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Topic: Help!! Why don't they understand (Read 472 times) |
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tsax03
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Help!! Why don't they understand
« on: Sep 12th, 2005, 10:58pm » |
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Hi, I'm new to this site. I'm a 20 year old female and although ch is rare in females. I have been having these headaches for over 4 years now. I just started a new cycle of headaches yesterday so I'm not looking forward to the next few months as that is how long they always last. I get the headaches 4 times a day one at 4:00am one at 10:30 am then one at 1:30 pm and then one at about 10:00 pm. I have gone to numerous doctors and they all think i'm am full of crap when I say i have cluster headaches. They always say it's a sinus infection or allergies. I am not allergic to anything and i know it's not a sinus infection. I have explained the pain to the doctors and I have even kept a headache journal. Right now these are so excrutiating I can barely stand it. I have nothing to make the pain stop or help the pain stop. I eat tylenol like it's candy. How can I make the doctors realize what is going on rather than just jumping to the conclusion its allergies or a sinus infection. Anyone have any suggestions please help.
Dana
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kimmeesue
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Re: Help!! Why don't they understand
« Reply #1 on: Sep 12th, 2005, 11:18pm » |
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Hi Dana,
Glad you found us, but sorry you need us. There is a wealth of information at the left of your screen. Many have found it helpful to print out the information and take it to their docs.
You are not alone. We have all been in your shoes at one time or another. I have gone through 2 neurologists and have found more understanding and willingness to listen with my PC. If your doc isn't listening, fire him and find one who will.
Wish I could send you a "get out of pain free" card.
Best wishes,
Kim
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BobG
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Re: Help!! Why don't they understand
« Reply #2 on: Sep 12th, 2005, 11:18pm » |
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on Sep 12th, 2005, 10:58pm, tsax03 wrote:| Hi, I'm new to this site. Hello Dana, Welcome to the board.I'm a 20 year old female and although ch is rare in females. Clusterheadaches are not rare in females. That is an old out-of-date myth spread by uninformed and under educated doctors. If you read this message board for a while you will notice the number of femals and males is about the same. I get the headaches 4 times a day one at 4:00am one at 10:30 am then one at 1:30 pm and then one at about 10:00 pm. Are you working or in school? At 4am you are probably in REM sleep mode. Do you get a break at work or between classes at 10:30am? And then a lunch break at 1:30pm? And are you completly relaxed at 10:pm? Please look at my tag line. I have gone to numerous doctors and they all think i'm am full of crap when I say i have cluster headaches. They all hate it when you self diagnose and you are right about something they don't understand. They always say it's a sinus infection or allergies. Sounds very familiar. We've all been there. I eat tylenol like it's candy. We've all been there also. The truth is, Tylenol won't help with clusters. Pain killer just don't work for us. How can I make the doctors realize what is going on Find a good neurologist.Dana |
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Kate in Oz
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Re: Help!! Why don't they understand
« Reply #3 on: Sep 12th, 2005, 11:19pm » |
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Dana,
I think I can appreciate what you're going through... I went for 10yrs being told its a tension headache. Thought I was going to go insane with the pain and no one believing me. I've been seeing a neurologist now for 5 yrs who begrudgingly treats me - he thinks women don't get them too.
Dana, keep looking till you find a doctor who will treat you properly... I need to take my own advice 
Best wishes to you - if all else fails try going to emergency department for oxygen ??? it may help. I really hope you find someone who can help you out cos you can't get through a cycle without something!! Geez I'm freaked and I've got a handful of pills and an oxygen supply in the bedroom.
Don't give up looking, take good care of yourself.
Kate
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tsax03
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Re: Help!! Why don't they understand
« Reply #4 on: Sep 12th, 2005, 11:24pm » |
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I work and i am in school. I don't have a class until 11 in the morning so usually i'm on my way to classes at 10:30 in the morning. At 1:00 i'm in a class which makes it horrible plus embarrassing when u have people staring at u wondering why you are pressing on ur eye or hitting urself in the head and why ur eye and nose are watering. And at 10:00 at night i'm usually either studying, watching tv, or messing around on the internet.... I want to thank all of you for your posts, they have been very helpful. I wish you all the same luck that you have wished me with this horibble condition. I am so glad I found this site you are all so very supportive and i thank you from the bottom of my heart
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BobG
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Re: Help!! Why don't they understand
« Reply #6 on: Sep 12th, 2005, 11:44pm » |
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Dang! The 4am and the 10:30pm part I got right. But missed on the other two times. Kinda whacked my theory in half. 
