Hi Lowend Lover   , welcome to your new family - the Clusterheads.  I,m glad to hear you have started on the D3 regime. Hopefully you will be one of the 80% who benefit greatly from it.

Have you tried the energy drinks tip? Also check out  "oxygen info". There is a yellow tab on the left of your screen.

Keep coming back here and read all you can. The folks here know more about CH than any doctor you will ever find. Because of the lack of knowledge among doctors we have had to learn for ourselves, and every one is willing to share their experiences and knowledge. Every single one of us knows exactly what you go through.
I'm glad your expected pain didn't happen. I hope you have many more pain free days.
Maz.

Thanks for the warm welcome Hoppy and Maz!

Sorry I'm taking so long to respond. Was very busy yesterday.

Hoppy, I'll give you some more background info. It's a lot so please bear with me here.

I first started getting these headaches when I was 18 back in 2004. I was a freshman in college and was home on winter break. I only got a few of them that year if I remember correctly. They weren't the painful ones I've experienced but they were bad enough that I went to see my family doctor. After I described the pain he ordered me an MRI to rule out a tumor or any other life threatening issue. The results came back that there wasn't anything wrong with my head, and by this time the headaches were gone. My doctor thought they might be migraines because my dad has migraines. Also, nobody new how short in duration the headaches were because everytime I got one I would take some sort of pain reliever and assume that was why they weren't lasting for longer than half an hour. My doctor told me if they came back or got worse we could look into them more but to otherwise not worry about them.

After those headaches in December of 2004 I didn't get any again until spring of 2006 in April or May. Again, I always took oral pain relievers and I only got a few headaches before they went away again so I wasn't too worried. However, they came back at the end of July of 2006 and lasted for about 2 weeks. They were the more painful this time and I went to a clinic and got some stronger pain meds prescribed. The doctor prescribed midrin. I knew something wasn't right though when she told me to describe the pain I was having because she said it didn't sound like a migraine. She said migraines don't have a stabbing pain but more of a pulsing pain. However, since I said I sometimes get nauseous she assumed they were migraines.

After that summer I didn't get any headaches until May of 2007. This is when I found out that alcohol will bring on these headaches because I got one immediately after drinking one beer. The headaches didn't last long and went away after about a week.

I was pain free until fall of 2008 when they started waking me up in the middle of the night. They started sometime in October and went away after  about a week and half. During this time I only remember getting them in the middle of the night.

Pain free again until fall of 2009. I went to see a different doctor because I was living in a different town at the time. When I told him about the type of pain and that they were waking me up in the middle of the night he suggested that they might be cluster headaches. The problem is that he obviously didn't know much about treatment because he prescribed some type of oral med called Fiorgin for pain relief. I can't remember how long they lasted but it wasn't very long. Maybe a week and they went away.

They came back in the middle of December of 2009 and got so bad I went to the ER one night. They gave me an injection of Imitrex that made the pain go away. The only side effect I noticed was that it gave me a flushed feeling. After twp weeks the headaches went away again.

I was pain free until December of 2010. At the time I was living with my older brother in a different city. The headaches came at almost the exact same time as they had in December of 2009! They lasted about two weeks. During this time I went to see a neurologist and kept a diary of the dates, times, and duration of the headaches. I also started doing a lot more research on the headaches and thought they sounded more like cluster headaches with the intensity of pain, the fact that they would wake me up at the same time each night, and because after doing some research I stopped taking the oral meds to see what would happen. With or without oral meds the headaches usually lasted between 20 and 40 minutes although I did get one during this cycle that lasted an hour.

The neurologist refused to listen to most of what I said. I'm being serious about this. I tried to show him my headache diary and he wouldn't look at it. He insisted they were migraines and prescribed me Topiramate. I still have the bottle and it says they prescribed on 12/16/10. The topiramate didn't do anything. I got the same frequency of headaches with the same extreme levels of pain. The only thing this doctor did that helped was prescribe me injectable sumatriptan succinate when I told him the headaches came on too quickly for oral meds to be of any help. I stopped seeing the neurologist by January because he wasn't listening to me or helping me except with the injections.

After the headaches went away by the beginning of January I didn't get them again until the middle of November of 2011. During this time I had my absolute worst headache on Thanksgiving that clocked in at about and hour and 15 minutes. After I stopped pleading with it to go away I started praying that someone would show up with a gun, stick it on the left temple and pull the trigger!  I went to see another family physician and told him they were most likely cluster headaches, told him about how the pain was worse than when I broke my right tibia and that I had never experienced anything as painful as these headaches, and also told him about the other symptoms. He refused to renew my sumatriptan script saying "it's not right to give someone a pain reliever for something that lasts such a short period of time." I refrained from calling him a nazi at this point! I knew he didn't know much about cluster headaches when he told me they were bilateral and not unilateral!

