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Topic: CH? (Read 1909 times) |
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Audre
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Hi! I’m Audre and I’m a 23 year old female that has been suffering from severe headaches for about the last 1.5 years. A few months ago I went to a new doctor (just got on county insurance and they specify which doctor I have to go to) and she says they’re migraines (I’ve been told that it’s a sinus infection, allergies, need my eyes checked, teeth checked or I’m just making it up or making it to be worse than it really is). I do not believe that what I have is migraines.
The headaches have gradually increased over the last 1.5 years, in severity and frequency. Now I have a 3-4 just about every day, almost all day long. The pain isn’t totally unbearable, but it’s enough to make it hard to function at times. The longest I can go without any pain is about a week. Most of the time my severe ones are at night, either before going to bed or a couple hours after going to sleep. Pretty much every night I’m woken up by the pain 2-3 hours after falling asleep. I have to get out of bed because laying down makes it worse. I’m usually crying hysterically, rocking back and forth in a chair, hitting my temple with my knuckles and pressing my palm against my eye/eyebrow. They usually last anywhere from 15 minutes to 2 hours. The pain is almost always on the right side of my head, at my eye, temple and sometimes going down to my ear. Every time I get a headache, my nose gets stuffed up on the right side.
I came across an article on cluster headaches from the Mayo Clinic, thought it sounded like what I have and took the article to my doctor. She said that she didn’t even consider it because it’s more prone to men than women and that she’s not giving me lithium.
She hasn’t referred me to a neurologist or anything yet (the only way my insurance will pay for it is through a referral from her) but we have been trying some medications. Tried Midrin which didn’t work, Imitrex was weird…it was gone for a few seconds, then it came back for 10 seconds, went away for a few seconds, etc. The one that seems to have worked the best is Maxalt but of course my insurance doesn’t cover it. She wants to also try Topamax (also not covered) and wants me to get x-rays of my sinuses because she still thinks it might be sinuses.
My question is, how similar are my symptoms compared to others who have been diagnosed with cluster headaches? Does it sound like that’s what I have? Should I be persistent about getting the referral to the neurologist? Should I pay an arm and a leg for the Topamax and Maxalt and see how that goes even though I haven’t had a job since the headaches began because of the severity of them? Also, do your friends and family treat you like you’re faking or over-exaggerating? How do you deal with that?
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Guiseppi
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Re: CH?
« Reply #1 on: May 19th, 2008, 2:08am » |
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Please print this response out for your doctor. ANY doctor who says only men get CH is 30 years behind the times. This board is full of women who suffer classic cluster headache symptoms. A doctor who will not listen to you, is a doctor who thinks they know everything. Dump her now.
I am no doctor mind you, but I'm betting the farm you have cluster head aches. Take the cluster quiz on the left, start keeping a detailed head ache diary. When they start, how fast they build, how high a peak they build to... ..(using the kip scale, also on the left)...how long the peak lasts and how fast they go away. The diagnosis in headaches tends to be in the details. Get to a different doctor, cluster headache requires an understanding, recently educated doctor who will listen to you.
For now, since you're getting the night time hits, try taking 9-12 mg of melatonin before going to bed. It's an over the counter supplement at health food and vitamin stores. Many can avoid the nite time hits this way.
Keep some energy drinks on hand, Rock Star, Red Bull, any containing the combination of taurine and caffeine. Chug one at the first sign of an attack. Many can abort or at least substantially reduce an attack using these.
Avoid alcohol for now, a major trigger for most cluster headache sufferers.
You're my youngest daughters age and it's just frosting my a$$ that the doc is poo pooing you on this. Get someone to help you if you have trouble standing up to doctor types. And let us know how it turns out, we're all hear to help you get this thing diagnosed and get you started on a decent treatment regimen.
Guiseppi
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Batch
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Re: CH?
« Reply #2 on: May 19th, 2008, 4:14am » |
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Hey Audre,
Welcome aboard, you've come to the right place. I see Guiseppi has already reached out to you. That's good as he has plenty of experience with cluster headaches and greeting new members to CH.com.
Getting a proper diagnosis for cluster headaches isn't easy. Cluster headaches are an orphan disorder with an estimated prevalence less than one-tenth of one percent (on the order of 56 to 70 per 100,000) so it's not unreasonable for most doctors and neurologist to fail in diagnosing the disorder. Most neurologists never see a cluster headache sufferer in an entire career so we do need to point them in the right direction.
Read through the info in the links on the left and be sure to take the cluster quiz. It will not give you a diagnosis but it will point you in the right directions and help you understand some of the symptoms as well as the terms used to describe them. Describing these symptoms as accurately as possible will help your doctor to diagnose your headaches with a higher degree of certainty.
