Went back to neuro who 1st dx'd chronic cluster migraine, now complex w/stroke features
The most recent bout of headaches started on April 14, and I was taking Relpax, that was the norm for my migraines. I went to see the same neurologist I saw 27+ years ago who dx'd me with chronic cluster migraines. He did not immediately remember me, but it came back to him, especially when describing some of the negative side effects I had to other meds. I tried to be thorough w/symptoms and most recent meds. My primary most recently on Relpax. When the neuro saw the symptoms, the stated "these are new, you didn't have these symptoms before. You no longer have chronic cluster migraines, but have complex migrain with stroke features." He told me not to take the Relpax or any other Triptan drug again; indicating that these types of drugs could cause death with this type of migraine and has ordered a multitude of tests. Unfortunately I have lost the orders, and left a message for the doctor's secretary. I know it includes a TEE, MRI, and oodles of bloodwork including an ANA. When I got the sheets I could have told him, the ANA changes from positive to negative periodically. How serious is this?
Well I am in no way a doctor, and cant give out medical advice, but I can tell you that complex migraines with stroke.. is NOT a proper migraine diagnosis. It does sound to me like he is describing what I have, Hemiplegic Migraines.(keep in mind I am NOT a dr, and I dont know all your symptoms!) It took a while and some pressure from me to get my Neruologest to give me the proper term, Hemiplegic migraines. another "complex migraine" is Basilar type migraine. It is true I too can not take Triptans. or things like DHE.
As far as the MRI, bloodwork etc, it sounds like to me that he is doing a good through job of eliminating other possible explenations. With the MRI he probably wants to make sure there arent any spots or closed vessles etc. With the bloodwork, and ANA, he is making sure Lupus or other auto immune conditions arent to blame.
I wanted to add a few links, Types of migraines, and Hemiplegic Migraines-The basics, but the link button doesnt work for me. Both these links are on the mymigraineconnection website though, so look around, especially in the green FIND section off the home page. Also feel free to come see us on the Forum if you havnt already! Several of us have hemiplegic migraines(HM) We all understand the fear of new diagnosis, and new symptoms!
Good luck to you and do keep us posted!
Momsbreak9
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Chris,
Neither "cluster Migraines" nor "complex Migraine" is a "standard" diagnosis as per the International Headache Society's International Classification of Headache Disorders, 2nd Edition, which is the "gold standard" for Migraine and headache diagnoses. If I were in your place, I'd be asking him about clarifying your diagnosis and perhaps getting a second opinion.
There are a couple of types of Migriaine that have stroke-like symptoms -- basilar-type Migraine and hemiplegic Migraine -- and tritpans are not usually recommended for this type of Migraine. Triptans are thought to increase stroke risk for patients with either of those two forms of Migraine. But, we can't diagnose, so I'm not sure what other information to give you.
What did he tell you to do if you get a Migraine? You need to have some form of treatment.
Wish I could offer you more information, Chris, but without knowing more, I don't know what else to offer. Hope what I have given you helps.
Please keep us posted?
Teri
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I feel your pain. Don't give up! I'm trying hard not to. I had a TEE yesterday -- transesophageal echocardiogram -- to see if I have a hole in my heart. Apparently, some people with a hole in the heart get relief from their chronic migraines when the hole is fixed. My heart is fine, no hole, so it's not the answer for me, but it may be for others.
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Chris Z
Sunday, July 19, 2009 at 01:07 AM
Yes, no holes was found a year ago either, I was later found to have Leiden V factor (thrombophilia) so am on Plavix and the MTHFR genetic disorder that causes Hyperhomocysteinemia (elevated homocysteine levels -- usually significant B12 deficiency and askewed Folic Acid) controlled by Folgard RX. Both cause clotting genetic disorders cause clotting/vascular issues so none of the migraine abortives (imitrex, etc) for me. I have also had TIA's and am in a pre-dementia condition (MCI-mild cognitive impairment) due to frontal-lobe damage according to the MRI's controlled with Namenda. The cycle that started in April '08 eventually reduced after starting the Namenda... an very pleasant unexpected side effect. My latest cycle was gearing up the past couple of weeks where my balance was going, but it's believed I had another TIA Tuesday morning and we are following up on that. Dilligently read the information here that Teri and the other experts have posted, and take them back to your doctors. Do your research as well. If you have good docs they will listen to you and empower you as a patient in your own treatment. Remember too, what works for me, may also not work for you.