Shera,
There's plenty more you can do~but I still encourage a visit to a Neuro. For starters, please read all the buttons on the left. It's a LOT of info to absorb, but it will give you some more ideas as to how to help.
The FIRST line of defense is often Verapamil. There are other preventatives, but you NEED a Dr's script. If you really cannot do that, take a look at Melatonin. It helps many here. I'm trying hard to underscore just how important that DX is in his effort to contain the beast. A bag of frozen peas can help, the waterX5 can be of help.......he's already doing Rock Star, or whatever similar...you're on the right track!
Most of all, it sounds like you are a wonderful supporter for him! Bless you for that! Please know, this place is for YOU as well!
If you check your pm's, I have left you my phone number.
Please use it if you want to talk, Shera.........
You two are NOT alone in this battle with the beast! Clusterville is open 24/7. Encourage your man to drop in- he will learn soo much!
Most important, remember, the BEAST cannot rule your life! Please don't let this happen!
Big hugs for both of you, Shera!
Cathi

Thank you for replying:)

Seems like 3 years ago was forever ago when he went into remission..and from reading your guy's post and information, we can kinda see what has been triggering them, but we don't remember how long they lasted.

Whats weird is they all have happened different times of the day in each cycle.  3 years ago they were late at night before bed. 2 years before they were all while he was working...and I cna't remeber before that lol..but this time are all mostly while hes sleeping, or early morning.  We so miss our sleep...hes in bed right now, because last night was the worst night so far.  He had 3 that lasted 30-45 minutes. 1 am..3 am..5 am:(

I just want to cry all the time for him..then I feel guilty because when they are in the middle of the night I just want to sleep, and bless his heart he just wants me to hold him..the only night I can remember he was pain free, was 2 nights ago..and I had given him a full body massage from head to toe, he swears thats the cure haha...he so wanted one last night but I was exhausted, now I feel bad because it was the worst night I have seen yet.  I have never seen him cry in 11 years except when he goes through these damned things.

Thank you for the support:)  Although I feel like I don't need it because I don't want to make it seem like I am the one in that kind of pain.  I feel guilty for being tired or frustrated, I feel guilty when theres nothing I can do but hold his hand...then I get frustrated when he doesn't want to do the things I suggest that could potentially help...then I feel guilty that I have to leave him alone while he suffers to take care of our 1 year old....who knew I could feel this damn guilty:(

Shera

So I was here 2 years ago as sunshineshera but somehow I don't remember my email or my password, so I had to register again.

So after that cycle 2 years ago, I finally got him in to see a doctor which is a family friend.  We love him although he is a GP and isn't familiar with cluster headaches.  He listens to my husband and all his unorthodox methods.  Last cycle which started exactly 2 years ago to the day he went 18 days as I previously stated before we got him in to see a doctor.  His Doctor gave him the prednisone taper and vepramil as well as putting him on BP medication full time.  Which helped tremendously but we aren't sure if it was because he was on the downward end of his cycle or what.

So this cycle he went straight in and asked for the same thing and so far it's helping.  He went 2 days pf with only phantoms then decided yesterday he would take a nap.  After I advised him strongly not to but I didn't push because I didn't want to fight with him.  Which now I wish I did because after 30 minutes of falling asleep he got hit with a kip 10 headache.  The by far worst hit of his life, and all he could say on the way to the doctor was he had wish he had listened to me. 

All I could do for him was cry and watch to make sure he didn't blackout.  I know I need to keep my emotions in check but that was the worst thing I have ever had to witness in my life.  He was so out of it and doesn't even remember saying Psalms 23 which he doesn't even know by heart.  It really breaks my heart to see this kind of pain inflicted on anyone especially my husband. 

After the hit was over he wanted me to take him to the doctor and started telling me he couldn't go on...he couldn't take another headache like that and he would blow his head off.  So I panic and start running out to the truck to go get his dad to sit with our daughter...I start the truck and slammed it on reverse and my freaking truck dies on the spot.  I keep trying to start it and it keeps dieing..guess it's too freaking hot outside to act like I am in a racing car. I had to wait 10 or so minutes before I could get the damn thing out of the drive way...and my husband is just standing on the porch shaking his head at me with a towel over his eye.

So we finally get to the doctor and ask a nurse to see his doctor right away he really needs know if he can increase the vepramil...or get on oxygen because he can't go on like this.  So I am not sure if she got confused by the whole thing, because she took him straight back and put him on oxygen.

Then his doctor came in and asked if the oxygen had helped and my husband tells him that he wasn't having one when he came in he just needed to talk to him.  So here comes the 2nd funny part of the whole experience...His doctor just switched off the tank and wheeled it out and had this look on his face like damn those nurses...I looked at my husband and we just laughed.  That made me feel so good to see a smile on his face and I knew we have hope again..and I won't lose him.

So my question is, do you guys think it was the napping that triggered a headache and broke through the medicine block.  Or could it be that the medicine is not strong enough to sustain certain hits?  He wants to go get an oxygen tank just to keep at the house just to be safe if the bastard hits again and breaks through without having a nap.

He has had phantoms and nausea all morning but took a Noz and the nausea went away and the phantoms seem to be easing up.  Also I would like to know from people that have luck with the Prenisone and preventive drugs is if he is having luck with it, then should he still do the noz drinks and the water treatments like he was before?  I tell him that I think he needs to do everything he did before and act like he is in a cycle until he goes a consecutive amount of days w/o phantoms and PF.

Of course I am no expert, and I only can read for him and give him the information I find out.  So any help would be appreciated:)

Sorry for such a long post, just didn't want to spam and have multiple post going on.

