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kat_92

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Hey all. I’m new here. I just want to give a disclaimer that I have not officially been diagnosed with cluster headaches. My headaches started when I was 23. I am about to be 27. I have been to 4 neurologists and they either claim I have migraines or “neuromuscular headaches”. I do not fit any of those symptoms and have not responded to medications like Topamax and relpax (typical migraine meds). I am convinced I have cluster headaches but every doctor says no. My headaches never wake me up in the middle of the night. However, they persist all day long behind my left eye. They flare up at certain times of the day but the nagging pain is always there. I took a steroid for 5 days and it seemed to go away. Two days ago the pain started again behind my left eye after having one sip of red wine. I am very frustrated and losing hope. I do not have any autonomical symptoms that come along with this awful disorder. Just the constant same eye pain flare up. My first round of these pains lasted 3 months and out of no where I was able to continue with my life pain free for 2.5 years (drinking ect) 

im sorry for the long rant, but my frequent googling led me to this site. I am interested to know what you all think and whether or not you think this could be what I am dealing with. Any advice is appreciated 

 

kat 

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Welcome Kat!

Have they done a scan of scan during these work-ups? That is rather important to rule out other issues in the noggin. 

There are some lookalike headaches that a drug called Indomethacin that is used. If you experience relief, you have one of the hemicrania's. If no response, then look closer at CH. 

It you think about the pain that you describe, it would be referred to 'as I have constant pain there that is severe at times and then runs in the background and jumps with certain activities.' The hits are separate, but the shadow in between means that you in in pain all day, but with distinct period of pain escalation. 

Verap is normally the first med given , It is started at a low does and ramped up until the hits stop. Some CHers take huge doses to attain relief. Topamax is a secondary drug in the box. We often refer to it as Dopamax. It can make you feel really drugged up and still not provide the relief.

O2 is  the best abortive. Most doctors do not know how to instruct a patient on HOW to use it for relief. And it can be difficult to get insurance to pay for it. 

They do respond to Pred. You responded to the steroid, so there is that. You need a scan. And support. If you are female, they will, out of habit, throw you into the migraine box. 

Pred is usually given to provide relief while the Verap builds up in your system. It is a temporary med due to bad side effects. Verap is taken at anywhere from 240mg/day up to 940mg/day. It must be monitored for your heart function. 

 

Since you are pretty new to the CH world, I would not be concerned or held back by the fact you do not exhibit eye swelling, etc. Ch can and likely will, morph over time and you likely will get those little bits and pieces too. Early on, it can difficult to pin for some sufferers. 

If the O2 did not help. likely it was administered at at a low flow and without instructions on HOW to breath it. So, failure there may be sue to physician ignorance. A neurologist is not a headache specialist. If you can find a specialist and see them, you likely would get better info. I know, not always easy to do.  

There is a protocol many use here called the D3 Regimen. It consists of vitamins and aims to reduce inflammation. A large percentage of Chers  have attained pain free status with the alone. Just store variety vitamins and no script needed. 

ATB

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Thank you! 

I have had an MRI and everything is normal. I’m trying to rule out ch based on the fact that I do not have eye swelling or tearing. Is it possible that these headaches can start off mild and ramp up later in life? I am not in need of a serious abortive quite yet. They never reach past the pain of about a 3 or 4. That is why I’m confused. I am currently seeing a headache specialist. Appointment tomorrow. I hope to get better answers. Is the d3 regimen something I can do on my own? Which vitamins is it exactly? 

 

Thanks 

kat 

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I just looked into the Hemicrania headache you mentioned and it sounds just like what I am experiencing. It mentions that there is no remission at all with these headaches and I actually went over 2 years without any headaches at all. This and the fact that they have both come during the summer months led me to think I have clusters. 

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Welcome to the community Kat!

CH will absolutely morph over times and I've heard of folks who don't experience the autonomic symptoms.

So, in my opinion, what you're describing may or may not be clusters.  Do you know if your docs have ruled out occipital neuralgia?

Dallas Denny 

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They have not mentioned that. My pain sometimes moves to the right side of my head. From the moment I wake up I have a full nagging pain behind my eye and the back of my head. The pain is about a (3-4) all day long. During afternoon and evening it flares up. Never wakes me up at night. It was on the same side of my head a few years ago and lasted a few months with no relief. I’m sensing the same thing is happening now. I’m seeing a headache specialist tomorrow. I’m going to inquire about Hemicrania headaches and what you just mentioned. I asked about cluster headaches and they immediately said no. Barely let me finish what I was saying. I’m so frustrated. Thanks for the advice 

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