I hate when that happens 
Maybe you should go see a good neurologist and just ignore me (half the time).
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sandie99
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Re: Help!! Why don't they understand
« Reply #7 on: Sep 13th, 2005, 1:40am » |
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Dana,
I'm 25 and I've had ch since 2001. I have come across few neurologists who dare to claim that I cannot have ch because I'm a woman. But luckily for me, the first one (and no 1 in Finland where I live) diagnosed me correctly. Women do have clusters, no matter what some docs claim.
My advice: read lots about ch from this site and book a time to see a neurologist. But be aware that not all neuros know that much about ch - and the same goes to GPs. So the more you know yourself, the better. I've met docs who had no idea about the difference between regular migraine and ch, for one.
You'll find a lot information here about different medications. It may take some time before you will find medication which helps you, so don't get discouraged, if treatment doesn't work. There's always something you can try (I wish someone would have told me this in the beginning... ).
And recall to let your ch family know what's going on, okay? We're here to help you, cheer you up, listen if you want to vent. Welcome to ch family. 
Best wishes & PF days,
Sanna
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giffy76
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Re: Help!! Why don't they understand
« Reply #8 on: Sep 13th, 2005, 7:33am » |
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I have found that most doctors are idiots and only want paid. My family doc. has been great, he's the one that finally told me they were clusters and after numerouse neuros. that did nothing for me I found this site, with the knowledge of everyone on here I make suggestions to my family doc and he works with me. I'm not saying that a neuro would be a waste of time, deffinately go see one.
I take 1000mg's a day of Depakote er wich most people here don't get relief from but it works for me and when I do get hit I have my trusty Imitrex injections.
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marlinsfan
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Re: Help!! Why don't they understand
« Reply #9 on: Sep 13th, 2005, 7:45am » |
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Dana, you ask how can you make the docs understand, but have you been diagnosed with CH? Check out the cluster quiz on the left.
Get yourself a new neuro, too. And watch what you eat. When I first found this board, one of the first things I learned was that alcohol is a trigger for many. I'm no drunk, but I like to drink a beer sometimes, and I noticed that after every beer I would get hit. I stopped drinking completely during my cycle and most of my daytime attacks went away. I later found that I have some other triggers (chocolate, aspartame/equal, tomato, and a few others).
For nighttime, try melatonin. Some of us take 9 mg every night, 30 mins before going to sleep. It will take a week or so until it builds up inside you, but once it does it may cut down the frequency and intesity of your nighttime attacks. You can get it in your supermarket/pharmacy. In the Publix near my house, it's right where the vitamins are. I use Sundown brand.
If you continue to get the daytime attacks, try aborting with coffee/caffeine. I understand how embarrasing it is, it's happened to many of us. I have cans of Starbucks Doubleshot Espresso & Cream in my office, house, all over. I can chug one as soon as I feel it coming on and it will abort most of the time within 5 minutes. Some people use Red Bull, as it's loaded with caffeine, but because it has citric acid, it doesn't work for me.
Good luck and pf wishes.
Jose
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Mike_F
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Cluster what?
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Re: Help!! Why don't they understand
« Reply #10 on: Sep 13th, 2005, 9:32am » |
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Hi Dana,
I'm pretty new here also and let me tell ya, you can find a lot of help here. Just taking the survey will give you some ideas.
Coffee works great for a lot of people. Make it strong and put ice in it if you have to so you can chug it.
Read the waterX3 article on the left. It helps me some.
Many people swear by oxygen, but I haven't tried it yet as my cycle ended before I got around to it.
I'll also wear a frozen bandana on my head when I feel a bad one coming. (No, I did not say frozen BANANA) Tie it tight but be careful not to tie it too tight. What is too tight? I honestly don't know. Just soak a bandana in water and throw it in the freezer. I keep two in there so I can rotate them for long hits.
