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        New Message Board Archives >> Jul-Sep 2003 >> Help me understand
        
(Message started by: silverbolt on Jul 21^st, 2003, 7:07am)

Title: Help me understand
Post by silverbolt on Jul 21^st, 2003, 7:07am

I have been getting these headaches since I was 14. I am now 21. I took a trip to the ER yesterday because I felt like someone was scooping the right side of my face out with a spoon. I have been diagnosed as having migranes, tension headaches and also nasal infections. But yesterday, the doctor in the ER TOLD me that it wasnt any of those. He told me they were Cluster Headaches. Only once in 7 years did anyone mention cluster headaches to me and that doctor told me that that wasnt it. This is the second time I have had to go to the ER in the last 2 years. I never get that bad thankfully but it just really made me upset that it took that long to figure out what was wrong with me. With in the last 3 years the doctors said that it WASNT migranes and they didnt know what it was. About a week ago I went to my doctor and she said that I was having muscle spasms. So obviously that wasnt it either. I have read a bunch of the info on this page and on this message board and it has help. I know this sounds bad, but I am glad that there are people that have the same problem I have. I really thought I was the only one who had this kind of problem. I am going to go the doctors today and talk to her about this and hopefully she will know what this is all about. I noticed that alot of people say imitrex works wonders so maybe I will ask her if that is possible. Since that is what they gave me in the hospital I know it works for now. They gave me maxalt and that stopped working so hopefully imitrex wont do the same. I am sorry for blabing on so much, but it is good to know that people who read this will know what I am going through for once.

Title: Re: Help me understand
Post by Bob_Johnson on Jul 21^st, 2003, 7:23am

Glad your found us. You face several problems, the major one being how few doctors understand cluster. One of the leading headache docs in the U.S. estimates that 40%+ of docs have poor training and little experience in dealing with them. DO NOT be shy about changing docs if you don't get good treatment; finding the right person is critical. (One bad sign is a doc who depends on pain medications as the primary treatment.)

Suggest you you buy one of these books. They will organize you knowledge and guide treatment more quickly than trying to patch bits and pieces together.

-------------
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. 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.

------
Can order from Amazon.com.

Title: you already do understand
Post by rumplestiltskin on Jul 21^st, 2003, 7:31am

You have the hunger and now you found the table....so eat.

...and yes...not being "alone anymore" is why we are smiling back at you.

den

Title: Re: Help me understand
Post by silverbolt on Jul 21^st, 2003, 7:41am

Its amazing that already with in 5 minutes after I post I already get some feed back. Thank you all ;D

Title: Re: Help me understand
Post by BobG on Jul 21^st, 2003, 7:48am

Amazing people here, huh silverbolt?

Welcome to the board. It's open 24 hours a day, 7 days a week.

Title: Re: Help me understand
Post by maggie_may on Jul 21^st, 2003, 8:02am

Hi Silverbolt!

You've found the right place. Many of us went though years of misdiagnosis before finding out we had CH. You're definitely not alone here :) We're always here if ya need us.

wishing you pfdans

maggie

Title: Re: Help me understand
Post by Ann on Jul 21^st, 2003, 8:21am

Wecome Silverbolt!

You are no longer alone. Welcome to the club of pain! Sorry you had to find us.

Misdiagnosis is too common and unfortunately part of the hell we go through. Print up information from here and bring it to your doctor. It may help you get what you need. You should perhaps discuss verapamil as well. It is the preventative of choice. As well as oxygen which is a lot more affordable and easier on your body than imitrex. Just some suggestions.

keep us posted and good luck
hugs
Ann

Title: Re: Help me understand
Post by don on Jul 21^st, 2003, 9:15am

Hi Ho Silver(bolt)

Welcome.

Quote:

But yesterday, the doctor in the ER TOLD me that it wasnt any of those. He told me they were Cluster Headaches.

Would you mid providing the location of that ER and the attending Doc that told you it was CH?

What did this ER Doc treat you with?

Title: Re: Help me understand
Post by silverbolt on Jul 21^st, 2003, 9:29am

The hospital was Brattleboro Memorial hospital. I didnt get his name. Which I regret now, but he treated me with Oxygen and Imitrex and with in 3 minutes the headache was GONE!

Title: Re: Help me understand
Post by hopefull on Jul 21^st, 2003, 10:50am

I was told at 18 they were migrains live with it ...I'm 46 and finally sent to a neurologist who told me last month it wasn't migrains but cluster headaches and they were over the last 3 years becoming chronic...Hang in there...if you can go to a neurologist...Going to the regular MD only got me what 28 years of hell...

