Debating canceling a vacation due to migraine fears

I would go too. No doubting it will be tough and there will be times you feel horrific, but there will be great times too, and as someone else said, the memories of those will last a lifetime. For me moments like this help me keep my mental health intact. Sometimes the good times are all the better for knowing how bad the bad times can be, if you know what I mean.

Loving the idea of getting to know the medical staff on board and I expect they'd be very sympathetic if you needed to crash in one of their beds now and then. Get a note from your neuro explaining your migs and take lots of rescue meds. Pick a couple of the day trips that seem more doable and/or are for places you REALLY want to see. There's no predicting how your head will behave, so go with the flow and don't feel bad if things get too much and you miss lots of activities.

I really hope your sister is sympathetic and will make things easy for you to do what you need. And if she doesn't quite get it perhaps spending this time together might just make it hit home? It's a really difficult situation though and I wish you the best of luck in whatever you decide to do.

Take care

Amy

Oh, forgot to mention one of my migraine mantras! It's similar to what Estre said :-

"I can stay at home and be in pain or I can go out and be in pain"
(whilst creating memories, distracting myself, keeping sane and building/maintaining friendships)

If you have to leave with all these fears and doubts, don't do it.
It's a vacation and a good vacation starts from that thrilling and exciting state of mind that begins days before the departure.
If you are thinking only about the negative things that will happen, you are not going to enjoy the positive things.

In October I was in a safari. I was so EXCITED to do it that I had not even taken into consideration my migraines. While I was there, in 11 days, I had migraine any 2 days and had to deal it on a jeep, on a bus, while climbing a hill and in a tent....I enjoyed my safari anyway and had LOTS of fun

However, I am sure that if I had done that safari with the fear of migraine I would have hated any minute of it....

Take care

The problem is, I can sometimes keep my migraines at a low frequency (and by that I mean being in pain 45% of the time instead of 85%) but that is by careful juggling of many different aspects of my life. I know that when I screw up one of those aspects I get a migraine, and if I can't get myself comfortable quickly that it will progress into a BEAST of a migraine, that usually leaves me sobbing in bed for 3 days and that no medication I've found to date touches. Opiates can reduce some of the out of control emotional state but they don't really take away the pain all that effectively. Triptans just kind of push the pain off for a little while, but it comes back with a vengeance. Midrin knocks me out, but I just wake up later with the migraine.

I guess I don't understand why I'd fly across an ocean to go on a vacation where I can't do the day trips, if that makes sense. I mean why go through all the turmoil just to end up bed ridden in a boat in Spain, without actually getting to see Spain? Maybe that is just horribly pessissmistic of me, but I think it's a valid line of though.

How often do they come? Sorry head bad cant re read whole thread.
Mine used to be every 5/8 days and clear in between.
I would have gone.
Now every 3/4 days and not clear in between.
Stay home.....
Yes I hurt either way, but too much pain to function.

Have you tried stadol as a rescue med? It's an excellent as a rescue med for vacations. If you do want to try going on this vacation, you should talk to your dr. about getting a script for a couple of vials (2 weeks cruise, right?).
But it kind of sounds like you are trying to talk yourself out of going, like you are really convincing yourself it would be better if you didn't go. If that's the case, you should sit down with your sis as soon as possible and just tell her your concerns, and why you can't go, and how you feel about it. The sooner the better, so she doesn't get upset or angry and can ask someone else to go. That would be best, and that way you don't feel bad about leaving her stuck with a paid trip going to waste.

Good luck.

I have not tried Stadol as a rescue med. Stadol is basically intranasal morphine, right? My doc is very against prescribing opiods for migraine - not sure if she'll go for the idea. I'll bring it up though.

I'm getting resentful that people are suggesting that I don't want to go. Of course I want to go on a free trip to Europe with my family. I am, however, TERRIFIED of turning a somewhat manageable migraine situation back into a chronic, every day migraine situation. I feel like the tipping point isn't that far off, and a few really bad migraines in a row could do it. Already due to the stress of going through my doctoral qualifying exam right now I am losing control of my migraine frequency and that scares me.

When you have a migraine, your brain is favoring a certain neural circuitry that results in migraine. Our brains inexplicably rewire themselves into that circuitry because for some reason they prefer it, which is why many medications work initially and then fail for people. The real goal of migraine therapy is to prevent your brain from entering into that neural circuit because every time it does, it is more likely to enter it again. This is why episodic migraines turn chronic. This is why prevention is SO important.

I don't think I'm making excuses in fearing that the vacation can push me over the edge. After a lot of hard work and sacrifice, I finally broke the pattern of daily migraine (wherein I was having a migraine every single moment of every single day for 1.5 years straight). I am not keen on going back to that place, and in general almost all of my life decisions are at their core a way to prevent going back to that place. I was close to dropping out of my PhD program and going on disability. Not to mention losing any semblance of a marriage. I've worked way too hard in my life and career for me to go back there and the fear and reality of shaking things up is poignant.

jwar, you did start the post asking for opinions, so I think it's fair that people are giving you honest ones.

