I first started with cluster headaches in 2015. My cluster lasted about 6 months. After several visits to my family doctor and no relief I decided to go to a neurosurgeon. He ran several tests and evaluations on me, and determined it was cluster headaches. We went through several different treatments and I really got no relief. Finally the pain stopped. I did not have another headache until last week.

The headaches came back with full force. This time around I am not having as many. I'm staying at 3/day which is down from the 5 I was having the first time. However, this time around the pain seems to be even worse, and the length of each episode is longer. They have beat me down real quick this time as I am scared of coping with them and fighting this battle for six months again like last time. I has a bout this morning at 5:30. After it was over I got online and found this support group. I, glad that this is available, and thanks for letting me be a part of it.

Welcome Brian, glad you found us.

There's a world of experience and support here, so tap into it.

You might like to give a bit of detail on the treatments and medication you have had to date.

I spent many years  suffering from and trying to cope with this condition and turned Chronic a few years ago. That means that I get hit every day, all year round. Since  I found this site it changed everything for me.

I don't know if you have read anything about the Vitamin D3 Regimen devised by our friend and fellow sufferer, Batch.

Read part 2 of the following link. This treatment is medication free, good for general health and is making significant improvements for 80% of those of us who are using it.

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

Read and come back with questions. You have nothing to lose but your headaches.

Best,

Peter.

Welcome Brian.  You will find everything you need to know here.  Tell us where you live, and what treatments have been tried so far.

I live in Kentucky. I am currently being treated with heavy doses of prednisone and fioricet for pain. It does not appear to be working this time. The heavy dose of prednisone seemed to dull the pain somewhat on my first go around with cluster headaches but not this time. In the past I was treated with several things by my family doctor. Included in this was verapamil,which I have read helps some, but at heavy doses. My family doctor was not wanting to go that heavy on my dosage so it never worked for me.

Verapamil is most peoples first choice as a preventative, but as you say - large doses.

Personally, I don't use a preventative, other than the vitamin D3 regimen, which you will find out about if you read through these boards.  Send a PM to Batch, whowill tell you all you need to know.

Other than that, as abortives I use oxygen, delivered at 15 litres a minute, (more if you can) with a non rebreather mask. It's good if you can get on it as soon as you feel the first signs of pain, but the flow rate and the mask must be correct for it to work.

The best abortive is Sumatriptan ( probably called imitrex in America).  You can get pills, nasal spray, or injections.  The pill take too long to get into your system to be much help.  The nasal spray is better, but the auto injections are fantastic and will kill off the worst CH in 10 minutes or less. Easy to carry and easy to use.

I use the oxygen at home, and save the injections for when I go out and can't get to my tanks.

I understand they can be difficult to get in america because of insurance issues etc, and the cost, but if you do get them, there are ways to get 2 or 3 doses from one injection to make them last.

Using the above methods have completely changed the impact CH has had on my life, from suicidal to "almost" normal.

Hope this helps
Maz.

Brian B wrote on Jan 26^th, 2017 at 11:21pm:

I am currently being treated with heavy doses of prednisone and fioricet for pain. It does not appear to be working this time.

Prednisione is used only as a short term preventive, typically for around 10 days, whilst another longer term preventive builds up. Medium or long term use is not advised as it can lead to multiple issues including damaging joints.

Using pain medication for CH is not something that works too well as the pain of a CH is beyond the strongest narcotic pain killers.

You mentioned your family doctor several times. The treatment of CH is not something that the vast majority of family doctors have the skill or experience to do with this a lot of neurologists struggle with, which is why we always suggest people work with a headache specialist.

I appreciate all the feedback, and have another appointment with my neurologist in the morning.  I am hoping to discuss with him some of these other medications and treatments.  The prednisone and fioricet definitely are not doing the trick.  The headaches I have at night have been as bad as ever.  My sleep is way off which is taking a toll on my work the following morning and day.  So hopefully some of these suggestions will help with some of the pain, as i know nothing will make it go away completely. 

Hi Brian, follow Maz's advice with your neuro.

Hoppy

Maz is spot on.
Oxygen is best,but a lot of doctors and insurance companies are wishy-washy about prescription/coverage of it.
Injections are wonderful,but expensive.
Zomig nasal spray helped me as an abortive
Pills are cheapest,but your attack is usually wearing down by the time it takes effect.
My last cycle was treated with verapamil and lithium combined.
Batch has perfected a viitamin regimen that works wonders for most.