What questions do you have about migraine treatment?
Where I live I have only 1 doctor that treats hemiplegic migraines, which is one of the ones I have and, I am not in their medical group, and they are short-staffed right now so they are not accepting new patients. The other doctors are 100 miles away. I have so many kinds of migraines that my neurologist has no idea how to treat me. He put me on Amovig and my hair started to come out worse than it has been. I can't take that. My fear is no doctor in my area will be able to treat me. I am a very complex migrainer. I just don't know what to do anymore. I don't want to keep having these hemiplegic migraines. The left side of my face and body goes numb. They are small TIA stokes. I was in a doctor's office when the first one happened. Then I had to go to the hospital. I have had about 8 so far, but not all down to the leg. Some to the arm or neck. I am worried if these little strokes are hurting me more. No one can tell me.
I am so sorry you are experiencing symptoms like this. It can be very hard to find someone to treat us when we are extremely complicated. I do not have hemiplegic migraine, but one of my good friends does. They have put her in the ICU too many times to count. When admitted from the ER, they always think it is a TIA, but, it is not. It is hemiplegic migraine. Then she sees the neurologist and they stabilize her and send her home each time. I think it is important to rule out TIA versus hemiplegic migraine. It can be difficult to tell the difference. Did you know that last month was Migraine and Headache Awareness Month? This article was written a few years ago but talks about hemiplegic migraine and June 16th, Hemiplegic Migraine Awareness Day. https://migraine.com/living-migraine/hemiplegic-awareness. I also wanted ask if you have ever contacted the Migraine Care Line? This could be a great resource. They may be able to help you find a provider. They offer free help. Here is the link to them: https://migraine.com/living-migraine/free-case-managemnt. Hang in there. It can be difficult, but I feel that you will find the right provider. (Tonya, team member). - I'm so sorry you are navigating one of the hardest-to-manage migraine types with hemiplegic migraine. It's very disconcerting to experience. Atop that, to live in an area where there is insufficient coverage of migraine specialists - very troubling too!
I will say that there is a national shortage of migraine specialists, unfortunately. So many people are currently traveling hundreds of miles (and sometimes states away) to see their migraine specialists. We recommend people with complicated migraine conditions (like hemiplegic or chronic) be evaluated and treated by a migraine specialist. Here are some links to migraine specialists to hopefully help you find one near you: https://headaches.org/resources/healthcare-provider-finder/. And: https://americanmigrainefoundation.org/find-a-doctor/. These lists are not comprehensive so we encourage you to do your own online research to find migraine specialists near you and to do due diligence to look for reviews as well.
I also wanted to send you the resources we have on Hemiplegic migraine: https://migraine.com/search?s=hemiplegic%20 and direct you to this article specifically: https://migraine.com/migraine-types/hemiplegic-migraine. My understanding of this condition is that it does not involve having a TIA stroke. However, the symptoms are so similar to stroke that you must take great care to know your exact symptoms in case you experience any variation in your presentation of symptoms to pursue care immediately as time is of the essence.
Again, working with a migraine specialist to create a careful plan of action for care and treatment is especially important for this type of migraine.
Lastly, regarding Ajovy, thankfully there are so many different types of preventative and rescue options available these days. You didn't mention whether or not it actually helped you - as the side effect of hair loss was unacceptable. But if it was helpful, there are other options within the same treatment family as Ajovy that may be worth auditioning. Here's a link to the current preventative options that you might familiarize yourself with prior to your appointment with the migraine specialist: https://migraine.com/migraine-treatment/preventive.
I hope this information may prove helpful for you. We are here to provide information and support anytime. Warmly - Holly (team member)
