First diagnosed with CH's at 21, after having suffered undiagnosed since 16 years old. The headaches weren't too severe most days (terrible on others, but I usually toughed them out), but didn't have health insurance (poor family). Saw an ophthalmologist (nothing pathological/vision is great, unremarkable visit) who did a full workup, who referred me to a neurologist. Neurologist ordered an MRI, unremarkable. Neuro exam, unremarkable. Tried a trial of sumatriptan (along with NSAIDs as needed) for 6 months but nothing worked. I have since followed up with my PCP who sent me to optometry (unremarkable visit, vision/eyes were great), tried muscle relaxers (cyclobenzaprine, methocarbomol). I also tried oxygen therapy at an ER because it got so bad one day.

My caffeine intake is low (maybe one or two coffees/week). I exercise a couple times a week.  I eat healthy, getting my greens and fruits. I've had numerous blood work tests, most nonspecific (CBC, CMPs). Had my thyroid checked, too. I'm healthy, all things considering. No other medications or allergies. Not photophobic, phonophobic, and not real triggers that I've been able to find (I kept a journal). I've also had a head CT which was normal. Also tried trigger point injections in my neck, with no relief.

My only history is a couple of kidney stones, had the flu once in my life. Had strep throat as a teen a few times.

Most days it's there, mild, but I can ignore it if I'm working. Other days are unbearable with no relief.

I don't know what to do but I would love to hear what peoples thoughts are on this. Sorry for the long schpeel. But thank you in advanced.

Moo, (if we can address you as that),

You’re very welcome to CH.com. Lots of friends, support and information here.

Firstly, never apologise for posting here, lengthy or otherwise. We have all been there and understand.

Please read the following link, which is proving to be a significant benefit to 80% of those of us who use it.

Come back with questions if needed. It is certainly worth trying and requires no prescribed medications.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Always here to support.

Peter.

Hi and welcome.

Are you using anything as a CH preventive? Peter mentioned using D3 which can be very effective (it's worked for me), but there are also others like verapamil, lithium and topamax.

Do you have anything to abort a CH? Imitrex (sumatriptan) injections / nasal sprays work well and oxygen does too. Whilst you mentioned trying oxygen once, you really need to have it nearby as it is so much more effective when you start it as soon as the CH starts.

Are you working with a headache specialist? Most doctors have limited knowledge and experience of CH. And from reading what you wrote it suggests that your doctor isn't too experienced.

Keep reading, ask questions and you'll learn a lot, hopefully making a difference to your CH.

Welcome aboard. Wish you weren't here.

As said above, NEVER apologize for posting here! That's our purpose, though I'll admit to being AWOL too much of late.

You mentioned a trial of sumatriptan along with NSAIDS. From the way you wrote it, I'm guessing it was sumatriptan tablets? If so, they are basically useless for CH. IF you are going to use triptans, you need either injections, nasal, or some have reported help with Maxalt meltables. Personally, I'm not a fan of triptans due to their heart-health issues and the fact they tend to extend cycles and cause rebounds if used frequently. I strongly urge you to get O2 at a minimum of 15 liters/minute, though many of us find 25 lpm or higher to be more effective. You need a proper mask -- a non-rebreather (It's the one with the bag.) Look in the CH.com store for the best possible one to use. It was designed by a clusterhead for clusterheads.

From what you said, it also sounds as if your neuro is not well versed in CH. I strongly urge you to find a neuro who is knowledgeable in CH. I know it is difficult in many areas to do so, but I'd recommend you do a search. It's worth a couple hour drive if you get a good one. You won't be seeing him/her all that often.  Read the info on the "oxygen info" button on the left so you know what you are talking about. I'd even write out the sample prescription and take it with you and have the doctor use it. If your doctor is not willing to go that route, RUN, don't walk out of the office for he's a moron and doesn't know what he's doing. (You don't have to have a neuro write the script. It can be your GP) Once you get a script for O2, even if you get it from a semi-moron who writes it for less than 15 lpm, we can help you get a regulator to boost the flow rate to what you need. The important thing is to get O2.

If you cannot get a doctor to prescribe O2, (yes, there are many who are that incompetent), you can purchase a welding tank and get your own. We'll help you get that sorted.

I'm glad you found us. I so wish you didn't need to. You have found a new family, though. My experience over the last nearly 20 years on this board that some here have become much closer to me than my own kin. We understand. We'll listen if you just need to rant. We'll kick your tush if you get to feeling sorry for yourself, and we'll give you the love and support you need along the way.

jlc

NSAIDs and muscle relaxers should have little to no effect on CH, and ER staff don't usually know how to use O2 as a CH preventative. So MooImSnek, it really sound like you get the best treatment, and the most important tip for you is to seek a headache specialist, that will properly diagnose and treat you.

Another thing: you said "most days it's there, mild, but I can ignore it if I'm working". That actually sound like HC (Hemicrania Continua) which can mimic CH and is also very common in CHers. It's treatment is completely different though.

Moo, welcome to CH.com. The posts before me are giving valuable info. As fellow ClusterHeads, they know what is needed.

Can you please, describe one of your headache attacks. Location, how long do they last? Etc.

Here's a link to our clusterquiz to help you with confirming a Cluster Headache diagnosis.

Don