That's it for the doctors. I haven't been back to see the last one since. He renews my scripts for insulin and pen needles over the phone at the pharmacy. The last few times I've been to the pharmacy I get a note on my meds that says MMA. I'm assuming this means Must Make Appointment? I'm going to have different insurance starting January that has much better coverage so I'm going to find a different doc that will listen to me and at least renew my Sumatriptan injections.

Before this current round of headaches the last ones were in January of 2013. They lasted for two weeks and a couple of days. I'm down to two injections of the Sumatriptan. I've had this current round of headaches for about a week. Hoping they somehow get cut short or at least don't last longer than the normal two weeks for me.

Hoppy,
Here's a little more info on what works and doesn't work for me:
1. Sumatriptan injections always have worked and aborted the headache within 5 minutes at most. They work a little quicker if I take them in the back of my arm as opposed to the leg. 
2. Ice packs on the left side of head around the temple and on the left side of the back of my neck help reduce the pain. Sometimes it's more effective than other times. The earlier I do it in the headache the better it works.
3. Sitting and rocking back and forth or standing up and moving around reduces the pain compared to lying down. 
4. Going outside when it is really cold out (below freezing) and taking in heavy breaths of cold air through my nose seems to help a lot. Especially with shadows.
5. Hot showers haven't helped at all and one time I think it actually triggered a headache.
6. Light and sound don't seem to make them worse. If anything, bright lights are better than the dark because I have something to focus on during the headache.
7. In January of this year I tried taking oral meds like midrin and tylenol an hour before my afternoon headaches. The headaches still came regardless of the meds and I don't think they reduced the pain of them either. 
8. I've tried chugging a 16oz Monster zero when I felt one coming on. The headache still lasted for half an hour and using the Kip scale was about a 7 or 8. Even after drinking that whole monster i was still fighting to stay awake after the headache went away so I don't think the energy drinks help me. However, maybe it would have been a 9 or 10 if I hadn't used the monster?
9. The melatonin seemed to be working until last night I woke up two hours after falling asleep with a Kip 7. All the other nights I would wake up four or five hours later with only a Kip 4 or 5 at the most when I took the 13 or 16mg melatonin.
10. Don't know if the D3 regime is working but afraid to stop because it could be the difference in waking up with a Kip 7 and waking up with a Kip 9 or 10!
11. Never have been fortunate enough to try oxygen. 

Hi Lowend,
You've certainly been put through the mill.
But, sorry to have too say your not the first that this has happen to and i doubt your be the last. So first where are you in the US, so that we can line you up with a proper Headache Specialist, to get you on the correct meds in treating CH's. You have all the classic signs that the  has been coming to pay you a visit, so you need to show him whose the boss. I was pleased to read that you have been so proactive in finding ways to abort the    but the mystery with us clusterheads we are all different, what works for one doesn't
work for another, for instance, the Monster Zero, have you
tried Red Bull the one that contains Taurine. This one seems
to work for lots of folk. And last but not least. Have you had
a blood test to check your 25 (OH ) D level? it needs to be
around the 80ng/ml mark for the regime to work.

Cheers, Hoppy.

Hi Lowend,
Hoping you get a good nights sleep. So here are a few tips
when you wake up. Zero Red Bull works well. It's best to use
400mg Calcium Citrate, and 500mg Magnesium Citrate, with
the other co-factors, alltogether with your main meal of the
day. With the Melatonin, this works the best, N-acetyl - S -
Methoxytryptamine. If your at home when pays you a visit, pop your head in the freezer and inhale.


Hoppy.

Thanks Hoppy. I will look for a headache specialist and also see about different recommendations from the next Primary care physician I start seeing in January. Based on past experience some doctors are more passionate about their job than others and I'm sure this applies to headache specialists as well!

The good news is that I'm noticing less pain and frequency of the attacks so I think they are starting to taper off. If they are anything like the past few years they should be done by the end of this week or the beginning of next. I only had one yesterday and it was not long after waking up. Haven't had any yet today including during last night. Fingers crossed. 

Some sufferer recommended docs in the Illinois area:

Illinois
Aurora:
Dr. Karen Burgner (PCP)
Dreyer Medical Clinic

Chicago:
Diamond Headache Clinic
Dr. Robert Wright
University Neurologists

Glenview:
Dr. Thomas Freedom
NorthShore - Glenbrook Hospital

Highland Park:
Dr. Trupti Gokani
North Suburban Wellness

Northbrook:
Dr. Lawrence Robbins
Robbins Headache Clinic

Joe