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New potential CH here (Read 539 times)
mike95
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New potential CH here
Feb 2nd, 2018 at 1:03pm
 
Hey all. Been reading through all your posts for the past day or two and felt like creating an account. I'll start by documenting my little experience with what I think is CH.

I'm currently 22yo, and I started experiencing symptoms when I was 19. It started while I had a bad cold and I woke up with the most intense pressure behind my right eye. I tried to bear through it for about 30 minutes, but then I popped some ibuprofen and it went away within the next 30 minutes. The next time it hit was about four days after the first attack. I was taking an exam in the evening when it hit, but luckily I was done at that time and ended up just skipping the proofreading.

Those types of headaches went away for about 2.5 years after that until three days ago where I woke up with that familiar pain. I tried sleeping through it, but after 30 minutes, I popped an ibuprofen and the pain subsided in the next 30 minutes. I know what a lot of you are thinking: ibuprofen doesn't help. It really is unclear whether my headaches stopped due to the ibuprofen or just due to convenient timing.

It seems that my attacks correlate with textbook CH symptoms, but it seems a lot less consistent in the timing of the attacks. None of my attacks have happened on the same day or on sequential days (albeit I've only had 3). However, it seems that the description of the attack is unique enough that I feel like its CH. I am going to see a neruo soon, but I'd like to know what you all think. Also I have had a couple questions thats been bugging me:

- Do CH symptoms get worse? My symptoms are currently very manageable and the worst part is really just the fear of it becoming more consistent.

- If I drink, will it worsen my case of CH? I'm still 22 and alcohol plays a sizable role in my social life. I would want to try to drink this upcoming weekend, but not if it could develop a more stable cluster.

- How do you know when you've exited a "cycle" and it is safe to have certain triggers? (i.e. alcohol) I feel a slight sensation in my right temple where the headaches hit, but unsure whether that is just me focusing on that area or if I am actually having shadows.

Sorry for the long read, and if I unfortunately do get diagnosed with CH, I'm glad there's a community like this online.
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BarcodeJ
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Re: New potential CH here
Reply #1 - Feb 2nd, 2018 at 6:49pm
 

Hey Mike,

I'm pretty new here. Been dealing with my own version of cluster headaches for about 6 years now but just figured out what they were about a week ago. My primary doctor agreed that they are cluster headaches but I am following up with a Neuro soon for a more official diagnosis. In the meantime I have spent pretty much every spare moment I have reading up on cluster headaches, and here's what I know....

1. Go to a doctor. ASAP. What you have may or may not be clusters, and as far as I know we don't have a neurologist here that can diagnose you over the internet unfortunately. Anytime you are experiencing an abnormally severe headache it is a good idea to get checked out. You can't self diagnose, especially when some of the hallmark signs are missing (regularity of attacks is pretty much in the name.)

2. In answer to you first question...it's complicated. Cluster headaches are not necessarily a "progressive" disease but they seem similar to some other diseases like lupus or fibro that have flare ups and can get worse for a period of time for some people. Some people start episodic and then become chronic and then later go back to being episodic. So do they get worse? Maybe. Maybe not. The good news is there are new treatments being worked on and research being done (though definitely not as much as there should be.)

3. For the 2nd question: Don't do it! I can't speak for anyone else here, but every article I read lists alcohol as the primary trigger, most include nitroglycerin as well and mention not taking daytime naps as sleep seems to bring on cluster headaches. For me, if I am in a cluster period, a single alcoholic drink will guarantee me a few hours of the worst pain you can imagine coming within the hour. During my latest episode before learning what it was I decided to go to Applebees and have some long islands with friends. I barely made it home (not because I was intoxicated, but because the cluster was coming on hard by the time I left.) I tried a rum and coke at home the next night same thing. This is the only time I have had attacks outside of my usual 11pm-1am range.
Let me clarify here the following is my personal opinion and experience: The pain of clusters is this bad, I have drank alcohol every day for the last 5 years pretty much. Not binge drinking. Just one or two drinks maybe a few more for a special occasion occasionally, just something to help me sleep. It was my means of self medicating for anxiety and helped me sleep. During the last 5 years I have never gone more than 2 days without those drinks. Once I found out that alcohol was the trigger I quickly became cured of the desire to drink. I have been sober for almost a week now, and have had zero desire or temptation to have another. Haven't had an attack since either. Convenient timing probably as I was nearing the end of how long my typical episodes last anyway. Still, even though I'm pretty sure my episode is over, you couldn't pay me enough to have a drink right now. If you have cluster headaches alcohol is not worth it.

To simplify, if you have episodic cluster headaches and are in an active cycle:
Alcohol = Cluster Headache
Cluster Headache = Pain that defies imagination/description.
Therefore Alcohol = Pain that defies imagination/description.


4. 3rd question, as far as I know there is no way to know when you have exited an episode for sure other than going a week or so without headaches or maybe trying to drink and waiting to see what happens but like I said above, that's probably not the way to go. I'm still highly aware of every millimeter of that nerve on the left side of the face. It doesn't hurt, but it's like I can feel it. Like that feeling in your hands when you've been using the lawn mower and it's just a slight tingle to remind you of the vibration for a while after. I'm not sure if this is typical after a cycle or not. I don't remember. Probably was too preoccupied with worrying whether another was coming and I didn't think to write it down last time. Start keeping a headache journal and write these things down.

Hopefully you get to a neuro ASAP and hopefully they find a secondary cause of your headaches and it cures you. Hopefully you never had and never will have to experience a cluster. But if you did, this is one of the places to be. I've also found twitter to be surprisingly useful for finding information. There are a few clusterheads that post useful links pretty often. There are also some support groups on facebook that seem mildly useful, but harder to search and index imo.

Good Luck
BarcodeJ
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Mike NZ
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Re: New potential CH here
Reply #2 - Feb 3rd, 2018 at 4:10pm
 
Hi and welcome Mike

Great answer from Barcode which covers your questions, although for alcohol whilst it is a trigger for most people, it isn't all of us. For those that it is, normally a CH will come on in a few minutes, which is often used by people to spot the end of a cycle, by having a beer to see what the outcome is. I'd suggest you test this at home.

I totally agree with the first answer which is to go see a doctor. Whilst it could be CH, there are multiple other medical conditions which give the same symptoms but need different treatment. We've had people post here thinking they have CH and it has turned out to be something else including tumors, brain bleeds, eye infections and other headache types.

When you see a neurologist, try to find one that specialises in headaches as most doctors, even many neurologists don't have the training / experience to deal with complex headache types.

Whilst trying to match symptoms to the CH (or other headache) standard symptoms, it isn't unusual for it to take days / weeks / months or longer for it to settle down to the standard symptoms, which makes it harder to diagnose correctly.

CH can get work than what you have and it can get much better, especially once you have an effective preventive and abortives or you are out of cycle.

It isn't easy to spot the end of a cycle, many just fade away, others go out with a bang and anything between. Normally people go by when they don't get symptoms and triggers don't trigger a CH.

I'd also start a headache diary, which can help with the diagnosis.

Let us know how you get on. We've all been through the process you are going through now, so we understand it.
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