Recently diagnosed with Hemiplegic Migraine
After several ER visits and many more neurology visits, I have been formally diagnosed with Hemiplegic Migraine. I am a 47 year-old female and haven't had any migraine in the past so this is all new for me. I have tried several treatments including: Verapamil, occipital nerve block, Topamax.
The topamax was a nightmare and I was on/off that medication very quickly due to the side effects. Verapmil was deemed not effective. We are seeing some mild results from the occipital nerve block. The next step is a CRGP shot (?) - I believe it is called Erenumab.
I am curious if anyone here is familiar with or has this type of mirgraine and may have experience with different treatments?
In addition, I am traveling for two weeks over the holiday to a warm weather destination (booked long before this all happened) and wondering if anyone has tips for traveling, specifically when dealing with hot temperatures which seem to be a trigger.
I have done quite a bit of research and seem to struggle to find anyone familiar with this specific type of migraine (Hemiplegic Migraine) so fingers crossed I will find someone here.
Thank you in advance!
Hi there,
- Thank you so much for reaching out. We are so glad you're with us as you face this new diagnosis. Luckily, we do have a lot of information and resources on Hemiplegic Migraine. This link should take you to our entire list of resources on the topic which should be a good place to start: https://migraine.com/search?s=hemiplegic. If, for whatever reason, this link doesn't work- just go up to our search bar (top left) and enter "hemiplegic". Then just skim through the options and choose what piques your interest. There's good information about people's real world experiences and trials with various treatments.
As to the question about the CGRP you mentioned - the brand name of which is Aimovig- we have a lot of information on that as well. There are MANY types of CGRP options out there- this is one of many. Still, keep in mind if it doesn't work for you- there are other choices out there. Here's an article on community feedback on Aimovig: https://migraine.com/living-migraine/aimovig-experiences.
Topamax is often called "dopamax" on this site due to the many side effects that accompany its use. Weight loss, challenges with finding the right words and feeling like swimming in a brain fog- are all reported often. Still, despite that, it works well for some. We are all so different in what works and what doesn't. Glad you got off of it as it sounds like it was causing issues.
Lastly, since you're looking at traveling soon- we also have resources on that which will hopefully help you: https://migraine.com/search?s=traveling%20migraine. Again, if this link doesn't work, just go to our search bar and enter 'traveling migraine'.
This piece may also be of interest: https://migraine.com/forums/hemiplegic-migraine-crgp-botox. Have you considered botox?
Our site is comprised of people living with migraine- and most of our articles are written from that perspective. We are here to provide support and information any time - so please don't hesitate to reach out with questions.
We are in this with you and here for you. Look forward to hearing more from you. Warmly- Holly -migraine.com team
Hey there
- Welcome to the community! I see that Holly has already given you lots of valuable information. I just wanted to add to this, and offer some resources on temperature regulation. This is something many people living with migraine struggle with, and I encourage you to check out this article here: https://migraine.com/living-migraine/body-temperature-regulation. We also have some tips for cold therapy here: https://migraine.com/forums/ice-vs-heat-which-team-are-you-on. I wonder if it would be possible to pack ice packs or a migraine/headache hat to keep in the fridge on your trip.
Wishing you well, and please don't hesitate to reach out if you have any questions 😀. We are here to help! - Cody (Team Member)Thank you so much for this information! So helpful. THANk YOU. - Thank you for letting us know that this information may be helpful to you. We threw a lot of resources your way so please don't hesitate to reach out for clarification or follow-up questions. We are here for you and so glad you are with us! Warmly- Holly -migraine.com team