If you are able to get a proper diagnosis for your headaches and they turn out to be cluster headaches, print out the folloing link from the Michiagan Headache & Neurological Institute (MHNI), Ann Arbor, MI.
One of the best strategies for treating cluster headaches comes from MHNI. The neurologists there have hundreds of cluster headache patients from all over the world coming to see then so have far more experience diagnosing and treating people with our disorder than most.
http://www.mhni.com/clusterheadaches.aspx#treating
If your doctor/neurologist gives you a regiment of treatments like shown in the link above... You're in good hands. We're all wired differently so there is no single course of treatments that works for all of us all the time. In fact, what works for you this year may not work next year... The beast is expert at morphing.
If you're still having problems getting a proper diagnosis, please let us know.
Take care,
V/R, Batch
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Audre
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Re: CH?
« Reply #3 on: May 20th, 2008, 3:16am » |
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Well I took the cluster quiz and my answers seem to coincide with cluster headaches. I read the Kip Scale...wow, that really describes the pain levels well!
Unfortunately I can't just go to another doctor. I'm pretty much stuck with the one I have because my "wonderful insurance" says that's where I have to go. The only way is for my doctor to refer me to a specialist. I don't think my insurance really recognizes headaches as a major medical problem, the only headache medicine they'll cover is Midrin. My doctor finally did get them to approve Maxalt for me, but I'm only allowed 9 pills a month so I'm stuck toughing out most of the headaches. I'm hoping that they'll approve the Topamax soon, I've been waiting for 2 weeks now.
What is melatonin? Does it have any interactions with medications?
I'm really curious how friends and family treat you guys. Right now I'm having a really hard time with some friends, one of which is living with me, believing me or believing it's as bad as I say it is. She gets upset because I don't want to go out drinking with her - I know first-hand that alcohol is a trigger. I'm not really sure how to help them understand the pain I'm going through and how after awhile it really starts to wear you down emotionally. Any pointers?
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Brew
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Re: CH?
« Reply #4 on: May 20th, 2008, 7:26am » |
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on May 20th, 2008, 3:16am, Audre wrote:| I'm not really sure how to help them understand the pain I'm going through and how after awhile it really starts to wear you down emotionally. Any pointers? |
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Yep. Click on this link, print it out, give it to them, and make them read it.
http://www.ouch-us.org/chgeneral/colleagueletter.htm
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debOUCH
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Re: CH?
« Reply #5 on: May 20th, 2008, 8:30am » |
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audre.................................i learned during my cycle who was a true friend, and who really wasnt.................figure it this way, IT'S THEIR LOSS.................hope u r feeling better...............
deb
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George_J
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Re: CH?
« Reply #6 on: May 20th, 2008, 8:53am » |
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on May 20th, 2008, 3:16am, Audre wrote:
Unfortunately I can't just go to another doctor. I'm pretty much stuck with the one I have because my "wonderful insurance" says that's where I have to go. The only way is for my doctor to refer me to a specialist. I don't think my insurance really recognizes headaches as a major medical problem, the only headache medicine they'll cover is Midrin. My doctor finally did get them to approve Maxalt for me, but I'm only allowed 9 pills a month so I'm stuck toughing out most of the headaches. I'm hoping that they'll approve the Topamax soon, I've been waiting for 2 weeks now. |
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Don't you love it? Insurance companies have become efficient money-extracting machines, accompanied by scuttling armies of benefits-denying minions. Pretty soon I expect we will be giving them all the money we earn, getting absolutely nothing in return.
As for unresponsive doctors, walking around with their heads up...well, nevermind. Stick around here for any length of time, and you'll hear plenty of that.
on May 20th, 2008, 3:16am, Audre wrote:
What is melatonin? Does it have any interactions with medications? |
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http://www.umm.edu/altmed/articles/melatonin-000970.htm
on May 20th, 2008, 3:16am, Audre wrote:| I'm really curious how friends and family treat you guys. Right now I'm having a really hard time with some friends, one of which is living with me, believing me or believing it's as bad as I say it is. She gets upset because I don't want to go out drinking with her - I know first-hand that alcohol is a trigger. I'm not really sure how to help them understand the pain I'm going through and how after awhile it really starts to wear you down emotionally. Any pointers? |
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Agreed with Brew about the colleague letter. I can't think of a better way to communicate to others what this stuff is like.
As for the "friend" who gets upset because you don't want to go out drinking....ask yourself this:
1. Is this actually a friend? Friends do not seek to increase your misery.
and,
2. No matter what sort of social pressure is exerted, would I choose to smash my big toe with a three-pound hammer, knowing that it's going to hurt like hell?
