Cluster Headache Lock in with Epilepsy

Wow its been ages since I blogged, and I’ve missed you all !

What with the fundraiser and sorting that out and then the aftermath which was left its been totally crazy. With the added problem of my dad walking out (yes a total other story) and  me being unwell for the past month and 2 weeks (not that I’m counting, grrr) its been really hard. So yeah the past 6 weeks has not been good. It started the day after a trip to the local shopping centre. I didn’t feel great but kinda just kept going. I got home and collapsed – i just felt so ill. My cluster headaches flared up and the seizures just kept going and going. Every cluster was ending in a seizure and it was not good. One night the ambulance was called but i was so determined not to go to hospital and one of the ambulance guys  that came knew me from other visits and was lovely – they all stayed for over 2 hours to get me stable. The outcome was midazolam which stops the seizures otherwise they don’t seem to stop on their own at the moment. luckily i think – I’m on a really low dose cos my other medication makes the midazolam work 3 times as fast ! so being on lots of meds does have its advantages sometimes.

So yes its not been good. for those of you that don’t know me or haven’t read this blog for long. Cluster headaches are “the most painful condition known to man/ or woman” they seriously are and that the doctors definition. The pain comes sudden and server, its like a red hot poker going through my left eye. I can’t see anything out of it yet the right eye is totally fine. The left eye droops and looks like I’ve had a stroke and my left nostril runs and left eye tears. Its all really nasty.

So the treatment for cluster headache is Oxygen, verapamil (which I’m on) and a injection which I’ve tried but sends me into multiple seizures -so my treatment at the moment is limited.

The oxygen does help – as do high pain meds. The oxygen is to be inhaled through a non rebreather mask at 10-15lpm. Its hard at that power but you don’t care cos the pain is so bad. There is a special kit for those of you in america too. Ive read all about it and believe me it sounds great. its called the cluster O2 kit and can be found here….

Cluster O2 Kit  For $23.00 its a bargain, and anyone with cluster headaches in the USA id say get one. All the flaws of the UK National health service mask are rectified in this one kit and id expect the results to be much greater. You can order from the UK however postage for me makes the price too high but I’m saving up for one. Id also advise to get a couple of spare masks if your in the Uk so if one breaks you have one straight away rather than waiting weeks for a replacement because of shipping.

 

This is the piece of art i did for my cluster headache consultant :

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Anyway I am starting to come out of the lock in however still having the major problems during the night. At least it means i can go for little rides out and such.

I also now have a Cluster headache Emergancy kit ! This is a kit or rather a few things that help me during a cluster attack and seizure and feeling really bad with them both.

1) Lucozade; I read somewhere that drinking caffeine and energy drinks at the beginning of a cluster helps you cope. so i have been doing this and yes it does help. It gives more energy to get through it for sure.

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2) Coconut water 100% pure; Coconut water is full of nutrients and will help your body cope with in balances. It has to be the 100% pure version.

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3) Ice pack: an ice pack to hold to your head is a very important part of the kit. Its so so soothing even when the pain is so bad.

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4) Coffee : afterwards a coffee is really good – normally with a couple of pain killers. Don’t buy the painkillers with caffeine with them in the shops – they cost twice as much if not more. You can get the same effect with a cuppa !

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5) A chillow ; Although I’ve said an Ice pack, if you want to lay down its hard holding an ice pack to your head. A chillow is a pillow which is chilled by adding water into it and then keeping it in your refrigerator. (NOT THE FREEZER) . It stays cool for hours  !

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Thats about it for the “emergency kit” they are my thoughts anyway. If you have other things that help you during a Cluster or Seizure attack please comment below and let me know !

 

Ive also been working on a special project which I’m bursting to share with you all but for now your have to wait till the next blog ! ….

One thought on “Cluster Headache Lock in with Epilepsy”

  1. Hi, my name is Kim Busbin, and I too have cluster headaches along with epilepsy. I live in West Point Mississippi and the doctors in this area arent familiar with cluster headaches . I’m now 38 and I’ve been having clusters since I was 23. Epilepsy diagnosed 4 years ago. After my last grand-mal seizure, it took me 2 years just to be able to remember the previous day. I lost who I was and knew I couldn’t ever be that person again. I’m so thankful for finding someone who has the same two conditions together as I do. I also had cancer at 21 and went into remission at age 23 as the cluster headaches began… I feel like everything in me is just wrong and messed up. Although I do have 3 absolutely perfect children and an amazing husband, but at times I feel like I need to do and be more for them… I’d love to hear from you. You give me inspiration and hope.

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