First post here

[Awitcher656]

Hey guys, this is my first post here and I just wanted to say hello. I started a new cycle on September 4th. This is my fourth time through it. First one started in 2009 When I was 21. I Was diagnosed with CH maybe 4 years ago by my GP who recognized it right away. They come every other day, always at night although each cycle is a little different. Earliest was on Thursday it came at 7 pm. Those are not as bad as the sleeping ones. Last night was the worst. It started around 3, but I feel back sleep, woke up at 5:30 and it felt like my brain was bleeding. They have always been about 45 minutes to an hour, but the last few were closer to two hours and they are getting more intense. Shadow lasts most of the next day, and then the day after a have a lot of tingling during the day before the attack comes on in the evening.

It was cool to see a community of people that deal with the same thing that I do. Most people I know really don't get it at all. It's impossible to explain, people get this weird look on their face when u try to talk to them about it. I think I'm one of the lucky ones though. Sounds like a lot of you have it worse than me. 

I haven't seen my doctor yet, but in the past I have taken verapamil and that worked pretty well. I Took imitrex once. Never again, it was awful. I've never seen a neurologist and haven't had any brain scans done. I have also been diagnosed with severe depression, generalized anxiety, social anxiety disorder, and ADHD, as well as potential Central Auditory Processing Disorder. I took some tests a while back which showed severely impaired short term memory. All that it is to say, does anyone else have similar things a long with CH, and should a see a neurologist or just continue with my GP? I gave up on therapy because they were too patronizing.

Sorry that was kind of long winded. Come say hello, and thanks for listening.

[CHfather]

49 minutes ago, Awitcher656 said:

should a see a neurologist or just continue with my GP?

What you want from a doctor are (a) assurance that you don't have any condition that would show up on an MRI (CH doesn't), and (b) prescriptions.  The most important prescription you can get is for OXYGEN -- the most effective abortive there is. Most GPs know too little, and are often too lazy to learn more, so they almost never prescribe oxygen.  It is more likely, but still not very likely, that a neurologist will prescribe O2.  Your best bet overall is a headache center.  Whatever type of doctor you see, you should go fully prepared to show them why you want oxygen and why you are insisting on it.  We can help you with that, so let us know.  Verapamil should be monitored when it is first taken.  For some people, the required dosage of verap during a cycle can be 960mg/day.  The NON timed-release kind seems to work better.

Two things you can do now. (1) Read in the ClusterBuster Files section of this board, particularly about the vitamin D3 regimen, which you should probably start right away (I don't know about possible interactions with meds you might be taking for your other conditions, or with those conditions themselves), and about possible triggers.  Busting (the subject of the files with numbers) might not be right for you.  (2) Maybe try an energy shot (such as 5-Hour Energy), or even just a strong caffeine drink, at the first sign of an attack (if caffeine is okay for you).  This can sometimes stop an attack, or lessen its severity.  Others might suggest other things.

 

[Awitcher656]

Thanks for the info. I'm not currently taking any medications for anything. Was on ridalin for a week or two but it was useless so I discontinued. And depression anxiety medications I took in the past came with so many side affects they weren't worth the trouble so I discontinued those as well. 

I have heard that caffeine can work, but since my headaches are always at night and I work in the morning I am wary of doing that. Right now I usually pass out after the cluster is done kicking my ass, which is nice so i get a little bit of sleep. 

Do u know what oxygen costs and if insurance covers it? I have private insurance through work and it is pretty comprehensive.

Also, the only trigger I am aware of is alcohol and I immediately stopped drinking when I got the first one. I smoke, but that doesn't set them off. I sometimes get an attack while I'm watching tv, but it's not consistent.

[CHfather]

Your private insurance ought to cover oxygen for CH.  Some people have to struggle with the insurance company to get it.  They shouldn't have to do that fighting, but sometimes they do.  I don't know what you'd pay.  What's it worth to stop a two-hour attack in 15 minutes, with no side effects?    

Many people find that using an energy shot at night doesn't keep them awake.  But it does, with some people.  Maybe try it with an evening attack?  Maybe start with just a cup of coffee, which is less caffeine than an energy shot (and about the same amount of caffeine as an energy drink such as Red Bull).  Take it at the first sign -- once an attack is really underway, it doesn't help as much, but it can help even with the ones that wake you up.

Some of us are hopeful that a truly effective treatment for CH, now in clinical trials, might be seen in a few years.  But you've already seen your attacks become worse, and it's not like CH cycles to get better over time.  Oxygen, properly set up and properly used, will stop almost all attacks within 15 minutes.  So it's important, just as it's important for you to fully understand the condition.  Maybe there were some triggers for your 7 pm attacks, for example.  Foods with MSG in them are triggers for a lot of people, for example.  Maybe you sometimes eat something different while watching TV (flavored chips, for example, are high in MSG, as are most packaged ramen noodle products and of course Chinese food; and chocolate and some cheeses are also triggers for many people).  Just saying to stay vigilant.

The D3 regimen is almost universally helpful.  Vitamin D deficiency has been closely tied to depression and other brain-based conditions, too (going back to your original question). (I hate these sensationalist articles, but it's the first one I came across, and it does refer to some of the research, so just FYI: http://www.healthline.com/health/depression-and-vitamin-d.)