Hi. I'm a 39 yr old female and have been suffering from CH for 12 yrs. I started seeing a neurologist right away and was diagnosed immediatly. I had a mild concussion when I was in 4th grade (hit my head on a curb during recess and lost consciousness). The same side that I have my pain on always. I am woken up usually within 2 hours of going to sleep each night.  I have stuffy nose on the right side of my head, pain in right eye, temple and side of head, I break out into a sweat, light sensitive. Upon awakening I take my zomig, head to the spare bedroom, turn the ceiling fan on high, sit in the middle of the floor, rock, squeeze my head as hard as I can and wait. My right eye normally waters, even when I'm not crying. And I just wait and pray that it will soon go away. It can take 1/2 hour to 1 1/2 hours for the pain to go away. Then I usually freeze and go back to sleep. I've tried topamax, depakote and verapamil for preventatives. I currently take 180mg Verapamil XR, once a day. I've tried imitrex pills, Migranal nasal spray, oxygen (if I remember correctly it was much lower dosage then what I've read here), 5mg zomig tablets, and zomig nasal spray for the pain. The only thing that has worked for me is the zomig tablets. In the beginning of a cycle I can take 1/4 tablet and it aborts in about 30 minutes. Right now I'm hoping I'm getting close to the end of the cycle.  They've become more frequent and more intense, 1 full pill takes about hour and half for some relief.  At this point I really don't think it is helping at all. I've been prescribed a prednisone taper twice so far this cycle.  My dr starts me at 60mg for 2 days, then tapers down from there, so 12 days.  It takes the headaches completely away until the day after I quit taking them. And then they return full force.  I also have anxiety so I had been taking 75mg of Effexor daily, but my neurologist just switched me to 10mg Elavil about 2 weeks ago. Was told it could take 4-6 weeks to help.  :(  During a cycle smells, sleep and relaxing seem to trigger them, but usually they just come at night while sleeping. I usually get one a day, sometimes two.  Most of my cycles last about 2 months.  I have gone over 2 years with no cycles at all.  My cycles have started all different times of year. My cycles seem to be triggered by stress for me. The first time I got them was a few months after I opened my home daycare, then while potty training my son, then with the birth of my daughter, then with some really bad daycare kids, then with the start of a new job, and so on. It always seems to be when I'm very stressed. This cycle has been over a month, and I'm so exhausted, so stressed about when the next on will come, just so tired of it all. I've never tried any kind of injection for aborting them. I guess since I know that usually the zomig works, I'm afraid of trying anything else. I'm kinda at the end of my rope right now and plan on calling the neurologist tomorrow (monday), for a new abortive to try or maybe he'll put me on the prednisone again, so I can at least get a few days break. This is the first time I've joined any kind of support group/forum, so hopefully I did this right. Thanks for letting me be apart of this family of sufferers.  ;)

Hi there. Welcome to your new family. We call ourselves the Clusterheads.

You really should try the imitrex injections. They are one of 2 things that are most people's first choice of abortive. They will relieve even the most serious CH in 5 - 7 minutes. I NEVER leave the house without them.

The other fave is oxygen, delivered at 15 - 25 ltrs per minute, with a non rebreather mask. The high flow and the correct mask is vital. I personally have only had oxygen for a few weeks and I don't know how I survived without it. Check out "oxygen info" yellow tab on the left of your screen.

Also, check out posts by Batch about vitamin D3. Over 80% of folks who follow his regime have become completely pain free. He's a great guy and I'm sure if you send him a PM and tell him your story he will help you out. He really knows his stuff.

Feel free to come back with any questions, or just to rant if you need to.We've all been there and there is always some one ready to listen and help where they can. We all sit on the floor and rock and thrash about (dancing with the devil) praying for it to end, so we know where you're coming from.

Good luck getting the imitrex injections from your neuro. Let us know how you get on.
Maz.

Hey Gina,

Welcome to CH.com.  We know what you're going through. The good news is it doesn't need to be that way.  Maz has given you some great suggestions... 

Make sure when you see your neurologist, you make it a point to ask for the 25(OH)D lab test...  25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status...

The odds are you're vitamin D3 deficient and that deficiency is likely contributing to the frequency, severity and duration of your CH.  Don't miss the opportunity to get this lab test.

Print out the following link and take it to your new neurologist...

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

V/R, Batch

Thank you for the welcome. I will definitely ask my Dr. about the injections and about trying oxygen again. I also suffer from kidney stones and that doctor has me taking vit d3 5000u once a week. So I'd be willing to bet my vit D levels are low.  I have already printed off the info that Batch suggested to me, and will share it with my neurologist and ask for that blood test.  I feel like there may be light at the end of this tunnel, so thanks so much for that.

Hi Gina

You've got some good advice already, so just adding a bit more.

The 180mg of verapamil you're on is a very low dose. Most people need 360-480mg a day with some going to over 1000mg a day. So there is potential for your dose to be increased, however don't do this without working with your doctor as your medical history is important and they know that.

Have you tried oxygen? It is one amazingly good way to kill off CHs. Read all about it at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. It is how I like to kill off mine and I can normally do so in under 5 minutes, which is a whole lot better than 90+ minutes of pain.

Stress is a fairly common trigger for many, although it varies with high stress for some, low stress for others or transitioning between the two for yet more. So you're in good company.

Also be careful about using prednisione too often as it can be pretty brutal on your body, especially your joints. Google will find lots of stuff about what the side effects can be.

Update: Super excited! I tried redbull last night and it worked.  I woke up at 12:27 with the usual feelings. First I took a zomig,  went downstairs,  got the red bull. Back upstairs, to my cold room. I drank it as fast as I could, probably 3 minutes. The pain continued to escalate, almost to the point where I thought, ok this isn't going to work.  Then the pain began to go away. At 12:45 I was back in bed. That's definitely a record for me. Normally it's 45min +. I had trouble falling back to sleep. Not sure if it was from the redbull, or from the excitement that it worked! Either way,  I'd rather lose sleep free from pain, than the alternative.  Also contacted my Neuro,  soonest appt I could get is next Wednesday.  He is sending in a RX for the immitrex injectable today.  And sending a RX for 100% oxygen at 15lpm, with the non rebreather mask to an oxygen place.  So hopefully I'll be all set soon. I've printed lots of info from this site to share with him next Wednesday.  I also want to talk to him about my Verapamil.  I've been on it for several years. I've read here that he should have at some point done an EKG on me,  which I've never had done. I'm also wondering if maybe a hirer dose than the 180mg I've been on would be beneficial,  at least during an episode. At least now I have some educated questions to ask. Thank you all soooo much. I've learned so much in the last few days from all the reading I've been doing.

It's great to hear updates like this, full of positive results!

I found that the first few times I used Red Bull late in the evening I didn't sleep too well, but my body soon got used to the idea that it should ignore the caffeine when used to deal with a CH. Hope you react like that too, but wide awake without a CH is just so much better than wide awake with a CH.

Good work on getting the oxygen sorted out, you'll love it when you get to use it. Can you get a higher flow rate than 15lpm as although that should work, higher flow rates often work even quicker.

A dose of 180mg a day of verapamil is pretty low for CH prevention with many using 360-480mg a day and some over 1000mg, so there is potentially room for your dose to be increased, but work with your doctor on this as your personal medical history may prevent this.