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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Not sure if this is the right club
        
(Message started by: terrapin on Mar 28^th, 2006, 12:01am)

Title: Not sure if this is the right club
Post by terrapin on Mar 28^th, 2006, 12:01am

Hi all!
I am new here. I have just been diagnosed with cluster headaches for the second time. The first time the diagnosis started as ch but the diagnosis eventually turned into chronic migraine after several dr's. My first diagnosis was over 9 yrs. ago. I was told by a neurologist that I cannot take triptans due to family history of heart disease and to deal with the headaches with narcotics. Fast forward 9yrs. and I was taking over 200mg. Oxycontin daily along with other pain meds. I finally decided that that was enough and took myself off all painkillers. Now I am back at square one. The PM doc(new) told me last week that he thought I had ch and started me on indocine-I have been taking verapamil<sp> for awhile now so he didn't change that, but the Indocine is making me sick to my stomach so I stopped taking it.
I thought I would research ch and found this site. But after taking your quiz I am not so sure what it is I have. My headaches present themselves like a cluster is described, but mine will go pretty much all day. They start in the late morning usually and stay with me throughout the day. Sometimes better sometimes worse. Several times a week they will get really bad. Your kip10 describes how it feels.
Am I suffering from ch or is this something else. I have had numerous MRI's and CATScans so I am pretty certain that I do not have a tumor or something organic going on up there. I need to find out what is going on and learn how to treat it. The pain is really getting to me again and it is making my relationship with my wife and children strained.
Please let me know if there are any suggestion out there. Any feedback is appreciated!
Thanks,
-Glenn

Title: Re: Not sure if this is the right club
Post by Skyhawk5 on Mar 28^th, 2006, 12:54am

Glenn,
Even if this isn't the right club, you're at a good place to start. I'm no Dr. but you may want to look into Cluster Migraines. On the CH home page at the bottom where you click enter there are site's for Cluster Migraine and other types. Also, if you haven't read the "Medical Info and Cluster Traits" on the left of this screen.

I have had what we call Shadows (roughly 4 or less kip) that lasted all day but not every attack. Best thing to do now is read, read, read. Just curious, did the Oxycontin work at all. Skyhawk5

Title: Re: Not sure if this is the right club
Post by E-Double on Mar 28^th, 2006, 6:04am

A Cluster HA does not last ALL Day.
Though many report persistant shadows , which is our term for the lingering HA or "sense" that an attack is coming.

YOu may want to look here just for reference.
It is the International Headache Society's Guidlines:

http://216.25.100.131/ihscommon/guidelines/pdfs/full_form_watermarked.pdf

Good luck and find a doc that is HA competant!

E

Title: Re: Not sure if this is the right club
Post by chewy on Mar 28^th, 2006, 7:18am

Quote:

but you may want to look into Cluster Migraines

There is no such animal.

You might have co-existing conditions but there is no such thing as a cluster migraine.

Title: Re: Not sure if this is the right club
Post by Bob_Johnson on Mar 28^th, 2006, 7:22am

Self-diagnosis, when you have a complex problem, is a path to trouble. If you have a choice, seek a headache clinic or a neurologist who has EXPERIENCE dealing with headache. (Too many reports here about neurologists who lack such experience/knowledge.)

If the Indocin isn't changing your picture by now, stop it. It's used for a small sub-set of cluster and you should know within a short time whether it's helpful.

The picture has changed on using Imitrex, etc. and so I would want to have a doc update your history and this decision about not using this class of effective meds.

Primarily--find an expert!

Title: Re: Not sure if this is the right club
Post by superhawk2300 on Mar 28^th, 2006, 8:06am

My advice is to find a neurologist who specializes in headaches if you can. Mine does and is proud of it and I do not suffer the woes others have when dealing with doctors.

It is bad enough to have this affliction, but then to suffer when trying to get help really adds insult to injury. I am not a “doctor go’in” guy so I can’t stand when am suffering so bad I decide to go and still get no help. Makes me furious, on top of sick.

Title: Re: Not sure if this is the right club
Post by pfunk on Mar 28^th, 2006, 1:22pm

I'm with the rest of these guys. Whether or not you have CH or not, you have started in the right place. Most of the people here have suffered from CH for quite aw while and/or know quite a bit about the "other" headaches. Yes, find a headache specialist or neuro who specializes in headches and go from there. outside of that, read as much as you can around here, ask questions and listen to these guys; they really know their stuff and are very willing to help if you "really" need the help. Good luck and many PF wishes to you.

Patrick

Title: Re: Not sure if this is the right club
Post by terrapin on Apr 1^st, 2006, 3:04pm

Thanks for the feedback.
I'm sorry I haven't returned the posts, but I have had a few really bad days. I have seen my PM a couple times this week and he still belives that I have ch, but thinks that they trigger migrains-possibly a couple different things going on at once. I am still trying to determine what the heck is really going on. When I saw him Fri. I asked for a referral to a headache specialist. The one he suggested is out of my network, but I am going to try to get to see him anyways. I am also getting into seeing a cardiologist to see if I can try Imatrex again.
To clarify, I do not have ch all day. I have headaches that will start in the morning, but will flair up throughout the day getting worse at night. My Dr. changed me from Indocine to Ketoprophen and then fiorinal for when they start to get bad, although if that doesn't stop it I am left to wait it out. I have tried oxygen in the past and it didn't seem to help, but I think I will try it again since I have gotten so many suggestions to do so.
What do you guys do besides oxygen to abort the bad headaches? All I can seem to do at this point is just wait them out....but it is getting harder and harder. It is really affecting my home life and work.
Thanks again for all the replies and suggestions! This has been a very helpful site and your kindness is appreciated!
-Glenn

