Bob’s Pocket Guide – Book Three – Tips for Living Life with Cluster Headaches

Opinions, Facts & Observations Book Three Living Life With Cluster Headaches

If you think you’ve tried everything and there are no new options, you’re wrong.

There are many different options available today. Some of which you may have tried and others that are new. There is more research going on right now for cluster headaches than any time in history. Some brought to us by medical science, some still in the research stage that you can participate in, some that have been developed by what is known as “citizen science” (The cluster headache patient community itself) and some being developed by medical device manufacturers. New options, some coming out of labs, some from nature, some from medical engineers.

Some miscellaneous tips & notes on conventional prescription medications.

When discussing any medications, whether they are prescription, over the counter or natural remedies, it is important to remember that old adage we’ve all heard before, “everyone is different.”
Some people have much more severe cluster cycles and attacks than others. Just as some of our attacks are 10s and some are 2s, some people have cycles that are 2s and some have cycles that are 10s. One thing no one should ever feel obliged to do is either justify their pain levels or minimize the suffering they endure. No comparing is allowed. You have what you have and others have what THEY have.

Some people are able to treat their cycles with low doses of medications and others need much higher doses before getting to a therapeutic level. This does not seem to have any correlation with the length or severity of their cycle. Some people can stop a cycle that that is very severe with a low dose of a preventive. Others have much less severe cycles but need very high doses of anything to get any relief.

Tidbits & Big bits

1. Going to the dentist?
If you’re going to have dental work done, and need a shot of Novocain, ask for the injection without the Epi. Epinephrine can induce a cluster.
It’s also a great idea to teach your dentist a bit about clusters and how they are diagnosed. 40% of you had dental procedures done hoping it would help your headaches/toothaches before you found out they were clusters. Teach your dentist for the next person. Toothaches do not happen every night at 3am and last just 45 minutes, EVERY NIGHT.

2. Don’t be afraid to travel.
If your insurance company covers 02, your supplier can most likely have 02 waiting for you at a hotel you are staying. Just call and ask for a rep that handles travel plans. They’ll work out a deal with a local supplier. Bring your mask and regulator. It’s true that air travel can trigger an attack. I’ve heard it said that if you take a capsule of mushrooms prior to leaving for the airport, it can help you avoid that problem.

3. Pain is inevitable; suffering is a state of mind and is optional.
One of our biggest complaints as cluster sufferers is all the things that they take from us. Jobs, relationships, important events etc.

A. Marriage & Relationships
50% or marriages end in divorce. 99.9% of those do not have clusters in their lives. When we complain that someone has left us because they weren’t strong enough or care enough to stay because of the clusters, this diminishes the wonderful people that stay regardless. Leaving is the normal response. Staying and supporting is the exceptional response.

B. Jobs & Workplace
Everyone loses jobs. No one stays anywhere for 35 years anymore. It’s suggested to change jobs every three years if you want to make the most money and rise up in any field.
Everyone has trouble holding a job because everyone has personal issues. Not only are there ways of making a living, especially in today’s cyber world, your goal should be to make a “life” not a living.

C. Vacations & Events
Please do not be afraid to make plans in fear of a possible attack. There are some things that you can do to alleviate some of that fear and be able to treat an attack IF it happens. More importantly what I have found and have heard over and over is that actually going to the event will prevent an attack that may have usually come at the scheduled time. Don’t let the “possibility” of an attack stop you from doing anything. If you stay at home, it was your fear that took away the event, not the clusters.

Here is something to consider.
Cluster used to be called “executive headaches” because people in high stress jobs (as if only executives have high stress jobs) would be fine during the week while at work and then when they headed home for the weekend and began to relax, the clusters would strike.

This is caused by chemical changes in the body that are caused by stress and the release of that stress.
You may sometimes cause a self-inflicted wound that leaves you thinking that you did the right thing by not attending an event and then after not going, you get an attack, making you think you did the right thing by staying away. You have put yourself thru this stress/release cycle.

Don’t stress about it in the first place and you won’t be building up all those stressor chemicals that will eventually release and cause an attack. You’re even better off stressing about it and still going and being a bit stressed while there. It’s when you stay home and relax and release that stress, your couch time will not be pleasant.

D. PTSD & your mental health
A big part of understanding these issues is accepting the fact that cluster headaches very often cause severe PTSD symptoms. The fears we deal with are not something that we can easily get over. Just as we should never just expect a soldier coming home from war to “just get over it” we shouldn’t expect ourselves or those we support to “just get over it.” PTSD is PTSD. Reach out for help. Keep reaching out until you find that help.
Surround yourself with supportive people. Society oftentimes teaches us to believe that it shows weakness to ask for help. It’s not a weakness, it’s a necessity.

May 4, 2019
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