Hi my name is Valerie and I live in Indianapolis, IN. I was diagnosed with clusters last week by my new headache specialist. I've thought that's what they were for a while now. Been having headaches for about 9 years now. He put me on indomethacin er 75mg 1/day, cymbalta 60mg 1/day, trileptal 300mg 2/day, gabapentin 300mg 2/day, and zanaflex 4mg 1/day. Anyone have any thoughts on these? I am able to work still but it takes all I have in me to not go completely crazy. I am having 4 to 8 headaches a day. I'm not very familiar with treatments for clusters. I'd like to see if someone in my area has clusters that could help me out. I am pretty much dealing with this by myself. I have family here but they don't understand.
Thanks in advance.

I have scalp tenderness and numbness on my ch side too.

Hello Everyone...just joined today. I live in Mooresville, IN (just outside of Indianapolis). I was diagnosed with cluster headaches back in 2008 after several trips to the ER on consecutive days. Each day I thought I was having a stroke or something because the pain was so intense. I had experienced similiar pain the previous year, but had suffered through them because they were not too intense. On the second trip to the ER, the doctor on staff diagnosed me with cluster headaches, and wrote me a prescription for Norco, Imitrex self injection, and prednazone. The prescription was for only 3 doses of Imitrex, which of course I was out of in 3 days. The Imitrex worked almost instantly, and I tried to save the doses for the more severe ones (which usually occurred at night). I then called to see if I could get a refill of the Imitrex, which the doctor obliged, however, my insurance would not pay for it. The doctor referred me to a Neurologist. (sorry I cannot provide any additional specific information, this happened 4 years ago, and I did not keep track of anything back then.) I called the Neurologist, and scheduled an appointment, however they could not get me in for almost a month. Well, the "cluster period" only lasted about another 2 weeks, so I decided to cancel the appointment. After doing a little research, I decided it really wasn't worth my time to try and get into a neurologist or ER for meds when clusters were going to only last about a month. Figured I would just deal with them.

The headaches came back the next year, but not the same time of year as the previous two. The previous two years, the headaches occurred in November, so I thought maybe it had something to do with the change of seasons. In 2009 though, they started up in July, and they weren't like the previous two years. The previous two years, they started out as just an annoying pain at the same time every night. Then they would be "mild", then pretty bad, then just gone. Not this time. These came on strong immediately, and were by far the worst incidents I have had. I had to bury my head in my pillow and scream, and felt like beating my head against the wall (which I actually did one evening). The duration was 2-3 hours each night, around 11, every night, for about 2 weeks.

I have been pretty lucky since then. Until the last month, I had only had 2 occurrences of the headaches since July of 2009. In fact, I had almost forgotten about them completely until about two weeks ago. Once again, the headaches are back, and once again, the pattern has changed. I still have the most severe ones at night time, but I am having up to 4 a day now. I have been woken up in the middle of the night with them, and really there seems to be no pattern to them whatsoever.

I feel fortunate that this round so far I have only had 3 fairly severe incidents. But I do have some questions...

1. Alcohol / tabacco use. I have read that alcohol can bring these on. However, the more severe occurrences have happened when I have not had anything to drink in several days. In fact, it seems sometimes that if a headache is coming on, a few shots of whiskey nips it in the bud. Then again, on the other hand, I almost always get one when I have a few drinks. If I stop drinking, they get worse, if I keep on drinking, they don't seem to intensify. So I am really confused about the effects of alcohol on these, and if there is an medicinal benefit. Also, I am a smoker. I had an occurrence last night that was pretty severe, and the only thing that at least got my mind off of it was constantly smoking (ya ya i know I know...thats not good for you regardless...). Does tobacco use increase the risk?

2. Treatement. Ok, so whats the course of treatment for these? Is there a way to prevent them? Is there medications that actually work (besides the Imitrix, which I simply cannot afford...I am not a wealthy man and have 4 children). Should I see a Neurologist or will just a primary care physician do?

3. Can these be related to stress at all? In 2007 me and my wife seperated, in 2008, my wife left me, in 2009 there were multiple issues. In the past two months, I have had a baby (colliky at that), moved, been given hell by my HR department about taking leave to care for my son, and dealt with Post-Partum Depression with my girlfriend.

I look forward to browsing the forums and picking up as much info as possible. But since I am fairly new to this, any Information that you guys can give me right of the bat would be great!

Thanks!
Jeremiah

Jeremiah, Sorry I missed your post! Definitely get to the neurologist. CH is a lifetime afflcition, it will most likely keep coming back, chainging in duration, intensity and timing. The sooner you start working with a specialist the better. 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 34years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

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. Read this link as it must be used correctly or it will not work

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or


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.

Go to the medications section of this board and read the post " Anti-Inflammatory Regimen and Survey” It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH!

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.

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

Real, real good.

Clean up in aisle 12.

Joe, thanks for the reply. So it seems that I need to follow both yours and my girlfriends advice and make an appointment with a neurologist. Since it can take quite some time to get in to see them, will they still be able to diagnose the headaches even if they are not occurring at the time?

Energy drinks huh? I like those anyways! Only problem with that is these usually occur about 10-11 pm, and I get up at 4:30 for work. Those might make it a little difficult to get back to sleep.

I'll check out the link you added as well as the message boards here...looks like the best thing for me right now is just to break down and make the appoinment...

Thanks again for the reply!

