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        New Message Board Archives >> 2004 Posts >> Newly diagnosed....maybe
        
(Message started by: Reecy on Jan 12^th, 2004, 8:27pm)

Title: Newly diagnosed....maybe
Post by Reecy on Jan 12^th, 2004, 8:27pm

Well the docs are trying again to come up with a name for my headaches. I have been a chronic headache sufferer for more years than I can count, maybe twenty. In the meantime, I get headaches that act in some ways like migraines (duration) but don't respond to any migraine meds. They also act like CH in some ways, i.e. Horner's Syndrome, it is a constant pain (no throbbing), I am not phono- or seriously photo-phobic, quiet settings don't help and quite often docs think it is a sinus infection because of the pain location in my jaw and upper teeth. Also it can wake me up at night but usually in the middle of the night (2-3am) not right after going to sleep. It is always unilateral unless I am beyond all being and my face has gone numb from the pain as happened this last time.

But as I said, duration is the strange thing. My last and worst headache to date lasted 8 days (the pain ebbed and flowed but was still excruciating) before Prednisone helped take the edge off. Prior to the pain escalating to an ER visit, I had my regular chronic headache. I am still not pain free but I can function. Of course, right now I'm on percocet also. I'm also awaiting info from the insurance to see if they will cover O2. My ear also seems very full on the side the pain is on.

For all you CH'ers out there does this sound like CH or are they barking up the wrong tree again and do I need to keep looking? I'm tired of this guessing game but I really seem to be reaching a point where if we don't find something that works soon, I will wish my head to be cut off.

Thanks for putting up with my rambling.

Title: Re: Newly diagnosed....maybe
Post by Callico_Kid on Jan 12^th, 2004, 8:38pm

From your description I am not sure, nor could I diagnose, but I think it sounds like a definite maybe. ;;D I'm not poking fun really, we just develope weird sences of humor. My recommendation is to take the cluster quiz on the left side of your screen and check out the cluster traits.

I'm glad you found us, and hope you will be able to come up with an answer to set your mind at ease. I sincerely hope it is something else. Read as much as you can and feel free to ask questions. You cannot find a more caring group than this.

Jerry

Title: Re: Newly diagnosed....maybe
Post by jminmilwaukee on Jan 12^th, 2004, 8:41pm

Hey Reecy,

First off, sounds like some pretty crumby headaches you got there. I do not believe that we are talking clusters here by your description though. I am no expert (other than having them) as they can be different for different people. What brings me to this conclusion are several things. The numb face for one. I have not heard of the face becoming numb to the point of not feeling the cluster. THat would actually be a god send to most (not that your condition does not suck).

The duration is another thing. Most attacks come on strong and peak withing an hour or two to leave just as suddenly as they appeared. There is the shadow factor to be considered also. Do you get shadows or hints of the headache lingering in the background?

Does your eye swell and tear on the side you get hit? Does your nose stuff up and or run? Do you find yourself banging your head on the wall or with a phone from time to time?

You do not need all of these but some would indicate a possible cluster. Have your docs ever checked you for what I think are called Nose Splints? (a piece of cartlige boken and poking at your sinus).

Do know for sure but without a better description I cannot say for sure.

Let us know more about your condidition. Can you triggger a headache with Alcohol or MSG and such?

jmin

Title: Re: Newly diagnosed....maybe
Post by chronic_chic on Jan 12^th, 2004, 8:45pm

where are you going for headache treatment and diagnosis reecy? just out of curiosity? so many different types of headaches...it can be a very big stress and trial to find the right diagnosis and relief...i wish you luck.

~Lizz

Title: Re: Newly diagnosed....maybe
Post by Reecy on Jan 12^th, 2004, 8:59pm

I don't drink but yes I suppose that when I did drink wine it would definitely cause major headaches. But it's been such a long time that I don't remember. MSG? Don't have a clue. I know that Whoppers set me off big time. ;;D Don't know why cause I can eat chocolate in any other form.

Yeah duration is the big kicker here for me. That is why they always just figured I had drug resistant migraines. But now they are leaning toward CH. I just don't know. And the numbness could have been caused by a few things according to the doc other than the headache. I was taking a bunch of meds not the least of which was dilaudid.

But the great thing is that even if it isn't CH, I am glad that I've found a bunch of people who understand headache pain. It's very hard to explain to those who don't suffer it.

Title: Re: Newly diagnosed....maybe
Post by Reecy on Jan 12^th, 2004, 9:02pm

Lizz-

At this point it is my Internal Med doc doing the dx. I haven't been approved for the referral to the neurologist yet. Still awaiting through the insurance which is another big pain.

Title: Re: Newly diagnosed....maybe
Post by Ree on Jan 12^th, 2004, 9:08pm

Heyyyyyyyyyyy Reecy... first off I like your name... I'm Ree~~~ I am a Migraine sufferer... the 8 day one sounds to me like a migraine~~~ the rest could be cluster read read read and stick around.... love to you and good luck ree

Title: Re: Newly diagnosed....maybe
Post by chronic_chic on Jan 12^th, 2004, 9:09pm

ugh reecy...insurance is hell. i hope you get to see a neuro soon because they might be the best at helping you really get the right diagnosis. on achenet.org there is a list of some headache neurologists. don't know if that will be helpful to you or not!

best of luck

~lizz

Title: Re: Newly diagnosed....maybe
Post by t_h_b on Jan 12^th, 2004, 9:16pm

It is my understanding that nitroglycerin will trigger a true cluster headache.

