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AnitaJ

Episodic to Chronic - advice

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Have flown multiple times with epi-pen and zomig ns (I swear it looks like a bullet!) with nary a question. I'd bring the script along just to be sure. I have been stopped several times...once for an O2 regulator and mask...the other time for a can of salmon!?

Best

Jon

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Thanks everyone! Jon019, salmon, really? :P

Things are progressing. My husband had a sphenopalatine ganglion nerve block on Friday, and he's only had one minor CH instance since then. He's also gone on Depakote and upped his Vitamin D intake. Seeing his neurologist at least once a week, and scheduled for a ketamine infusion in July.

It's a really low time for him, and I'm doing my best to keep our hopes up. We have to figure this out and learn how to keep going.

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Anita....sounds like ya got a plan...we love hearing that!

Re salmon...I like my Omega 3s a bit more natural so I travel with canned salmon. Admittedly a bit odd. It was the Reno airport...and they kept calling agents over to look....eventually 4 screeners and a supervisor. It was hilarious but I couldn't laugh... because then they would know I'm as crazy as I look. They grilled me good until I finally said..."ok...get a can opener and I'll eat it right now!" That worked and they let me go.............................btw Icy Point brand by Ocean Beauty Sfds...excellent quality and a good price...I get it at Bartell's.

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Hello, first time posting anywhere... I'm experiencing a cluster that is lasting longer than normal with few signs of abating. My clusters usually last about 10 weeks. I treat them with heavy doses of verapamil, O2 and naratriptan. I usually take the naratriptan an hour before my usual hit, which changes gradually throughout the cluster, but now I am taking it twice a day, 12 hours a part. I've been having clusters for 17 years, and this one is now going on 12 weeks... 

Is this a bad year for clusters for anybody else? I do not know if I'm going chronic; I do have some fears about it, but I cannot predict the future and don't try to. It doesn't really matter, I guess, because I would treat things the same way anyway. I take it one headache at a time and enjoy the times in between... I'm looking forward to this cluster being over because I have a backpack trip planned for September. 

 

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Hi JimG,

Sounds like 17 years in, your CH had a pretty established pattern of behavior.

The weird thing is, it turns out it's common to be hit with a pattern shift you never would have expected, even after umpteen years of predictability. One of the most common shifts is the lengthening cycles BTW, so It's probably not worth worrying about chronic for another few months at least.

Lotsa headbangers are convinced the usage of triptans can cause cycles to lengthen. I've been episodic for going on 37 years, so I had 12 years or so of CH joy before triptans hit the market in the US, and what I found was my cycles kept lengthening and lengthening before I ever tried a triptan. I had been on some heavy cocktails of other prescriptions though.

Here's hoping you'll be 12-ish weeks and done this time, with a sudden cessation, or at least you'll see it tapering off soon, which I figure is a likely scenario. I'll officially place a bet on that right now. :)

 

 

 

 

 

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Hi, all--just wanted to say thanks and give an update.

Husband has had 2 sphenopalatine ganglion nerve blocks, which gave him some relief for a couple of days. Last time the doc coupled it with (I think?) something like the gammaCore treatment, but I'm really not certain about that. He did say that it may get a little worse before it gets better, and that appears to be the case this week. Frequency of headaches has decreased but intensity of pain has increased.

We are still scheduled for the ketamine infusion in two weeks, and in the meantime we have triptan shots and pills. I also bought one of the Cluster O2 kits and am urging him to continue to try the oxygen. Hard to convince him when he feels a cluster coming on and can't think about anything but pain...but I'm trying.

We're flying this weekend and are hoping that the injections don't get stopped by TSA--but everything you've told me here makes me optimistic!

Your hope keeps me going. :) Thank you!

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Thank you for the update, Anita'.  I'm sure I'm not the only one who wonders how things are going with you two.

I suppose it could have been GammaCore that he got.  That's a hand-held device that is used on the vagus nerve, at the neck.  There were some clinical results that GammaCore had some effectiveness as a preventive, though it's mainly an abortive (something I guess he might be able to try instead of the oxygen, if he keeps resisting the O2), so I'm not sure what one use of it would have done for him, or would have been expected to have done for him.

Wishing you the best.

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Sumatriptan should not be refused, because it's a medication.

You're supposed to carry ALL medications on your carry-on, from what I recall from the TSA... So it doesn't matter what it is. You keep it with you. I kept my epi-pens on me, and they're liquid injections in a tube that you jab in to your leg... though they had to separate those and scan them separately. (They were kind of like "WTF??") It's been a few years since I flew though... I always drank an energy drink beforehand!

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Thanks so much, everyone! Today's the big day--flying with meds and CH. :) Will let you know how it goes. I appreciate all the support.

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Well, flying with meds was not a problem--surprisingly! And his 5 day steroid infusion gave us 5 great low-pain days. But now it's back and worse than ever. Not entirely sure what to do. We're at the hospital right now. Not to mention, the nurse is snotty with a bad attitude and of course, doesn't believe what we're telling her. ("He uses a nonrebreather mask? ..REALLY?" Do you think I am lying to you?!?!?!)

I will get into all the info about busting as soon as I can, since that seems to be where we're headed. It's just so hard to get anything done other than the minimum of survival when we're in this war zone.

Thanks for the support.

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Ugh. Sorry to hear this about your CH'er Anita. 

I'm aware of rare instances where a pred burst has knocked a cycle out, but all too often following some days of relief from a burst, the CH comes back with a vengeance, something I've personally experienced and seen many others also report.

Hoping you both can escape the war zone ASAP and find some peace.

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