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        Cluster Headache Help and Support >> Cluster Headache Specific >> Do I suffer from cluster headaches?
        
(Message started by: beckjan on Jul 29th, 2006, 2:01am)
Title: Do I suffer from cluster headaches?
Post by beckjan on Jul 29th, 2006, 2:01am
Hi, My name is Rebecca and I just recently found this site after an appointment I had with my doctor in which he believed that the headaches I've been suffering from for the last ten years are cluster headaches.

Here's a little background. I'm 22 now, they started when I was around 12 to 13. They've gotten gradually worse and more common though I have gone almost a year at a time without having one bad headache. This year the pain has gotten much more severe, though the way the begin and end is much the same. I'll start off with the pain. It is always in the same place, the right corner of my left eye, the corner nearest to my nose. The pain starts off dull, but much more painful than a headache. It becomes pulsating and then fianlly very sharp while still remaining pulsating. There is nothing I can do when the pain becomes incredibly sharp. It feels like something is stabbing me in that eye and no matter what I do, the pain just keeps coming. I usually end up on the floor, I throw up dozens of times, and I try to do anything to make the pain seem less. I press my palm as hard as I can on that eye, I pinch the skin above it, I rub the area until it hurts, but again it does really nothing for the pain. I used to be able to force myself to fall asleep when a headache got really bad, but now it's impossible. The pain, when it's in full force, lasts about five to six hours. When I start to panic, I usually goto the ER. I do my best to deal with it and I even force myself to throw up so I'm so weak I practically pass out. My left eye, the one where the pain is associated, becomes half opened and remains that way. I usually just keep it close altogether because it hurts too much to see anything with it. The last two times I went to the ER, which were about a month ago, I was given 10mg of morphine and it made me incredibly sedated, yet the pain remained. I was given 4mg more before the pain on my eye decreased. Even then, the pain never completely went away until I fell asleep (with the help of the morphine) and I woke up. I slept for two days straight with the 14mg of morphine I had last. I'm only 120 lbs so it really knocked me out.

Well, that's the pain aspect of it. Here's just some more details I can give to hopefully help figure out what's going on with me. I have daily headaches a lot of the time. I take eccederin migraine every once in a while and if my head is feeling funny and I'm getting a dull pain, it works a lot of the time. I still have one bad headache every couple weeks, and a really really bad one (the pain I talked about) every month or two. Like I said before, I have gone many months without having anything. My doctor put me on a anti-depressant to help prevent them and maxalt (which I have yet to take) in case I feel one coming on. He did tell me that he thinks it's cluster headaches that I have. I'm just confused about whether or not the pain I suffer from when I have a headache is indeed a cluster. It's severe to me. I am hysterical, crying, on the floor, crawling to the bathroom, and I eventually start to panic when I have them.

Thank you for your help.
Title: Re: Do I suffer from cluster headaches?
Post by georgej on Jul 29th, 2006, 2:09am
Welcome, Rebecca, but sorry you have to be here.

First, take the "cluster quiz" that's located on the button at the left of your screen to see if it fits what has been going on with you.  Have you had a CT scan yet?  Also see about getting a neurologist to give you a thorough workup and diagnosis.  

Best of all, read all that you can on this site, and ask all the questions you want.  There are many here who are much more knowledgeble than I am.  I'm sure they'll respond soon, with excellent advice.

Best regards,

George
Title: Re: Do I suffer from cluster headaches?
Post by beckjan on Jul 29th, 2006, 2:17am
Thank you for your response. I took the quiz, and some of them I answered yes for cluster, also yes for migraine. I've believed it was migraines that I suffered from up until when my doctor mentioned the cluster headaches.

The main thing that I can relate to, in terms of cluster headaches, is that the pain is so specific and always in or around my left eye. It's the only area that ever hurts.

I also have had a CT scan, a few years ago. It was during one my ER visits and I can't even remember what it showed. I tried to get a referral to a neuro on my last doctor visit, but he said he wanted to see me first. I ended up with that anti depressant and maxalt, and no neuro referral. Should I call my doctor and ask for one even though he wants me just to continue seeing him in regards to the headaches? I thought it was kind of strange for him to want me to see him instead and to just blow off my request to see a neurologist. I definitely want to do another MRI.
Title: Re: Do I suffer from cluster headaches?
Post by kissmyglass on Jul 29th, 2006, 2:36am
Sounds like Migranes to me, or at least not Clusters but I'm no Doctor.

Good Luck!

