I have multiple health issues including celiac disease, and a heart arrthymia caused by cmv leading to chronic fatique syndrome. I have had migraines for years and take Maxalt. I can not take Imetrex due to the side effects. Last week I had my first hemeplegic migraine and spent 3 days in the hospital with all the test to rule out stroke, ect. I have had 3 episodes of the stroke symptoms this week with out fully getting rid of the migraine yet. They put me on predisone to break up this attack, topamax as a preventative and cont. the maxalt as the abortive since it usually works on my migraines. They also changed my heart medicine from tenormin to cardizem to see if the calcium blocker will work better then the beta blocker but my arrthymia has seemed to have gotten worse and I am short of breath. I am reading that the Maxalt is a triptapan and that is counter indicated for hemi migraines. What do people do for the abortive portion of the treatment plan? Any suggestions would be greatly appreciateated.
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Hi, My hemiplegic migraines were diagnosed in 2008 when I was 56. I had had migraines for some years before, but the hemiplegic type were much more debilitating and hard to treat. At the time I also started having lots of reactions to medications, something that had never happened before. I have been unwilling to try any prescription meds for my hemiplegic migraines but do use a number of supplements and OTC meds. I supplement with 400 mg of riboflavin & 800 mg
of magnesium. I also try to take 3 benadryl and 2 advil as soon as my symptoms start. Sometimes that will stop them. I also drink diet coke when I have them and it seems to help although most of my docs want me to stop it. I can't say my headaches are well-controlled with these treatments, but they are less troublesome than they were in 2008. My husband, who is a doc, but not a neurologist, isn't convinced that hemiplegic headaches are migraines at all. Blessings to you and your health care team!
Hanne, Do you mind discribing your symptoms? I know everyone is different, and I am learning everyday, and every hour mine seem to change but I am craving info. This one has lasted for 2 weeks and it is not under control. My left side of my face burns like I am to close to a fire and my left side is weak and I limp. I may get a 10 minute reprise and the pain go to my right and the burning leaves and I can think clear again and sorta seem like myself. But then the pressure starts to build up and the pain and burning comes back. I am so thankful I had a bad one with the speech problems when they were doing the MRI so we are pretty clear on my diagnosis. I am sure it is pretty scary and uncertain not really knowing for sure if it is what you have or not, Hanne. The only thing that seems to help so far is ice pack but I go back next week to have my Topomax readjusted and hopefully something for my heart rate readjusted. It is hard to run after teen age kids in track, band, etc, when all this is going on-lol. I would love to hear how anyone handles epidosodes and how it effects you!!!!
Donna-
Hi,
My hemiplegic headaches are not painful, unlike the migraines I used to have and still do on occasion. Instead, mine present as yours did, as a mild to moderate stroke.
My husband says that when I am having a headache, it's like I'm "in slow motion." If they are bad, the right side of my face sags, esp. the eyelid, my vision is blurred, my right side is weak and I may be unsteady or off balance, my cognition is greatly slowed with the result that I have a hard time conversing or doing complicated tasks like driving, my memory of things that I do during the headaches is not good. I am quite sensitive to noise and light and can get irritable. I usually crave carbs and diet coke -- other sources of caffiene don't help me. One of my docs said diet coke is full of excitotoxins.
One of my neruologists said "it's like having a stroke half the time." She also said hemiplegic migraines are a channelopathy: the opposite of epilepsy in which the brain releases chemicals that excite the body, instead chemicals that depress the body are released.
My bad headaches usually only last 24 -- 36 hours and, unlike you, I have no pain. You have my sympathy if you have the stroke-like symptoms and pain. Before I was diagnosed at the Mayo Clinic in 2008, I did have them every day for about a month, and no one in my city knew what was happening to me. It
was the Mayo doc who recommended the magnesium and my local neurologist
who recommended the riboflavin. She also had me try Petadolex (butterbur) but I developed a rash -- it is not recommended for people with a ragweed allergy because it's in the same plant family.
The only trigger I am sure of is fatigue. I do have periods of 2-3 weeks a couple times a year in which I am headache free. Right now I am in a headache every day phase, but they are mostly mild to moderate. My first signal is usually anxiety and a sense that something's not right in my brain, followed by my sagging eyelid and if I take the benadryl and advil right away the headache will sometimes stop. If it doesn't, I'll try diet coke. If that doesn't help, I take a nap and wait for it to end.
My kids are grown so I don't have a part-time chauffeur's job anymore as you do. Rest is probably the hardest thing for you to fit in your schedule, but I have found it is the best treatment for my bad headaches.
I have found the journey to cope with these headaches to be a lonely one since it is a relatively rare condition. Since mine seem to be linked to my allergies, I have to be very careful about going outside or to places where there is a lot of perfume.
Hope something I wrote will be helpful. If you just need to vent, feel free to do that with me! Blessings to you.
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Hello, and welcome to HealthCentral's Migraine Community!
It was so nice that you are able to share your story with us. Hemiplegic Migraine (HM) is a rare from of Migraine disease. To read more about it, take a look at Hemiplegic Migraine - The Basics.
Verapamil seems to be one of the first line choices in medicaton to treat HM. But I don't know how that will interact with your other conditions. You may want to discuss this with your doctor. Triptans -- Imitrex, Maxalt, Zomg, have been contraindicated in the past but I found journal abstract that says something a bit different; HM and Triptans, take a look.
Neurologists may be fine doctors, but have a hard time being experts in one area. This is because they treat so many conditions like MS, epilepsy and stroke. A Migraine specialist is just that, an expert who treats one condition - ours - Migraines and headache disorders. When you get a chance, take a look at 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. It is worth it to look into a Migraine specialsit, especially with complicated cases such as yours.
Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.
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