What Can I do?

[bnb111]

Hi, I'm not a sufferer of these horrific things rather a wife to a cluster head and I have a couple of questions.

My husband started with these when he was 40, he's now 53. He was in remission since 2013 but they are now back.

I can't believe with all the research I've done that I was not aware of RED WINE being a trigger so I blame myself fully for this reoccurrence. It was 12/9/16, my companies Christmas party, and we decided that we would drink this wonderful red wine, can't even remember the stinking name now but I hate it! Anyway, the next morning while driving home, it happened, I heard his voice change and I looked over and there he was, the devil in all his glory! I couldn't even believe it!!! My husband was able to work thru that one while driving, no O2, no shot, nothing, I don't know how he did it but he did. For the next two weeks there was nothing, he was convinced it was a fluke and then Christmas came and the cookies and the sweets and the chocolate, and then he took a vacation between Christmas and New Years. Were not sure which one of them pushed him over the edge but it did and he's fully engulfed now!

Seen his neuro on 1/6/17; gave him back his RX for O2, more imitrex and of course prednisone. Unfortunately we cannot break this cluster.

He was doing great while on the steroids but as they started to decrease, his headaches increased.

I'm guessing that's my question, have any of you tried prolonged usage of steroids? If so, did this help you? Did you suffer side effects?

I just don't know what to do for him and I feel as if I was the cause of this bout, I cannot believe I didn't know about the red wine and did this to him, I just feel terrible and am looking for anything I can do to help him!

ps - not really a newbie but cannot remember our signon from years ago!!

Thanks!

[geoffmh]

When I was doing that course of action (Neuro Doc) I was on prednisone 70mg. for a month or so.  Maybe his doc can up his dose?  Not sure why they tapered him over a week or so...in bad cycles I was taking the steroids daily for 2 months?  That was at least 15 years ago and as of yet no problems..although I am aware that it can cause problems with the hip bones.  As I recall I was also on Verapamil and Naproxen simultaneously.  Hope this helps, but it sounds odd they would taper him off prednisone after 10 days.

[Jasper2014]

My headaches are back after 4 years. it's been almost a month.

It seems stress can trigger my attacks. I tried Sumatripan both as a tablet and an injection without any relief. I am on oxygen as needed and a 15 day course of Prednisone and my attacks are down to occasional light attacks. I did notice sinus discharge down the back of my throat for a few days after starting Prednisone but that has stopped as well. I was diagnosed 25+ years ago with an extra sinus cavity that had gotten infected and would not drain. Those headaches were very similar. I think this might be the underlying cause for the pressure on the nerve associated with all this pain. Steroids can be harmful over a long period. My sister was on them for a couple of years for exposure to a deadly disease while a nurse and has had 5 hip replacement surgeries over the last 40 years all related to the drug attacking her hips. There was little known then about the long term effects. Hope this is helpful to someone.

[Michfan]

prednisone has been a major factor in breaking cycles since I started getting headaches back in 2007.  My time on them has varied by cycle, but the most recent cycle had me as 80 mg per day when they started back in October of last year.  At one point I was almost off prednisone when the headaches started again.  Went back up to 60 mg immediately.  My Nuero has me taper as quickly as possible because of the negatives.  The taper schedule I use is 5 mg reduction after 3 days without out a headache.

As of right now, I haven't noticed any long term side effects.

 

[mit12]

Be careful with prednisone, if used to long it can cause bone issues. 

[CHfather]

He has the streoids, which are usually a temporary fix, and two abortives -- the O2 and the trex.  He needs to add a preventive, or two, to the mix.  Verapamil is the commonly prescribed pharma preventive, and most people get very good results (though not usually immediate results) from the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/

Busting is of course another very effective way to stop a cycle and possibly prevent future ones.

[bnb111]

Thanks everyone, I appreciate your feedback. In reviewing my log of his pain and headaches it's definitely the steroids that are keeping them at bay. He was finally able to sleep through the night last night because of the 60mg of prednisone. Once we start to reduce that 60mg they're back and worse.

CHfather - he is on verapamil as well, I accidentally left that off

[CHfather]

During a cycle, people often need more verapamil than most doctors typically prescribe, even though the higher level -- as much as 960mg/day -- is medically acceptable.

 

[spiny]

Please don't beat yourself up over the wine!!! Most of us can drink alcohol out of cycle without any issues. So, how would you even think about it? I highly doubt that your husband blames you.

Pred. is not a good long term medicine due to the side effects. Verapamil is good for many. How much is he taking? The short acting is better for CH than the extended release from my reading and experience. Also, the CH gets worse as you taper down the Pred. It is often used as a bridging med until the Verap. kicks in. Not good for the long term at all.