You should read up on Kudzu also.
That's all stuff you can do without a doc. (you can get O2 at a welding supppliy store). Like everyone has said, keep looking for a doc until you find one who knows about CH or print out some material to take with you.
Glad you found us, but sorry you had too.
Mike
P.S. I used to keep a headache log also, but it got so depressing that I quit. 
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Bob_Johnson
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Re: Help!! Why don't they understand
« Reply #11 on: Sep 13th, 2005, 10:07am » |
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You are not alone, clearly, but many doctors go through their careers seeing obscure conditions for which they have neither education, training, or experience. That we protect ourselves by seeking another is our major defense.
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Headache. 2000 Oct;40(9):730-5. Related Articles, Links
The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey.
Klapper JA, Klapper A, Voss T.
Colorado Neurology and Headache Center, Denver 80218, USA.
OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen.
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BMoneeTheMoneeMan
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Re: Help!! Why don't they understand
« Reply #12 on: Sep 13th, 2005, 11:44am » |
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Sorry you are just entering a cycle.
Stop taking pain killers. Pain killers will make you have rebound clusters, and wont help at all. Almost everyone here OD'd on advil, tylonol, asperin, excedrin....the whole list, including prescriptions like vicodin and percoset. DONT TAKE THEM, THEY WILL HURT YOU.
Also, avoid alchohol. It seems to be a trigger for quite a few.
Go to your local pharmacy and get a big bottle of melatonin and an allergy med that contains DYPHENHYDRAMINE (benadryl) Take 6 to 9 mg of the melatonin, and 50mg of the allergy med 1 hour before bedtime.....before you lie down. (taking the med and lying down in bed immediately prevents the meds from getting into my system well. so i dont lie down FOR an hour). This might give you some relief, lots of people here do this.
In addition to this, get a new doc, and insist that he or she prescribe whatever you want for the CH. Oxygen and Imitrex are probably the most popular abortives, and verapimil is a popular med to take daily to try to prevent you from getting the CH cycle in the first place.
PF wishes
GL on getting sleep.
BMonee
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bnfreeman
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Re: Help!! Why don't they understand
« Reply #13 on: Sep 13th, 2005, 4:11pm » |
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Sorry to hear you are having a hard time. Many of us have been misdiagnosed or not at all. I went through 5 doctors before I found a good one. And after seeing him for 5 months I finally have some relief. I went to a headache specialist. Everyone is different. It's not easy, especially when you feel like crap. Stick around and read all you can so that you can go to your doctor and offer suggestions. And if they don't listen, then SCREW THEM. They have to listen to you! Don't take any crap.
Good Luck!
Brandi
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arloweangel
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Re: Help!! Why don't they understand
« Reply #14 on: Sep 16th, 2005, 11:31pm » |
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My husband had to go to the ER near where we were living at in Florida at the time before he finally found out what it was. FYI if you don't currently live there, don't move to Fl. The doctors down there don't have a clue what they're doing. My only suggestion (short of a trip to the ER) is to call your local hospital. Most have a doctor referral line that you can get a referral for a neurologist. Most general practicioners can't diagnose something like this, but a nuerologist is your best bet. Find one that's somewhat young, too, since most "older" doctors don't keep up with new research and whatnot.
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marlinsfan
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Re: Help!! Why don't they understand
« Reply #15 on: Sep 17th, 2005, 2:45pm » |
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on Sep 16th, 2005, 11:31pm, arloweangel wrote:| My husband had to go to the ER near where we were living at in Florida at the time before he finally found out what it was. FYI if you don't currently live there, don't move to Fl. The doctors down there don't have a clue what they're doing. My only suggestion (short of a trip to the ER) is to call your local hospital. Most have a doctor referral line that you can get a referral for a neurologist. Most general practicioners can't diagnose something like this, but a nuerologist is your best bet. Find one that's somewhat young, too, since most "older" doctors don't keep up with new research and whatnot. |
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Sorry, but I disagree. My neuro in Hollywood, FL is well versed on CH and most definitely knows what he's doing.
I can come up with good reasons not to move here, but bad Drs. is not one of them.
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