New member...new to CH

[Jen Wolf]

Hello everyone...

I'm a new member here on CB and I've never really heard of CH before... I've been diagnosed as having migraines, but what I've been experiencing recently doesn't seem like the migraines I've had before (sensitivity to noise, light, etc.) and that has been easily treated with headache meds and/or caffeine. 

I'm a 27 yo female with no known allergies and no outward stress factors currently. I am going on...I think this is week 3 of having excruciating headaches that localize from my temples to the center of my forehead (recurring every day to every other day - happening once or for several hours in a day). Eating food, hydrating, and medication do not seem to help much. I constantly feel like I wanna throw up. Generally I will wake up with a pounding headache...it will subside for a couple hours and return or just go away for the day. My headaches/migraines have never been this bad and I think i'm going to start cataloging my length of time and duration of my headaches, but I feel completely helpless and I don't know much about CH or the attacks that sufferers experience....do you all have any tips for someone who is suffering, but has never really been diagnosed as a CH sufferer? 

I do get migraines, but this is something completely different and new and idk where else to turn... i'm tired of being in pain...please help!

[big j]

there are many treatments on here and many have worked for me, vitamin d, Topamax, Elavil, imitrex injections and o2. the imitrex injections were a god send for me but they create their own problems, if you are seeing a Dr anytime soon I would try to get those as ive heard they work for migraines also but as I said don't use those as the only treatment or on a regular basis. caffeine may be a good way to tell as it usually helps clusters but I hear it makes migraines worse. I would start with melatonin and Benadryl at night and caffeine in the day along with the vitamin d treatment on here. the o2 is going the most recommended but its a bit of a pain to get started and I would hate to recommend going through that trouble if you don't have clusters 

[CHfather]

Jen', these are the symptoms of CH.   "Attacks of severe, strictly unilateral (one-sided) pain which is orbital (the area of your eye socket “behind your eye”), supraorbital (the area around your eye socket), temporal (area of your temple to the side of your eye) or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to 8 times a day. Pain is maximal orbitally, supraorbitally, temporally or in any combination of these sites, but may spread to other regions of the head. Pain almost invariably recurs on the same side during an individual cluster period. During the worst attacks, the intensity of pain is excruciating. Patients are usually unable to lie down and characteristically pace the floor. The attacks are associated with one or more of the following, all of which are ipsilateral (on the same side of the head as the headache pain): conjunctival injection (the mucous membrane that covers the front of the eye and lines the inside of the eyelids looks red/inflamed: “red eye”), lacrimation (the flow of tears), nasal congestion, rhinorrhea (nasal discharge/”runny nose”), forehead and facial sweating, miosis (excessive constriction/tightening of the eye’s pupil), ptosis (drooping of the upper eyelid), eyelid edema (swelling/”puffiness” of the eyelid from excessive watery fluid collection). Most patients are restless or agitated during an attack."

Typically, as you see, the eyes are involved, as the primary area of pain, and with visible symptoms on the side of the pain. Also nasal congestion and "runny nose."  And a very typical thing is that agitation/inability to sit or lie still during an attack.  And CH is typically one-sided, so if you are experiencing pain in both temples (even one at a time), it might not be CH.

I'm asking some questions here, but you don't need to answer them, since I don't think we can really make a reliable diagnosis in this way.  You are welcome to answer them, but of course you need a headache specialist for a real diagnosis. You idea of keeping a diary of your attacks is very good -- that usually helps a doctor with the diagnosis.

You say that migraine meds don't help.  Does that include a triptan (such as sumatriptan/Imitrex), or are you using mostly over-the-counter things for your migraines?  Because CH is responsive to triptans, but not in pill form -- as injections or nasal spray.

And you suggest that caffeine isn't helping.  It often does help with CH, but sometimes it needs to be in a stronger form than a cup of coffee -- an "energy shot" such as 5-Hour Energy or an "energy drink" such as RedBull (for a variety or reasons, including that they have more caffeine), the shots are more effective.

You say you wake up with a pounding headache. Do you mean that you wake up in the morning in that way, or you are awakened from sleep by it?  People typically can't sleep through a whole CH attack, so if you are waking up at a "normal" time in the morning and then feeling the attack, it might not be CH.

I feel uncomfortable recommending anything to you, since we're not sure you have CH.  If you want to try drinking an energy shot at the first time as an attack, it might help.  That's about the only short-term non-medical intervention I can think of right now.  As big j says, you could try Benadryl (4x/day, with 25mg during the day and 50mg at night), since allergies make a lot of headaches worse. I just don't know how far you can reliably/safely go in any direction when we're not sure it's CH. 

 

 

[Dylan the potato]

 

On 4/10/2018 at 0:50 PM, Jen Wolf said:

Hello everyone...

I'm a new member here on CB and I've never really heard of CH before... I've been diagnosed as having migraines, but what I've been experiencing recently doesn't seem like the migraines I've had before (sensitivity to noise, light, etc.) and that has been easily treated with headache meds and/or caffeine. 

I'm a 27 yo female with no known allergies and no outward stress factors currently. I am going on...I think this is week 3 of having excruciating headaches that localize from my temples to the center of my forehead (recurring every day to every other day - happening once or for several hours in a day). Eating food, hydrating, and medication do not seem to help much. I constantly feel like I wanna throw up. Generally I will wake up with a pounding headache...it will subside for a couple hours and return or just go away for the day. My headaches/migraines have never been this bad and I think i'm going to start cataloging my length of time and duration of my headaches, but I feel completely helpless and I don't know much about CH or the attacks that sufferers experience....do you all have any tips for someone who is suffering, but has never really been diagnosed as a CH sufferer? 

I do get migraines, but this is something completely different and new and idk where else to turn... i'm tired of being in pain...please help!

Well...yours unfortunately seems to be a rather complicated situation. I'm new here myself. didnt know what it was even while having my first attacks. Ive had it since i was 18 and managed to get an official diagnosis a couple months before my 20th birthday.  It seems to take a while longer for others.  Like CHfather said we aren't sure if its CH. We here cant diagnose you obviously if you don't know if it is...but i will tell you I'm so sorry you're going through this. Not knowing and having a outright diagnosis can be very difficult...and not knowing where to start with pain management and finding some form of treatment is as well. I still struggle with figuring out what to do and have a ton of trouble coping but am making progress. Especially after joining up here.  I hope the very best for you and i think i can speak for many of us here that whether it is or not we support you in finding your way. Stay strong and hang in there.