Kev
Title: Re: Do I suffer from cluster headaches?
Post by TxBasslady on Jul 29th, 2006, 2:54am
Realize that you can have more than one type headache going on at the same time.

Some have CH, CPH, and migraines.  

You have every right to a referral....and if you're not comfy with your reg doc, then demand it.   You're the one who pays....so you should get your say.

Narcotic drugs do very little for CH.   Seems that's the drug of choice in the ER's.   You can also get rebound headaches from it's use.

I agree you should have another MRI...just to be safe.

I would also make an app't, and get that referral that you ask for.  

Read the info here.  There's a wealth of knowledge on these pages.

My best to you....let us know what you find out.

Jean
Title: Re: Do I suffer from cluster headaches?
Post by chewy on Jul 29th, 2006, 7:56am
Sounds like migraine complicated by panic.
Title: Re: Do I suffer from cluster headaches?
Post by Sean_C on Jul 29th, 2006, 11:24am
Hi Rebecca, I read your post and a couple of things came to mind. You do have some cluster symptoms IMHO, and you have some that don't seem to fit the mold. Thats not saying that you don't have CH, I'm no doc ;) The main thing that caught my attention was the 6 hour headache. Although I'm sure it has happened to someone with Ch, its surely a rare occurance.

I put up 2 links for you to read about Hemicrania Continua. Its a very painful headache and is also very rare. It can be easily missed by a doc, so I thought you might like to check it out. At best, if its not HC, at least ask your doc to rule it out with a try of Indomethacine, which is the miracle cure for this syndrome. Most patients with this condition respond rapidly and become pain free within weeks :)

If it seems possible, print the article and show it to your doc. Hope you get some PF time soon ;)

Sean................................

http://www.achenet.org/articles/6.php

and

http://www.ninds.nih.gov/disorders/hemicrania_continua/hemicrania_continua.htm#What_is
Title: Re: Do I suffer from cluster headaches?
Post by starlight on Jul 29th, 2006, 12:13pm
Rebecca,

I am definitely no doctor but it sounds like you have migraines (although if you are feeling strong pain BEHIND your eye cluster headaches definitely need to be ruled out).  The severity of the nauseau/vomitting you are describing along with the length of the headache makes me think migraine.  But pain behind the eye makes me think cluster.  I would recommend that you go to a headahe clinic in your area for a diagnosis--b/c maybe you are getting different kinds of headaches at different times--there at the headache clinic they can sort that out and give you the help that you need.  Also, vommitting that frequently you run the risk of dehydration and you definitely need prompt attention to treat these headaches--they are obviously severe cluster or not.  Good luck to you Rebecca!  Starlight
Title: Re: Do I suffer from cluster headaches?
Post by starlight on Jul 29th, 2006, 12:15pm
Rebecca,

Definitely ask your doctor about what Sean C is saying too (just read his post)--that sounds like a real possibility!  Take care, Starlight
Title: Re: Do I suffer from cluster headaches?
Post by Mattrf on Jul 31st, 2006, 11:24am
Rebecca there is also something called SUNCT that I like to call CH’s evil cousin, it shares some of the symptoms and it is what I suffer from. The main differences are that SUNCT typically happens during the day, it is also one sided and is at the eye but where CH hits last about 45 minutes SUNCT last for hours with spikes during this time that feel like an ice pick to the eye lasting seconds and can happen up to 40 times a day but the headache it self only changes in intensity. There is also a numbness feeling in the effected side of the face. The other difference is that SUNCT does not respond to any of the migraine or CH medications. It is a very rare condition but it may be something you also want them to rule out. The vomiting as far as I know is not a symptom and has not happened to me.
Good luck and I hope you can get properly diagnosed so you can get some relief, read all you can here and print as much as you can and take it with you to your doctor, most of them are not well versed in CH so you have to help educate them.

Good luck to you and hang around and ask lots of questions and visit the general post as well it is a good place to vent or post any none specific questions.