I had a really tough time deciding to go on my last trip. I went to mexico in feb, and oddly, I had no migraines while I was there. I'm like you....I live a very, very planned life in order to avoid the migraines that debilitate me once they grab hold.

I think only you can decide if it is worth the risk.

I made my choice, and ended up having a really great time...and was freakishly free of headpain the whole time......despite enjoying many, many drinks in the hot sun which is a sure-fire migraine inducer normally.

I hope you go.

Like Milo above, I have done things that I would think would cause a migraine at a 100% chance and have not. Don't get your hopes up (which doesn't seem like you are doing) that you are going to be migraine free. Go on the trip with the expectation that you will probably have them and will deal with them as they come even if that is staying in bed. Relax. You may just be migraine free.

Jayme,

On the other hand, I went on a trip to the Rose Bowl parade and ended up barfing behind the bleachers. Back then the only relief was a shot of Demerol from the hospital. Once the barfing spell was over, I started to feel better, but the pain was extremely intense for awhile. However, I would not trade the trip for anything. I would have had the M anyway and I have never been able to go to the Rose Bowl parade again. It was an awsome experience.

Hal

I am suprised to read that you are getting ticked off. what I responded to was this part of your message:

It's not so much the fear of the migraine (I mean, I know I will get at least 1 migraine), it's not being able to be comfortable while I'm in pain.

But your 3rd message has brought in a whole different perspective that was never mentioned.

I second what Milo said. You started this thread asking for honest opinions, and we've given you honest opinions and observations. It doesn't sound as if you really want them, though.

We all understand what migraines are, and we all suffer from them. That's why we're all here, right? I think we all understand what migraine therapy is, too. We deal with it every day.

Yes, stadol is intranasal, and its a narcotic based drug. That's why its a rescue drug, not a daily use drug. That's also why I mention it only for an extreme case, like a vacation, since you aren't on it currently. Paradox said she is taking it with her for her son's wedding, and she doesn't normally take it, and Dailyha-Rose said she recently took it with her on a vacation and it worked well for her. My nuero prescribes extra vials for me when I go on vacation - the last big vacation I took was to London he prescribed extra for me to take with me.
But of course, everyone is different, and must follow their own dr's advice. I just mention it as something that seems to work well in the added-stress/added-trigger environment of a vacation.

That's the last I'm going to post on the topic. I've tried to be helpful because I've found myself in very similar situations to yours and felt for you in the situation you're in. I offered advice from the heart, and don't really feel like getting slapped down for it.

Good luck whatever you decide.

Jayme,

Just read your comments on the PhD. My hat is off to you. I had missed that part of your comment. You are a real tiger going after that degree and putting up with migraines. I finally had to go on SSDI after having a couple of years of solid migraine pain and some other health problems, but I am 63 and real retirement is not far off. Now I understand your hesitation. If it were me, I would go anyway. However, only you know what you can put up with and how the M affects your goals that you have worked so hard to attain. The trip would be nice, but the PhD and your marriage is more important and that might change my mind. Keep us informed on completing your degree.

Hal

for me the stress of the trip would not be the travelling, it would be the fact that i would be joining someone elses trip and havin to fit in with them, and do what is best for the group rather than what i need to do to remain pain free, i find trips away from home when it is just my husband and my kids is ok, trips away from home when i am in a group and have to go with the flow are incredidably stressful these days, and quite simply not worth the hassle, even the closet of friends get cheesed off with having to eat at a certain time, avoid the light/noise/ smells or activity, cut short the day trip avoid the night time entertainment etc etc etc, particulary when you are young, maybe as you reach your later years people are more accomadating, as usually we all have some sort of health complaint when you are 70 but when you are in your 20s and 30s and are on holiday with friends, there is an expectation of what the holiday will be like,

i do think you have to look after yourself and do what you want, it is not your fault your sister has a spare ticket, and only you have to put up with the constant pain of never ending migraines.

Theresae has a good point. If you decide to go (which I hope you do), have a talk with your sister so she understands ahead of time that you may be left out of some of the activities. Maybe it will just be enough that you are there. It is a shame that we waste our time with worrying about the next migraine when we should be appreciating every minute we are pain free.

Re: Debating canceling a vacation due to migraine fears
jwar Today at 6:50 pm



When you have a migraine, your brain is favoring a certain neural circuitry that results in migraine. Our brains inexplicably rewire themselves into that circuitry because for some reason they prefer it, which is why many medications work initially and then fail for people. The real goal of migraine therapy is to prevent your brain from entering into that neural circuit because every time it does, it is more likely to enter it again. This is why episodic migraines turn chronic. This is why prevention is SO important



that is an excellent way of explaining why migraine so often turns chronic, i have heard of this theory b4, it sounds so simple you would of thought they ( medical profession)would of developed something by now to re wire your brain, or have they and i have just missed it!