Thank you in advance,
Shera

Thank you for getting back to me:)  I will relay the information.  I think he needs to not test so many variables at one time.  I do think he should get the o2 as a security blanket but he has yet to test it and see if it even works for him. 

So no naps for now to test the medication I would think?

If there is no other reason running at the same time
i think it would be a good idea to tell him to get here himself too.it helps.

tarijo wrote on Jun 16^th, 2010 at 2:57pm:

Spring for a few bucks and get a mask.

           Potter

Nothing more to add - Joe said everything I was going to say works for my husband.

Just offering support and cyber hugs. I know the frustration and how exactly how you feel.

Thank you all for your information:)  He comes here and reads everything that I tell him during pleasant times of his day.  I try and cheer him up and tell him about the funny stuff I read as well.

So yesterday was rough although he didn't have a full blown CH.  He had shadows or phantoms I don't really know the difference if there is one.

He is feeling so much nausea and isn't sure what is causing it.  He felt like crap all day and we were on the way home last night and he started puking and hyperventilating with severe abdominal pains.  I had to rush him to the ER.  After 4 hours and a lot of test..he had severe GERD and his potassium was way to low that they gave him 4 horse pills.  We went home and he was up all night feeling like he was going to get a headache (oh and btw we bought an o2 tank) so he used that and it immediately stopped his warning signs.

He is going to pick up his nausea meds this morning and his potassium pills so hopefully that will help.  It's just so hard, seems like he gets one thing in check and something else happens to him and he hates it.  I have never seen him in this shape nor in a hospital bed..the 13 years we have been together. 

Ok ok one more funny before I am done spamming...

We go to get his O2 yesterday at the home health place and the lady talking to him kept him in there for like an hour.  He came out and was telling me all she had to say.

Apparently she had the cure for his CH and she was calling his doctor.  She told him he had sleep apnea and that was causing his headaches.  She told him that sleep depervation can cause so many problems including painful headaches.  He needs to get a sleeping disorder test and get off his medications because they can disrupt his sleep and make it worse. 

I kinda smirk and laugh at him...my sister had sleep apnea and a slew of other problems to go along with it and she has migraines because of it, by far nothing like this.

I'm the guy Joe speaks of. Treatment of my sleep apnea with a CPAP machine has done wonders for my lack of restful sleep. Treating it this way has helped my CH because I am better prepared to deal with it having more rest and more meaningful rest.

It does NOTHING to directly treat the CH. Tell your husband's sleep disorder technician to stop practicing medicine or you'll report her to the medical board.

I don't have much more to say on the meds/treatments/ or otherwise, the pros have said it all.  You did mention though that your husband's last cycle was about 3 year ago.  Mine have been 4 years apart for the last 25 years. (just diagnosed 4 years ago so never knew what I was dealing with).   I seem to be just at the end of my cycle, but this cycle I have tracked every headache using the memo function on my cell phone.  The time it started and every five minutes and the pain level.  It is sometimes difficult to do in the middle of an attack, but even at some point in the day if you can track them you might be able to go back three years from now to see if there are any patterns.  Alot of things may change with each attack, but my cycles, from what I  remember, have been fairly consistent, but at least now, I have a record.
From my experience, the night time, awakened from sleep headaches are the worst.  They are more painful and last longer.  I don't get that many middle-of-the-nighters, but I can tell you that the pain is so great that I can actually remember back to alot of them and exactly what I was doing and where I was and picturing rooms in my house that have been totally redecorated.  I can remember the old room in detail.  The pain etches that picture in the mind.

I have gone off topic here, but if there is a big gap in cycles, I hope the recording trip helps.

Good luck to you and your husband.

Brett C.

Thank you all for the help and support:)

Yesterday was a good day only a few shadow/phantom things..and his nausea is seeming to subside with his medication.  He is eating right and seems to be doing so much better.

The o2 is helping him a lot when he feels like he is going to get a headache he breathes in it for about 2-5 minutes and the symptoms stop.  He is on the last week of his first prednisone taper so he is going to get that refilled to keep just incase the first one wasn't enough.  They told him he can't have more than 2 tapers per cycle..so we just hope and pray that the vepramil does it's job:)

We both had a really good nights rest..not sure if it was the over exhaustion or what but I am not complaining one bit lol

BCsanders:

He had one exactly 2 years ago to the day/month..before that was 4 years and before that was every 1-2 years since 1999.  I keep telling him to keep a log..so I think tonight or tomorrow we are going to sit down and put our brains together whats left of them..and trace back as far as we can get and log it all.

Wimsey1:

I am the type of person that I cry with every emotion...then I get to a point where I am just over it and I laugh at everything...probably even when I should be crying or furious lol  Theres something about doctors/nurses and it seems the older they get the worse it gets...that they just look at you like you are a complete idiot and DON'T LISTEN...that just pisses me off.  I may be an ignorant to the medicine field and blind to CH but I can guarantee that they haven't put in the hours researching and banging their heads against wall after wall trying to figure out something to help my husband cope.  So if I ask questions and tell them what they should and shouldn't do for him...they should freaking listen to me....

I had a teacher once quote Einstein to me and it always stuck...and it taught me to be a knowledge seeker.

"Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning."
-Albert Einstein-

I thank all of you for this website and all of your help because it is and has been the most informative place to find all our answers.  I am not done posting just wanted you guys to know this:) You might find me regularly lurking and checking on you guys as well:)  Don't be alarmed I am not a stalker haha  I do though wish all of you find the answers you seek to fight these bastards.

/big hugs
Shera