Matt
Title: Re: Do I suffer from cluster headaches?
Post by thomas on Jul 31st, 2006, 1:31pm

on 07/29/06 at 02:01:58, beckjan wrote:
I'll start off with the pain. It is always in the same place, the right corner of my left eye, the corner nearest to my nose. The pain starts off dull, but much more painful than a headache.  There is nothing I can do when the pain becomes incredibly sharp. It feels like something is stabbing me in that eye and no matter what I do, the pain just keeps coming. I usually end up on the floor, and I try to do anything to make the pain seem less. I press my palm as hard as I can on that eye, I pinch the skin above it, I rub the area until it hurts, but again it does really nothing for the pain. I used to be able to force myself to fall asleep when a headache got really bad, but now it's impossible.  When I start to panic, I usually goto the ER. I do my best to deal with it  My left eye, the one where the pain is associated, becomes half opened and remains that way. I usually just keep it close altogether because it hurts too much to see anything with it. The last two times I went to the ER, which were about a month ago, I was given 10mg of morphine and it made me incredibly sedated, yet the pain remained. I was given 4mg more before the pain on my eye decreased. Even then, the pain never completely went away until I fell asleep (with the help of the morphine) and I woke up. I slept for two days straight with the 14mg of morphine I had last.

It's severe to me. I am hysterical, crying, on the floor, crawling to the bathroom, and I eventually start to panic when I have them.

Thank you for your help.



Hope you don't mind me taking a few liberties with your original post.  I didn't add anything, just took some stuff out.  Now if what I have quoted up there was all you had to say, I would be 99.9% sure that you have CH.  But you have a few migraine symptoms as well, it could be that you suffer from both and are not able to diferentiate the symptoms of each.  But I will also say that not every one's CH symptoms are identical.  At least the people I have talked to they are not all the same, very similar and sometimes an individual person my have different types of CH hits.  Talk to your doctor about getting a script for O2 at 15lpm through a non-rebreather mask, see if that helps.  (works for CH and migraine).  Best of luck to you, and I hope you find the answers you are looking for.
Title: Re: Do I suffer from cluster headaches?
Post by kevinpix on Jul 31st, 2006, 6:45pm
It sounds like it, but go to a doctor.  If he can't put you on some kind of preventive treatment, find one that will.  The meds are so good now, you just have to find the best combination that works for you.  There a zillion ways to give relief, you have to be informed by researching everything possible.  Just remember, you're not helping by pinching yourself, that is only creating more pain.  Ask your doctor about breathing exercises you could learn, meditation, maybe even a little time spent praying.   All of these helped me.  
Title: Re: Do I suffer from cluster headaches?
Post by beckjan on Aug 2nd, 2006, 2:36am
sorry for the late reply
Thank you everyone for your answers and help.

I read the pages regarding Hemicrania Continua and I don't think I have that. I've had some weeks, not recently, where I had a constant headache and at some part of the day would escalate to much worse and then back again. It's been a while though. When I go through periods of daily headaches, they're always around the top of my head. Whenever the pain gets really bad it's always associated with my left eye. I have had a few times where it's been my right eye, that's it though. When the pain does hit that level, where it's in that one specific area, it does last for hours. I never had that sharp, jolting pain for less than an hour. That is why I always believed they were migraines. It was them being in the eye area, and incredibly painful, that I started to think otherwise.

I'm still going to bring up the HC to my doctor though.

Mattrf, hmm I'm not sure if SUNCT is like what I have. When I'm going to have a really bad headache (or migraine, whatever it is) it does start in the day, but it lasts well into the night. Usually not letting up until the morning. The length of these headaches are throwing me off. I definitely have never had a short headache of any kind.

thomas, I think you are really right on. I think I might suffer from them both, migraines and CH if that's possible. I'm going to see what my doctor thinks. There are plenty of times I'll have what I am pretty sure is a migraine, and even though it's really uncomfortable, if I throw up a few times or am tired enough, I can fall asleep. The pain is bad, but I can bear it. I have had fallen asleep countless times during those and waking up feeling much better. The ones where I end up going to the ER because I been up the whole night and I'm a mess (I am so weak, pale, and still in the same amount of incredible pain), I couldn't imagine being able to sleep with it. I can't even sit still. I also don't throw up because I have to when I have those. I usually make myself because I assume I'll feel better afterwards,  but it never does. I'll definitely ask about the mask, I know I'll probably have another one, many more, and I don't want to goto the ER when I have them.
Title: Re: Do I suffer from cluster headaches?
Post by artscribe on Sep 18th, 2006, 4:34pm
I'm most certainly not a doctor, but what you describe, Rebecca, sounds like cluster headaches to me. When I'm in a cycle (I am now), some of the headaches are so severe that I vomit -- and this has only been the case for the past two years (I've had clusters for over 30). Anyway, good luck to you.
Title: Re: Do I suffer from cluster headaches?
Post by unsolved1 on Sep 18th, 2006, 7:52pm
Sorry to hear that you've been having such pain Rebecca. Some of your symptoms do sound like clusters, but some don't. Like said before, clusters don't last that long (each attack) ... if it does ... it would be very, very  rare. Clusters are also (alot of the times) like clockwork. They come about the same times each day. Episodics know about when their cycles will begin and end too ( but not always).

