Hello my fellow sufferers. I've been suffering from clusters for nearly 10 years now, usually with a cycle of dancing with the devil for a month or two and gladly bidding him adieu for 2 years at a time. My last remission was blissfully long at 2 years, 10 months. Alas, he has reared his ugly head again and made my life hell for the last 3 weeks. I have a rare day here and there where I am pain free and the happiest person you'd ever want to meet. It's amazing what NOT feeling pain for even a few hours can do to your mood, attitude and feeling towards life in general. I've learned to be suspicious of those days though because I pay for it dearly. The most intense, GOD AWFUL attacks always hit immediately after.  What a tease they are.

I have two young children, 2 and 7, who I unfortunately have been terrifying during my "episodes" as my husband has come to call them. God bless him for understanding and doing his best to shield our girls and offer comfort to me where/when he can. He's amazing and I'm so thankful to have him there during the 1-3 hours that I'm sobbing and screaming and slurring profanities and begging any power that be to make the pain stop...on the nights where the pain has been so intense and lasted so long, that by the time they leave, I have literally passed out on the floor and he picks me up and carries me back to our bed. My mother also suffered with clusters and the lucky b**** has been cluster free for over 10 years now. I'm hopeful that eventually I'll be able to say the same, if these things are genetic and follow suit. My bouts usually only last for a month or so, and for that I am also thankful.

I have seen so many of you that suffer chronically or months on end before going into remission. God love you all, because I don't even know how you are able to maintain any level of sanity or positivity. I'm right in the middle of the muck right now, pain at a constant 5-7 with peaks hitting a damn 82. Praying daily that today is the last day, that tomorrow the devil will have gone and I can cry tears of joy and relief...no more fear of what the next 10 minutes will bring or terror when I feel that familiar tension in the back of my neck and blurred vision in my right eye. God love you all -- as much as life sucks right now, as much as I know life sucks for you too...I'm thankful that I'm not alone and that somewhere out there, people know exactly what I'm feeling

Hi Yvie and welcome

From your description of your CH lasting 1-3 hours it sounds like you don't have anything to abort a CH when you get one. Have you tried using oxygen or injectable imitrex for your CHs? They can both kill off a CH in under 10 minutes, which is life changing compared to going through the torture of a full CH. Using oxygen at 25lpm and a non-rebreather mask I can kill mine off in about 5 minutes, which is simply life changing.

Similarly have you got anything to help prevent CHs? Something like verapamil or lithium? Preventives can help cut down how many CHs we get.

Tell us more about how you deal with your CHs and we can help suggest somethings that might help.

Welcome to the board Yvie. Have you had the chance to work with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. As Mike mentioned, the old days of suffering through a hit un-aided are LLLOOONNNGGG gone! I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. I have 2 daughters, now grown and gone, but by the time they were 12 they could both rig a regulator on an e-tank. Letting them help battle the beast helps alleviate their fear of the attacks because now they can actually do something about it. Read this link as it must be used correctly or it will not work

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This link will show you how to get set up with welding oxygen:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

If you're getting woke up with the night time terrors, consider adding melatonin to your arsenal. An over the counter sleep aid, you have to play with the dosing, start with 9 mg about 30 minutes before bedtime. Some go as high as 18 to get relief, many can avoid the night time terrors using it.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

What Joe said... and YOU are not ALONE..  :-*

What they said.  i prefer 5hr Energy drinks because they are small and I can carry one in my pocket.  You can carry one in your purse or diaper bag if you still carry one.  I try not to leave home without it. 

I second what Joe said about the Vit D therapy.  I'm not PF, but they have greatly diminished both intensity and frequency of my hits.  Unfortunately, I have other medical conditions that interfere with the Vit D therapy. 

I strongly suggest you look at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE even if an alternative remedy is not for you.  You can learn a lot about the malady over there.  Also, in Sept they are hosting their annual convention and conference that can be life changing both for you and your husband.  The opportunity to meet others with the illness is very cathartic, as you get to share experiences with those who truly understand.  Your husband will have an opportunity also to meet other supporters and can gain understanding and knowledge.  This conference is very valuable even if the alternatives are not an option.

All the best,

Jerry