I really hope that some of you folks can give me some new ideas about how you coop with Clusters. Here's my history: In September 2011 I had a cluster that lasted a week and then had 3 weeks off. In October I had a cluster that lasted 8 days and then was off for 4 weeks. In December I had a cluster that lasted 14 days and had 20 days off. During that time period I was hospitalized twice. I've had more CAT scans and MRIs then anyone person should have. I've also had extensive eye exams, because in November I lost visual acuity in my left eye (the opinion now is that it was a small stroke - my bp goes through the roof when I'm in pain. Since January 2012 I've only hada handful of days where I'm not in pain. (10 days straight in May and 4 days in July.) I see a neurologist at Cleveland Clinic, but unfortunately they are 5 hours away from my home and can't adjust or change scripts over the phone. My primary care physician refuses to treat the clusters because the medications I'm on scare her. My ER has asked me to stop coming in for the clusters. The last time I went while I was being triaged the nurse (and then the doctor) told me there was nothing they could do and that they were not in the business of treating headaches or helping drug seekers. Also note that I'm getting elevated liver enzymes and my kidney function is out of wack.
Currently I'm on the following meds (all prescribed by CC, but CC will not manage them from 5 hours away.
1. Verapamil 80 mg TID
2. Neurontin 900 mg TID (the neurontin is causing me to retain urine and have lower back pain - my PCP had to cath me a few weeks ago to get my bladder to empty. )
3. Serequel 25 mg up to 3 times a day for headache and up to 4 at night for sleep. (Shortly after I started this I became hypoglycemic and now I have to carry glucose tablets with me. CC says it is not possible that this is related to the serequel)
4. Elavil 50 mg at night
5. Oxygen 12-15 ml/min PRN
6. Imitrex stat dose 6 mg PRN (my neurologist says there's no such thing as rebounds with clusters and said I could take the Imitrex as often as I need - but that's nearly 2 doses a day. I'm worried about cardiac issues)
7. Lithium 150 mg twice a day and 300 mg at night. (I've had to recently discontinue this as it caused a body wide rash, which had to be treated with steroids and benedryl; again Cleavland Clinic says that there's no way the Lithium caused the rash)
8. Meletonin 15 mg at night
9. Phenergan 25 mg PRN (for nausea and headache)
10. Prozac 20 mg 1/day
11. Klonopin 0.5 TID (this is new, from my PCP, as the panic attacks I'm having are getting out of control)
12. Synthroid 112 mcg (my thyroid was destroyed with radiation. (Prescribed by my endocrinologist)
I've also tried DHE injections at home, but they don't do anything. I use ice packs over my eye (it's ALWAYS my left eye and on my neck.
I take calcium, vitamin D, multivitamins and B-12 (I have absorption issues) I rub lavender oil on my temples at night to try to relax me.
The only pattern I can identify as a trigger are changes in the barometric pressure.
On the increasingly rare conditions where I feel like I could sleep I start having panic attacks. My pain is on the left side of my face. It starts at the left eyebrow and extends down to my upper left molars (ny teeth hurt so bad that I have trouble brushing them some times and I can't where my retainer). I also have "electric" shooting pains down my tongue. Of course the pain in my left eye is the worst.I am so exhausted. I don't know what else to do. When I try to talk to my doctors they always refer me to the other guy. Cleveland Clinic said they were only interested in me from my neck up, and to see my PCP or go to the ER and of course they say to go to CC or talk to my PCP. I have an appt with a psychiatrist on Aug. 21, and my PCP is handing me over to a new PCP on Aug. 15 for "pain management" whatever that means. CC says I'm not a good candidate for a nerve block and that it's a temporary fix anyway. I'm exhausted and depressed. Somedays I'm suicidal.  I just don't think I can continue living with this kind of pain. What do I do?

Does your oxygen mask have a bag on it? Any other type of mask is of little use for CH. Below is a link to our CH "oxygen info", it will tell you things most Doctors don't know about oxygen for CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Your verapamil dose is quite low for CH. Most of us take at least 480mgs a day to get any help. Even many Headache Specialist Doc's are not up on CH treatments. You will learn a lot from this great website.

Don

Thank you all so much for your thoughtful replies. It helps to talk about this stuff with people who understand clusters. I'm going to try to get my O2 flow rate increased (I use a non-rebreather mask with the bag attached) and I have an appointment with a counselor who hopefully can help me with some new coping mechanisms. I'm going to try the Vitamin D regimen and see what happens. Cleveland says they will start trials this fall on a SPG nerve stimulator and that I'm a candidate. Unfortunately it's a randomized assignment so I may be one of the folks who gets the device without it being turned on - but after the trial is over everyone will be turned on. Other headache specialists have had some luck with this. I'm also going to have a serious conversation with my neurologist - I feel like I am one WAY too much medicine and since it isn't helping significantly (except for the Imitrex) I'd like to go off these drugs so I can preserve liver and kidney function. I will ask that my verapamil be increased a bit, maybe that will be the ticket. Again thanks for just "listening" too me. The pain of clusters is hard to communicate to folks (and docs) who've never experienced them. I'm going to keep exploring this site and will probably nix the idea of going to a pain clinic, since my understanding is all they do is write scripts for opiates.

Hey, Stella,

Glad you're here.  It is common to put our faith in the provider.  It is (at least) equally common to face the prospect of being considered a malingerer or drug seeker...or at least hypochondriacal.  CH.com folks are experienced and knowledgeable.  They will tug you in the right direction.  It does seem that your list of symptoms may lead to resignation on the part of the provider.  My advice?  Determine the symptoms (by study) that relate to your worst contributor (the CH) and get you doc focused on that.  Once he/she gets there, you have a chance of getting him/her to listen to other things.  Sad, but very true. 

TJ