Tuesday, July 20, 2010 StopThinkFeel asks

Q: On-going hemiplegic migraines-

My father(50) and I both have Hemiplegic migraines, as well as other members of my family. For those who don't know what a Hemiplegic migraine is, it's a migraine that resembles a stroke but do not cause permanent damage. Usually when my father and I have one, the migraine will last a day or two, and are followed by a few days of exhaustion.

Recently, however, my father had a migraine that was more intense than usual. The days following the symptoms continued so he went to the hospital and everyone feared it was an actual stroke this time. Tests were done and they found out it wasn't, thankfully. They continued with other tests, such as an MRI and MRA and found nothing.

However, for the past three weeks he's had reaccuring migraines. They're debilitating so he hasn't been able to go to work or do much at all. The doctors and neurologists have given him several different kinds of medicine and they aren't working.

So, I guess my question is if anyone else has had on-going, debilitating Hemiplegic migraines and what they were told to do, or did to stop them? Or just tell of your experience so that we know this has happened to others. Answers would be greatly appreciated.

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Answers (3)

Nancy Harris Bonk

7/25/10 10:22pm

Hi StopThinkFeet,

Well, since there are quite a few members of your family who have Hemiplegic Migraine (HM) I'm really hoping you all see a Migraine specialist. Neurologists may be fine a doctors, but in reality, may not be "true" Migraine and headache specialists. This is because they treat so many different conditions like MS, stroke, epilepsy and Parkinsons it's hard for them to be experts in one area. Whereas a Migraine specialist is an expert in one area - ours - Migraine and headache disorders. . 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.

It is definately time to see a different doctor who can help him, that is the expert.

Good luck

Nancy

StopThinkFeel

7/26/10 4:51pm

I agree with you whole-heartedly about getting a Migraine specialist. Over the past month when all this has been happening my faith in neurologists has decreased so a very small amount. I'm going to read the articles and try to find a specialist near us. Thank you very much.

--Kristie.

Nancy Harris Bonk

7/26/10 8:21pm

Hey there,

Let us know how you make out with a new specialist, ok?

Nancy

bmfaulk

7/22/10 10:52pm

Hi, so sorry to hear you and your family are going through this condition. I too struggle with recurrent attacks as well as typical migraines with aura, ice pick headaches, and retinal migraines. I had to try several different drugs and drug combinations in order to break the HM migraine cycle. I finally found some relief with the daily usage of Topamax. For rescue meds, I use Valium, Phenergan, Flexeril, and Aspirin. Sometimes I get relief from Excedrin Migraine and Valium for rescue meds when HM attacks hit. However, even after a year, I still have 6 plus HM attacks a month and around 2 regular migraines a week. This is an improvement though. My point being, finding the right meds is crucial. Also, exercise has been VERY helpful. Swimming or fast walking seems to really work. Generally taking a dose of aspirin and not getting too over heated will keep an exercise headache away. Something else that I found of great use was Teri Robert's book, "Living Well With Migraine Disease and Headaches..." and other articles found on this site. Also, if you don't already have one, a migraine and headache specialist may be a good resource. There is a place on this site that recommends ones in different states. I really hope things get better for you and your family. I know how hard this condition can be on you and the ones you love. Good luck and please let me know if you find some answers. I'll do the same. Beth

StopThinkFeel

7/26/10 4:48pm

Thank you so much. It's getting really difficult because going to work is so hard for him. The neurologist is pretty much useless at this point, they said they can give him an I.V. treatment next month, but he has to be having a migraine the day of the appointment. It seems at this point they aren't even attempting to help. I'll talk to him about getting a specialist, and have him ask his doctor about some of the medications that work for you. Also, I was curious as to when you began having the attacks?

I'll keep you posted on if we get anywhere with this. I really appreciate your help!

--Kristie.

bmfaulk

7/28/10 7:21pm

Hi Kristie, I see from some of your other posts that you have got hooked-up with Nancy. She is an incredible source of knowledge and has been the person to help me most on this site. Hope I can help you and your family the same way. I have had severe migraines since the age of fifteen but they dramatically changed three years ago after the birth of my daughter. During a difficult pregnancy (with horrible migraines,) I gave birth and had a seven month migraine free period. Longest headache free period of my life. Then one day felt like I was coming down with the flu and the HM attacks started and never stopped. Doctors had no idea what was wrong until last year when they thought I had a stroke. However, my MRI and CAT Scan were clear plus I was only thirty-five and otherwise very healthy. One thing I've learned this year is to really advocate for yourself as a patient. If your neuro is not helping you now, time to find someone who will! HM can be well managed there are people on this site that are proof of that. I believe I am well on my to that myself. Hang in there. There are others thinking about you. Be well. Beth

StopThinkFeel

7/30/10 1:53am

Thank you. I'm sixteen now and I think I had my first HM attack at around the age of thirteen. This year was the first that I had several migraines in a month span of time, rather than one every year or so, and a few that were pretty severe. It's scary because I don't know how bad my condition will worsen, and what to do if it does. My father didn't start having his until sometime in the past 5 or 10 years.

As for the recent struggles; he did well for a few days, and then yesterday had another attack. I told my Mom that a specialist would be our best bet but money is a big issue, especially because the migraines prevent him from going to work and that could definitely cause my father to lose his job. So I'll let everyone know if we find one, and if so what they say. Joining this message board and becoming aware that others with this condition are out there and are also looking for answers gives my family and I hope. So thank you all again.

