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Portrait of Bob Wold in a circle frame.

Bob Wold’s Journey to a Cluster Headache Diagnosis

It is an exciting time in the migraine and headache disease world of treatment research. In addition to CGRPs being approved for the prevention of migraine in 2017, one of these CGRP drugs, Emgality, was recently approved in the US for decreasing the frequency of episodic cluster attacks.

In the midst of these recent medical breakthroughs, I had the pleasure of speaking with Clusterbusters president, Bob Wold, about his personal journey with cluster headache and how it lead him to create an incredible organization for people with cluster. In part one of this interview series, Bob shares his long journey to receiving an accurate diagnosis.

Do you recall your first cluster attack?

Yes, I remember it perfectly even though it was 40 years ago. It was a nice weekend day in the spring and I was outside my house playing football with my 6-year-old son. My head started to hurt and I came inside, sat down, and it proceeded to feel like it was going to explode. There weren’t any other attacks leading up to that. It was an hour of terrible pain that then disappeared. It was as surprising as the pain was in that it just came and went like that. I remember it so clearly.

What was your diagnosis journey like?

First, we thought they were sinus related

It took me 4 years before I ever heard the word “cluster headaches”. After that first attack, I went to my general practitioner that I had been seeing and he thought it was likely sinus related so he prescribed an antihistamine, Tavist-D, which was an over the counter at the time. After a while, it seemed to work because my headaches stopped, so I assumed that is what it was. The headaches came back in the fall and I was sure I had another sinus problem so I went and got the same medication again but this time it didn’t help at all. I had tried a few different medications and the headaches went away so I figured that it was sinus issues that just took longer to clear up.

Then, we thought the pain was coming from my teeth

Then they came back again and I thought for sure it was my teeth because the pain travels down into my lower jaw and it feels like a toothache. It felt like the pain was starting in my jaw and going up to my temple rather than the other way around. So I went to my dentist who took some x-rays and couldn’t see anything but ended up doing a root canal on one of my molars. A week later the attacks were still there so I went back to the dentist who said “maybe we didn’t get all of the root.” So I went through a second root canal but that didn’t work. I went back in a third time and the dentist pulled the tooth. The pain didn’t stop at all.

Through all this time, did the doctors ever ask you to describe the pain?

I don’t remember all the questions they asked or specifics on how I described how intense the pain was. This is a problem with cluster headaches: trying to describe the indescribable. I don’t know at that point if we had even zeroed in on the timing – that they were always the same time or that they lasted the same amount of time. We were still trying to figure out where the pain was originating from. After the dentist pulled the tooth, he gave up and said there was nothing left for him to do so he suggested chiropractor.

I tried seeing a chiropractor and getting accupuncture

About three years after my first attack and trying to receive treatment from my general practitioner and then the dentist, I went to see the chiropractor and explained what was going on. He was confident he could clear it up and said, “If I haven’t cleared these up for you in three visits, you probably have a brain tumor.” After three visits with this guy my clusters were getting worse so I thought, “Well, shit, I have a brain tumor.”

After the chiropractor made things worse, I was going to acupuncture. The only relief I got from that was the massage tool and TENs unit he used on the back of my neck. You can use a TENs unit on your head but you’re not supposed to put the electrodes on both sides of the head at the same time. But during a cycle, that’s exactly what I did. I put the electrodes on both sides of my temples, turned it up all the way and thought, “I’ll fry it out”. I turned it up all the way where I actually froze my entire body and it didn’t take away any of the pain.

After a scan showed there was no brain tumor, I was back to square one

After the chiropractor gave up and said I had a brain tumor, I had a scan and was expecting I had a brain tumor. When the doc came in he was happy to tell me, “there is no brain tumor.” I was actually disappointed in hearing I had no brain tumor. At that point, I would have been happy to hear that they found out what it was. I was still back at square one.

My family found the Diamond Headache Clinic where I saw Dr. Freitag. He was the first one to mention “cluster headaches”. He said it was obvious, “you definitely have cluster headaches. That was 4 years into my life with cluster headaches. That was probably my 8th cycle by the time I got to the Diamond Headache Clinic. I would go 6 months out of every year in cycles. I’d be in a cycle for 3 months, out of it for 3 months, and then back again.

Three months of constant pain?

Yes, my normal cycles were 6 attacks a day. Depending on what medication I may have I could never get it down under 3-4 takes a day. Prednisone cut the attacks down but I had to be on high doses for a while. When I’d cut back on the prednisone, the clusters would come back worse than when I started. The last time I took prednisone and was off of it I was getting 12 attacks a day for an hour each. 1 hour on and 1 hour off. I hadn’t slept in a month.


Please stay tuned for part 2, where Bob shares what it’s like for people who get diagnosed with cluster 40 years later today. Spoiler alert: it can still take years for people to get diagnosed and Bob shares that many still see a dentist and have dental work done first, unnecessarily.

Comments

  • lightweaver
    4 months ago

    I could not have lived without home oxygen. It calmed even in the middle of the night. 30 years ago my dr. knew about it or my head would have hit the wall 1 too many times.

  • deedeevee1
    5 months ago

    I can totally relate to wishing it was a brain tumor!! I know that sounds TERRIBLE but at least it’s concrete and it can be removed. I too went to my gp, dentist, chiropractor, neurologist, and the diamond headache clinic!! I’m sooo curious in the rest of this story. It’s like I wrote it. Except it took me way longer than 4 years to get an accurate diagnosis and I don’t have cluster migraines. Thanks for sharing. Looking forward to the rest. D

  • pwrnapper
    5 months ago

    I also after over a decade of misdiagnosis and treatments that did not help and sometimes actually hurt was I finally diagnosed with Chronic Cluster Headaches. I went through all the treatments Bob did and then some, took so many different types of medications I can’t count that high and finally found relief from my current Headache Neurologist. Until last year my treatments were limited to aborting the CH once they start with O2, DHE injection and cold packs for my neck. Thankfully Aimovig came out last year and my doctor got me a script. I can honestly say that within 3 months my CH totally went away, over a year now with relief. But it took many years of frustrating doctor visits, treatments that did not work, lost days at work and tens of thousands in expense.

  • Joanna Bodner moderator
    5 months ago

    Wow @pwrnapper this is fantastic to hear since you began taking Aimovig that you have experienced such great relief! How about side effects? Have you been experiencing any? Major kudos to you for NOT giving up to find relief despite the countless doctors, treatments, etc. Great hearing from you!

  • pwrnapper
    5 months ago

    Hi Joanna: Yeah, I’m not a qwitter normally and tolerate a lot before giving up. I am quite pleased that the Aimovig worked for me. Once my doctor raised the dosage to 140 mg within a few days my Cluster Headaches were gone. Not to say I have not had one here and there but compared to 5-6 per day during my cycle what a relief. I’ve maybe had 4-5 in the past year. I have a lot of other health issues I deal with too. Peripheral Neuropathy, Fibro, Spinal DDD, arthritis, etc so I live in constant pain at different levels throughout the day but I can deal with that as long as those Clusters are gone. As most CH sufferers know it is the worse pain known and when they happen totally at random like mine did trying to live a normal life is impossible. I feel sorry for my wife the most since all my medical issues affect her dreams and plans during our retirement. We’ve been together for 51 years now and are best of friends. Side effects, yes a few. Constipation, weight gain and tiredness, nothing major compared to Clusters but now I’ve had to start taking Probiotics and stool softeners, more pills each day.

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