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Topic: travelling with CH (Read 997 times) |
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DocCissou
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travelling with CH
« on: Sep 13th, 2007, 8:48am » |
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Hi everyone, my boyfriend Stan has been suffering from chronical CH for 16 years, since he was 14 or 15 years old. He had a very bad time last summer (Aug 2006) - up to 16 crisis a day - but since then, he has been feeling better, with 4 to 6 crisis per day, and, since June 2007, only around 1 or 2 per day, sometimes even less, with whole painfree days.
We are getting ready to travel to New-Zealand (from France) in 2 weeks, and I am a little worried about the effect the 25 hours flight (London-Los Angeles, Los-Angeles-Auckland) may have on the frequency of his crisis. Also, as we will be staying in New-Zealand for several months, I am wondering if the total change in daily routine and lifestyle can also have a good or bad influence on his CH.
Has anyone on the board ever experienced such long flights or travelled abroad like we're planning to do? Did your CH improve ou worsen? Any tips or recommendations?
Thanks for helping me, I am starting to feel worried about the whole adventure, even if I know that now is the best time for him to travel.
Au revoir! Cecile
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Tom_Thumb
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Re: travelling with CH
« Reply #1 on: Sep 13th, 2007, 9:37pm » |
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Best wishes I hope he has enough meds or can get them . It could be good or bad . I had a attack Once in 1992 from a trip from usa to mexico 15 hour flight . But again I think it could be the time to have them again anyway . I would not worry about it because like myself out of thought out of mine. Good luck and have a great time.
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MJ
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Re: travelling with CH
« Reply #2 on: Sep 14th, 2007, 1:54am » |
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The change can do good. Stay stressed.
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MJ
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BarbaraD
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Re: travelling with CH
« Reply #3 on: Sep 14th, 2007, 6:01am » |
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I've done the flight from Dallas to Sydney all all over Australia and didn't have any problems. Long damn flight, but .... no more probs than a domestic flight -- if Mr. D's gonna hit - he's gonna hit -- just have some meds on hand and have a good time.
Hugs BD
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Bob_Johnson
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Re: travelling with CH
« Reply #4 on: Sep 15th, 2007, 8:19am » |
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I've never seen any medical literature which suggests that travel, major changes, etc. are triggers for Cluster headaches.
The more important consideration is his medications: having sufficient quantities, in a form which travel easily (pills being best in this regard), and a letter from the physician giving the diagnosis requiring the meds (for customs purposes).
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Bob Johnson
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I've only had an attack one time while flying (out of about a dozen fairly short flights). Not sure if flying had anything to do with it.
Always hope for the best while being prepared for the worst. Take plenty of medications (or other things) that'll help. Be prepared to battle the beast at anytime, anywhere.
Goodluck
UNsolved
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DocCissou
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Re: travelling with CH
« Reply #6 on: Feb 13th, 2008, 12:31am » |
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Hey guys,
sorry for not replying earlier to the people who answered my posts, I have been so busy with this trip, and internet connection is so bad here!
So, I'd like to thank you for your answers, and give you some news if you're interested in our experience with CH and traveling.
Stan was having 2-3 CH a day before we left in September, has stayed like that until December, and then, the beast hit more forcefully. He's been having between 5 and 8 a day for the last month, and takes imitrex injections everytime.
Now, in 2 months I have to leave (for my work) for a really isolated Polynesian island that doesn't have any medical facilities and stay there for 5 months. So, of course our big dilemma is should he go back to France before just in case it gets even worse or should he take life as it comes and try to discover this part of the world anyway?
I know nobody can decide for us, but well, I just thought I'd share this last development with you.
It is so hard never knowing if it will get worse or better, if we should take risks just so that he can do something else in his life than just staying in the couch and waiting for the next one, or if we should plan everything always expecting the worse...
Well, sorry for ranting, I guess I'm just upset at having to take this big decision, and you are the only people that would understand this kind of dilemma.
Big hugs to you all, from the country where kiwis roam free!
