Hi my name is Drenda and I am the wife of a chronic cluster headache sufferer. I really don't exactly know his date of onset because he tried to hide it from me for a long time. He ate bc powder and hydrocodone like they were candy for at least a year before his symptoms got so bad I thought he had had a stroke. In October 2011 my mother died and my husband got worse. On Thanksgiving day he woke up almost in the state of a child. I thought for sure it was a stroke and tricked him into going to the hospital. All they found was excess fluid in his brain. He has no memory of that day. He tried to continue working but could not. He had his own business we had to close down. We went to doctor after doctor with no diagnosis and no help. Finally he was hospitalized and the doctor there saw horners syndrome. He put him on oxygen and he had relief for the first time in a long time. That is the first time I heard the words Cluster headache. They sent him home immediately and said it would pass. By the time we got home he was hit again. I started to notice triggers. I started to notice signs that he had one coming on such as he would drive off the right side of the road or his eye would start to droop. We finally found a neurologist who would listen. He tried muscle relaxers which we found out he was allergic to, verapimil, topamax, gabapentin, and even sleeping pills. Nothing has worked. He has had 6 days total in the course of all this time without a headache. We think we are doing good when he only has 4 in a day. I know this is hard on him, but it is also hard on us as his family. We finally got his disability through a little over a year ago. So as of February he will finally have medical insurance. His personality has changed so much. He is no longer the man I married or the "daddy" he was to our 5 kids. He at times says if they could remove his eye and make it better he would. He has even said that if he knew I could financial support our family he would just end it. It hurts me to see him like this. People around up don't understand why we can't do certain things other families do. They look at him as a drug addict because I carry a bottle of pain pills in the vehicle just in case. His memory is so bad when he is in pain he forgets he took his meds so our friends have even called me the pill Nazi because I have to hide his medicine or he will over take. It is so tough. If there is anything in this world that will stop his pain I would gladly do it. I know most of you are probably clusterheads instead of caretakers so thank you for letting me be here. I am sometimes in need of the support of people who understand. Thank you for reading.

Hi Drenda,
Welcome. And, sorry to hear hubby is going through so much
pain, which is more than common here, and the strain it
put's on you and your family. The treatments most find
success with here, are Imitrex injections, and Oxygen, the
link is to your left on this page. Also find a Headache
Specialist in your area, you can find them listed in the
Yellow Pages. Their will be lots more info coming your
way.

Hoppy.

Thank you. Oxygen helped at first, but the hospital here has a respiratory specialist that says he is a clusterhead, but he is not. His description of his "headaches" was he had a headache for 3-4 days then would get relief for a week or two then have another headache for 3-4 days straight then it would stop for several months. I told him he needed to research more because it didn't sound like what we live with day to day. He convinced the hospital that my husband did not need high volume oxygen, and that the lower re-breather type would work. We never could afford the inject-able imitex, and the nasal spray does not work. I am interested in any kind of information that will help. I am reading the boards here with a lot of interest. A group like this has more information than any doctor we could ever find. Oddly enough I have 2 children with familial hemipegic migraine. Every time we went to the doctor I took printed information in to educate the doctors. Both girls are episode free for now due to taking a small dose of verapimil twice a day, and topamax at night. I just hope to be able to find the answer for my husband as well. Also, does any one else have family members with crouzon's syndrome? My husband has several though he is not himself affected. We are in rural Arkansas so I am thinking of trying to set up an appointment with Dr Boop in Memphis who sees my nephew.

Hi Drenda and welcome

You've found a place where people have a pretty good idea what you're both going through as we all either have CH or support someone who has it. We know how most people just have no idea what any of us go through. But here people just get it, so you're no longer alone.

With the issues around medication it is essential to work with a good, experienced headache specialist as there are multiple different medications that can work, hopefully without hitting the issues of allergies that you've previously hit.

For preventives has he tried lithium? That can work pretty effectively. Another possibility is amitriptyline which although it isn't as effective as some of the others, it could be more a case of finding something that helps which he can take.

Read up about vitamin D3 and how many of us are getting amazing results from it. I'm just under two years pain free with using it and some are over 3 years, with it benefitting about 80% of people who try it. Send a PM to Batch and he'll help you or just look for his posts where he explains things. This has a good chance of not being hit by allergy issues too.

For when he gets a CH has he got anything other than pain medication? Has he tried oxygen (he can't be allergic to this as we all breathe it in air constantly). Using a high flow rate of 25lpm and a non-rebreather mask I can kill off a CH in about 5 minutes, which is a game changer. Read up about it at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

And what will not be easy is to stop the pain medication (many, many of us have been given narcotic pain killers so we know the issues). They do not touch the pain, result in rebound headaches just from taking the medication itself and there are all the issues around addiction too.

Keep reading as much as you can here and you'll learn a lot. Ask all the questions you can think of too.

