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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Newbie With Some Questions
        
(Message started by: Sylvan on Nov 15^th, 2004, 10:17pm)

Title: Newbie With Some Questions
Post by Sylvan on Nov 15^th, 2004, 10:17pm

Hi All:

I introduced myself on the Newbie board this afternoon.

These headaches are very new to me - and of course - i'm praying that they stop as suddenly and inexplicably as they started.

I do have some questions. I've been reading the site and boards for the last day or two and am about 99% convinced that the headaches i am getting are in fact clusters and not migraines. I had migraines about 15 years ago - and they were a mere annoyance compared to this.

Here are the symptoms i am getting:

Sudden severe headache waking me from a sound sleep about 2 hours after retiring.

Unilateral pain above the left eye, with no vision problems or aura.

Eyes tearing, nose runing, innability to lie still - need to rock and keen and beg someone to shoot me.

Duration between 20-40 minutes.

Intensity (as per the KIP scale) 8-10. Last nights finally stopped as i was dressing to go to the ER. (BTW - i have a documented extremely high threshold for pain)

Few residual symptoms. Kind of a fuzzy shadow of a headache the next day.

I have had 3 in the past 8 days.

Had a neurological check-up today and checked out fine - except for elevated BP (160/90) Dr said that either the headaches are causing the elevated BP - or possible the elevated BP is contributing to the headaches. RX Midrin (as needed). Follow up in 2 weeks after results of CBC and other blood work.

I have been taking advil & feverfew until now.

I've also found some research on the use of cayenne pepper ointment (capsaicin) applied intra-nasally. Has anyone used this? And what type of preparation is safe and effective? Is it an OTC item or must it be home-made?

I've also seen mention of intranasal lidocaine. Is this effective? I have a huge bottle of aloe/lidocaine (for sunburn and external itch/burn relief) I somehow doubt that this is the right stuff to be shoving up my nose - but at this point - i'd try just about anything to stop the pain when it happens again.

Another thing that was recommended to me is cafergot. It's supposed to be some type of a mushroom preperation. I'm not sure where to get this though. Is it RX or from an herbalist. And is it effective? I don't think it's the same thing as the *magic mushrooms* i've seen mentioned here.

OK - enough questions for day one! Thank you all in advance for being here. This is frightening and i'm very glad to know that i am not alone with these headaches.

Sylvan

Title: Re: Newbie With Some Questions
Post by nani on Nov 15^th, 2004, 10:51pm

If you do have CH, midrin and advil won't help at all. Blood pressure often spikes during a CH. Haven't heard good things about the intranasal pepper treatment. I have no clue about the lidocaine or cafergot... Have you taken the cluster quiz at left? You should see a neuro that knows about CH... with elevated BP, your neuro should have considered verapamil, a blood pressure med used as a prevent for CH. Good luck...

Title: Re: Newbie With Some Questions
Post by Bob_Johnson on Nov 16^th, 2004, 9:12am

Has your neuro made a Dx of Clusters? IF yes, then his Midrin treatment really suggests he is out of touch with current treatments. I'd ask him, very directly, what he plans to do; what treatments does he use, etc.

Take a look under "medication" button (left) and see the reported experience for various treatments. The two items you mentioned are not very effective for most folks.

Cafergot is an old line med which is an Rx item. Generally, it's slow acting compared to other aboratives now available. Something to try if more current aboratives don't work for you but not as a first line product.

Explore this site:

WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.

Title: Re: Newbie With Some Questions
Post by Sylvan on Nov 16^th, 2004, 8:11pm

Thank you Bob & Nani:

I'm becoming convinced that i need to find a new doctor. This doctor told me that this "seems like cluster headaches - but probably is not "because you're a woman and women don't get clusters - they get migraines".

Unfortunately - the doctor i trust that i have been dealing with for over 20 years is moving to Virginia and this woman is her replacement at the group practice.

I've been making some calls and trying to find a new doctor in my area that is more current on cluster treatment and takes my insurance.

I have a follow-up appt with the Dr that is leaving a week from Monday and i hope to have found a new Dr by then so i can have all my records transfered at that time.

This is (of course) the worst possible time of year for me to be dealing with medical problems - I'm in retail, and all h*ll is about to break out next week. I normally work 60 hours a week and it's about to escalate to 80 for the next 6 weeks.