DocCissou
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artonio7
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Re: travelling with CH
« Reply #7 on: Feb 13th, 2008, 1:26am » |
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Go... and have a beautiful time ... He already knows what a ch is like in France...
chances are... they won't be much different on a isolated Polynesian island. Load up on the imitrex... and enjoy the moments ion between the hits.
just my two cents...
with warm regards,
Tony
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Bob_Johnson
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Re: travelling with CH
« Reply #8 on: Feb 13th, 2008, 8:44am » |
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Using an injection or pill form of abortive is the most convenient. I hope that he is using sumatriptan, injection for this reason. If not, use what little time you have before the trip to ask the doctor for a sample of this med. For many people it will abort an attack in 10-20 minutes and the pill form is much more desirable to use on a plane, etc.
---------
Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Bob Johnson
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turtlendog
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Re: travelling with CH
« Reply #9 on: Feb 16th, 2008, 11:02pm » |
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on Feb 13th, 2008, 12:31am, DocCissou wrote:| He's been having between 5 and 8 a day for the last month, and takes imitrex injections everytime. |
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It sounds to me like he needs 02 on hand so he won't have to use Imitrex constantly. That's just what I think.
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| « Last Edit: Feb 16th, 2008, 11:02pm by turtlendog » |
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playmesomeblues
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Re: travelling with CH
« Reply #10 on: Feb 18th, 2008, 12:59pm » |
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I'd agree with everyone who suggested loading up on meds. before traveling. Air travel acts as a trigger for me when I'm in a cycle. So does hot weather. I suspect changing time zones doesn't help either. But with the number of hits you get you can't take enough imitrex safely, so do follow up on the oxygen suggestion. If you have the time, you may be able to arrange for this on the ground at your destination. Though cumbersome, its relatively inexpensive.
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Kirk
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Re: travelling with CH
« Reply #11 on: Feb 18th, 2008, 3:42pm » |
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I found when traveling that 2.5 - 5 Mg of Olanzapine to be very effective.
Never let CH stop you from broadening your horizons. The Beast wins when you let that happen. Get up, get out, and get on with your life. Trust me on this one.
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DocCissou
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Re: travelling with CH
« Reply #12 on: Feb 20th, 2008, 9:58pm » |
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Hi guys
thank you so much for your answers and your support. It is so good to be able to speak with people that do understand.
After reading your last posts and talking about it with Stan, I was kind of convinced that we should indeed do everything to live our lives without letting the beast win, and I was ready to let him come with me to Tonga, although knowing the place, I knew it would be really hard for him to live there.
But these last few days, he has been getting worse and worse. He must have reached 10 CH a day, and he is making an injection of Imitrex everytime, but it is starting to be inefficient. This morning was really hard.
He is so tired that he can't go out anymore.
In 3 weeks, I have to go back to France for a whole months for some exams, and he wanted to stay here and wait for me, before going to Tonga. But I don't think it is safe to leave him here for a whole month, knowing that he doesn't speak enough English, and then go to an island where he wouldn't even be able to get O2, and that is so hard to reach that you need to be quite energic - not speaking about the really poor conditions of life and about the risk of running out of medication.....
it breaks my heart, and his also, but we have decided that he will fly back with me to France in 3 weeks (I hope he can withstand the trip) and maybe go straight to the hospital, because with so many Imitrex injections, his heart has to be under monitoring, and he needs O2 and maybe some cortisone injections in the nerve (it has worked in the past).
But because we are stubborn people, and because I believe that we have to enjoy life as much as we can, I will save money so that when he gets better, he can join me in Tonga. This way it's not as if we surrendered completely to the beast.... I hope.
Thansk for reading me, and thanks for being there. I wish you all painfree days.
Cecile.
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mudplugga
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Re: travelling with CH
« Reply #13 on: Mar 10th, 2008, 8:02pm » |
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Over the last 30 years I've traveled from the UK to the USA and Canada, both coasts, north and south, while either chronic or periodic and the ch was exactly the same wherever I was! 
I've suffered on a plane, in blizzards and deserts, nothing changed.
The only thing I do notice is that my regular ch times shift to local time, and I can't figure that out at all?
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