Hello,

I am brand new to this site and am so grateful to have a place to go where people understand what I am going through.  I hope I am doing this right by starting a new topic as this is the first time I have posted anything.  I was just diagnosed with CH about 2 weeks ago in the emergency room after suddenly getting severe one sided pain on the left side of my face/head.  My very first one was just this past December 12th.  From the 12th on, I had a CH that lasted 1.5 hours and always came on at 7:00 pm.  This went on for about a week.  They then started skipping a couple days in between.  After that I started getting 2 a day and then back to one.  They are now very sporadic and happening at all different times rather than at the same time everyday.  I guess my question is, is that normal?  Could it mean that the cycle is ending?  I'm scared and don't know what to expect.  Thank you so much for listening!!

Hi and welcome Kristin

For what you've described it seems to be consistent with what you can expect from CH. However getting a diagnosis from the doctors at ER for CH is really just the start. There are a lot of different headache types that give virtually the same symptoms as CH. So we always recommend that people work with a headache specialist to get a confirmed diagnosis as most doctors, even many neurologists just don't have the skills or experience in this area. To confirm the diagnosis you need to check off the symptoms and rule out all other possible causes which is the hard bit.

Do you have a preventive to cut down how many CHs you get?

Have you got anything to abort your CHs?

Tell us more and ask all the questions you have.

Read up all you can too.

Hello and thanks so much for the response.  I do have an appointment with a headache specialist, however, I can’t get in until February.  I was given 60 mg of prednisone in the ER for 5 days.  I then followed up with my regular Dr. and he started me on Verapamil.  He also gave me rhe nasal Sumatriptan which I am scared to death to use. 

Christmas Eve I ended up with the stomach flu and wasn’t able to keep any meds down at all.  After a ton of research I decided to try 400 mg of Magnesium 3 times a day along with 400 mg of B2, Kudzu, and 10mg of Melatonin at bed time.  I also use Capcasin cream daily.  All of these things seem to be helping quite a bit.  My headaches were a 10 out of 10 and occurred every day.  Now they are more like a 6 or 7 and seem to skip a day or two.  I am praying that the ER doc was wrong but with all the research I have done, it sounds pretty close.  I suffered from migraines as a kid and have always had horrible sinus headaches.  These are nothing like those.  I should hopefully know more in February. 

With imitrex, lots of us have used a lot of them over many years. If you have a look at the possible side effects, do not how uncommon the vast majority of them are. If things like cars had a list of all possible side effects, by only looking at the side effects you'd think they were totally dangerous all the time.

Do talk to your doctor / pharmacist about possible risks and how likely they are.

Kristin - I used Zomig (another Triptan like Imitrex) daily for over two years.  I will admit after a time I got pretty sluggish, but that probably had as much to do with the Verapamil as with the Zomig.  If you read up on Triptans you will find that they leave the bloodstream about 6 hours after use, so there really aren't serious lingering effects -- other than the massive hole they create in your wallet as most prescription plans don't cover them...

Hi Kristin6 and welcome.
Yours sound just like mine.  the thing to remember with CH is that there is no "normal".  Every single one of us is different, and each cycle - even each attack can be different. And just when you think you've got a handle on it, it will change.
Don't be afraid of the sumatriptan.  I use the injections and they are by far the best abortive. Some people do have a reaction to them, but I get nothing but pure relief.
Maz.

Kristin, I have been 44 years with CH.  About 10 years ago I found a Doctor that would listen.  She understood that between my experience and the CHers here we did know some things.  She put me on Verapamil 240 2xd and it stopped most of the severe headaches.  She would allow me to adjust the dose and at times I would have to hit 960 a day to stop the headaches.  YOU must check your Blood Pressure all of the time on this drug.  If you have low BP to begin with it generally lowers it more.  So that is a risk.  Over the years the frequency and times would change so any of that does not really signal anything in particular.  I would not have used Verapamil except for the information on this web site...  it is a good one and lucky you finally found it.
Good Luck to you in your search for what works.