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Cluster Headache Help and Support >> Getting to Know Ya >> New and not sure about a lot of things http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1290896010 Message started by Laurel on Nov 27th, 2010 at 5:13pm |
Title: New and not sure about a lot of things Post by Laurel on Nov 27th, 2010 at 5:13pm
Been reading posts for a couple of weeks but have been afraid to post.
Got diagnosed a couple of months ago but am not sure that it is correct. They don't fit all of the described symptoms I have read about. My headaches don't come in clusters, they happen all year long with at most a week in between attacks. My headaches can last up to 8 days round the clock or just 30-60 minutes. The ones that last the longest aren't as painful (pain level 6-8) as the shorter ones (pain level 9 or 10). Oxygen therapy does stop them for up to 2 days but then they come back. I haven't been able to take any of the preventative drugs. I have been found to be either allergic to, or have very bad reactions to, all of the preventative medications (verapamil, lithium, depakote, topamax, etc). Don't know what step to take next, or even IF I want to take another step. Can't continue, gotta go cry now, if this is a stupid post then just ignore it. Laurel |
Title: Re: New and not sure about a lot of things Post by George on Nov 27th, 2010 at 9:40pm
Laurel, it's not at all a stupid post....but it does make me wonder whether you have more than one headache type going on. It sounds (to me at least--and I'm not a doctor) as if you may be getting migraines as well as CH. There are a number of people here who do.
If you haven't yet done so, check back with your doctor with your symptoms. Allergic to the usual medications or not, there are approaches that can be used that can work for you. But it's going to have to be a coordinated effort between you and the doc. It probably isn't going to help overnight, either. All the best, and welcome. George |
Title: Re: New and not sure about a lot of things Post by Mike NZ on Nov 27th, 2010 at 11:05pm
Laurel, your post was anything but stupid.
As others have commented it sounds like you're getting more than one headache type which will make it a lot harder to pin down what the exact problems are. I'm not a medical doctor, so do please see a headache specialist who will be able to decipher what is happening and how best to treat it to fit in with the reactions you've had to medication to date. What will help a lot with this is if you keep a diary where you note each day what the headaches were like, what the symptoms are, how intense the pain is, anything that seemed to bring it on (or stop it), etc. Whilst food isn't normally a CH trigger (other than alchol), if you've got other headache types there may be a connection to food or drink too, so note that down too. Best wishes with you getting this under control. Others here have with complicated mixtures of headaches have been able to do this. Do let us know how you get on with this. |
Title: Re: New and not sure about a lot of things Post by Laurel on Nov 28th, 2010 at 4:22am
Lots of good advice, glad my post wasn't stupid. It is hard to type about my problems. I did look at the pain scale, and I would say that most of the time the headaches are at a 6 but just after I go to bed it will ramp up to a 7 or 8 for about an hour and keep me from sleeping.
The O2 almost always aborts the attacks, I have been using them since April and they have only failed me once. I keep the tanks on my back porch ready at all times. My headaches are always on one side of my head, usually the right side so that is what caused my doctor to decide they were cluster headaches and not migraines. I had also tried some migraine medications in the past and they didn't work on these headaches. My doctor is just my primary care physician. I have been thinking about asking for a referral to a neurologist. I did not know there were doctors who specialized in headaches. I will send an email out to my doctor asap to get a referral. I haven't been keeping a diary, but I have experimented with different types of foods that are supposed to bring on headaches and have not found any that are a trigger. I will do the diary thing now so I can show it to the headache doctor whenever I get in to see him. What is a "shadow" type headache? I saw it mentioned elsewhere and wasn't sure what it meant. One weird thing I did find to be a trigger is my son's squealing and screaming while he plays. After hearing about 4 or 5 of those I start feeling the headache coming on. His twin sister's screaming doesn't cause them, his have just the right pitch I guess. They are both happy mommy now has the oxygen tanks and is no longer so cranky. When I was a teenager and in college I used to get these headaches but they fit the cluster type of symptoms much better. Then they just stopped and I didn't get another one for 19 years. At least I got a nice reprieve. |
Title: Re: New and not sure about a lot of things Post by Chris H on Nov 28th, 2010 at 11:35am
Lauren, There's also a headache type very much like cluster that just doesn't goo away. It's called hemicrania continua. The good thing is that it responds very well to Indomethicin. You should mention this to your doc.
It may very well be that you have multiple types of headache or CH alone. I am chronic and have constant shadows, usually ranging from 2-4, but sometimes up to 6+. The major attacks are about once a day for me. I think you will do well to get to a headache specialist if you can. They are more likely to have seen your symptoms before. Welcome to the site! -Chris |
Title: Re: New and not sure about a lot of things Post by wimsey1 on Nov 29th, 2010 at 10:21am
Hi, Laurel. Glad you found the courage to write us. Funny how we dread stuff like that only to find there was nothing scary there at all. Anyway, dittos on all you've been told.
A shadow is our way of talking about one of two things: either a low KIP ch or the residual/rebound type pain after a regular hit. Shadows can persist for hours, or even days. They aren't supposed to be there and you should treat them with O2 just like a higher KIP hit. And the O2 works best when you get to it soonest, and stay on it for as long 10 minutes AFTER the hit goes away. And for what it's worth, chs don't usually cause sensitivity to light or sound. That's more like migraine I think. Try pinching your leg, real hard (or just imagine it) and turn on a light, or a radio. The extra stimulation may be annoying, but it's the nerve in your leg screaming that hurts. The rest isn't really taking part. Kinda like that with chs. Let us know how you make out with your referrals. God bless! lance |
Title: Re: New and not sure about a lot of things Post by Kate in Oz on Nov 29th, 2010 at 5:24pm
Hi Lauren,
Just wanted to jump in and say that even tho' CH is not supposed to cause light sensitivity.... I get it big time! And generally the day after a bad night too. I also get pain down the left side (CH on the right) and I don't think that is 'normal' either. I also find it a struggle at times to deal with my sons loudness!! Good luck, it is good to hear that the 02 is working, but gees sounds like you've been dealing with this a loooong time. (Have you tried melatonin??) Hope you get a break real soon!! Wishin you all the best, Kate |
Title: Re: New and not sure about a lot of things Post by wimsey1 on Nov 30th, 2010 at 8:08am
You're absolutely right, Kate. With CHs, there is no "normal." I stand corrected. Blessings. lance
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Title: Re: New and not sure about a lot of things Post by maryo on Dec 4th, 2010 at 10:35am
I second the idea of finding a neuro (!!) Sometimes I think primary physicians don't always respect their own limitations. You are suffering, and that's gotta be impacting your family life, and it's possible you've understated how serious this is. You do not deserve to suffer, girl.
I also second looking into the hemicrania concept. Find someone who knows this stuff. |
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