72 hours after the 1am monster finally released me I google’ed “cluster headaches I can’t live like this anymore” which led me to Lydia Nichole’s post “I don’t want to live like this anymore” and this forum. I read the stories on the home page and immediately started balling my eyes out. Never have I come across a single person yet alone a whole community who truly feels my pain and described my horrors verbatim!
Lydia – Thank you for helping me find my way home!

I’m 33 now and started getting CH’s when I was 15 or 16. When I was a teenager my PCP wrote off my CH as seasonal allergies or some other BS. I was told to take OTC drugs and deal with it. My freshman year in college CH got so bad I couldn’t function. Hits came 3-5 times a day for hours at a time. I eventually had to leave school. That’s when the real fun began (lots of sarcasm). I was working full time and putting myself through school part-time. I had no medical insurance. I saw a PCP a few times and mentioned my CH during routine visits. But it went undiagnosed for another 10 years. I left the mainland and moved with my wife of 1 year to the Caribbean. Seems the move broke my cycle as CH stopped for almost 6 months after we moved. Then one day the beast silently returned, with full vengeance, angrier than ever.

By this time I had a professional job and medical benefits. I scheduled an appointment with a well-respected PCP. During my first visit I went over my symptoms. Headaches always on right side. Starts in right temple (I can see and feel the blood vessel pop-out of my head and pulse). Pain moves quickly behind right eye and down right side of face. My right eye gets droopy and swollen and quickly starts to tear. After the eye, my right nostril gets stuffy and will run. Intolerable pain last for 45 minutes to several hours. Then “boom” just as quickly as it came it’s gone. I further explained to the PCP the symptoms are the same with every headache and the headaches come at the same time of day, every day, for weeks at a time. Then I can go weeks at a time pain free and suddenly the cycle starts all over again. I’ll never forget the look on the PCP’s face. He looked at me and said “I think you have cluster headaches”. I thought great! Finally someone who knows what I’m dealing with. I figured I take an RX or two and all this would be behind me. That was 5 years ago.

My CH’s are chronic and have been in cycle for 11+ weeks now. Hits have been coming 3-6 times / day. My PCP currently has me taking 100mg tablets of Imitrex and 800 mg Ibuprofen. The Imitrex does seem to help as an abort. However, if I don’t take it at the very first onset it seems worthless. Furthermore, my insurance limits me to 9 Imitrex tabs in 30 days. I pay for another 18 tabs out of pocket. Yet I still have a limited supply and I use it more sparingly than I should. Never knowing if that shadow is going to turn into a full blown monster I hate to waste it. The only other RX I’ve tried is the Imitrex nasal spray. That was an awful experience as it increased my CH intensity tenfold.

Over a year ago my PCP did write me script for O2. However, I was unable to find a local provider who could fill the script at the prescribed rate (15-25 l/min). After reading all of your successes with O2 I asked an EMT friend for help. He was able to set me up with a small tank (I think a D cylinder and a regulator capable of 25 l/min). I tried O2 the other night and despite problems with the mask (too big and wouldn’t seal on my face) I still got relief! I’ve since ordered the ClusterO2 Kit/Mask and hoping that helps.
   
Thanks for listening. I’ve been an emotional mess the last few days. For so many years I’ve felt so alone with this condition or whatever we call it. I’m so happy to have found you all!

My name is Justin, and I’m a ClusterHead.      

 

Hi Justin and welcome to the family where everyone knows what it is like to either have CH or to support someone with it. You're far from being alone now.

In your introduction you didn't mention taking a preventive to cut down how many CHs you get. There are multiple options like verapamil, lithium and topamax that can stop many of the CHs from even happening. Have you used any of these?

Vitamin D3 is also another option that many of us have been having success with (I've gone over 3 years CH pain free on it).

Oxygen is my favourite CH abortive as using 25lpm and a non-rebreather mask I can kill off my CHs in under 5 minutes. Whilst your local providers may not be able to supply a regulator at 15-25lpm, you should be able to obtain one online (probably from the USA) and just use the local provider for the oxygen cylinders. The clusterO2 kit/mask works wonders (I've got two myself). You can find more about oxygen at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

As Bob said the 100mg imitrex tablets aren't too useful for CH as they take far too long to take effect, but the injections tend to work in 5 minutes which is great. Most people use them in conjunction with oxygen when they aren't near their oxygen, e.g. at work, flying, etc.

The ibuprofen won't really help too much as not even the strongest narcotic pain killers really makes an impact on CH pain so you can probably skip them.

Now keep reading, you'll learn lots plus ask all the questions you can think of too.

Hi Justin and welcome,
The way you describe your CH's sound A typical to me, and
the vitamin D3 remedy has a 60% chance of getting you
pain free. So, shoot batch a PM, and he will guide you
through.

Hoppy.

Wow! I’m overwhelmed with all of your responses. Thank You for the kind welcome. I wish I would have found you all years ago!

I’ve done tons of reading here the last few days and my post are a bit behind. Hopefully the following brings you up to speed.

