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Hi :unsure:

I’m new here and i have never joined or been part of a group or forums.

I have the very rare brain disease Moya Moya with TIA’s & strokes as well as chronic migraine, cronic daily headaches and cluster headache, epilepsy, restless leg syndrome and depression.

My consultant has exhausted all treatments medical devices and medications and is at a loss.  I have been referred to Queens Square London to look at undergoing further brain surgery but this time for the cluster headaches. 

I am in my 20’s i am exhausted daily - i either sleep and woken up by headaches or I don’t sleep at all one night and have energy the next day (i put it down to adrenaline).  I have a 4 year old daughter who is so good with my medical problems - when a cluster attack comes on and i am on the floor screaming begging for help rocking forward and backward she goes in to my bag and takes out my sumatriptan injection cartridge and gives it to me. She has done this since she was 2 1/2.  I have been under the same consultant for 14 years and he now holds his hands up and says he is at a loss and doesn’t know what else to do.  I have gone through the gammacore device, celefax head thing, he went to the board and got funding for Botox injections of which i had 30 injections at a time and nerve block injections.  I am taking 10+ medications daily which depresses me every time i see them in my hand.

Has anyone had any luck with any treatments?

I’m loosing faith that i will ever get any relief. 

 

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You do have a lot going on but you are in a good place here. I only have experience with the Clusters, I am chronic. The first thing I would say is get  a prescription for Oxygen and get a cluster mask from here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit 

you will want high flow rate and pure oxygen. this will help abort your cluster without the need for other medication. I also drink a 5hr energy drink at the first feeling of the cluster coming on.  I do not know if the 5hr drink would conflict with any of your other issues so I would look into that. 

We have a tun of other information on this site you can read up on and pick what route you want to go. Read and ask questions. 

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Hi Headsufferer,

Welcome to the forum, really sorry you have to be here.

In 2006/2007 I transitioned from male to female, and the hormones I took altered my hypothalamus, which, among other things, impacts headaches. I've always had periodic migraines, they run in the family. But in Jan 2007, I was diagnosed with daily chronic headaches, chronic migraines and cluster headaches, which turned chronic. From 31 Dec 2006 - July 2007, I had one constant non-stop headache + migraines and clusters. In 2011, I had 257 cluster attacks, 276 daily headaches and 42 migraines (each lasting 3-7 days). 

Not sure we can solve all your problems, but there is hope. Trust me, there is hope.

By Nov 2011, I was getting 2-5 severe cluster attacks every 2-3 days. It was then that I sat down to put a date in my calendar to exit planet Earth, and then I remembered this forum, and logged on. I had given myself one year to find a solution. And hey, I'm still here. You can be too. 

I weened myself off of topiramate and started busting on 14 Dec 2011. I still have chronic cluster headaches, maybe 2 or 3 a month. They last 30 seconds to a few minutes on average, and although they can be sharp, I wouldn't call them painful. In 2012, after I started busting, I only had 3 migraines. 

I was seeing a neurologist at Addenbrooke's at the time, btw. He too had thrown his hands in the air as to what to do next. That was one of the reasons I started treating myself.

As for restless leg syndrome, I stopped having caffeine after 5pm as my restless leg usually happened at night. No coffee, no soft drinks. I also found having a hot bath or spraying hot water on my legs when they were being restless helped. And, get exercise if you can - although I appreciate that is difficult. 

As for clusters and migraines, start reading the Clusterbuster Files section. Go through it with a fine toothed comb, especially the bit about playing well well others. You may find some of the meds you're currently on will prevent the methods we talk about here from working. And yes, they do work. Oh, and busting will also help with the depression.

As far as epilepsy goes, cannabis I think is good for that. For some people, it makes their clusters worse, so tread carefully. 

Your daughter sounds absolutely wonderful. I hope we can help so she doesn't have to worry.

MG

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Good point, well presented FunTimes.

Oxygen is your best friend. And check out the Vitamen D3 regimen. There's plenty of information about it in the Clusterbuster Files section. You can start on that right away and it won't (shouldn't) interfere with anything else you're taking.

MG

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Hey Headsufferer,

Welcome to Clusterbusters.  You need to join Clusterheadaches.com at the following link and talk with DJ, a.k.a., Dennis Johnson.  He started CH.com and had Moya Moya.  He also had surgery for his Moya Moya so will be a valuable resource for you.

www.clusterheadaches.com.icowww.clusterheadaches.com

Check your message InBox, I've sent you some additional info.

Take care,

V/R, Batch

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Welcome Hs...........what Batch said!

.....there are clusterheads alive today because of DJ...and when ya get to (ch.com), poke around, won't find much re Moya Moya .....but there's 'bout 20 yrs worth of collected clusterheadache info unavailable anywhere else.................

Best

Jon

Edited by jon019

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Welcome! 

O2 needs to be used in a specific way to work. Most doc's do not know this or do not mention it. CHFather has written a wonderful paper on O2 that is in the Clusterbuster Files section of the board. HOW you use it is the most important thing. 

The short and skinny version is to use a flow of 15lpm to 25lpm at first and hyperventilate - breath in deeply, hold for a few seconds and exhale with force. IE: Do a crunch at the end to remove all the CO2 that you can. When the pain subsides your breathing can be slowed down. Then, when you are pain free, stay on the O2 at a comfortable flow rate for about 5 minutes. If you don't that hit is going to come back quickly. And you will swear that O2 does not work or it is causing more hits! 

Please give your little daughter a hug for being a hero!!! 

ATB!

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