The amount of Verapamil he can take is partially determined by his blood pressure. It lowers your BP. So, too much for one person is fine for another.

D3 Regimen is great for a whole lot of people. I would recommend getting those vitamins for him. He could get some relief in days or a few weeks. Personally, it has reduced the intensity and ramp up time. I would hate to have to give it up.

He can down an energy drink or shot quickly at the start of a hit. Most like them cold and slam them down quick, like on the way to the O2. Sleeping partially reclined in a recliner helps many as well. Just keep his head up a bit above his heart. I pack pillows around to relax. Melatonin in the 9-25mg range can be a big help too. Start out with about 9mg. See how he feels. If he does not get relief at that level, you can increase the dose.

There are several foods that trigger different people. Chocolate being one. MSG is a big No No too. Perhaps CHF can bring up that list of food triggers for us? I am not up to full speed on the new format.

Again, you need a big hug, not to blame yourself. And remember, CH is really good at changing on us!!! You can be chronic one year and episodic the next. It just does it's own thing and we fight back. A 3 or 4 year break is really terrific!!! The return of the beast is the pits.

 

ATB

[bnb111]

Thank you so much everyone, I know this post is coming rather late to the party but it's been tough at the house for a couple of weeks.

Every time he comes off the steroids they are back with a vengeance! He's doing everything possible to get through these.

Good news is, the Verapamil finally seems to be kicking in and allowing the O2 to work. Tomorrow (2/9/16) is the follow up with his neurologist and on Friday (2/10/16) that is actually his eight week anniversary of these being back in our life! I am hoping, praying, lighting candles, offering whatever I have to offer to please let this be something, for someone to please come and turn off the light switch to end this cluster. While I'm hopeful, I'm certainly not stupid and know it's just a shot in the dark but that's really all I have.

I swear to you guys, I don't know how you do this without rest, how in God's name can he even be still standing upright? I'm full of questions, and what seems to work for him one day doesn't work the next, I don't know how you all do this!?!?!? He's running on barely any sleep, going to work every day and performing! On top of all that he's a drummer, and not just any drummer but the best drummer in Maryland, I know you think I'm cocky but there's an actual award!! LOL

It must be true that God only gives his toughest battles to his strongest soldiers because you all amaze me! Please know that I pray for every one of you every night, I pray for you every morning, I pray for you every week at church, you all are never far from my thoughts! I just want you all to experience relief and I'm not giving up or giving in. I'm looking forward to Headache on the Hill and I will scream from the mountaintops to anyone that will listen, we need a cure, we need recognition, we need help!

Much love and big hugs to all of you sufferers and supporters!

Brooke

[CHfather]

Brooke, as you are clearly all too aware, there's not likely to be a lot the neurologist can offer. From time to time, someone posts here about a pharma treatment that worked out great for them (the most recent, in my recollection, being Seroquel*), so it's not hopeless to try.  I'm not going back over this thread, so I'm asking questions that might already be answered: Is he doing the D3 regimen?  Taking melatonin at night?  Trying energy shots?  Is his O2 system optimized with a high-flow regulator (25 lpm or more) and a good quality mask?  If he's using a standard non-rebreather mask, is he covering the open holes in it, with tape or with his thumb, so that no room air is getting in as he inhales?  Does he have tanks/cylinders of oxygen, not a machine that makes O2 from room air?  I recall that he has trex. Is he using it?  Is he splitting the injections so he uses only 2 or 3mg at a time?  Has he seriously considered busting (which you can read about in the numbered files in the ClusterBuster Files section)? This place isn't called ClusterBusters for no reason. 

You don't have to answer any of those questions, of course, but if you have any questions, please ask!

* You can find the threads about Seroquel by typing that word into the search bar at the top of the page.  I'm not vouching for it; just giving an example of something that seemed to work for somebody.  Topamax is another; gabapentin is another; lithium is another . . .  In my view, the side effects and unreliability of those things argue for doing the D3, upgrading the oxygen system, trying the other non-pharma methods, and very seriously considering busting.  Just saying that down the pharma road are many things that have worked to some extent, for some time, for some people, and down the non-pharma road are many things that have worked more effectively for longer periods with far fewer side effects.

 

[bnb111]

Yes, he's done everything except the vitamin regimen. We didn't want to do that because we believe the verapamil has finally kicked in and allowing the oxygen to work so we didn't want to throw something else in the mix. We have both a concentrator (bedroom) and tanks (LR and car). The shots, he needs the 6mg, lesser amounts don't work for him but lucky for us we had them stockpiled, and the neurologist has filed papers for the override. My post was really just to thank you all, let you know why i hadn't responded, basically just to provide an update and let you all know that I'm always thinking of you all and praying!