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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> I'm so confused.
        
(Message started by: awood0813 on Jan 31^st, 2007, 5:52pm)

Title: I'm so confused.
Post by awood0813 on Jan 31^st, 2007, 5:52pm

Hello all, my name is Aaron and to be honest I don't know if I belong on this site or not. I have a long history of sleep issues starting with insomnia (fixed), to drifting off at all the wrong times, to my new recent development of night terrors. (Half asleep/half awake hallucinations). Lately, the past two years or so, I've been getting these headaches that I think are the worst thing I've ever felt. I've been through some pretty painful things in my life, most pretty graphic so I'll spare you, but these headaches are worse.

They come and they go. I usually find I'll get them 5 or 6 days in a row about once in a month. They always happen at the same time of the day during that period, but it will change between periods. One month it may be at 4 pm right when I'm getting ready to pack up from work, the next month I'll get them right before bed (these are the easiest for me to deal with), and then the next month I'll wake up at 2am or 3am in pain.

The headaches are always, always, always on the right side of my head. I can usually tell for about 5 minutes before I have one that it's coming, because I'll get little pings of pain on the back of my eye. When the headache starts it's this throbbing and stinging pain. It hurts all along the side of my head and each beat of my blood hurts. I get a stinging pain behind my right eye and it often starts to droop and I can't keep it open. My blood vessel on my temple becomes huge and feels almost like a pencil size on the side of my head. These headaches last anywhere from 20 minutes to my longest was 3 hours. When they go away, they just stop.

This sounds to me like a cluster headache, except for a few things different in my case.

First, It's the worst pain I've ever felt and I have trouble concentrating, but I don't feel completely out of it and helpless like other people on here have described. It hurts bad and I just want to be alone because I'm very irritable and excited but I'm not up and running or banging my head on things.

Second, I don't get a bloodshot eye or stuffy nostril, unless I already have that from my sinus problems. I've had sinus headaches and infections, the headaches from those are nothing to my monthly problem and they are fixed with some 800mg ibuprofan, where the headaches I get monthly don't respond to painkillers. I only get sinus problems early fall and late spring.

Third, and this is what confuses me most, I am sometimes (roughly 50%) able to fall asleep or fall back asleep and get through the worst of it. A blessing when I can. From all I've read everyone else can't sleep, but sometimes I can. I am always woken up by these headaches though. This is why I am confused about what kind of headaches I'm having. The absence or presence of sound and light does not impact me at all.

If I am indeed having cluster headaches, I can only say my being able to sleep is through the methods I learned to fall asleep when I had insomnia. Controlled breathing, emptying your mind of everything, and then concentrating on feeling each limb of your body fall asleep, always being more warm then cool. I've found roughly 50% of the time I can do this when I have one of my headaches and fall back asleep within a half hour or so. The pain serves as a great buffer to block all other thoughts out, it's just a matter of me accepting the pain, sometimes it works and sometimes it doesn't.

I took the quiz on this site and scored as follows.
N, N, N, N, N, Y, Y, N, Y, Y, Y, N, Y, Y, Y, N.

Please advise?

Thank you all.

Aaron

Title: Re: I'm so confused.
Post by Linda_Howell on Jan 31^st, 2007, 6:31pm

Quote:

Please advise?

wow. That isn't going to be easy Aaron. No one here is a doctor and we certainly can't diagnosis. The sentence that you wrote about 50% of the time you can fall asleep or sleep through the worst of the headache is a "red flag" to me. I can sleep through what we call a shadow...but there is no way on earth to sleep through a CH after about a KIP 2 or 3 and ramping.

Also...
Quote:

I usually find I'll get them 5 or 6 days in a row about once in a month.

this does not sound like CH, but more the way Migraines present themselves.

You don't say if you have seen a Neurologist. Or whether you've tried any meds or oxygen? Pure oxygen works to abort a CH in about 70% of us and it works for Migraines as well. You may want to ask your Dr. about that.

Linda

Title: Re: I'm so confused.
Post by Kris_in_SJ on Jan 31^st, 2007, 7:54pm

Aaron,

As Linda told you, we aren't doctors. Start keeping a journal. In it note the time of day the HA starts, how long it lasts, how intense it is, what makes it go away (or not). Get yourself to a doctor, preferable a neurologist who specializes in headaches. If you need to, start with your GP. I did and he got me to a neuro within a week. You might have clusters, you might have a different type of HA. You need to read, read, read so you can talk to your docs as an advocate for yourself.

Here's a link that might help you in your quest to educate yourself. It was a lifesaver for me.

http://www.brightok.net/~mnjday/chtherapy.pdf

Keep us informed. Hugs,

Kris

Title: Re: I'm so confused.
Post by AndieKay on Feb 1^st, 2007, 12:14am

Definately see a specialist. I myself still need to see a specialist to have my headaches diagnosed so I am still not %100 sure what I am suffering from. I do know that right before my current cycle of headaches started I was having HORRIBLE night terrors to where I was afraid to fall asleep at night. I know there is a lot of information out there linking headaches to sleep cycles and patterns and all that good stuff so if youre interested you might want to do a little research of youre own. Good Luck with everything!

