I think my headache was misdiagnosed...Help

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New Member

Date Joined Sep 2011
Total Posts : 2
   Posted 9/12/2011 6:10 PM (GMT -6)   
I have suffered from headaches for about 8 years now, and no one seems to be taking it seriously. I am not looking for an official diagnosis, but I'd like to know if there is really something wrong with me, or if it's all in my head (no pun intended). I don't know if this is connected, but about 8 years ago, I had an incident where I was ice skating and fell backwards, hitting the back of my head on the ice. It was not treated beyond the ice pack that the skating rink staff kept on my head for a few minutes. I had blanked out and could not remember things like my address, phone number, etc.

Over the years, my headaches have made it increasingly difficult to concentrate. It used to be most difficult to study and concentrate on class lectures in school, as well as understand the concepts taught that seemed simpler for my peers, so I thought at first that maybe I was just becoming generally stupid. However, over time, it has now become difficult to pay attention to conversations with friends and family, and I have to pretend I'm paying attention to and remembering what they're saying. I feel like my speech does not come out as clearly, and in terms of my vision, sometimes everything seems to become much brighter, but foggier.

My head always hurts; there is no moment when it doesn't. However, sometimes it is dull enough that I can just live with it, sometimes it is painful enough to keep me from concentrating even more so than usual and I am more tired, and sometimes it is so bad that I can't bring myself to do anything; at this point, even doing something like watching TV, I'm not really paying full attention. As for the kind of pain itself, it varies as well. Usually it's an overall ache, but it can progress to greater pressure, then throbbing, and moments when I feel a sharper pain that lasts a couple of seconds. It is mostly on my right side, but spreads to the whole head sometimes, and I have neck and upper back pain. There are two bumps I can feel on my skull, one on the top right just below my hairline, and the other on the back of my head toward the left, if that means anything.

Lately, it's been more difficult than ever before. I no longer talk to most of my friends because I simply don't feel up to it. Social situations in general make me anxious, and I don't like talking to people on the phone because I know it will be difficult to keep up with the conversation. I still can't concentrate on class lectures, and I'm in college. I have thoughts like maybe it's not worth living if I have to live like this anymore, but I've never been able to wholeheartedly act on it. My parents think I'm exaggerating or overreacting, and it took 5 years for them to agree to do something about it. We told my doctor, who happens to be our family friend, and she finally arranged for a CT scan, and then she told us that it indicated that I had a sinus infection. She put me on antibiotics for two weeks, and that was it. The headaches are still here, but I don't tell my parents about them often anymore because I know they won't help. Since I live under their roof and their rules, I can't do anything without their permission, so I can't see a different doctor.

I don't feel like I'm living anymore, more like I'm just existing. Is it just me? And if not, what can I do?

Violet Rose
Regular Member

Date Joined May 2011
Total Posts : 48
   Posted 9/13/2011 12:39 AM (GMT -6)   
Firstly let me assure you its not just you, everyone who visits this board regularly, myself included, has felt as some time or another totally alone in this :) it was such a relief to me to find this place to be able to vent a bit, share thoughts ect and just know there are others that go through this everyday and know what its like to live with.
I read your post and can totally sympathise, I know what its like to be in some degree of pain 24 hours a day.  I also know how it feels to want to shut yourself away from friends/family just because it hurts to talk or even try to concentrate sometimes! All those feelings are normal when you suffer with migraine daily.
You didn't mention your age or location but if you are over 18 I would strongly recommend finding your own doctor/neurologist maybe without your parents help.  It certainly sounds like maybe some kind of preventative medication may be helpful to you.  These don't help everyone but for some they work wonders.  Also over the years I have found that certain foods are my triggers, learning to identify your triggers is a major part of controlling migraine.  If I am extremely careful with diet and lifestyle and can have some pain free days from time to time rather than the continuous cycle of pain I usually experience!
Be kind to yourself :) I have long given up expecting people to understand or have much sympathy.....after all to a non migraine sufferer we have 'just a headache' right? turn    I have found that the only people that have genuine understanding and sympathy are my fellow migraneurs!!
Best of luck to you

New Member

Date Joined Sep 2011
Total Posts : 2
   Posted 9/13/2011 6:50 PM (GMT -6)   
Thank you so much for your response. I am 21 years old. I have of course strongly considered seeking medical help on my own, but I don't know how insurance factors into it. Since I am under my parents' insurance, don't I need to go through them?

Violet Rose
Regular Member

Date Joined May 2011
Total Posts : 48
   Posted 9/14/2011 3:22 AM (GMT -6)   
well I'm from the UK so I'm not sure how the insurance system works in other countries as we get all our medical care free.  Maybe make another post asking about this there are many others on here who aren't from the UK and face the same problem :)  Sorry I can't be of more help confused
Stay strong!

Veteran Member

Date Joined Jan 2006
Total Posts : 1308
   Posted 9/14/2011 1:38 PM (GMT -6)   
Hi Rish,

So sorry to hear about what has been happening to you. Bless you for being so respectful to your parents acknowledging that you have to live by their rules whilst you are in their house. But, somehow you need to get through to them that this is not going away, and although you appreciate the help they have given you so far, you really need to see a Doc who knows more about headache.

I work on a headache helpline here in the UK, and had you phoned my helpline telling me what you have stated in your post, I would strongly urge you to see a Neurologist who specialises in Headache (Headache Specialist). It sounds to me that you may well have had a sinus infection but it is not the cause of your headache.

There are many different types of headache, some quite common, and some rare ones. Most Neurologists do not know a great deal about headache as they deal with many different Neurological disorders (mainly epilepsy). The best Neurologists to see are the 'Headache Specialists' as they have studied headache in great detail.

Now, you may have to travel some distance to see a Headache Specialist but it will be well worth it. While you are waiting keep a Headache Diary of what level your pain is using a score of 0 - 10, 0 being no pain at all and 10 being the worst pain ever!! When you do get to see the Headache Specialist this will help them enormously to diagnose what the problem is for you.

Hang in there, I sympathise with you as my parents did not believe I was suffering when I was a teenager and I was in my 30's before I was formerly diagnosed with Migraine and then I was 54 before they found out I had a very rare type of headache aswell!!!

Let me know how you get on.

take care

Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn
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