Hello,

Newbie here. I am 43 yr old male and have recently been diagnosed with cluster variant by a neurologist. He says my symptoms are closer to a cluster headache than anything else. As briefly as I can, I would like to provide some history. I don't know if all these things are connected but I feel it necessary to give a chronology of events.

In May of 2009 I was exposed to a high dose of pollen when cleaning off my back porch. An hour later I had a severe sneezing fit and major congestion. I felt terrible and woke up the next day with a low grade fever. This had never happened to me before. I was over it in a couple of days. In August 2009, out of the blue, I developed a severe sinus condition. My only symptom was congestion which could only be relieved with OTC nasal spray, Afrin. I became “addicted” to it. I was prescribed with a anti-histamine nasal spray, a steroid nasal spray, and Prednisone to get off the Afrin. It was treated as allergies by my primary Dr. Two days after I completed the round of prednisone, I was awakened at 2am with a severe stabbing pain in the top-right front quadrant of my head. My mother-in-law had some hydrocodone and this relived the pain.  A week or so later my congestion returned and I was back on the Afrin. I was referred to an ENT who diagnosed me with Allergic Rhinitis and he had me do another round of prednisone to get me off the Afrin. I completed the 2nd round of prednisone by  mid November and I was off the Afrin. My sinus condition was alleviated but I had this headache.


I had this constant feeling of "pressure" in the area of my head I referred to earlier. It was with me practically all day everyday. A CT scan of my sinus's was normal. For 4 weeks straight beginning in late November, on an average of once per week, I would wake up with this God-awful stabbing pain in the right side of my head. Come to Jesus kind of pain. If I had a pain pill it would relieve it. If not, it would back off some but would not go a way with out a narcotic. I should mention that I had shingles in this same area of my head back on 1995. The pain felt very similar but the Dr's tell me it's not related. I should also mention that I experienced a fairly significant stress event involving my sister just before Thanksgiving. Over the course of a week, I composed and edited a 7 page email to her. It's a deep and long story that I will not go in to here. Suffice it to say that it weighed heavily on me.

In December I had an MRI which showed nothing abnormal. At the end of the month I saw the neurologist. He prescribed me with an anti-inflammatory for prevention and Imitrex for any acute attack. I have not had a severe acute attack since the end of November but I still have this daily stabbing, burning "pain". I wake up with it and it may back off some but not much. I should also mention that my job has been very stressful since around the beginning of December. The more stress I feel, the more of the headache I feel. I don't seem to have the “classic” cluster symptoms. No teary, droopy eye, etc. I stopped the anti-inflammatory after a month of use and I have been on Verapamil for 9 days now. I am working my way up from 80mg to 240mg over a three week period.

At this moment I have the stabbing sensation. I have not had the severe acute attack since that four week period in Nov-Dec. But the daily paid I do have is wearing me down and it's a bit depressing. Will I ever get better?

I am just looking for some feedback here. Your thoughts, advise..anything. Does anyone else experience similar symptoms?

I really appreciate your time.

Thanks,

Scott

A search in the major library of medical literature in the U.S. revealed strikingly little on CV. My IMPRESSION is that you will have to be patient as the doc may have to work thru several treatment approaches.

The use of Verapamil is well established for CH and we have a long history of effectiveness and safety. That being said, the dose you are working toward is quite low for CH--but I'm not about to question your doc's judgment. IF you reach this top dose and you don't get relief I would encourage you to talk to him about a significiant increase. Many Cluster folks end up in the 700-900mg area for effective results.

But patience! Avoid the temptation to jump from  doc to doc, from treatment to treatment, in a search for a cure.

Thanks so much for the reply Bob. I will certainly discuss the dosage with my Doc if I don't get relief.

Scott

Welcome scott
   It does take some time for the Verapamil to get into the groove.   Give it some more time.   It works pretty good for me.   :)      hang in there. And try to de-stress.  Stress will make everything worse. :-? :-[ :-/ :'( :D

lorac wrote on Feb 16^th, 2010 at 9:13am:

And try to de-stress.  Stress will make everything worse.

There are many here that will tell you just the opposite, myself included. Once you "de-stress" and relax, BAM! That's when you get hit.

I will be patient with the Verapamil and will try to de-stress. It almost seems like a devine message to me. I MUST find a way to control stress given the challanges I face at work these days. The headache can come on even when I simply TALK about some specific situations at work. Best not to talk about it, right? Thanks for the input!

Scott

Scott, efforts to avoid stressors works to make them a preoccupation!

Gaining some mastery over the issue or of the thought does lead to release, if you are willing to practice....

Take a look at: 

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Cool stuff Bob. You're so helpful. I really appreciate it. I have been complaining a lot lately. Maybe I have a right too. But it does no good. I became conscious of my thinking the other day and I decided to try and think positively. Then I hit a brick wall and got a headache. But today I had a breakthrough at work and tonight my headache is very minimal....for the first time in months! It was a simple but very significant breakthrough. I have been trying for 2 months to "do it all" and I CANNOT. Ah the art of delegation. I now have a plan and I feel better. I know I am not cured of this but I see a light at the end of the tunnel. I continue to take my meds and hope it will help. I now feel more convinced that my headache is psychological as well as physiological.

Thanks again for the info. I plan to further explore it.

Scott