Title: Re: I'm so confused.
Post by Bob_Johnson on Feb 1^st, 2007, 10:39am

Essential that you work with an M.D. who has experience with headaches both for good diagnosis and to have access to the best meds (Rx).
=====
1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org/physicians/ On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
=============

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: I'm so confused.
Post by Mattrf on Feb 1^st, 2007, 3:05pm

It took my third doctor to diagnose me correctly, but luckily the second doctor said I had CH and I found this site and even though I have a different type of HA then CH the people here where nice enough to let me stay and be part of the family. Guess what I am getting at is that you found the right place, even if it is other then CH you will not find a better bunch of people for advice and support.
Hang in there and let us know how you are doing and what the final outcome is when you get correctly diagnosed, it does sound like CH in some aspects as mine did but not in others so please get to a good neurologist who understands HA’s so you can get on a good treatment plan.

Matt

Title: Re: I'm so confused.
Post by thebbz on Feb 1^st, 2007, 3:25pm

Quote:

Please advise?

You need to seek professional advice.
Get to the doctor.....then the neurologist.
Keep us posted.
all the best
jb

Title: Re: I'm so confused.
Post by awood0813 on Feb 1^st, 2007, 4:04pm

Thank you all for your support. I actually came to this site on the advice of my sleep counselor. She referred me to a neuologist, I just haven't gone yet as I wanted to be more informed before I got doctor speak thrown at me.

And to the person who said they have had night terrors, I feel for you. I've been having them about 4 times a month for the last 6 months. They just randomly started for no apparent reason. I tell you there's nothing like waking up in the middle of the night, knowing you are alone in your room, and yet still seeing shadow men moving down your hallway or walking around your bed. Good luck with these, the best advice I've gotten on how to deal with them is, always just try to remind yourself before you fall asleep that nothing is real until the sun is up. Sounds silly but repeat it like a mantra before you sleep and you'll find if you have a night terror, you might actually be able to recognize what is going on and it's much easier to "wake" up from it then.

Aaron

Title: Re: I'm so confused.
Post by thebbz on Feb 1^st, 2007, 9:22pm

Sounds like your off to a good start on things. Get to the neuro..read Conquering Headache by Dr. Rappaport this is required reading IMHO. Read the Ouch website as well and good luck with the neurologist
more reading...http://www.calouch.org/cgi-bin/yabb2/YaBB.pl?board=general Read the visitors thread..Linda has lots of links and info there. Read that and you'll know more than the neuro [smiley=laugh.gif]
jb

Title: Re: I'm so confused.
Post by Linda_Howell on Feb 1^st, 2007, 10:38pm

Quote:

I actually came to this site on the advice of my sleep counselor.

I am So very curious about this statement. Can you please let us know how she found out about us ?

We've been trying to get the word out for about 8 years now.

Linda

P.S. thanks Mr. BBz :-*

Title: Re: I'm so confused.
Post by Pellsey on Feb 2^nd, 2007, 2:46am

on 02/01/07 at 22:38:52, Linda_Howell wrote:

Can you please let us know how she found out about us ?

:-*

No disrespect Linda but it might be possible that sleep counsellors get Cluster Headaches too.

I know that unless I wasn't a sufferer or knew someone that suffered i would have never found this site. I have to say though that since I did find it i've told heaps of people about it just so they can read "the devil" on the left hand link. Bloody cracked up when i read it, but i could relate so well.

Title: Re: I'm so confused.
Post by TonyG1 on Feb 2^nd, 2007, 6:32pm

on 02/01/07 at 22:38:52, Linda_Howell wrote:

We've been trying to get the word out for about 8 years now.

Linda

P.S. thanks Mr. BBz :-*

Linda - Off subject sort of but I saw links to OUCH and to here on webmd the other night ...

http://www.webmd.com/hw/migraines/shc29hea.asp#shc29hea-1711-cluster-headaches

Title: Re: I'm so confused.
Post by Linda_Howell on Feb 3^rd, 2007, 12:58pm

I have no idea why you would think I'd take your comment as disrespect. CH is so rare that the chances of someone in the sleep counselling business to have CH themselves and also treat someone with CH is even rarer I would think.

The reason I was curious is because more and more we are seeing cluster headache information being given out and heard about by others and that is a good thing.

OUCH-us as well as calouch and all of us indivually, have been doing great work in educating the public by talking to family doctors, printing off stuff to give to Neuros, making brochures to put in waiting rooms of dentists, eye doctors, medical supply facilities, ER, etc.

The fact that it is working and we are getting the word out is fabulous and the feed-back from someone who was referred by their counselor is proof of that.