Hi everyone!

I'm very new to this community and kind of new to this terrible headache. I'm going to tell you my story how this happened and how I experienced the first few months. But first of all I want to tell you something that has been bothering me.

You see, I'm not very sure I have got the correct diagnosis. I would be really happy if some of you who experience this to tell me if the doctor is right. She has never felt this and I don't know if I overstate the pain I feel. I suffer from most of the symptoms I have read on the internet, such as the pain localized right above my left eye, runny nose, small pupil on the left eye, seizures in periods of 1-3 months and more. Sure the pain I have when I get a seizure is horribly intense but i can't imagine it being as horrible as some of you describe it. The doctor who gave me this diagnosis has decades of experience and is a consultant of neurology at the largest hospital in northern Sweden. I don't doubt her competence at all, but what if my threshold of pain is extremely low and everything I tell her is because I am weak. I just can't get this thought out of my head. I would really appreciate if some of you could say what you think.

This is my story.
In November 2009 I promised my new girlfriend, Elisabeth, to help her move to a new apartment. We had met just a month or so earlier. This was the first time I was supposed to meet her older brother. We both went to the same class in university and at 5 pm I promised to meet her at her old home. At 3 pm I was home from a hard days studying and at 4 pm something terrible happened. I had never felt this way before. It felt like something started to squeeze right above my left eye, inside my head. It was increasing and increasing. First I was sure it would be gone after 15 seconds, but it kept increasing in magnitude. I lay down on my bed pushing my both palms on my left side of the forehead. I kept waiting for it to disappear but I didn't. After about 10 minutes the pain was stabilized but so intense and so intrusive. I had never felt this way before. I knew what to do, I had to call Elisabeth and tell her I couldn't help her because I had a headache. I knew that it would sound like, but that was not what I worried about the most. What bothered me was how I was supposed to have a conversation with this girl in this condition. Somehow I managed to play cool and she told me that she understood the situation (I know she did not at all but I couldn't expect that from her).

After about 4 hours the pain was gone and a felt kind of paralyzed in my left side of the face. I didn’t know how to explain this to her the next day and I didn’t have to that either. The following time I had seizures like this 1-2 times a day, 2-4 days a week. If I had a seizure one day in the morning I was most likely to have another in the evening. I didn’t (and still don’t) have seizures at all during the nights. My wonderful girlfriend understood me more and more and she had all forgotten the first thoughts when I told her I couldn’t manage to help her out and meet her older brother.

The day before New Year’s Eve I had a really strong seizure and Elisabeth convinced me to go visit a doctor.  I was afraid to hear what the reason of the pain was. My first guess was a brain tumor and luckily they told me it was something else, they told me there is something called cluster headache but that it is very unlikely. They gave me some painkillers but it didn’t help at all. I kept eating the maximum dose every day for one more month until I met some other doctor. He gave me something called Immigran and something more that was really bitter. He told me I probably had some infection inside my sinus cavity. None of the two new medicines worked at all. I got a remittance to the neurology section of the hospital and they told me that I have got cluster headache but just to be absolutely sure I had to do some kind of X-ray of my head. Nothing could be seen there and they gave me the diagnosis I have today. Elisabeth helps me out really good, and she takes care of me when I feel bad. Today I take some medicine called sandomigrin, 1-2 pills 3 times a day. It does not stop an attack but it feels like the attacks are less intrusive when I take these pills. When I think back on this period (about three months) it's all a blur. I couldn't even remember what I and Elisabeth had for dinner during the celebration of New Year's Eve when she told me. All I remember of importance is that I was home and that I was in pain for some time.

The worst period was just before I got this diagnosis. I didn't study at all because I feared going outside of my apartment. It was unthinkable to have an attack at the university. I can't imagine how horrible it would be to feel that way in front of every person I know there. I am studying for a master of science in technical physics and engineering, and it is quite a demanding programme. It was really hard to convince everyone that I couldn't keep up with the tempo and needed to do this year of studies one more time. My mother couldn't at all understand why I had to this. She buyed me a pair of glasses in case that my eyes was the problem. She told me to sleep more and, don't listen to music that much. I know she did all this and asked all these questions because she cares. She didn't understand at all, and I think she still does not.