Sounds like there could be something to that Theresae. Regardless, I think it is imperative that we prevent as many as possible. I can't imagine that that kind of pain isn't doing damage. I believe that most drugs (if taken properly) have to be safer than enduring migraines.

Theresae,

I appreciate the compliment on the explanation. I am a biomedical researcher. I currently work in the gene therapy field and I would love to translate that into some sort of cure for migraines. The reason it's being held up is because in reality, science just doesn't know what's going on. If we could pinpoint an early step in the neural circuit, we could work on real therapies. As of right now, the medical profession has no real clue of how/where to step in. This is why the MOST important thing to everyone that suffers is that the government increases funding to labs studying migraine. Doctors can speculate about things all the want, but until lots of scientists can get funded to research the condition progress will be inherently slow.

AuntieBubbs,

Of course we all suffer from migraines and understand therapy. But considering that even the medical profession doesn't REALLY understand therapy I am completely and 100% justified in making the statements I made above. Furthermore, what I am getting resentful of is people insinuating that I deep down don't want to go on the vacation for reasons other than plunging my current migraine status into one of chronicity. Sorry if you feel offended by that, but I think you're misintrepreting things.

jwar wrote:Theresae,

I appreciate the compliment on the explanation. I am a biomedical researcher. I currently work in the gene therapy field and I would love to translate that into some sort of cure for migraines. The reason it's being held up is because in reality, science just doesn't know what's going on. If we could pinpoint an early step in the neural circuit, we could work on real therapies. As of right now, the medical profession has no real clue of how/where to step in. This is why the MOST important thing to everyone that suffers is that the government increases funding to labs studying migraine. Doctors can speculate about things all the want, but until lots of scientists can get funded to research the condition progress will be inherently slow.

AuntieBubbs,

Of course we all suffer from migraines and understand therapy. But considering that even the medical profession doesn't REALLY understand therapy I am completely and 100% justified in making the statements I made above. Furthermore, what I am getting resentful of is people insinuating that I deep down don't want to go on the vacation for reasons other than plunging my current migraine status into one of chronicity. Sorry if you feel offended by that, but I think you're misintrepreting things.

I think you are using the wrong word by saying resentful. You shouldn't be resenting us for giving you the opinions you asked of us, especially when you are being very clear that the vacation is going to be extremely difficult for you. We are supporting you by saying if you think you cannot go, don't go. Nobody on this board is trying to beat you down but if you all wanted us to turn around and give a unified answer why didn't you just post, "Please support me and give me well wishes for my upcoming vacation," or "Please help me tell my sister I cannot make the free vacation she has offered me". Every time we say "Go and have a great time!" you reply back with another reason why you can't. Instead of responding that way, maybe you can ask for suggestions on how to manage certain situations on vacation instead of shooting us down.

As far as stadol goes, I take it as my last resort rescue medication along with fioricet with codeine. Fioricet is my primary rescue as I am triptan resistant. Stadol is not morphine but it is an opioid. It's medical name is Butorphanol. One spray (which is the dosage you would be administering to yourself) is equivilent to 5mgs of morphine. Also, most narcotic drugs are converted to morphine once they pass through your receptors anyway so really, I would not concern yourself with this. I would concern yourself with relief. It sounds like you aren't getting enough because as you describe it, a lot of your life is suffering because you are. My main priority would be fixing that because everything else will follow, even if it means finding another doctor or finding another treatment. Don't give up.

Lovegia, I have every right to express resentment if someone is suggesting that I am masking my reasons for not wanting to go on the trip by using migraine as an excuse (something I would not have expected from anyone on this board). Furthermore, I am not shooting anyone down, but rather my responses further explain the situation, since I realize I did not give enough information in my original post, as people made many incorrect assumptions from that post. My adding clarification should not lead to someone else feeling slapped down.

Thanks for the pep talk about pain management, but I really am managing just fine. As I have said repeatedly in this post, through a lot of hard work I have figured out how to manage the pain so that I can live a relatively normal life. The entire point of this post is that I do not want to shake that up right now, which is why the vacation makes me hesitant.

Now please for the love of god, let the post die.

I really do apologize, jwar. I read your post above all wrong. I thought it read that you were still having migraines frequently. Sorry for the misunderstanding regarding that nature. I wish you well and hope you whatever you choose to do, it turns out well. Best wishes to you.

lovegia wrote:I really do apologize, jwar. I read your post above all wrong. I thought it read that you were still having migraines frequently. Sorry for the misunderstanding regarding that nature. I wish you well and hope you whatever you choose to do, it turns out well. Best wishes to you.

Your so sweet LG.
I love it!