Ok so this is my 3rd diagnosed bout.  I had a late night kip 1-3 then two days later we are back in cycle.  That was three weeks ago.  I immediatly hit the Trex stock pile and quickly got out of hand.  Often having up to 4 a in a 24 hour period.  That is more than ever before.  Within the first week I was on 900 MG of Lithium and shortly after I  started a 120 MG pred taper as well as the D3 and fish oil regiment.  I also have been taking 10 MG of Melatonin before bed.  I have experienced very few side effects from the pred my neuro (One listed on the OUCH site Dr Sethna) indicates that the lithium is more to counter the side effects of the pred than it is for keeping the cycle in check.   Two days ago I went in and had an Occiptial Nerve Block that appeared to work for about 18 hours. 

That brings us up to now.  I have filled a scrip for Verapamil and am waiting on the pharmacy for the vial of trex.  I already have the syringes so I will be able to dose trex at 2 mg injects.  I just need to get the EKG and lithium levels checked.

I was hit pretty hard last night with a KIP 8-10 and aborted with O2 in about 12 minutes and today I have been having a kip 1 or 2 pain for most of the afternoon.  I am debating on going up and using more of the precious O2 to see if I can get rid of it.  It just wont quite develop into a full blown HA. 

Tomorrow marks the full three week point. 

History;
I am a 32 YO Male and the last cycle lasted about 3 months before subsiding for 2.5 years.  The time between bouts appears to be getting longer however the last bout was also longer than those prior.  Before diagnosing the ENT Dr said the problem was a deviated septum with a bone spur protruding into the nerves, and did surgery on my nose.  Probably needed but not for the reason they diagnosed.  The next cycle I was sent to and diagnosed at the Mayo Clinic in Rochester MN, and the Neuro there basically sent me home with a diagnosis and no real treatment options.

So the quest continues to find the right cocktail of drugs that will quell this cycle into submission.  As soon as the EKG is done I will start on the Verapamil.  Most likely on Monday.  I am trying to space out different treatments so as to better be able to tell what worked and what didnt. 

Of all of lifes little afflictions this is one that not too many people seem to understand.   But I cant wait for this one to be over. 

Here's to being pain free once again..

Thanks,

Eric

Welcome,

I can relate. I was where you are now. I would have been willing to try just about anything to stop the madness, So when someone told me about Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or I thought why the hell not.
And since that time i have not taken 1 abortive, or preventative RX medication (except 02). and its been almost 4 years.

Focus,,,
Coach Bill

Kevin,

I dont know if its the Lithium or the pred but I have a deffiite reduction in HA's for the time being.  Really good to get a good nights sleep. 

It took me 3 cylcles to figure out how to get the o2 to work and it all centers around the mask.   

I havent started the Verap yet but it is on deck and ready to go. 

As far as the Mayo doc is concerned after we returned home we immediatly called them back and said "so what are we going to do about this?"    He pushed through o2 at 2-6 lpm with a rebreathing mask and said good luck.   

That is when I deciced to find a new neuro.  Two neuros later and I have one not only listed on the OUCH website but one willing to try many treatments quickly.  So far I have been pleased with him. 

Linda,   

Yes I am very blessed to be an episodic.  I can't imagine what I would do other than try every known and unknown remedy to break the chronic cycle. 

I know there are many more people that have this affliction much worse than me.  That doesnt change the pain or how much it hurts my and my family. 

Thanks for all of your support.

Eric

Unless your doc is on board about spacing out your various treatments to see what works is counter to usual practice.

You may get some relief, maybe, but erratic use of multiple treatments creates makes any accurate judgment about which is working all but impossible.

I understand the motivation to obtain relief but....