Five hospitals. Three admissions. Seven emergency room visits. Three calls to 911.

This is my last three weeks.

I don't even know where to begin. I don't even know how to begin. All the doctors tell me is I have "Probable Cluster Headaches." I can't remember how my first attack occurred. I am suffering from memory loss, confusion, I have constant numbness in the right side of my face and back of the head, tingling and numbness in my arms and hands at onset of an attack, chest pains, vertigo, blurry/tunnel vision and complete loss of vision when the pain gets so bad in my right eye. I've read up on cluster headaches. It sounds familiar to what I am battling, but at the same time there is so many different ailments that come with these "attacks" that I'm unsure. EKGs, EEGs, MRIs, and a handful of blood tests and other tests have been ran and have all been determined negative. For most people that would be a heaven sent answer, for me it just causes more frustration and questions. Mayo Clinic (Rochester, MN) was my last hospital I was admitted to and seen at and they randomly called me yesterday and told me I need to be back there immediately for more MRIs because they see something they want to further check into. I have two cysts on my brain. One is located on the pineal gland and the other is located on my right front temporal lobe. Both look to be benign, I'm told, and are quite common and are said not to be the cause of whatever is causing my pain.

For three weeks I've had this pain. These attacks. This absolute horror following me. The headache never goes away. For the most part, I would give the pain a 7 or 8/10. That is NOT during an attack. During an attack I can't even begin to explain what I feel in words other than downright terror that I'm literally dying and the fact that sometimes it gets so bad I would rather succumb to it than feel it anymore. I haven't been completely pain free in three weeks. I haven't worked. I haven't done much more than get off the couch or get out of bed to get to the fridge or bathroom as needed. The attacks are focused on the right side of my head. The pain has been localized above my temple and shooting towards the back of my head and ends behind my ear. Eye pain is there, but nothing similar to what I've read from what some CH sufferers experience. I am the type of guy who breaks his hand at work and tapes it together tight to finish his shift. I have an incredibly high pain tolerance and the pain during the attacks is something that makes me writhe in pain, scream to god to make it stop, and cry and sob like a child.

I have been given the plethora of medications. Excuse my spelling, as I know I'll murder half of them, but - Indomethacine, Vrapomil, Mezclimine, Prednisone, o2 treatments, Sumatriptin, Benadryl, and many others I'm sure I'm forgetting. Nothing has worked. Nothing has even remotely taken the edge off the pain. When I was admitted in Eau Claire, WI at the hospital I was given three injections of Morphine and I didn't feel any effect until after the attack had gone and the pain subsided to back to the constant pain of the 7 or 8/10. I generally refuse narcotics, they make me feel terrible and give me such a bad stomach ache that I try to manage the pain but I generally cave and beg for them to give me something even though it's never truly helped. Wishful thinking, I suppose. Also, even though most severe attacks last on average around 1.5 hours, my longest has been 7 hours. (Not including the "onset" when I feel the pressure rapidly increasing.)

The attacks come nearly daily. I've had three days in these three weeks that I have not had a severe attack. But these days are still debilitating from the pain as I sit in bed and can hardly move because I'm so weak from the previous attacks. Sometimes it's one a day. Other times it's 2 or 3 a day. Last night I had two occur back to back with only minutes between when I was able to gasp for a few short breaths to try to regain a little composure because I could feel another one coming on. I haven't worked in three weeks, my relationship is suffering, and my family cries nearly as hard as I do as they witness what is happening to me. At a younger age I was diagnosed with what they considered to be a "seizure disorder" but never truly found a cause or explanation. The doctors now say this is what it was but this is nooooothing like what happened to me years ago. I had no pain like this years ago. Pain, yes, but it was manageable for the most part. Some symptoms are vaguely familiar but this isn't what I've gone through and I get frustrated because my family keeps treating this as it was the same thing that happened years ago.

I don't know why I'm here. I don't know if anyone can help me. There's a lot of things I'm sure I missed. Feel free to comment or ask questions or give any advice possible. At this point I'm just desperate to be able to have a pain free day and spend it with my nieces and play with them like I used to instead of them seeing me like this.

That would make me happy.

Oh ksparks, I am so sorry to read about what you are going through!

Quote:
It is terribly important that you get a diagnosis as soon as possible. The Mayo clinic certainly seems to have neurologists who are cluster headache experts (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ).

When you tried O2, was it with a non-rebreather mask (face mask with no hole, a big bag attached)? And with a high flow of 12/15 lpm? If not, I think it might be worth asking the Mayo clinic if you could try it during the diagnosis process since it can be such a lifesaver to stop the pain during an attack (if it's cluster headaches).