Thank you Joe for the reply.  I am using a regular face mask and recently had my oxygen bumped up to 15 liters per minute.  I was told they do not have concentrators that go that high so I have this huge tank of liquid oxygen in my foyer..lol.  My nuerologist recently diagnosed me with chronic cluster headache, and I am taking 480 mg of Verapamil per day, along with the oxygen.  He also prescribed me Migranal in the nasal form and also Indocin as a backup.  I have not tried the Migranal or Indicin yet.  If anyone reading this has tried either Migranal or Indicin I would love some feedback on your experiences with them.  Right now Im on day 5 of no headaches, but never go longer than 7-10 days without them coming back so time will tell if my meds are working or not. Im hoping they will.

Hi. My name is Harry. I live in the United Kingdom. I'm 28 years old. I started suffering from severe headaches about 3 years ago now. It seemed to start after I left a tooth a little too long before having a root canal done on it but that may have just been convenient timing. After 3 years, 10's of doctors and dentists visits, 4 teeth being removed on the right hand side of my mouth including surgery, misdiagnosed as suffering from Trigeminal Neuralgia, and an awful lot of pain, I have now diagnosed MYSELF as suffering from cluster headache disorder. And the doctors are agreeing and finally starting to take note. About time. 

While searching on the Trigeminal Neuralgia UK societys homepage, I came across the section entitled 'Other possible causes of your pain' section. I was lucky to find it. But I am so glad I did. My symptoms and profile just fit cluster headache perfectly. 28 year old male. Up until 3 1/2 weeks ago I was a smoker... (I swear the nicotine patches I am using are the cause of my current bout of headaches...). I have bouts of headaches usually lasting between 2 - 6 weeks at a time. I generally have around 4 attacks a day. They last 45 mins at a time. They only occur on the right hand side of my head and face. The pain is truly sadistic in nature. I broke 3 fingers on my right hand at the same time, and that was NOTHING compared. They mostly come at night, mostly. Usually an hour after I fall asleep. Remission will happen suddenly, and then I will forget they ever happened, until they come back. Oh, and alcohol makes it WORSE! So I am quitting drinking. And that my mean, FOREVER! (but I doubt it...  )

Other than these headaches I am the picture of health. A little depressed maybe. My life recently has been a bit topsy turvy. And this current bout of headaches is not helping matters. But i'm sure everything will be ok. Going back to university in september to study to be a teacher.

In terms of treatments, its early days. Painkillers I have used for a long time... But of course, they do JACK. Due to being misdiagnosed with TN I was on 200mg carbamazepine a day, up until three days ago. I am now tapering my dose off under the advice of my doctor and the new diagnosis. I had tried low does TriCyclic antidepressants as well. But to no affect. I have been prescribed Zolmitriptan nasal sprays to try and control the attacks when they occur. Had one last night, it kinda helped, I guess...    not really sure. I am seeing the doctor again on Thursday to discuss preventative medication. Like I said, I have only just been correctly diagnosed... So its early days.

No alternative treatments as yet. Early days.

In terms of limitations, I try and lead as normal life as possible. Thankfully I am an episodic sufferer. I do have remissive periods. (My heart truly goes out to any chronic sufferers out there. I cannot imagine what life must be like for you... My eyes are welling up a little even thinking about it.) 

When going through a bout of headaches, it badly affects my sleeping patterns. Its obviously inadvisable to drink alcohol, at all... But i've only just found that out. So it has affected social occasions and visits to the pub on more than one occasion. It affected my relationship with my ex girlfriend (but wasn't the reason she became an ex!  ) because she couldn't help me and it must have been horrifying to see me pacing, whimpering and in such horrible pain at times. And when I am in a bout, I am truly TERRIFIED of the headaches. That clawing, knawing, anxious fear of having an attack... I feel my temple twinging right now even thinking about it!   

In terms of social support, its hard. I have family around me, and they are being very supportive. My parents live in Hong Kong. Going to see them on Friday... Should be nice. Dreading the flights though, if I have an attack! Still... we will see.

I now have a much better understanding of cluster and its treatments thanks to this website. And the excellent information contained on it. I am moving to Sheffield, UK in around 6 weeks, and they have a world class neurology centre there. I am looking forward to actually seeing a neurologist/pain specialist/headache specialist who knows about these things and can actually advise me properly. Rather than dentists/GPs who know very little.

I have started a headache diary. I have tried before but now I will be really meticulous about it. It is reasonably comprehensive. I have no idea what my triggers are really. Except for sleep and alcohol. Sometimes eating will trigger it off... but i'm not really sure what foods. Perhaps it is just the motions of eating?

Well, thats me. Hello! Thanks for being here! Its nice to know that i'm not alone, and that I finally know what I am suffering from. Its better to know than not IMO.

Welcome Casey,

   The ER can prove to be incredibly frustrating and nearly useless. Head over to the "Medications, Treatments, Therapies" section of the board and read the post "123 Days PF and I Think I Know Why". It is a Vitamin D regimen that alot of us are finding relief with. It's a long read, but worth the time.
-dvb

Hello to everyone!  Glad to see so many educating their doctors and taking control of their life back!

I'm sorry for your pain, but so glad you found us.  Hopefully something you find here will help you!  I know it has me.

Take care,
Mel

Name is tex, I've been fighting the "demon" 20 years and counting. Reading some of the others descriptions make me smile/cry knowing there is others out there dealing with this same crap!!! Diagnosed when I was nine, I remember my first episode..... Banging my head into the wall screaming like I was going to die, little did I know 20 years later some days I pray and beg for it. I am one of the "lucky" peeps that are chronic... Longest stretch was 2 years of two a days followed by three months of re-mish. I know we all have our own ways of fighting the beast, although light weight UFC gloves combat the self inflicted black eyes (not kidding). I guess I don't think I need advice since what works for one rarely works for all. I hope everybody finds this message well and in between attacks. Thanks for the vent and hope to chat soon!