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michq

Doctor says I have cluster headaches, I'm not quite sure

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Half a week ago a pain behind my left eye started along with a fever that comes and goes. I also have a headache that makes it difficult for me to do anything but not unbearably painful as I've seen cluster headaches described. I thought it was a migraine and went to the doctors for a covid test to be safe because of my fever and he said my left eye was red and I showed all the symptoms of cluster headaches. He then prescribed me with Tylenol #3. However, I don't think I have cluster headaches because the pain is constant and tolerable and I have not read anything about fever as a symptom. Is this a misdiagnosis or perhaps because it is my first one it is not as painful? Any help is very appreciated, I have not been able to find answers anywhere.

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It's going to take some more time and data to know for sure. Cluster headaches can vary in pain from not too bad to horrible. People in major pain can get hot and break into a sweat but not maintain a fever. I drip in sweat sometimes. Study a list of the major symptoms and keep tabs on it, in the case of cluster headaches you will know more than your doctor. All they can really do is listen to your words and make a diagnosis.

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You are right, constant pain is not really a symptom of CH, and you are right -- usually the pain is not as mild as you describe it.  Aside from the red eye, it's hard to know why that doctor concluded that you have CH, and even harder to understand how given that diagnosis, his prescription was an opioid, when opioids typically have no effect on CH.  As xBoss said, there is often sweating along with CH, but not necessarily fever. Aside from that, it all makes sense:o.  Here's a list of typical CH symptoms (in addition to the severe pain): "Cluster headache attack is accompanied by at least one of the following autonomic symptoms: drooping eyelid, pupil constriction, redness of the conjunctiva, tearing, runny nose and less commonly, facial blushing, swelling, or sweating, typically appearing on the same side of the head as the pain. Restlessness (for example, pacing or rocking back and forth) may occur. Similar to a migraine, sensitivity to light (photophobia) or noise (phonophobia) may occur during a CH. Nausea is a rare symptom although it has been reported. Secondary effects may include the inability to organize thoughts and plans, physical exhaustion, confusion, agitation, aggressiveness, depression, and anxiety."

  As xBoss also said, since there's no objective test for CH (MRI or that sort of thing), you'll want to monitor your symptoms.  If things persist, you ought to get to a headache center for the greatest likelihood of a competent diagnosis and treatment (you might consider making an appointment now, since the wait to see a doc is often quite long).

 

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Thank you both for taking to time to reply and for the good advice. I'll keep track of my symptoms and hopefully things will make sense!

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@michq 

hey welcome to the forum. You’ll find the most helpful advice and suggestions on this site. I would keep a headache diary. Everything you eat or drink, if you get a headache, at what time, how long, variations in pain. Cluster headaches tend to form a pattern, so if you start to see a pattern you might be able to confirm a diagnosis. I have had constant pain myself 95%) of the time behind my left eye. Every day since last July. There have BARELY been days I am without pain. The pain is tolerable, I can sleep through the night. It’s usually always during the day. But cluster headaches can change over time. Become worse, change times, time of year, etc. look into the d3 regimen. It’s something you don’t need a prescription for. You can get  ahead. 

Kat 

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Thanks Kat! A diary is a great idea, I'll definitely be doing that. Really helps to know the constant pain does happen. I'll look into d3 for sure, the opioids don't really help which lines up with what CHfather said. 

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Hi michq,

...all the good stuff above!...

....fever and headache two of Covid symptoms...so wise to test...assuming you were negative...

...body temp regulated by the hypothalamus, a wonky one thought to be the center of CH issues, but i do not recall anyone reporting fever..... buckets of sweat yes

....has an MRI/CT scan been proposed?....often used to rule out other issues mimicking CH...

....CHf list took me down memory lane.....have had all but one of those symptoms but initially only 1 for the first yr...the diary idea is really great...

...the advice re a headache specialist really important if this continues....the tylenol #3 a red flag UNLESS the doc is using as diagnostic tool (if it works unlikely to be CH)...

best

jonathan

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From the brief info provided and given there is always more to any story, I would suspect you are having some sort of sinus issue.  Fever is not common with clusters although temperature intolerance is pretty common.  Its possible to sweat and chill without any core temp changes while in cycle.  As mentioned by others its believed the "wonky hypothalamus" is playing a role.

Others have provided accurate perspective for you to consider.  Other than the unilateral behind the eye pain not much else fits with clusters based on what you report.

Hopefully you will find an explanation that is easily treated and  never returns.

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