When it comes to travel, I've learned the hard way. Packing for migraine is a little like packing for a small child. Both are unpredictable, have unreasonable needs, and require way too much stuff.
This summer I'm planning to travel for the first time since being disabled by migraine. I have to be prepared for anything because I can't count on my head to always cooperate.
Back when I was still in denial about my disability, I would have tossed a few sets of clothes and some toiletries in an overnight bag and called it good. Forgetting to pack for migraine has always been a mistake. If I forget to consider the potential for attacks, it could spell disaster. It's been a long time since I've had to endure the full force of an untreated attack. I'd rather not do it ever again, if I can help it.
The first is a flight to Washington, DC for a weekend. Although I once worked for American Airlines, and used my free flight benefits a lot, it's been almost 14 years since I traveled by air. This will be my first experience with the new security measures and also flying with disabilities. It's only a 3-day trip. Yet those three days could be a nightmare if a nasty attack hits when I'm alone and unprepared. I really do have to be well-stocked.
I don't go anywhere overnight without my CPAP, so I have to make room for it in my suitcase.
Ice bags, hot packs, Tiger Balm, essential oils, and the rest of my toolkit must be packed, too.
Two medicines need refrigeration, so I will pack them in a soft-sided, insulated bag with single-use ice packs to transport in my carry-on bag.
One is an injection, so I have to make sure I declare it, too.
No airline will permit compressed oxygen on board the plane. I must make arrangements in advance to rent a tank once I arrive.
The second trip is a road trip to Colorado for a family reunion. My toolkit needs to be easily accessible during the ride. It's a 12 hour trip that could feel like an eternity if I'm not prepared. Plus, there are some items that are unique to this type of trip.
It would be a very long ride without them should my brain decide to misbehave.
For both trips, I also need to know there is a quiet place where I can retreat during an attack. I'm not worried about the DC trip as much as the one to Colorado. Convincing the in-laws is more of a challenge. They don't really understand migraine. Some haven't ever believed me and certainly don't know that I am officially disabled now. Luckily, my husband has been a wonderful advocate by insisting that a quiet room is available for me.
These are just a few of the extra preparations I make because of migraine.
What do you do to prepare for travel because of migraine?
I travel a lot, within the US and overseas. When I travel overseas I can count on migraines but I refuse to let them stop me. Aside from my daily migraine meds, I bring Imitrex and two boxes of the steroid regimen in case the worst happens. I carry bread everywhere. That is the one item I can count on when nausea hits. Of course gallons of water is vital. I have found that flight attendants on long flights do not mind my visits to the galley for bread, rolls, water or whatever. Yes, there are a lot of pills. My suitcase looks like a pharmacy. I have accepted migraines as part of who I am. Travel is tough but sitting around thinking about this disability is worse.
We're taking a cross country trip in our RV next month. I'm a little concerned, but have my migraine bag packed and ready to grab at a moment's notice, and it will definitely go in the RV with us. I will be visiting my doctor before the trip to get refills on the abortive meds I take. I don't take triptans, as I have a strong family history of sudden cardiac events (all my younger siblings are deceased due to heart attacks or CHF, although, as the eldest, I am just fine – I just got the visit from the migraine fairy instead). I have Phenergan and Hydrocodone to knock me out when the pain gets too bad. My neuro just put me back on Midrin, so we'll see how that works. I have had two rounds of Botox. It did cut my frequency down from 5-7 migraines per week (yes, nearly every day, with only a few hours respite between) to 2-4, but it significantly has increased the intensity of them. Anyway, as a lot of us migraineurs tend to do sometimes, I'm rambling. My point is, that we have to be so prepared if we are going to do any traveling. I'm more concerned as to whether I have everything I need with me for my migraines, than I am with packing enough clothing. I can always get more clothing while on the road. As we all know too well, getting the medication we need is not so easy.
I've traveled with injectable medications & syringes & needles on airplanes many times and at first I would make sure to tell the TSA, because I was worried they would think it was a weapon or something. But after a few times I noticed that the TSA agents I told never bothered to tell the X-ray scanner agent and I stopped mentioning it and it and they just went through X-ray and no one ever cared or searched my bag because of them.
Tammy, I know compressed oxygen (and liquid O2) is not allowed on planes, but portable oxygen concentrators ARE allowed. I don't know if that's anything you've looked into before, but it's something to consider if you ever need to fly again. The main drawback I can think of off the top of my head is that the concentrators might not deliver a high enough concentration or flow rate to be of use for you, but I thought I'd throw it out there, just in case.
Thank you for sharing your story. It resonates with so many of us!!