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New with questions, and possibly misdiagnosed

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Hi all,

First off I'd like to start with apologizing for anyone that I'm offending with taking guesses at self-diagnosing myself. But I'm looking for some insight and opinions from everyone related.

I'll start with my questions, and follow up with my story below (it's long!)

1) How did your first CH come about? For those with episodic CH, do you have any warning signs or symptoms that happen when you're about to come off of remission? And if you do, how long or quick are those warning signs before they hit?


Last year, in March 2017, 5 days after I got married - I went to urgent care and the E.R. for sudden dizziness and slight numbness in my arm. Blood work and tests showed everything was in the clear and I was okay. From that day onto repetitive days over the course of a month or so I had abnormal dizzy spells along with random spouts of slight numbness to other odd symptoms. These symptoms made me more stressed than previous stress I had already had and I constantly felt uneasy thinking something serious was wrong with me (beginning of anxiety which I never before so was unaware of the feelings attached to anxiety).

Fast forward to May/June 2017 I had my first panic attack with choking sensation which led me to the E.R. because my husband nor I have ever seen or felt myself in that case of before. They put a camera down my throat found nothing and then put an IV in me with Ativan to relax me then sent me home with a few Ativan pills and pain killers (for constant neck pain) and officially diagnosed me with anxiety. Later that night my husband and I took it easy after the eventful scare and put on a movie, I passed out on the couch with a pain killer that I took. Waking to go to bed after passing out on the couch, I woke up with the most severe head pain I've ever experienced! I couldn't do anything since I had just taken a pain killer so after holding my head in pain I let it pass and went to bed.

Following up after that night, I started getting the most unbearable headaches I couldn't have ever imagined before having them. Half of my head (left side) would feel like it was about to explode and during so I would have excruciating pain behind the eye on that same side (left). As I recall, this pain would last anywhere between a couple minutes to 20 minutes. It was hard to properly time since they felt longer. I wouldn't be able to sit still through it calmly and would sometimes hold my head while sitting down along with moaning and/or crying over the pain at the same time.  After this 'attack' like feeling was over my left eye that was in pain would be all watery like it was crying way more than the other(not droopy though). I would also have a little bit of an instant runny nose from that side of my faces nostril.

I would get these 'attacks' once-several times a day unexpectedly and they would take over my life. I spent time in between not wanting to leave my house because I was either too sensitive to the sunlight (and I love being outside and the sunlight) or because my fear/anxiety paralyzed me in a way to not partake in anything normal me would want to do. I was even on a break/disability from work because I was also getting my tonsils out during the time period. (which was another whole story and level of pain which was still more tolerable than these 'head attacks').  I of course would look everything up on the internet which led me to diagnose myself of having cluster headaches. Just like a zodiac sign and having anxiety along with this every symptom felt like it matched me to diagnose myself as that.


Soon I would finally have a long awaited appt. to see a neurologist. (July 2017) She dismissed the idea of cluster headaches immediately without any further thought and said that CH is different and I don't have that and went straight to diagnose me of having occipital neuralgia along with TMJ. She said that the headaches I was getting were 'flare-ups' from the Occipital Neuralgia. She also prescribed me a low dosage of Nortriptyline (anti-depressant) to slightly increase throughout time for my nerves to 'calm down' and help alleviate the pain. I never increased it by much and stuck to the lower dosage because I dislike taking medication unless I really need it.

Around being 'diagnosed' with Occiptial Neuralgia and reading up about it, it gave me tons of relief anxiety wise and shedded off a lot of fear for other things. Also at the end of Aug 2017 I had quit one of two jobs I had that brought me TONS of stress. A job that I was told by many of my friends and my husband that I should let go and that the cons over-weighed the pros significantly. 

I should also add that before these 'attacks' I already had severe neck pain that came throughout the day all days for the last couple years or so that I could remember. A chiropractor learned my history and linked it to a minor car accident I had when I was 16 or 'growing pains' or being a gymnast as a kid/teen. There were MRI tests of my head and neck that showed no signs of anything in my head other than a small pineal cyst which they said is not likely to be causing any symptoms nor is a sign of danger. The cervical MRI showed mild degenerative narrowing and 'dynamic anterolisthesis of C2 on C3'.  With all of that info I was also prescribed to a few months (Aug 2017-October 2017) of PT which really brought attention how poor my posture is and where I carry my stress (neck). 


So between quitting my job, doing PT, taking the Nortriptyline, and letting go of most of my anxiety and fears through healthy and non-intense exercise and stretches and similar meditative ways, those ON 'flare-ups' dissipated immensely to where any flare up this past year feels more like a quicker dull pain in my neck and back of the head (now right side) that was more manageable rather than what I would compare to the previous learned Cluster Headache. 


