What to expect: First trip to Mayo for Chonic Daily Migraine

Posted by mandydawn @mandydawn, Apr 13, 2019

Hello! I just set up my first trip to Mayo in AZ for chronic daily migraines. I’ve read all the literature I can find on what to expect but am not finding much info on what sort of tests they could possibly want to run on me? I know who my initial appointment will be with but other than that have no clue what they could do with me for 5 whole days. I’ll unfortunately be going alone so knowing a little more about what to expect would be helpful. Thanks in advance!

Hi @mandydawn and welcome to Connect! That's great that you are able to get some help for your chronic migraines. Have you tried to reach out to the unit at the hospital? They may be able to give you an idea of the different tests you will be having to start out.

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That initial appointment is very important. You need to be very specific about all your symptoms. After listening to you and asking you questions. That will help them decide what testing and what kind of doctors you may need to see. That’s where the possible 5 days come into play. All the appointments they may want to schedule can’t be all done on one day. Depending on your results from each doctor and/or tests, that will determine the number of days. A particular test result may suggest you need further testing. Conversely it may also be that they find your answer in fewer days.
I know that sounds like a lot of time but, thoroughness requires just that. I’ve been there done that many times at Mayo.
Hopefully this makes sense. Ask any further questions if you need or want. This is the right place to be. Best to you.

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I haven’t yet, mostly because I can’t seem to find an email? Just a phone number. My appointment was just made Friday so maybe I need to be patient and wait for them to mail me my itinerary. I have no idea how long that will take them to assemble and it’s just a month away. I understand that for many folks they have no idea what all their appointments will be until the first day. I’m hoping to find someone who has gone in for chronic migraines specifically who might be able to share a bit of what their experience was Ike specifically. I’m a bit worried about the potential reactions to possible procedures such as nerve blocks when I’m on my own. I’m hyper sensitive to meds of all sorts so a bit nervous. My husband can’t get away from farming this time of year, so I’m trying to decide if I need to drag a friend along, or if that’s just being overly cautious. It would help to know if they’ll mostly be doing scans…or….what? I just don’t know what to expect at all.

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I’m also wondering how often Mayo Arizona has chronic migraine patients come in who they decide to put into inpatient programs for a week of iv medications. When looking around at various headache clinics I see that is an option manynof them provide. I know Mayo has the ability, but wonder how often they choose to go that route.

Can you tell I’m not used to making a trip without having every minute planned out ahead of time? LOL. Drives me bonkers…

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I have severe head pain for which I get three nerve blocks every three months. You will want someone with you because you can’t drive after the blocks.
I also go alone to get these done. So, because I live 230 miles from Mayo in MN I always make a reservation at a local hotel to stay that night. Next day I’m fine and drive home.

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@mandydawn

I’m also wondering how often Mayo Arizona has chronic migraine patients come in who they decide to put into inpatient programs for a week of iv medications. When looking around at various headache clinics I see that is an option manynof them provide. I know Mayo has the ability, but wonder how often they choose to go that route.

Can you tell I’m not used to making a trip without having every minute planned out ahead of time? LOL. Drives me bonkers…

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Unfortunately I don’t think anybody can answer your question until they see you.

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@bonnieh218

I have severe head pain for which I get three nerve blocks every three months. You will want someone with you because you can’t drive after the blocks.
I also go alone to get these done. So, because I live 230 miles from Mayo in MN I always make a reservation at a local hotel to stay that night. Next day I’m fine and drive home.

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That is very helpful, thank you! When you’ve had nerve blocks done are you able to navigate shuttles back to your hotel on your own? Nerve blocks are one procedure I’m very interested in that my local nuerologist does not provide. I plan to stay at the hotel that is right in Mayo’s Scottsdale AZ campus. I don’t know how to drive in cities (Montana girl) so I’ll be relying on Uber and shuttles for the whole trip.

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@mandydawn

That is very helpful, thank you! When you’ve had nerve blocks done are you able to navigate shuttles back to your hotel on your own? Nerve blocks are one procedure I’m very interested in that my local nuerologist does not provide. I plan to stay at the hotel that is right in Mayo’s Scottsdale AZ campus. I don’t know how to drive in cities (Montana girl) so I’ll be relying on Uber and shuttles for the whole trip.

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@mandydawn Welcome to Mayo Connect. I believe you have some solid answers here, just remember that everyone is different. That said, your concern about shuttles etc. is probably not a worry. The Mayo staff and support teams have a lot of experience under their belts, and when you let them know your apprehension, I bet they will be right there to help you out!
Ginger

Liked by lioness

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@mandydawn

That is very helpful, thank you! When you’ve had nerve blocks done are you able to navigate shuttles back to your hotel on your own? Nerve blocks are one procedure I’m very interested in that my local nuerologist does not provide. I plan to stay at the hotel that is right in Mayo’s Scottsdale AZ campus. I don’t know how to drive in cities (Montana girl) so I’ll be relying on Uber and shuttles for the whole trip.

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Yes I can navigate myself. After the nerve block they have you stay there for about 10 minutes so they can be sure you are alright.
I’ve been just a little light headed afterwards but am able to navigate just fine.
Mayo has an excellent service where they will actually get you to their shuttle area if you think you need help or if you just aren’t sure where it’s located. All you have to do is ask for an escort. Tell them which hotel you’re staying in. They will take you to the shuttle area where they have people working that the escort tells them where you need to go. They will let you know that hotels time schedule for their runs between the hotel and the clinic. Sometimes you will have a little wait. They always announce each bus arrival and where they are going to so you won’t miss it.

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