It is very hard to describe how I feel but I will do my best.
When I’m about to have a seizure I know it about half an hour before it kicks out. It feels kind of numb and with a varying tense feeling behind and above my left eye, reaching towards my left ear. About fifteen minutes before the attack the tense feeling stagnates in a monotone and slowly varying and pulsating pressure. When the pain has reached its maxima I am very sensitive to light, I don’t want to talk or scream. I usually feel nausea but not so much to throw up or anything. I also find myself very restless, sometimes I really have to walk and sometimes I find myself walking in circles. Even though I do hate being still I sometimes want to be in my bed with a pillow over my head. I want to push back on the pain with my hands. My left pupil is almost always smaller than the other when I have a seizure. My left nostril becomes blocked and I have trouble thinking about anything else than the pain. Sometimes it works trying to sleep and if I manage to sleep I usually wake up 3-5 hours later kind of rested but still it does not affect my sleep pattern. It seems I need to sleep a lot more when I have this kind of attack. I think it is very frustrating that I can't plan my my days while I'm in a period like this, it makes me feel unsecure and vulnerable.

What makes me question my diagnosis is that people with cluster headache seem to have most trouble during the night when I never have an attack during the night. I can also think of a lot worse pain than this. When the doctor asked me how much pain I feel on a scale from 1 to 10 I said 7. But now I guess it is probably 5 or so. Cutting a leg must hurt many times more (I guess). The pain I feel during an attack could be much more intense, it feels like there is potential for this kind of pain to be even greater. It feels like when the pain is stagnating it stops and becomes stable before too early to be cluster headache. When I read your stories I think that my pain can't even be compared with how you feel.

Please tell me. Is it possible that my symptoms are because of cluster headache? Is it possible that I will feel more like you after some years? Is it possible that I complain about nothing and really should get myself together and stop disgrace people that actually have big trouble dealing with this?

As Brew said, we're not medical doctors so we can't do the diagnosis work, that bit is in the hands of doctors with full access to your medical results, history and all the training they get.

Don't stress too much about symptoms not matching exactly, like not getting the attacks at night, I too get 99% of my CH during the day. Similarly it is very common that CHs at first just don't quite follow the standard symptoms perfectly, sometimes taking months or even longer to build up to the standard symptoms.

OskarT wrote on Jul 13^th, 2012 at 7:06pm:


Yes, if you've got CH then having the ability to abort them rapidly with oxygen is totally worthwhile to ask for as it is totally life changing in how well it works.

The other thing to consider, if it is CH, it ALWAYS comes back again, I've had remissions of up to 2 years, always convincing myself THIS TIME it was gone for good! And there is always the possibility you could morph into 8, 9's and 10's on the KIP. I would definitely get rigged up with oxygen and get proficient at using it. I hope it never morophs into those dreaded KIP 10 slammers, but its best to be prepared. We see too many people on the board who wait until ther are in crisis mode, getting slammed multiple times daily, to then try and set up an adequate treatment program.



Joe

It sound like a good idea to ask for oxygen then. Even injections might be an alternative  if it gets worse. If my CH morphs into KIP10 it would be good to be prepared.

Just now after I considered the KIP scale to the left it sounds like my worst siezures might be KIP7 not KIP5 as I described before. And yes, the headaches comes in cycles and every now and then i get convinced that it is over for good, but it always comes back .

Have you noticed an increased chance to enter a new cycle while traveling? The reason I ask this is that almost every cycle I've had started with a travel, not long but still a travel. Now I have some trouble with CH again and it all started with a travel by train for 4 hours two weeks ago. It has also happened with bus and airplane.