It's never been a major issue with me. In social situations, I simply ask for something without alcohol when I'm in cycle. Most times, people say nothing at all. If someone asks why, I just say that I can't drink right now. I may or may not give them a brief explanation, depending upon whether or not I want to.
As for family, well...they've all known I've had these "things" for so long, that they're used to it. It's just part of the deal. They know it won't kill me, even if they wear me down flat sometimes.
Best wishes, Audre, and welcome to CH.com.
George
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| « Last Edit: May 20th, 2008, 8:56am by George_J » |
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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tnpruby
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Re: CH?
« Reply #7 on: May 20th, 2008, 9:15am » |
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Hi there , poor dollie, I would dump this doc yesterday!!! I have had CH FOR 11 YEARS NOW, I AM
100% A WOMAN,but medical statistics do show men were diagnosed first and are at a majority of patients. Thats old school tho. I AGREE WITH OTHERS HERE WHOLE HEARTED! A log helps , I take the melatonin in hope for some sleep at night.You'll find it In the vitamin section of your local pharmacy, Also Oxygen helps as abortive, verapamil helps me, and Predisone. I am huge fan of Rockstar drinks and have two a day on hand and do chug at first sign of attack for the Taurine helps dercrease the attack. These are things that work for me , everyone here is different but the same if that makes sense. Yes push for a neuro, please dont give up on this , you can get better and hopefully go into remission, I am in a series for 7 weeks now, Everyone here knows and understands what your going through. Keep reading on this disease , knowledge is power. Also yes I have family members who dont know how to handle this disease and sometimes undermind what I have , but its no bat of an eyelash sort to speak. Its severe, debilitating pain. You need a reliable relationship with your dr. I have walked in my Neuro's office crying and I am taken seriously all the time. This is a terrible disease and you need help and understanding, not fluffed off, here take this attitude.
Keep us posted..........We are here....
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chefjohn
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Re: CH?
« Reply #8 on: May 20th, 2008, 9:26am » |
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Dear Audre,
Welcome aboard, sorry your here. You will find a wealth of information here as well as the most wonderful people you can imagine. For those of us with CH there are 2 groups of people in this world. Those that have it and those that don't. Everyone I met here talks about: Doctors that don't know, people that don't understand, not being able to describe the pain, etc. etc. In other words the only ones who truely know what you are going through are other CH sufferers. That being said I have found that it is my responsibility to find out as much as I can about CH and to educate others around me. You should read, read, read as much as you can. Ask as many questions as you want here...don't ever feel like you would be bothering somebody out here, its quite the opposite. Talk to people and explain it to them as best you can, get them to listen. I tell them it is like the worst ice cream headache, with an earache, numerous toothaches, a stuffed up sinus and then someone pokes me in the eye, Oh and by the way it lasts for 3 hours. But you must be proactive. You must do a lot of leg work yourself. If need be you must spend some of your own money to find the best care. You haven't mentioned anything about Oxygen yet. Have you tried O2 yet? You definately need to get a perscription for that. Bring as much info as yo can to your doctor and make her read it. If need be complain to your insurance company about her if you can't get satisfaction. You mght get someone who will listen. If your not working right now then you may qualify for some drug assistance programs. I was able to get a $250.00 Imitrex perscription for $10.00 by qualifing for a program from the manufacturer. Call the partneship for perscription assistance, they may help. Anyway good luck to you. Now is the time that your true friends will shine. Hope that our Pain Free (PF). John
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Audre
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Re: CH?
« Reply #9 on: May 20th, 2008, 6:00pm » |
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My insurance is through the county I live in, so I don't have to pay for it, but they don't cover hardly anything.  It's funny, they're a governmental insurance, when I first tried to get them to approve Maxalt, they told me to try www.freemedicine.com which is for people that aren't approved for governmental insurance. 
Right now I'm sitting here with a 5 kip, babysitting my friend's daughter who wants to talk with me and play but all I want to do is sit in the corner alone and cry.  The only medicine I have right now is some non-narcotic pain pills that don't help at all. Insurance won't approve of more Maxalt yet because it hasn't been a month since my last prescription. And of course they haven't gotten back about Topamax. No I don't have oxygen, haven't tried it yet. Unfortunately I don't see my insurance covering that either.
My family's been pretty supportive of me. They know that I'm not making it up, otherwise I'd be out with my friends and working. Not to mention, they know it's bad when I willingly go to the doctor's. My mom understands the pain and feeling helpless since she has fibromyalgia. It's mostly just a few friends that aren't understanding and one of them is hard to deal with because she's living with me so I can't just say "screw you" to her.
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