If you have cluster headaches, it may help to really stay hydrated with water, and to avoid alcohol. I can't imagine that those would interfere with the diagnosis process.

This must feel like a bomb going off in your life. Do your best to take care of yourself physically and emotionally and encourage your loved ones to do the same. I hope that you get answers soon.

You're in a dark, crappy place and my heart aches for you. Bob is spot on, much of what you describe sounds like CH, but the fact that none of our "A PLUS: meds, specifically the prednisone, Sumatriptan..(assuming that was injectable and NOT pill form)....and oxygen.... are providing you any relief leads me to worry you may very well be dealing with something else, and all of our best intentions will delay an accurate diagnosis. A few things:

The sumatriptan, if it was the pill form, that's useless for CH as it takes too long to get into your system, injectables work for me in a matter of a minute or two.

Oxygen: To be effective for CH it must be started as soon as the attack begins, the idea is to get 100% oxygen to the lungs, at a rate to encourage hyper-ventilation, typically done using a non re breather mask and at LEAST a 15 LPM flow. Nasal cannulas, re breather masks and low flow rates are recipes for failure. Once an attack is established oxygen won't help me. Started as soon as the attack starts, I can be pain free in 8-10 minutes.

The prednisone, was it given to you as  a taper, say starting at 100 mg  a day and reducing over the course of a couple of weeks? The verapamil is a very popular prevent...won't eliminate them but should substantially reduce the number and intensity of CH attacks. The down side is it will take up to 2 weeks to build up in your system before you start seeing positive results. That's why most of us start the prednisone taper when we go on the verapamil. And the dosing on the verapamil, we go much higher then most docs are used to with some going as high as 960 mg a day to get relief...do you recall what dose they had you at and how long you stayed on it?

The ugly bottom line...if it is CH, it's a lifetime ailment, a VERY manageable ailment, but you have to look at this long term. There are no easy quick fixes so the time you spend now with the Mayo Clinic, verifying a FIRM diagnosis, is time well spent. Let us know how it goes and do stick around.

For now, avoid alcohol, a common CH trigger. Pick up a couple energy drinks, red bull rock star, any containing the combo of caffeine and taurine, slam one down at the onset of an attack, many can reduce or stop a hit this way. If you're not already doing so, keep a detailed headache diary, when they start how fast they build how high the pain goes how long it stays at peak how fast it goes away any triggers you identify and secondary symptoms you observe, details are a gold mine for headache specialists the more ammo you can give them the better shot at an accurate diagnosis. Hang on there and feel free to vent here, we really do understand.

Joe

They already took me off the sumatriptin, verapomil, and prednisone. All I'm prescribed to currently is Indomethacine. They are working up my dose over the course of a week to 9 pills. (3 am, 3 noon, 3 pm) to a total of 75mg per dose. The prednisone was only given to me for one day. I was admitted to another facility that evening then immediately taken off of it. That's what I'm not understanding. The Sumatriptim is pill form. Hasn't helped at all. Has only given me gut rot. I don't understand how any medicine is supposed to help when they only make me take it for 3-4 days before they stop and give me something else.

We certainly know what it is like to go through what you're currently experiencing as you battle to get a diagnosis and then a treatment plan for whatever it is.

Are you keeping a headache diary? If not, this could help with the diagnostic process. For each headache take a note of the time, date, location, pain level, symptoms, duration, medication taken and effectiveness, possible triggers and anything else that could possibly be relevent.

You're in a really good place with the right experts. Work with them and I hope that you get your answers soon.

Just a few things that some have touched on already but stood out to me:

Constant terrible pain is generally not a cluster symptom- lighter pain we call shadows are common, however, and perhaps this is what you are feeling. It is also possible, as some have suggested, that you experiencing both cluster AND/OR some other migraine or neurological issue. We here on the board cannot make that determination, so stick with your specialists here, as the diagnosis is absolutely critical.

Prednisone needs more than a day to be effective, and generally needs to be taken at high dosages. Oxygen is about timing, flow, and quality of mask. Not meeting these requirements can cause its effectiveness to fall off sharply.

Sumatriptans should be injectible. The pills are almost worthless in my opinion and too slow to deal with an attack. By the time they kick in, the attack is usually winding down anyway.

It may be worthwhile to look into Batch's vitamin D3 regimen for helping treat clusters. It's worked for myself and many others, and may help provide you with some relief.

Lastly, part of coping with cluster is knowing that there will be some dark times, months even, where treatments do not work and life becomes miserable. You have to hang in there, using whatever means is necessary to do so. Relief will come eventually, if it is cluster. Find a way to keep positive thoughts, and keep educating yourself about this affliction.