I saw my new neuro yesterday after about 3 wks in cycle.  My old Neuro was just not up to date on CH at all.  New Neuro suggested we try a occiptal nerve block first. he upped my daily dosage of Depakote as well.  I was only taking 500 mg ER daily but now wants me to take 1000mg during the day.  I have problems with low blood pressure so Verpamil is not an option for me right now.  He also suggested that I start taking melatonin every night, starting with 3mg and going up from there each night if I am not sleeping well up to 27 mg if needed.
I am scheduled for an MRI thursday- Dr wants one done has I have never had one and he said something about some people with CH show abnormalities in the pituitary gland? Anyone heard of this?
But I am wondering as well if any had any one has had success with the nerve blocks? So far it seems to be working. well I haven't had a Ch since the injections but having side effects from the injections.  Pain at the base of my skull but I will take that instead of a CH every hour during the night.

With the exception of the nerve block, everything your doc is suggesting is main line practice for CH (although the Melatonin up to 27mg is a new high for me!)

I have not deeply looked into the nerve block so only have an impression that results are rather mixed and some indication that initial success often disappears.

My personal bias is to us exhaust the conventional treatments, where where is decent evidence of effect and safety, before moving into the new stuff.

I have had the occipital nerve block for a cycle a couple of years ago. Worked great for me and I didn't have the pain your talking about. Where exactly did you have the injection? Is it just bruising around the site or something else? Have you mentioned this to your Doc?

Your previous posts don't mention oxygen.

        Potter

Nancy- I can't really tell if there is any bruising as I had the injection at the base of my skull on both sides of the neck in my hairline. There is some swelling there still. I can feel it when I move my head sometimes. 


Potter- I have O2 at home and a portable tank for work.  It works most nights- but last night nothing seemed to work until about 6 am this morning.

I did fine with the nerve blocks until early this morning. I was up every 30 min. It was like the O2 wasn't even working. I will see what happens tonight and if I am still having problems I am calling the neuro tomorrow morning. I know that steriod injections can at times take a few days to work fully and want to make sure before I tell the Dr. 
The Dr thinks that an injection I had in Dec for another medical condition I have could be causing the CH cycle this time to be totally chaotic. 

Hi. I have had several nerve blocks in the past with mixed results. The first 2 or 3 worked extremely well and even marked early end to that particular cycle. Since then I have often had to go back for a second round. I would guess they work better for some than others.

Pfunk 8-)

Oh yes. As for the pain you mentioned, I experience it almost every time. But, as you said, I'd trade that for the MONSTER any day

Pfunk- thanks. I was doing fine friday night after the injections- now the beast has woken me up each night last night again didn't seen like the O2 even worked.  I took the imitrex pill ( I have the injections but get one heck of a rebound later) and got to sleep once again last night. but I still feel like I got hit with a bat on the left side where I got the block. Right side feels fine and last night there was no pain on that side when i woke up.  but the left side- well I scared the hubby something terrible last night it hurt so bad. 
So far the melatonin isn't doing anything so tonight up to 12 mg and see if that works.  And I know it will take a bit for the higher doses of Depakote to kick in.
But I have to say no shadows today or yesterday.  Just night time attacks that I think are the worst I have ever had. But unforuntately I can't tell what is causing them to be so bad.

During my last cycle I had 2 nerve blocks (ONB). Max PF time for me was 14hrs. Some folks have better luck. Injection sites were sore for some time.

From my own and others experience with Depakote it does not have a very good track record for CH. But we are all different so hoping better for you.

Don

Don- I have tried Topamax before. I was on it for years before the switch to Depakote.  Topamax caused me to loose alot of weight- so much that it was not healthy. so dr switched me to Depakote.  They have been wanting to put me on Verapamil for a while but due to low bp they won't chance me falling out from a bp drop. If the change in the current meds don't work we are talking about the move to Verapamil though now that my Bp is back up.
So Far the Nerve Blocks haven't done much. The back of my head still hurts a bit but the pain from the CH is still there. I figure I got about 24 hrs out of it.  I can at least say I tried it and it doesn't work for me.

Have you talked to you Dr. about headaches being worse? Sometimes the injections do aggravate the nerve instead of helping. You definitely need to let him know that that is what happened. There maybe something else going on there.

I am so sorry that you are in more pain :(
I have had about 5 nerve blocks and at first they worked but then they stopped.  And yes they can be painful for a while.  What I do is get a bag of ice, wrap it in a towel and lay on it with my neck and pillows. That helps a little.
i have even had the nerves burnt and that did not help, so they are going to put me on lyrica as they think that will calm the nerves. Who knows.LOL
I pray you feel better soon!

I just talked to my Neuro. He thinks that since the injection that my headaches have gotten worse pain wise and how often I am having them that I  may have another condtion called Paroxysmal Hemicrania.  What I have found out so far is that alot of the symptoms mimick CH- like the autonomic responses and unilateral sided pain.  Here is what I have found so far from the NIH website.
Paroxysmal hemicrania is a rare form of headache that usually begins in adulthood. Patients experience severe throbbing, claw-like, or boring pain usually on one side of the face; in, around, or behind the eye; and occasionally reaching to the back of the neck. This pain may be accompanied by red and tearing eyes, a drooping or swollen eyelid on the affected side of the face, and nasal congestion. Patients may also feel dull pain, soreness, or tenderness between attacks. Attacks of paroxysmal hemicrania typically occur from 5 to 40 times per day and last 2 to 45 minutes. The disorder has two forms: chronic, in which patients experience attacks on a daily basis for a year or more, and episodic, in which the headaches may remit for months or years. Certain movements of the head or neck or external pressure to the neck may trigger these headaches in some patients. The disorder is more common in women than in men.

Dr thinks that I may now have migraines, CH and this as well.  There is only 1 drug that helps with the above condition- indomethacin. My neuro thinks I may have this as well due to the fact that my headaches are getting worse since the block last week and coming with more frequency than before as well as being much more painful and the O2 doesn't even touch them anymore.  So we will be doing a trial on this medication for 2 wks. If the headaches stop we know what it is and if not,. We start over again.

AHHHHHH!!!! So, i waited a couple of days to post the results of the nerve block...... the back of my head, side of my head and top of my head were soar as S**t, but, I have not had one CH since... I thought i was going to get one, i thought it was a shadow, i was going to take a zomig disolving tab (25mg) but decided to see if the block worked (ballzy i know) and it did!! The block has worked thus far, no meds.. I'm still taking the topamax every day, but i do that in between cycles also, just more during cycles... I'm happy to say though, no more narcotics.... no zomig, imitrix none of that for the past 2 day, i'm soooooo excited... On top of that, my wife passed her nursing board exams.. Shes an offical RN!! she can take care of me now more than she has lol!! Sorry for rambling all, just wanted to share my experience thus far... I will talk to you all later.. Let me know whats new with you all!!

Take care,

Shane from Texas!!