Having a neurological disease is a way of life. Always preparing yourself for home or not home attacks.
When I first got sick. I ended up meeting the wife of a survivor. He flat out refused to meet me in fear of an attack in public and was far to recluse to meet me at his home. I respected his feelings.
When you first get sick most cluster heads go through an array of medications. I would be safe to assume that 90% of us have gone through the Rolodex of prescribed traditional medications for cluster headaches. What I mean is preventative drugs. For me. Not a single one helped but I did have a great handful of side effects. (Another blog).
As Cluster Headache Survivors we learn to prepare ourselves at home first and on the road.
Whether you are episodic or chronic. We have our bucket of medications to try to fight the beast.
The key word is try. This blog today isn't about what medications or tools we use but the fact we need things in order to survive. I call the readiness kit. Some say survival kit.
The most important item to me to have on me at all times is my phone. I need to be able to call for help if needed. My wife being number 1. Then if I am in trouble 911 for hospital, my doctor, surgeon and most importantly a list of number I can call if feeling down that I can call a fellow survivor for support. This is utmost crucial to have. If you are newly diagnosed and have no CH family yet. Make some immediately.Get on a forum like www.clusterbusters.org or a Cluster Headache support group on Facebook or online. Make friends. If meeting them in person is not available then Skype, call, email etc. It is very very very important you as a survivor have a support network.
I am very fortunate and blessed to have a wife, son, and dad very knowledgeable on the disease and knows exactly what to do and not to do during an attack.
At home, we are generally safe. Safe from being judged. Safe from ridicule. Safe from others thinking we are on street drugs having a violent attack. Being home alone isn't good either. Having a loved one who understands, empathizes the disease we endure is very helpful.
Next is to have a friend in your life that understands the disease. Listens to what you educate them on and is willing to help you if in need. I admit. It is a difficult thing to watch a friend have an attack. But it is harder having the attack and trying to stay alive. If you can't stick around for a friend that is sick you are a coward. And they don't deserve your friendship in my opinion.
It is a great idea when leaving the house to have a readiness kit available at out dispose 24/7/. For some it may consist of portable oxygen, medications to abort an attack. For some it maybe an injection. I am not comparing medications list. Everyone's maybe different. But for the most part our carry on meds are usually the same. It is not always possible to have a highly caffeinated drink cold with you. But planning ahead for a store near by or bringing a cooler with that maybe necessary, I always keep a bottle of water in the car. And yes I have had many frozen waters when I needed it or hot water to drink from. Tissue paper is great to have a box around. My nose plugs when I have attacks so I constantly blow my nose during an attack if I can.
Another important tool to have which can easily be made and carried in a wallet/ purse is a medical card explaining the disease. Sometimes in a store I have had attacks. Some I was able to leave and get o my car and others I couldn't. A medical card written by yourself typed out explaining the attack and disease can help prevent the police being called and dealing with it much easier. Watching a 300 lb man having an attack screaming his head off in a department store is embarrassing enough. But having an attack and if you can show your card some how will prevent anyone thinking something else. I had an attack at a cruise night/car show once in front of 500+ people. It was humiliating, demeaning and I completely lost my vanity. Which was the beginning of all my YouTube videos.
Leaving the house with a readiness kit is a great idea to be prepared for the worst. 99% of anyone who knows me. Knows I can cancel last minute, arrive late or leave early and or have an attack when I am there. I can not stop it, I can't not make an attack not happen and I can't help being fatigued, and feeling down after. What people see isn't always what really is. The sad part of an invisible disease is that we look perfectly fine before the attack.
I try to plan ahead road trips, stays and have meds and a plan ahead of time. Because we are so unreliable, we can not be counted on, our plans can change in a nano second and we have o endure attacks lasting 30 min to 3 hours long each attack with up to 15 attacks a day this disease can consume someones day very quickly. Our plans can change very quickly. So we need to think ahead, plan ahead. Have our meds ready to go. Preferably someone with us who is educated and or a pan to get outta Dodge fast and hide.
A very important piece of paper is to educate medical professionals on what we have. I have taken the time to write to each hospital in my city for Triage Nurses to help educate them on what meds to use and to know that non of us are drug seekers for opiates or pain drugs as they are absolutely useless. Having medical documentation on you for a triage nurse will save a lot of grief. Not all medical staff are knowledgeable on cluster headaches and many I have met haven't even heard of it or do not understand the severity of the disease. But I have been looked at like a drug seeker having an attack in ER. Sadly when I say I have had 4 brain surgeries because of it i then get belief. Which bothers me because no one should have to have had brain surgery in order to be taken seriously.
It is a good idea to plan ahead, have your meds and tools ready to go at all times. It sucks we have to plan ahead, that we have to live like this. Being unreliable, being tired, fatigued, worn out and realize that this is won't change.
In 10+ years of being sick. I have learned to do all of this, ditch relationships and friends that were cowards, and make new ones. Educate myself and be ready.
One thing the kit doesn't prepare us for is the actual attack. But just remember, It stops.
Thanks Tom. You are an inspiration ! You're also one of the toughest guys I've ever known. I still remember running across your You Tube channel one day and after reading it, I knew that you absolutely was going thru the same pain as I do. I felt sorry for you at first, just because I know all too well how bad it all really is. The more I read, the more I realized that you really were a Survivor and I felt compelled to reach out and comment on your channel. I'm so glad I did. Keep on doing what you're doing clusterbro and I'm always around if you need me too. Michael aka MrClustersReplyDelete