Title: Re: Newly diagnosed....maybe
Post by chronic_chic on Jan 12^th, 2004, 9:26pm

t_h_b....here is some info on the nitroglycerin from Wolff's Headache and Other Head Pain....this chapter is strictly on clusters..

"Once a cluster period begins, individual headaches can, in many patients, be triggered or precipitated by alcohol and other vasodilators, notably nitroglycerin (Ekbom, 1968) and histamine. When in remission, i.e., between clusters, alcohol rarely precipitates an attack, thus, most sufferers will avoid alcohol as soon as a drink triggers an attack and will remain abstinent until the cluster is over. The mechanism whereby alcohol induces an attack is not understood. Nitroglycerin acts through its role as a source of nitric oxide, which leads to vasodilation."

Then a few pages later...

"Furthermore, nitroglycerin induces attacks of cluster headache that are indistinguishable from spontaneous attacks but does so after a latency of approxmiately 30 to 40 minutes following administration. The headache occurs well after the vasodilatory effect of the drug has resolved, and there is evidence that the provocative action of this compound may be related, at least in part, to activation of the trigeminovascular system (Faniullacci et al., 1997)."

Just thought I'd look it up in the diagnostic headache "bible" once you mentioned that. Curiosity about science always triggers me....hence the start of nursing school this summer! :)

Title: Re: Newly diagnosed....maybe
Post by Reecy on Jan 12^th, 2004, 10:01pm

Well I can tell you that they gave me nitro once when they thought they were treating a heart condition that ended up being GERD. The nitro set off the worst headache I have ever encountered at one instaneous moment. It was blinding. I'll never forget that. The other time I had a reaction like that is when I took an Imitrex shot for what we thought was a migraine. It set up an instantaneous blinding pain also.

Title: Re: Newly diagnosed....maybe
Post by TxBasslady on Jan 12^th, 2004, 11:36pm

Welcome to the board, Reecy

Hate to hear of your pain.

Just remember that you are not alone. There are great folks here that will listen and help in any way they can.

Hope you get the right diagnosis.... ;)

PF vibes,

Jean

Title: Re: Newly diagnosed....maybe
Post by cootie on Jan 13^th, 2004, 12:07am

Good luck Reecy.....am thinkin a neuro and the usual MRI stuff would be a good start and see what shows up if anything then go from there. Looks like ya got alot of painful crap ta deal with tho inbetween till ya can get to one........wishin ya to be PF soon and diagnosed properly Pam

Title: Re: Newly diagnosed....maybe
Post by Charlie on Jan 13^th, 2004, 12:20am

Sorry you had to find us. That they wake you up is a strong sign for me. Clusters hurt like hell for a period of time and then just seem to "drain" away until the next. At least that's how mine behaved. The severe pain doesn't last all day.

Good luck though and let us know how you're doing.

Charlie

Title: Re: Newly diagnosed....maybe
Post by amen on Jan 13^th, 2004, 6:10pm

Sorry you have to be here :'( But welcome. This is a great group that can give you lot's of support and information. I am not a doc but it sounds to me like you may suffer 2 different types of HA's. Hope you find some answers soon.
Have you taken the cluster quiz yet?

Title: Re: Newly diagnosed....maybe
Post by t_h_b on Jan 13^th, 2004, 6:25pm

Yes, chronic_chic, that's what I remembered. I wonder if there is anyone here who has to take NTG for their heart and how it affects their CH.

Good luck with nursing school. Sometimes it seems like it will never end and if you have to do one more care plan you'll quit but it's worth it.

Title: Re: Newly diagnosed....maybe
Post by BlueMeanie on Jan 13^th, 2004, 6:26pm

Reecy,

I'm not a doc, but to me, it sounds like you may have both CH's & Migraines. I believe some people do have BOTH. You're 8 day headaches could be typical migraines. The headaches you say wake you could be clusters. Are the clusters on one side only ? A CH that is at the TOP of the KIP scale will be soooooo painful you would have to jump around a scream !! There is NO laying down with a CH. Hope you find sometlhing that will work for you.

WELCOME.

Title: Re: Newly diagnosed....maybe
Post by River_Rat on Jan 13^th, 2004, 6:40pm

Welcome aboard Reecy, not much to add, that wasn't already mentioned above, good luck

NORM

Title: Re: Newly diagnosed....maybe
Post by cathy on Jan 13^th, 2004, 6:45pm

welcome aboard Reecy...anyone ever mentioned Trigeminal Neuralgia..? Hope you get things sorted out...let us know...

Cathy :)

Title: Re: Newly diagnosed....maybe
Post by Prense on Jan 13^th, 2004, 8:05pm

The combination of nitro trigger and symptoms excluding duration and numbness definately describes CH IMO.

I have had shadows last for long durations...not more than 6-8 hours though. Shadows are just like a CH attack that doesn't ramp up more than a 4 kip (my definition) I have come to appreciate shadows...it means no attack for me.

Absolutely, you could be facing more than one HA condition. Seems to me that you should be able to tell one from the other though...at least compared to an all out CH attack. I have never experienced any other pain close to that!

For me attacks ramp up very quickly...sometimes instantly. From no pain to excrutiating in just a few minutes. The attack typically ends in the same way.

Hopefully you get it sorted out...either way, keep us posted please!

Chris