What do sufferers need from supporters?
Thanks to Shell for starting this list in the forum.
- Keep fridge stocked with Redbull (energy drinks with the combination of caffine and taurine).
- Make sure there is a constant supply of Oxygen and medications required.
- Keep stock of Magnesium, Calcium citrate, D3 and Iron.
- Have a pile of soft hand towels, ice packs, heat packs and tissues available for attacks.
- During an attack give space, but not far ( just outside room) so if your called you can be there immediately.
- Make Dr's Appointments
- Research and Educate myself on available treatments, medication's and options.
- Keep a folder of relevant medical articles and headache history so as to be able to advocate for the sufferer if needed with medical professionals. Also have contact numbers for doctor's and specialist's.
- Download a copy of the colleague's letter and print copies for family and friends at: http://www.ouch-us.org
- Be SUPPORTIVE (your sufferer is going through hell).
- Be UNDERSTANDING (try your best)
- Be STRONG (don't let them see you cry).
- Be LOVING, COMPASSIONATE & EMPATHETIC.
- Don't hassle them to talk about it (they will talk when they are ready).
- Never say or think what your sufferer is going through is like a Migraine! The term headache doesn't cut it, remember that this is the most excruciating painful condition that can be suffered by a person.
- Give them reasons to smile, the little things are important!
- Never blame the sufferer for having cluster headaches, its not their fault they suffer from such a horrible condition, they didn't do anything to get the condition, it's just one of those things that life dealt them!
- Be patient with them.
- I know all to well the frustration of not being able to help, the exhaustion and yes the pain that supporters also feel, although it's not the same physical pain that you sufferer is going through, the emotional pain that a supporter feels is all to real. You must be aware of this and also look after yourself! The supporter is there for the sufferer, but the supporter also needs support, so that's why we are here! If you need to talk, rant, rave or question anything please do so, together we are strong.
I have awful feelings of being alone during stages of an attack--I recommend it is better to say be with someone during an attack unless told to go away. (this is where it is important that the relative/friend needs to know what to do--my poor husband had no idea what was going on in the early days)
It is imperative that someone is with a person during the agitation period to ensure that they do no harm to themselves (I have had to be physically restrained at my worst)
Supporter need to be aware that could be abused and loved within seconds of each other, they need to be patient
Supporters MUST NEVER say they know someone with headaches or that they have headaches too
Supporters should never question or recommend any other treatment during an attack
Do not sympathise, but do not say do not cry--(liable to get a response from me --I'll bloody cry if I want to--don't tell me what to do!!--in my angry stage)
I must have access to a clock or a watch, as I time everything.
Water, water, water
I have to move, dont restrain me
An ad to help cover the costs of keeping this site up: