Trying 70 Different Treatments for Cluster Headache
In part 3 of an interview with Bob Wold of Clusterbusters, Bob shares his experience of trying 70 different medications over two decades, and what he eventually found to relieve his cluster headache attacks.
How many different treatments were you prescribed?
For 20 years, I tried 70 DIFFERENT prescription medications and hundreds of combinations. That’s really typical for people with cluster to get prescribed 3 or 4 different medications. If they get 10-15% reduction in cluster attacks, their doctor will keep them on that then add more and more prescriptions on top of what they’re taking. I was on 8 different prescription medications at a time trying to figure out different combinations that worked.
Trying different doses and combinations for episodic cluster headache
Being episodic sometimes makes it difficult to figure out what’s working since some medications take a couple of weeks to start working if at all. Others can take longer such as lithium which can be started on a low dose and then increased for 3 months before you get to the right dose. Despite everything I tried, nothing worked as a prophylactic. I was never able to find anything to stop the attacks other than prednisone. I started at 80mg of prednisone and then tapered off 10mg at a time. When I’d get below 60mg the attacks would start coming back again. So for a week or so, I’d be on a high dose without any attacks but that’s a miserable way to live on that high of a dose of prednisone. Lower doses didn’t work so other medications got added.
I’ve tried the max dose on all the medications including Topamax, lithium, all types of blood pressure medications, verapamil, antidepressants, and whatever I was using as an abortive. DHE injections were working to abort the attacks. I have given myself thousands of those injections for a lot of years until I finally ended up getting oxygen. Oxygen didn’t work when I was first diagnosed but I was on a low dose like 7 or 10 liters per minute. When I tried high flow oxygen again it worked. I still order that as an abortive at the beginning of a cycle now.
What was your breaking point to stop prescriptions and try something else?
I was online in a message board way before Facebook. It was a migraine group where people were sharing lots of frustrations. One of the guys in the group had cluster headache and was from Scotland. He asked if anyone had ever heard of LSD possibly helping cluster headaches. People jumped on him saying "No, this isn’t the place to be if you’re looking for drugs." He shared information on the doctor who discovered it was working with ergotamines. Back in the 50s and 60s there were a lot of studies with LSD and psilocybin mushrooms for treating OCD and alcoholism. All of that research stopped when it was made into a schedule I drug in the early 70s. More people started trying it though since they had heard it could possibly help. Since people couldn’t access LSD, they started growing their own homegrown psilocybin mushrooms.
I was considering three different surgeries for cluster headache
I was involved in those early discussions and looking at research. I wasn’t in a cycle at that point but then I went into a really bad cycle. I had gotten off the high dose prednisone and was going through a period of 12 attacks a day. I was evaluated and approved for 3 different surgeries. I flew to Houston for the radiofrequency ablation of the trigeminal nerve of one side of my face. I was going to see a doctor in Pennsylvania who pioneered microvascular decompression (where they drill a hole in your skull behind your ear and wrap your trigeminal nerve with Teflon). There was also the gamma-knife option at Northwestern University in Chicago.
Feeling the pressure lift after trying mushrooms
I was trying to choose between those three surgeries but then someone reminded me online about the mushrooms and figured it was a last-ditch effort before going into surgery. A couple of doses of these mushrooms magically appeared at my doorstep. I took a dose and it was a profound difference in treatment. After all the different treatments with a pill that covered up the pain, I took the mushroom and all of the pressure was completely relieved. My head felt clearer than ever in 20 years. I knew this was something completely different and I ended up not making any of the surgery appointments. That's when I started down the road of researching psilocybin.
Managing cluster the past twenty years
That was in 1998, and since then I’ve been able to avoid a lot of my cycles by taking with what’s called a maintenance dose. If a cycle does start, I take a couple of doses and end the cycle within a week or two. I’ll still order oxygen during those cycles and I’ve had DHE nasal spray as an abortive for any difficult cycles. Other than that, I no longer use DHE injections, Imitrex, or Verapamil or any other preventive for 20 years. It was such a profound difference. You could tell you weren’t covering anything up. All those years where I spent months on high doses on Topamax not being able to find my keys, or high doses of lithium and having difficulty recognizing my family members. I took this one dose of mushrooms and I could feel all the pressure just drain away. The fact that I wasn’t feeling drugged up and I was feeling so much better was quite a difference.-- Stay tuned for part 4 where Bob shares how his journey led him to creating Clusterbuster. Here are parts one and two of Bob's cluster headache diagnosis experience.
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