's not fun.  It's is a very dibilitating disease.  I tried to keep up my job as long as I could but the field I was in it caught up with me very quickly.  I have been hospitilizied many times.  I have been dealing with this four 13 years and really don't have any answers yet other than find a great neurologist that you like.  Best of luck to you and my prayers are with you I know what you are going through.  The only other thing that my doctors have made my family do as a chronic pain patient is seek counseling.  I haven't gotten any closer to an answer yet, but I'm still praying for one.  You may want to be checked for the PFO, because they say most complex migraine suffers have that condition.  I don't know if that will be any help to you.  My EEG's aren't normal they come back with right side brain slowing.  Good luck to you, and know that you are not alone in this.