Title: Re: Not sure if this is the right club
Post by LeLimey on Apr 1^st, 2006, 4:42pm

There is a condition that sounds similar to what you described called hemicrania continua. This is where the pain is there all the time but get's worse at different points too.
Indocin will really aggravate your stomach, you need to take it with another med to protect your stomach at the same time. It may be worth another try with that guideline.
hope this helps a bit!
Helen

Title: Re: Not sure if this is the right club
Post by terrapin on Apr 1^st, 2006, 5:37pm

Thanks LeLimey!
I looked this up and it sounds very much like what I experience except for the fact that my headaches will go from one side of my head to the other(not during the same attack though), but I will bring this up next visit. When I tried the Indocine it really upset my stomach as does the Ketoprophen. The Dr. did give me Pepsid to use with it so I may try the Indocine again since it seems to be so widely used for these different headache problems.
Thanks for the quick reply!
Good luck to all,
-Glenn

Title: Re: Not sure if this is the right club
Post by LeLimey on Apr 1^st, 2006, 6:02pm

on 04/01/06 at 17:37:43, terrapin wrote:

Thanks LeLimey!
I looked this up and it sounds very much like what I experience except for the fact that my headaches will go from one side of my head to the other(not during the same attack though)

Hi Glenn,
Some of us do get switch hits - hits on the opposite side to our usual side but not so often. This happens to friends of mine with paroxysmal hemicrania too and whilst I don't know anyone (well) with Hemicrania Continua its quite possible the same happens there. You need a good headache specialist neuro to look at the big picture and give you an accurate diagnosis but I DO believe that being pro active in your own treatment gives you a better mindset for fighting these beastly headaches.
Let us know how you get on okay? The more info we all have the better we can help others ;;D
Good luck getting the right meds to give you some FABULOUS quality of life and LOTS of pain free time!

Title: Re: Not sure if this is the right club
Post by BMoneeTheMoneeMan on Apr 1^st, 2006, 7:47pm

What is Indocin? is that another name for verapimil?
I have taken both verapimil and Inderal and have not noticed it made my stomach upset.

Its possible you may have more than one type of headache also.

PF wishes
BMonee

Title: Re: Not sure if this is the right club
Post by LeLimey on Apr 2^nd, 2006, 4:10am

Brian Indocin is another name for Indomethacin. Its commonly used for PH and is ALWAYS worth a try for anyone who is having multiple hits per day. If it's going to work it's very quick acting, about a week, so its' not too much of a trial and it could just be your magic bullet. Never discount anything!

Title: Re: Not sure if this is the right club
Post by Linda_Howell on Apr 2^nd, 2006, 3:32pm

Terrapin,

When you are having what you said sounds like the symptoms of Cluster headache, can you lay down quietly or do you feel the need to pace, rock, or anything BUT sit still with the pain.?

Linda

Title: Re: Not sure if this is the right club
Post by terrapin on Apr 2^nd, 2006, 6:46pm

Linda,
I always thought that laying down in a quiet dark spot was supposed to help. Sometimes it does, but for the most part it is hard for me to just stay still. I do not do the pacing...but believe it or not loud music will sometimes make me feel better. It doesn't make the ha go away....but if I can try to keep my mind on something else it helps pass the time. When it gets real bad I get so consumed with the pain that I will just sit somewhere and cry. Sounds a little whimpy...but if I am going to get to the bottom of this I guess being brutally honest(with myself especially) is how I will get answers.
I'm still not convinced that ch is what I am suffering from and I appreciate the feedback and questions helping me find out what exactly this is.
I am glad I found this place and I hope the best for all!
Glenn

Title: Re: Not sure if this is the right club
Post by Linda_Howell on Apr 2^nd, 2006, 7:43pm

Quote:

I will just sit somewhere and cry. Sounds a little whimpy

I don't ever want to hear that come out of your mouth again. >:( If you have Clusters, there is nothing to be ashamed of in saying the pain can bring you to crying.

Cluster headaches ar the worst pain known to man. I'd be skeptical if you said you DIDN'T feel the need to cry.

The reason I asked you about the sitting or laying still is that THAT particular trait seems to be the one constant among us. No way could anyone with CH...go lay down in bed after this pain ramps up.

Linda

Title: Re: Not sure if this is the right club
Post by Cathi04 on Apr 2^nd, 2006, 8:04pm

Glenn, Clusterheads are NEVER wimpy! They are suffering unimaginable pain.....anything you want to say will be accepted and understood here!
There is another possiblility with what you have described. Rebound headaches. It's possible. Have you tried 02? It works well for so many here.
At any rate, keep looking for the answers! Continue on asking questions.we are glad you found Clusterville, and sorry you need to be here.
I encourage you to read the bullets to the right, and I also would ask you to let us know how much verapamil you are taking?
Remember, this place is here to help both you and your wife.......Clusterheadaches should NOT be allowed to destroy lives!!
Please encourage your wife to take a look at the supporters' portion of this site. It is there for her!
Wishing you PF evening, and keep on posting!
Cathi