I also can see and read up what the very similar symptoms that Occiptial Neuralgia flare ups and Cluster Headaches share. So along with all of this information, I may have improved lots mentally, emotionally, and physically. But lately (this past 2 weeks) I've been having familiar to last years head pain back on the left side along the back in addition to around the left eye like my muscles around the eye have been overworked somehow along with jaw and cheekbone pain on that left side. It feels like what you guys would call 'shadow pain', not as bad as the actual hit. This has put me in the thought of Cluster Headaches again and makes me wonder if I was/am a contender for them and that I just went on remission from them and if the doctor mis-diagnosed me of not having them.


One of my theories was that my anxiety and symptoms of pain snowball-ed into one another to make things flare-up just to mock Cluster Headaches. But I also do find when comparing the two that the more leaking eye after an episode is not common in ON and only in CH. Another thing to add is that besides that first 'head attack' I got, I never had any wake up me up in my sleep - That also could be the majority of the time I had these I had just had my tonsils out and was on tons of percocet during a 3 week duration and was so wired and sleep deprived as it was that I couldn't or could barely get any REM sleep.


Sorry for the very long essay, I just wanted to fit every detail in and lately I've been starting to fear that I was misdiagnosed and that the CH will come back and I don't have any CH medication, oxygen, etc. I have made an appt weeks ago that's not for another week from today for a second opinion with a different neuro. Thanks for reading all of this! 


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I'm certainly no doctor so take any info I might give as just a vague opinion.  The location and description of your attacks sound very much like CH accept for one aspect.  CH attacks normally last from 1 to 3 hours.  I think you posted yours last from a few to 20 minutes.

There are several other head conditions that are very similar to CH and in the same family (trigeminal autonomic cephalalgia), but have shorter duration of attack pain.  SUNCT is the first one that comes to mind that has shorter duration.  They are normally 1 to 6 minutes and have similar treatment as CH.  There are a few others, that actually have better treatment options than CH (though sorry, my memory is bad sometimes and I don't recall the names off the top of my head).

Try researching trigeminal autonomic cephalalgia, as that's the primary title for most flavors of CH type attacks.


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Ok, the condition I was trying to think of just popped in.. ha ha..

Chronic paroxysmal hemicrania - It's almost exactly like CH, but affects women more than men (supposedly anyway).  It also has attack duration from a few to 30 minutes.  One BIG difference between CH and CPH, is it us usually treatable with indomethacin.  Indomethacin doesn't work on CH, so it's a good test doctors use to distinguish which condition a patient has.



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I think that you have already done the most appropriate thing - find a new Neuro! I just read the Mayo Clinics' definition of Occipital Neuralgia. I don't think that your symptoms are a match for the diagnosis you received. Some Neuro's know too little about headaches. That is why they have headache specialists in Neurology. Harder to find, but much more informed.

When I first began my adventure with CH, my hits lasted 20 minutes. Over time they increased intensity and duration and today last 2.25 hours. I am ECH. My cycles are pretty regular. They begin with one hit per night and ramp up to 4/night. So, with one hit at night for a couple of days, I pretty much know that I am going into cycle. Or if i drink a beer an get a hit, I most certainly am back in cycle.

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Yes, my cycles have been Sept. thru March for the last 14 years. However, as is often the case, this year it changed and I have had a 'low' cycle most of the summer. I suspect it is due to other health issues I have had to deal with this year and the two surgeries required and it will return to the norm over the winter. A few years ago I had surgery during cycle time. The cycle was under control until the surgery. And that cycle lasted 8 months, not the normal 6. So, I suspect something in the anesthesia sets my head off.  

In the beginning I was CCH, but the pain levels were lower and the duration much shorter. I had a 10 year remission and they returned as ECH with longer duration and much higher pain levels. The beast does change.

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Hi Nicole,

I would advise you to search for a specialist in headaches, or a headache clinic (where not only 1 doctor but a team is making the diagnosis).

Why is that ? 

Diagnosing headaches is very complicated. Of course there are these ICHD criteria but they are giving the most standard textbook symptoms which do not apply to everybody as every body is different. The task of the headache expert is to determine how far your symptoms can be off from the standard criteria but still fall under that diagnosis or which diagnosis applies the best if you have overlapping symptoms. They can do that as they are trained for it and see hundreds patients a year.  

When I went for my diagnosis previous year, i was very far off from the standard CH but the headache team who diagnosed me has seen something that was pointing to CH that none of us would. A year later, I know now they were proven to be right.

In your case, ask them if paroxysmal hemicrania does not come into the picture.

All the best !


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