One of the first post I read was using an energy drink with caffeine and taurine to kick an attack. I’ve tried this several times over the last few days. For the most past I feel this has helped. I tried Monster energy drinks and it did seems to help. I was out running afternoon errands when the hit came. I slammed an Imitrex tab with a Monster drink. I was able to finish my shopping and drive home. I read a post where someone mentioned 5 Hour Energy shots. I thought I’d give this a try as I’ve had problems downing an entire can of Monster. I tried 1 of the 5 Hour Energy shots yesterday afternoon and it turned me into a shaky nauseated mess. Not much fun. I don’t think it did much for my CH either.   

Tonight will be day 4 of the Batch’s D3 regimen for me. I was able to find everything locally except for the Vitamin K-2. I have yet to take the loading dose of D3 (50,000 IU). I took 10,000 IU on day 1 and 20,000 on day 2 and day 3. I hope I’m not getting too personal. But I’ve had terrible diarrhea in the am and upset stomach/indigestion in the evening after taking the vitamin regimen. I feel I should also mention that I’ve had very little/no appetite the last few weeks. Nothing taste good or is appetizing. I feel like I’m only eating out of necessity. Although, I will say nothing tasted better than the chocolate chip cookies and milk I had at 2:30am after my 1am attack. Can man live off cookies and milk?

On the positive, in the last 20 hours I’ve only had 3 hits and they haven’t been as severe. However, the shadows have been persistent between attacks.

I mentioned in my first post I’ve been in cycle for 11+ weeks. Thinking back I realize it has actually been much longer. I’m struggling to recall the beginning of this cycle. But I am able to recall being in cycle as far back as mid November 2014. Now I wish I had done a better job journaling…

Today I found a post by bejeeber that mention the “psychedelic solution”. I’m really intrigued by this preventative/abort. As I’m sure you can tell from above I’m seeking ANYTHING that will kick this cycle. I don’t recall ever being this sad and depressed. WHY WON’T THIS GO AWAY???!!!

Time to go. Here comes my 7:30p monster, 30 minutes late. Thanks for listening!   

I found taking the Imitrex tab with a really strong hot
cup of coffee worked for me, as long as I caught the  in time, I also found the energy
drinks made me feel sick. With the runs to the toilet,
this is more than likely being caused by the Magnesium
Citrate. Its also known that the vitamin D3 regiment
doesn't always work when in cycle, but if you stay on
it, prevents the  from ever returning.

Hoppy.

Batch,

Thanks for the suggestions. I probably shouldn't have but I was feeling so aweful I skipped the entire regimen on day 4.

I've been back on 20,000 IU of D3 and the multi-vitamin for the last two days (taking with dinner - my largest meal). Tonight I'll up my D3 to 50,000 IU's and add back 400 mg of magnesium. I'm thinking I'll continue to leave out the fish oil for a day or two.

Does this sounds reasonable?

Thank you for ALL your time guiding us through this!

Justin

greetings, I self diagnose through the internet many years ago.
I went through all the same bs tmj and everything else.

Imatrex does work for me,

Also when in a cycle, I take prednisone for a week to ten days. It takes the monster away for a few days, at least it gives me a time to recoup for a few days to fight the long battle.

Im back on here because I am begnning another cycle, I am not the most informative but have found a couple things that help me

Good luck

Justin,

Great to hear that things are beginning to improve for you.

Stick with the D3, even when this cycle is over and everyday thereafter, without fail. This current cycle could become a distant memory, please God.

My wife and I have just returned from a week in Rome and I didn't even get any significant shadows during the trip, even on the flights, which is a first.

Unfortunately she tripped on an uneven paving slab, here in Dublin, about 3 days before we left for Rome and though she seemed to be OK, her knee got more and more painful as the days past, until she was confined to the hotel room for the last two days... Wheelchairs at the airports coming home etc.

So, her knee joint has been broken since her fall and surgery is scheduled for Tuesday. She is totally incapacitated and  in a lot of pain. I have to carry her upstairs to use the bathroom, go to bed etc. Post surgery recovery time is estimated at 2 months, if all goes well.

I've suddenly gone from being the "cared for" for the last couple of years, (I had CH hits every single day) to being the carer. We spent the last 3 days travelling to and sitting in hospitals, which is very stressful and tiring, but still no CH.

Why am I telling you all this? Well, We would not have coped
this week except for the D3 regimen. Thank you once again Batch!!! I will continue following your D3 programme for the rest of my life.

Anyway, it's shown me that you never know what's around the corner, so getting your CH well managed is not only important for you, but for those close to you as well.

Keep well. Keep posting.

Peter.

Justin,

I have been on 10k-15k vitamin D3 daily plus the rest of the regime going on two years now.  I've been PF from CH for about 1 year and 7 months.  How is your sleep?  Melatonin at night will help you sleep.  Generally I took 5-10mg before bed.  Beast is a dirty fighter in that he comes at night, but sleep will help with shadows and prevent CH if you can manage to get some. Prayers and PF wishes to you!

Justin,

Great to hear that you're making good progress. Also great to hear that the energy drinks do the trick.

Onwards and upwards.

Peter.