New memeber headache sufferer

[emperorwang]

New guy here, I just got diagnosed with what the ER physician thinks is cluster headache; unfortunately, my first consult with a neurologist is not for another month!   That's the soonest they could fit me in.

 

This is what has happened recently and I'm curious if this disease onset in a similar way for anyone else?

 

Today is Tuesday.  Last Wednesday, I had a few beers with my buddy (I drink and smoke, but have not drank or smoked since then) and went to bed.  I woke up Thursday morning with what I thought was a garden variety headache, albeit only on one side of my head (left).  I thought it was because of the beer the night before.  Only thing was, it did not respond to aspirin.  I went to bed Thursday night with the headache fully expecting it to be gone in the morning.

 

I woke up Friday and the headache was worse.   In addition to the constant left side headache, I was now getting the occasional stabbing pain in my eye.  The eye pain was both in the orbital socket, and on the surface of my eyeball.  This lasted all day.  At this point, I thought it odd.

 

Saturday morning I woke up and it was worse still yet.  Now my left eyelid was droopy and swollen, and my left eye was bloodshot and teary.  Still a constant headache with occasional stabby eye pain.

 

I came to the end of my rope in the middle of the night from Saturday to Sunday, when I awoke at about 0400 hours and was writhing in agony at the searing needle-stabbing pain in my left eye, which was watering like a faucet.  My whole pillow was damp from the eye watering.

 

Sunday I went to the ER and the Dr. immediately suspected cluster headache.  My CT scan and bloodwork were normal.  She gave me oxygen and some type of IV fluid.  I left the ER with a pain level of about 2, and a consult with a neurologist scheduled for July 1st (that day was May 29th).

 

Today is Tuesday May 31st and since the ER visit my actual HEAD pain has been mostly completely gone, but my left eye has been constantly bloodshot and droopy, with stabby pain in the eye about every 30 seconds NON STOP.

 

I feel like I'm losing my fucking my mind.

 

So basically I woke up last Thursday morning with a headache and have been in constant misery ever since.  Now the pain exists almost completely in my eyeball.

 

I've never experienced anything like this.  Never had migraines or anything like that.

 

Does this sound like Cluster Headaches?

[CHfather]

This doesn't sound to me like the typical onset of CH, this kind of gradual worsening and sustained pain that you are describing.  I think for most folks it's just like, wham, the whole full-blown thing hits you out of nowhere.  I'm not claiming any more expertise than the thousands of posts and other materials I've read (of which maybe a hundred discussed CH onset, since I did edit a booklet of accounts from people about their CH).  And the question would arise, If this isn't CH, what is it?  So it could be.  I suppose it could be some kind of hemicrania, but that doesn't fit very well, either.  (Here's some info about hemicranias: http://www.mhni.com/headache-pain-faq/unique-neurological-conditions/chronic-paroxysmal-hemicrania)

 

Some doctor advice: Continue keeping this kind of detailed diary.  It could help with a diagnosis.  Also -- Unfortunately, many neurologists don't know much about CH and other severe head-pain conditions.  If you are able to get to a headache center, try to do that.

 

Did the oxygen you got at the ER help with the pain?  A "yes" would be meaningful, because O2 is effective against CH but generally not effective regarding most other conditions (migraine; hemicrania).  But a "no" would not necessarily be meaningful, since O2 is often administered ineffectively, so you wouldn't know if it might have helped if it had been administered effectively.

 

Since I don't know whether you have CH, I'm reluctant to make any suggestions -- and there aren't many short-run things to come up with, in any event.  I will say that many people who have CH get some relief from beverages containing caffeine, particularly from energy shots such as 5-Hour Energy or drinks such as RedBull.  People with CH can sometimes get pretty quick relief from the vitamin D3 regimen that you can read about here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ I guess I am thinking that energy beverages and the D3 regimen probably won't be harmful to you no matter what you have, and they might help, but you will have to decide about that.

 

I hope things will clear up for you soon and this will either be some kind of one-off incident or you'll get a diagnosis and effective prescriptions and other advice.  Sorry you are suffering like this. If you do get diagnosed with CH, please come back and we can help make sure you're being treated properly.

[JeffnTx]

The first response is good. Go see a headache specialist not a general md or neurologist.

 

Your pains sounds like Cluster HA, but they don't usually last days. Mine last 1-2 hours typically.

 

MY dad though has what are diagnosed as Cluster Migraines. Same symptoms, but his came in clusters and would last for days. but  like other disorders there can be variations I suppose.

[spiny]

So sorry for your pain! It is scary to be hurting with no good answer as to why.

 

CHF has pointed you in a good direction with Hemicrania information. A neurologist should be able to sort it out for you. Ice Pick headaches sometimes accompany migraine. They are short, very painful stabs to the eye for most. The migraine is not short and can last for hours or days.  But, you can get several ice picks per day as they are usually short and intense. My son has both that seem to appear more frequently depending on the season and his stress levels. Some last 30-60 seconds and can take him to his knees. I suspect that frequent stabs could make your eye red and swollen, but is only a suspicion.

 

The good news is that for Hemicrania there is a medication that works very well - Indomethacin.

 

The bad news is that your appointment is a month out. The waiting can be horrible. 

 

I second CHF's question regarding the O2. Did it help? How were you told to use it and how high was the flow rate? O2 only helps CH to my knowledge. And if the headache returns I would definitely grab some caffeine and slam it down at the very beginning of the head pain!

 

If you continue to have this pain, you might try returning to the same ER for a follow up, explaining that your appt is still weeks out and your pain is still horrible. Perhaps that would help push the Neuro to see you sooner? Could be worth a shot. Especially with the visible eye issues. i would take a headache/ice pick diary with me to the ER. They might not understand it, but they will see the frequency of the pain that you are dealing with.

 

How are you today? Still having the jabs and no major headache with them?