--Kristie.

bmfaulk

8/13/10 12:34pm

Hi Kristie,

I found out some new, really important information you may want to check out. I finally saw a headache specialist and she really helped me out. First, she told me meds such as Ambien, Klonopin, Valium, Excederin Migraine may be making my migraines worse. (I do not know if you or your dad use any of these but some were part of my rescue meds.) For abortive ideas she suggested injectable Toradol, Oxygen 100% by mask or other anti-inflammatories such as Cataflam. Also, I get exercise induced HM attacks and she suggested a med called Indocin. She said it does not cause analgesia rebound headache. Please, please take into consideration these are only suggestions to talk to your doctor about. All HM cases are so different. I just wanted to share some info with you guys. Hope it helps. Take care. Beth

Teri Robert, Health Guide

8/16/10 12:22am

bmfaulk,

Are you sure you understood your doctor right? NSAIDs, including Indocin and Toradol CAN cause medication overuse headache, aka rebound. In fact, the International Headache Society's criteria has a subcategory for MOH caused by NSAIDS. For more information on this, take a look at Medication Overuse Headache - When the Remedy Backfires.

Also, Toradol is an NSAID, not an abortive. Maybe this article will help -- Preventive, Abortive, and Rescue Medications - What's the Difference?

Hope this is helpful,

Teri

bmfaulk

8/16/10 12:17pm

Hi Teri,

Thanks for the information! I double checked the treatment plan sheet and it said, "Typically Indocin 25-50 mg 1-2 hour before exertion prevents exertional migraine. Indocin does not cause analgesia rebound headache." Glad to know it can before I started to take it prior to exercise. (I exercise daily.) I will have to ask why she wrote this in my plan. And in reference to Toradol, I did not mean to misspeak. The doctor explained it was an NSAID and overuse could cause rebound headaches. I hope to keep in contact with you and keep learning about Hemiplegic Migraines. This site has been so helpful-thank you. And to Kristie, sorry for the misinformation. Beth

Teri Robert, Health Guide

8/16/10 12:27pm

Beth,

Thanks for replying. I so often wonder about people after I post to them.

I don't understand her saying that Indocin doesn't cause rebound/MOH. By the time something makes its way into the IHS criteria like NSAID MOH has, it's been very well proven. Also, my doctor had prescribed Indocin for me at one point, and was quite adamant that I not use it more than two or three days a week because of the MOH issue. Well, you have the information now. I'm sure you'll talk it through with her.

Absolutely keep in touch. There's not a great deal of information about hemiplegic Migraine anywere, but whenever new information comes out, I'll be writing about it.

Please let me know if I can help you with anything.

Teri

bmfaulk

8/16/10 4:25pm

Hi Teri,

Just wondering, do you still take Indocin 2-3 times a week? And did you too use it to control exercise induced migraines? If so did you find that it caused MOH? Sorry to grill you but you seem to be one of the few people who has the most up-to-date information! Do you know of anything else that can be used before exercise? I'm getting a bit scared to exercise outside of my house. These HM attacks come on very suddenly. However, per your advice on this site, I do wear a medical alert bracelet. Thanks for all the help. Beth

Teri Robert, Health Guide

8/16/10 4:39pm

Beth,

I don't feel like you're grilling me. Don't mind answering questions at all.

No, I don't use Indocin. It never did anything for me. I might as well have been swallowing breath mints.

How often do you have Migraines other than those triggered by exercise? Are you taking anything for prevention? Some people do find that "regular" preventives also help with the exercise triggered Migraines. Another thing you might give some thought to is if it's the physical exertion itself that's the trigger or something related to it. Have you checked your blood pressure after exercising? What about hydration? There's a reason why sports drinks were developed. Plain water doesn't replace electrolytes, so sometimes people will have dehydration issues even if they drink a lot of water. Any possible triggers where you exercies? Cleaning products, lighting?

Glad you wear a medic alert. I've never needed mine, but it's still on my wrist. Better to be safe.

Teri

bmfaulk

8/16/10 6:18pm

Hi Teri,

Watch out, you may be opening Pandora's Box here...For prevention I take 300 mg Topamax and 50 mg Lamotrigine daily. As far as headaches, I have 15-20 monthly, 8-12 or so which are typical migraines and 4-6 which are Hemiplegic. (This does not include any which may be induced by exercise.) Much better from when the condition started. Heat and a rise in body temp are huge triggers for me so I swim. I have low blood pressure and it does help to drink a sports drink as well as water when I swim. And unfortunately, I have had to use my medic alert bracelet. I'm also a special needs swim instructor--the water used to be my most comfortable place. Now a bit scary. But can't let your headache's become your biggest "headache." Funny, Hemiplegic Migraines don't just paralyze the limbs at times, they can paralyze the mind with fear at times too. Thanks, Teri. You have a great and very compassionate ear to bend! Beth

bmfaulk

9/ 3/10 12:22pm

Hi Teri,

Just wondering if you could do some trouble shooting with me. Since starting to see a headache specialist last month my Hemiplegic Migraine attacks have increased. She suggested doing a few things and added different meds to take at the onset of attacks. My last doctor had me using Valium, Klonopin, and Excedrin Migraine for attacks. For prevention, 300mg Topamax and 50mg Lamotrigine daily. The specialist could not figure her rationale for her meds used for the onset of attacks so she said to stop using them. Adding that they may be increasing incidence of headaches, especially use of Excedrin (probably giving me MOH.) Since stopping the Excedrin and weening down on caffeine (2 cups coffee a day) I keep getting daily headaches (MOH I'm sure) that turn into HM attacks. Is there any other way to stop other than cold turkey? My new doc has given me Cataflam to stop attacks but thus far it has not helped. Her next idea is injectable Toradol. What worries me is going from one NSAID to another. I've read it can take months to get rid of rebound. Yet how do I stay HM free? Any ideas? Any thoughts would be greatly appreciated. Thanks. Beth

Q: On-going hemiplegic migraines-

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