You definatley need a headache specialist. If it is clusters that you have, time will tell you for sure.

Goodluck & I hope you don't have clusters.

UNsolved  :)
Title: Re: Do I suffer from cluster headaches?
Post by Margi on Sep 18th, 2006, 9:02pm
hmm...doesn't sound like cluster OR migraine to me.  I'd push for an MRI and a neuro visit if I were you.  I'm sorry you're going through this - it sounds awful. :(  Please keep digging and let us know your progress, ok?  

Are the antidepressants making any positive difference for you?
Title: Re: Do I suffer from cluster headaches?
Post by lionsound on Sep 18th, 2006, 9:05pm

on 08/02/06 at 02:36:04, beckjan wrote:
I think I might suffer from them both, migraines and CH if that's possible.


it's TOTALLY possible! I get both:) and a few more types too. I'm very talented;)And to me, from what you've described, it sounds like you might too. Sometimes my HAs are so jumbled up and when I hurt it's hard to tell symptoms apart. I would suggest that you try and find a headache specialist to help you sort them out so you can get proper treatment. It doesn't sound like your doc has enough specific knowledge to be helpful to you. And also a neuro could order an MRI if you need one.

I would also suggest that you keep a Headache journal of date, time, duration, meds, and location on your noggin of the pain.

Good Luck and please let us know how you make out.
Be well and Pain Free!
-lionsound
Title: Re: Do I suffer from cluster headaches?
Post by Phil L on Sep 18th, 2006, 9:15pm
Rebecca,  whatever it is this is a good place to talk about it. Thomas is to the point regarding O2 and this should be your first priority. Talk to your Doc about it and if necessary bring in information from this site to back you up, but don't back down. Demand the 02 as it really works and can help you manage what your going through. Hang in there! Phil
Title: Re: Do I suffer from cluster headaches?
Post by chopmyheadoff on Sep 19th, 2006, 3:16am
hi there - sorry to hear your in so much pain - but your in the right plcae for advice about it . .

sounds like a funny one this - the symptoms of CH but some of other things .

the only thing that makes me think you dont have CH is the duration that you say your headaches last.
Iv had the odd one last 4 hours or so but thats very rare.

Either way your doctor is obviously unable to give you a clear diagnoisis - if he had, then he would be prescribing you CH medicine ie imitrex etc

My advice would be to see a neuro - if your doc is holding back then just demand a referal, if he still wont then just change doctors . . . its you that pays them !!

good luck with this babes and keep us posted.
PS where on the KIP scale do your headaches fall

(<========== check the link on the left  )
Title: Re: Do I suffer from cluster headaches?
Post by BarbaraD on Sep 19th, 2006, 7:49am
Ok Rebecca - you've received some very good advice here.

O2 will help both CH and migraines (I have both)

One of my neuro's asked two questions - What do you do when a headache hits? And, Have you ever thought of suicide? If you lay down in a dark room - wrong answer and if number two is "no" then it's not clusters. Unfortunately I got both answers correct. ;)

Getting the "right" doc and neuro is essential - you may have to go thru several before you hit the jackpot. Question the docs - how many CH patients do you have? What do you know about CH? How do you treat CH? There's a list of questions somewhere on this board that need to be asked.

Now, that said, I suffer from three types of headaches and they all start out pretty much the same, so yes, it is possible to have both migraines and CH.

As far as the long lasting headaches, I'm not too worried about that - you may be "shadowing". I do this most of the time (I'm chronic).

When you first feel one coming on, down a can of Red Bull and see if this aborts it.

I keep Cafergot (ergotomine) tabs handy and if I get above a Kip-5, I pop one of these little darlings along with 25mg of phenergan (to keep down the naseau). This also works on migraines.My son swears by Maxalt for migraines (I can't take that).

For preventatives, I was on topamax for years (I'm in a drying out pattern right now and off it). It put me in remission and it was great while it lasted. SOme bad side effects occur in a lot of people (I always took it at night before bed and didn't have the side effects). Verap and lithium have worked on a lot of folks here.

Excedrin works at the onset for me also, but be careful, it can cause rebounds if you take it too often.

Good luck and let us know what's going on with ya.

Hugs BD


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