I have found out that a few people i know are also cluster sufferers and they are full of advice.

A few things that have been recommended to me today are as follows:

Sleep with only one pillow. ( I currently have several)

Don't spend so much time on the computer.

Go to a chiropractor.

Stop skipping meals.

The midrin is a bust so far. I had another headache wake me up at 3 this morning, and while it was not as severe as the prior three this week,(5 on the scale) it lasted about the same amount of time.

I also had a pretty bad headache today at work (10 hour meeting - lots of noise and stress) While it wasn't the excruciating type that i have been getting in the night - it was very uncomfortable. I would probably put it at no more than a level 3. The feverfew seemed to help a bit. I didn't want to take the midrin since i had to drive 2 hours home after the meeting.

Do antihistamines have any effect? The only sound sleep i've had for the past 10 days was on a night when i took an OTC antihistamine for allergies.

Thank You again for your input. Hope i'm not becoming a PITA yet :)

On - and yes - i did take the quiz. I scored only 1 yes in the first 1/2 and all 8 yes in the 2nd.

Sylvan

Title: Re: Newbie With Some Questions
Post by nani on Nov 16^th, 2004, 8:44pm

:-/Those friends of yours don't know much about CH...

Sleeping more upright rather than flat seems to help some nighttime sufferers.
As you can see- we all spend a lot of time on the computer...doesn't make a difference.
Chiropractors and accupuncturists cannot do a damn thing about CH.
Skipping meals??? What the heck does that have to do with CH.

Apparently these folks are in that vast majority of folks that think CH is "just a bad headache."
I'm sorry- do I sound bitter? I'm not sure I mean to.
Anyway- melatonin has been known to help some with nighttime hits. Look around on the boards for threads about it.
Your allergies could be triggering an episode. Find a dr that has a clue asap. You should only be treated for CH if you have a diagnosis. Good luck...

Title: Re: Newbie With Some Questions
Post by Sylvan on Nov 16^th, 2004, 9:49pm

Hi Nani:

I appreciate your input.

As far as my freinds - i think they are well meaning - but probably ill informed.

I am trying to get a definative DX - but this Dr seems hesitant to say anything other than "possible CH" I'm attempting to find another Dr ASAP. I doubt that i will survive xmas in retail with these continual attacks.

As for the skipped meals - that's probably because i get really cranky when i forget to eat - as i often do.

I think the computer reference was an attempt to connect the headaches with possible eye strain.

And thanks for the heads up on the pillow thing - I do find sleeping with a lot of pillows more comfortable.

As for the allergies - these HA's started about a week before the allergy attack. I just found it interesting that the one night that i had the sneezies and took the med - i had absolutely no headache. I'm considering taking some before bedtime tonight.

Can stress be a trigger? My work stress level has increased tremendously lately. To the point where i'm considering throwing away a 23 year career and starting over somewhere else.

Sylvan

Title: Re: Newbie With Some Questions
Post by nani on Nov 16^th, 2004, 10:46pm

Quote:

Skipping meals??? What the heck does that have to do with CH.

I humbly apologize for this statement. I have just been informed that it is, in fact, a trigger for one of us. I always associate it that with normal headaches, not CH. Mea culpa.
I cannot comment on your question about stress. For me, stress just makes a CH more annoying. To my knowledge it has not triggered CH for me. I'm glad you are working on getting another doc. Good luck and PF wishes.

Title: Re: Newbie With Some Questions
Post by marcelonyc on Nov 16^th, 2004, 11:24pm

Hey Sylvan,

I'm new to the board as well. I am exploring identifieing possible triggers which in my case could be highly stressful situations. What is confusing w/ CH is that if I find myself under an attack it is too late to try and backpeddle.
I think some of the key is to try to pay attention to some of the things I am doing now that are not only different than the norm but consuming a lot of my energy, like school. These are things i can control, however the change of season is beyond my control. As I remeber, the last attack I had was was exactly 2 yrs ago in Nov. Daylight savings??? The Equinox?? God knows but it is beyond me.

As for over the counter stuff the only thing that begins to come close to resemble a band-aid for the CH for me is Excedrin, but not much...Good luck in your quest. Have you looked at the OUCH website under their listings??