Just saw your last post so responding to this too as I'm a bit confused by it.


drendalyhnn wrote on Jan 19^th, 2014 at 9:38pm:

Oxygen helped at first, but the hospital here has a respiratory specialist that says he is a clusterhead, but he is not. His description of his "headaches" was he had a headache for 3-4 days then would get relief for a week or two then have another headache for 3-4 days straight then it would stop for several months.

Are you saying that your husband if not a "clusterhead" (assuming this means someone with cluster headaches)? Or is this what the respiratory specialist said?

If a single headache is lasting 3-4 days then this is well outside the normal duration of a CH. The diagnostic criteria for CH can be found at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. The duration is given as "Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes if untreated".

For CH, high flow rates using a non-rebreather mask is the standard, accepted best practice as backed up by research papers that have been published in peer reviewed medical journals (the gold standard). You can find examples of the research at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Sorry you misunderstood me. The respiratory therapist at the hospital said he had cluster headaches himself and told the hospital he know better than my husbands doctor did and talked them into stopping the prescribed oxygen treatment at the hospital when the pain got too bad to bear.

drendalyhnn wrote on Jan 19^th, 2014 at 9:55pm:

Sorry you misunderstood me. The respiratory therapist at the hospital said he had cluster headaches himself and told the hospital he know better than my husbands doctor did and talked them into stopping the prescribed oxygen treatment at the hospital when the pain got too bad to bear.

Thank you for clarifying this.

The respiratory therapist may be an expert in some areas, but for CH treatment he needs to learn to do some research as his knowledge is very much outdated and inaccurate. Do pass on the information you get here, especially when people reference published medical research as he will find it hard to argue against it. Plus he will benefit personally from new CH knowledge.

Based on his description of his CH having a single headache of 3 days or so it is quite likely that he doesn't have CH but something else too. He should be working with a headache specialist too and not relying on his own outdated information.

We are going to talk to the doctor next month about possible lithium treatment. We have tried amitriptaline with no success. 

My husband is down to 4-6 headaches a day right now. He does the water water water thing and sleeps a lot. The neurologist we have been working with just says he wants to keep doing the pain medicine and the sleeping pill. I am scared to death of the pain medicine because of the amount they have him on (5-6 hydrocodone 10/325 a day). We will find a headache specialist as soon as his insurance kicks in next month.

Drenda wrote,
I am scared to death of the pain medicine because of the amount they have him on (5-6 hydrocodone 10/325 a day). We will find a headache specialist as soon as his insurance kicks in next month.

Drenda wrote,

We never could afford the inject-able imitex, and the nasal spray does not work. I am interested in any kind of information that will help.

Hi Drenda,
The sooner he gets off Hydrocondone the better he'll be.
Opiats, don't work when it comes to treating CH's. Some
folk here swear by Imitrex as their lifesaver. So when
hubby gets his insurance, maybe give it a go.

Hoppy.

Thank you. We will try that. Do most insurances pay for that?

I'm not 100% sure. But i think from memory they do.

Hoppy.

Hi Drenda,
Here are a few tips that might help hubby.

Avoid alcohol, and processed foods, Bacon, Cheese, Meats,

Try having a really hot shower, if no success try a cold one.

Get some ice from the freezer wrap it in a cloth and soak
the back of his neck and head. This method is known to
abort a headache in 15-20mins in some folk.

Red Bull, the one that contains taurine, also has a good
record at aborting the beast. At the first sign of a CH
grab one from the fridge and slug it down.

Hoppy.

We had been careful of all energy drinks due to one of them causing a BAD week.We will try the red bull next time we go to town. We also knew beer was a trigger... really bad. Also he has trouble with flashing lights. He threw up on a police officer on our last vacation. You ought to have heard me trying to scream shut off the lights he has a medical condition then blah every where lol. It wasn't funny in the moment but we laugh about it now. We did not know about pressed meat and cheese. I feel really bad about that because we eat a lot of that. We also found that raw onions are also a trigger. This is awful, because he loves them. The laying down thing is almost impossible with him at times. When he gets sinus infections he ends up with rapid fire headaches. I will answer any questions you have for me, and I thank you for being so forth coming with so much information.

Hi Drenda,
The weird thing about CH's is that we are all different. What
is a trigger for one isn't for another. To name a few, Smoking
and passive smoke, Chemical fumes, Perfume, Hot weather,
Cold weather, and so on. I kept a diary and jotted down
things that might have triggered an attack. For me it was.
Alcohol, all processed foods, chocolate, pizza. But, when
not in a cycle i could enjoy eating and drinking all of these.
Their is one more thing you can try. Melatonin, it has a good
record in stopping those night attacks. You need to take
10-15mg before going to bed, it can take a couple of weeks
to kick in. And, you can buy it from your local drug store or
pharmacy.


Hoppy.