Title: Re: Help me understand
Post by Gofishgriff on Jul 21^st, 2003, 11:06am

Welcome Silverbolt. You are among people who know what you're talking about now. I found it very frustrating to try an explain what is going on with these headaches to people who don't get them or have never heard of them. I'm fairly new here as well, and while the pain doesn't go away, it's a lot easier to take knowing these people are here going through the same thing.

Gofish

BTW, where did you pick up the 'BIG BADDA BOOM' in your signature? 5th Element by chance?

Title: Re: Help me understand
Post by silverbolt on Jul 21^st, 2003, 11:17am

Yup, BIG BADDA BOOM!

8)

Again, I just want you to all know, that now that I read almost ALL the information on this page, I can now go to my doctor and demand action to help me insted of just guessing. Thank you all again!

Title: Re: Help me understand
Post by Ted on Jul 21^st, 2003, 11:24am

There goes the Vermont theory. I guess coming from there doesn't stop people from gettting CHs.
Sorry to hear that for your sake, Silver.

Title: Re: Help me understand
Post by silverbolt on Jul 21^st, 2003, 11:30am

I wish that was true. :P

Title: Re: Help me understand
Post by don on Jul 21^st, 2003, 1:09pm

If you could get that Docs name and contact info it would be helpful. Thanks

Title: Re: Help me understand
Post by cathy on Jul 21^st, 2003, 1:23pm

Hi silverbolt, sorry you had to suffer so long undiagnosed, goes with the condition im afraid... :-/ still you found us now, and we welcome you in the fight for a cure, you couldn't be among a better bunch of people...let us know how you get on with the Doctor.

Don....this cow is in the way, what do you want me to do with it... ???

Cathy

Title: Re: Help me understand
Post by silverbolt on Jul 21^st, 2003, 2:59pm

Hey don I will call the ER tomorrow and see if I can get his info and I will email it to you.

Title: Re: Help me understand
Post by Charlie on Jul 21^st, 2003, 6:19pm

We're glad to have ya and glad you're getting some help from the board. More is added all the time. You've nothing but pain to lose by looking in.

Good luck and stick around.

Charlie

Title: Re: Help me understand
Post by don on Jul 21^st, 2003, 6:59pm

Good deal Silver.

OUCH needs to start recognizing the Docs who do the right thing.

Title: Re: Help me understand
Post by JDH on Jul 21^st, 2003, 9:18pm

on 07/21/03 at 18:59:03, don wrote:

Good deal Silver.

OUCH needs to start recognizing the Docs who do the right thing.

I agree, this guy sounds like the kind of doc we want on our side.
Can you imagine if they were all that quick to recognize a CH? Think of all the pain and frustration that could be prevented.

Jim

Title: Re: Help me understand
Post by silverbolt on Jul 22^nd, 2003, 7:35am

Well I called the ER this morning. The Doctors Name is Dr Dickson. And to my disappointment, he is a retired surgeon and ONLY works the ER. Well, I have an appointment with a new doctor today and I have a bunch of info that I printed of this page so wish me luck. :-/

Title: Re: Help me understand
Post by cathy on Jul 22^nd, 2003, 7:45am

Hi silverbolt, GOOD LUCK with the appointment, let us know how you get on...

Cathy :)

Title: Re: Help me understand
Post by catlind on Jul 22^nd, 2003, 7:59am

Good luck silver!!

Don't let some of the posts that are going on right now worry you about the board. We do know your pain, and after just finishing with the convention, we have gained some great ground in this battle.

A true clusterhead always has a place at the table in this family :)

There will be some new info coming up shortly as I get the info from the convention sorted out. If you are having any trouble getting the medications you need let me know :)

Cat

Title: Re: Help me understand
Post by don on Jul 22^nd, 2003, 8:21am

Thanks Silver.

Title: Re: Help me understand
Post by silverbolt on Jul 22^nd, 2003, 1:53pm

Well went to the doctors prepared and she said she didnt know much about it so she skimmed the info and prescribed me Imitrex nasal spray and Verapamil HCI. SO then she refered me to a headache specialist at dartmoth hitchcock hospital. Now I am just waiting to hear when that is going to be. SO I guess I finely have the ball rolling. The only thing is I am probably about half way through my cycle and by the time I see him it will be gone. Well I am going to get going and laydown. My head has been hurting since I got one of them this morning. Talk to you all later. Thanks for all the support!

Title: Re: Help me understand
Post by taraann on Jul 22^nd, 2003, 2:58pm

Hey SilverBOlt....Just wanted to say welcome and sorry you have this awful pain....and Hello neighbor...I'm in Meredith NH :)