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Dealing with CH in Omaha, NE (Read 862 times)
stg1
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Dealing with CH in Omaha, NE
Nov 12th, 2017 at 8:42pm
 
I’m still reading through the many comments and advice etc. posted on the boards and so some of the answers I’m seeking may already be here and I just need to find them. However dealing with runaway chronic CH I wanted to go ahead and ask anyway. I’ve been in remission for over 4 years and all previous cycles were once a day or once a week which I could easily deal with using Sumatriptan. I also discovered oxygen near the end of my last cycle and was able to abort after only 5 - 10 min at 7 LPM.
After 4 1/2 years without a single episode I mistakenly assumed I was home free and was absolutely shocked when they resumed as chronic episodes of up to 10 or more a day. I’ve been pouring over the information on o2 and have an unlimited supply and now use a flow meter at 25 lpm and I’m using the specially designed O2 ch non-rebreather mask to great success. The problem is the frequency as most come at night. Using the hyperventilating technique I’m able to abort in usually about 10 minutes but the problem is being woken up every hour or so throughout the night.

I have a good supply of Sumatriptan and multiple o2 bottles both e & c sizes but I’m burning through them. I’m going to start on d3 and was interested in the reports that Melatonin helped. My concern is being so sound asleep that I only wake once the pain is too severe to abort with O2. On the other hand I desperately need to get some sleep. The few times I’ve had to use Sumatriptan at night I found I was able to sleep fairly soundly for a few hours before another attack.

About 2 weeks ago my doc started me on verapamil which I think is helping to tame the beast at least some. I’ve been in Omaha for the past 10 years and wanted to ask what are the best doctors here that are most familiar with CH and what prophylactic meds others have taken that have helped with chronic CH. I’m seeing a neurologist next week with the Nebraska Medical System but have no idea how familiar they may be with this.

Any suggestions as to doctors, meds, vitamins, etc. available in the Omaha area that has helped others with chronic ch would be very welcome. At this point any and all suggestions would be greatly appreciated. With my episodes coming so fast and so frequently I’m almost getting a bit freaked out about going anywhere other than work or home. I’ve seen several post from individuals who have dealt with chronic CH for many years and I would be very interested in how to cope with this.

My thoughts and prayers go out to everyone who is also fighting this.
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Mike NZ
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Oxygen rocks! D3 too!


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Re: Dealing with CH in Omaha, NE
Reply #1 - Nov 13th, 2017 at 12:53am
 
Hi and welcome

There is a huge amount to read here, with knowledge gained from years of experience of CH. So read up but also ask any questions you have.

Oxygen is pretty amazing at how well it can kill off CHs. Have you read our oxygen info page (clusterheadaches.com/o2.html)?

7 lpm is a pretty low flow rate so jumping to 25 lpm should be much more effective. However as you say, when they wake you at night they are already well developed and so are harder to kill.

Having 10 CHs a day must be pretty tough to deal with. But you seem to have abortives to hand, so at least you're not having to ride them out, which is no fun at all.

For sleep, some people have found that sleeping partially sat up can help, but experiment to see what works for you.

For verapamil, 360-480mg a day is effective for many people, but others go to 1000mg a day. When changing dose it takes 7-10 days before the dose change is effective, so don't change too rapidly. Also ask about getting ECGs as it can impact the PR interval on the ECG. Some people do better on the instant release verapamil, others on the sustained, so again experiment to see what works for you.

For seeing doctors, most aren't too clued up about CH, even most neurologists. So ask to see a headache specialist and make sure they have experience with CH.

Do read up about how many of us are using vitamin D3 to great effect. It has helped over 80% of people using it, with many going multiple years CH pain free (approaching 6 for me).

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Something else that can help is chugging an energy drink if you've nothing else to hand as they can reduce the intensity / duration of a CH, look for ones with taurine and caffeine (Red Bull, Monster, etc.). But don't try it for 10 CHs a day!

With getting out and about, it is all about planning. When I was in cycle I'd have my CH kit near to hand with supplies including sumatriptan injections, Red Bull and a small O2 cylinder / mask / regulator. I got in the habit of making sure it was close by and I'd options for where to go to get a bit of privacy (not easy trying to use O2 when trying to explain that you're OK).

But what will really make the most difference is when you've got an effective CH preventive and you're getting a lot less CHs. That combined with effective abortive(s) is a game changer.

Keep reading and you'll learn. Plus tell us more about how you do stuff and we might learn something too.
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AussieBrian
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Re: Dealing with CH in Omaha, NE
Reply #2 - Nov 13th, 2017 at 2:32am
 
Ten hits in a night can be devastating, Stg, but as sumatripan seems to be giving you some respite you might consider sumatripan pills as a possible preventive.  They're mostly not used in CH because they are quite slow to kick in but they do last for quite a long time.

Naturally you'd only do it in consultation with your doctor, and you'd also have to balance it out against any sumatripan shots you might want to use, but it's an idea I thought I'd pass on.

As an aside there's also some "cluster-like" headache syndromes which can result in 10-20 hits a day (oh, the joy of multiple headache types) and that might be worth consideration, too.

Please let us know how you're getting on.

We care.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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