Haven't posted in a while, usually just read up on things without signing on.  Found more information to share with my CHer's Neuro....if she'll take the time.  Anyhow, this late summer, early fall has taken it's toll on my hubby.  He is chronic and two years ago had a gamma knife surgery which decreased the hits to two - three a day. (or night)  but since Aug. that all has changed.  He is afraid they are going back to the way they were.  The stockpile we had is depleted.  He has been to the ER twice.  That is a love/hate relationship!  He is using O2 now much more often and it seems to help somewhat, with some ice on the neck and some black coffee. His injectable sumatriptans are gone.  His care is through the VA only.  The Dr. will prescribe them at the max dose (8 injections monthly), but the VA will only supply 1/2 of that a month!  they will give him a few in pill form, but they do nothing!

I just copied off the info on extending the imetrex.  How many of you do this?  It says to inject into the arm, but he has been injecting into the abdomen with the auto injectors.  I know he would be able to tolerate this. (Holding still for it may be the challenging part)

I saw here on the site previously about people having some extra things in their homes that may be expiring.  Would that happen to be anyone's situation lately?  Just thinking I may be able to help you out there. ;)

I believe I have been the one lately to be getting a bit depressed about all this.  He was finally learning to live between the hits, after years of subtle hints and having O2 sitting around, he has finally not only tried it, but has started to use it!  Because this is sort of clockwork, we had learned what times of day were not good to go places or make appointments, or to head home and such.  Now....there are hits between the regular ones.  Four and five a day again!  I just weep to my God for strength for both of us. 

Went to our 30 yr class reunion this past weekend.  He had ONE injection left that we had been holding onto for dear life. Well towards the end of the dinner, he got a hit.  We made our exit and headed home.  He used his Gold in a syringe, and waited in the car insisted I go change and get the snacks and stuff for the after party.  Thanks to God, by the time we drove there, he was just about pf.  I told him to inform me if we needed to leave the party.  He was good again till about 2am  :(  All he has now is O2 and is reluctant to leave the house.  I hate this!  If anyone can help us or has any suggestions, I am willing to read and listen as I always have been.

Thanks all!  You are a great bunch.

Beth

Quote:

...which decreased the hits to two - three a day. (or night)  but since Aug. that all has changed.  He is afraid they are going back to the way they were.  The stockpile we had is depleted.

There is possibly no stockpile or supply of Imitrex that can make it through an entire cycle at several hits a day.  This is sort of a given, and what makes prevention such a valued treatment, gold, as you might say.



Quote:

He is using O2 now much more often and it seems to help somewhat, with some ice on the neck and some black coffee.

Oxygen is a much more practical abortive that can be used as often as needed, however, it's effectiveness is tied to the right equipment and technique.  This allows the much more limited Imitrex to be kept and used for unexpected surprises on the road and such.

Another aid otherwise, well I'll drink straight espresso, but Starbucks has a 6.5oz can of Double Shot, which can surprisingly be of help.  That or power drinks like Red Bull, Monster, and Rock Star.  These can be of assistance in need.

A preventive regimen, treatment, or medication really is a good way to go with clusters and not mentioned in your post.  There are a couple ways it can be done that doesn't involve having to deal with the medical profession.  These may be of value and any of the many here who have success stories using them will help if it is in your interest.  Your doctor should also have preventive treatment available at the first sign of this difficulty.

Hang in and make sure to read the oxygen link highlighted on the left tabs.  Also, that Imitrex tip works and can help extend the injections from 8 into maybe 24.

Does your Husband's O2 mask have a bag on it? How high does the regulator go? O2 must be used correctly for good results. I abort 97% of my attacks with O2 alone. I do have a top of the line setup.

I would be on getting that Imitrex asap. And please have your Husband read the link below about O2 for CH.

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It may be a good idea to call the Dr who did the Gamma Knife, to let them know it appears to have failed your Husband.

Fighting CH is hard but there is hope. This msg board and the great people and info here can help us find what we need to fight. Learn from here, what the best treatments are.

Don

It would help us to make some focused suggestions if you would provide a history of treatments you have/are using. Need a list of meds: dosing, duration of how long used, response, etc.

I have been on before, it has just been a few months.  I bought the O2 mask from here, but it sat a long time. Now being used.  He CAN abort with O2 if caught immediately.  His night hits or hits after he is asleep are the ones he needs the trex for the most. He is chronic. He is on verapamil and Depakote as preventatives per neurologist, who has no interest in most suggestions I make. (After my begging every time I was there, they ordered O2 but at 10 liters via nasal cannula.  I knew better and bought a regulator and mask.)  I bought Batch's fix, and he takes that as well.  Melatonin to help at night too. 

Thanks for the tip about the informing the Gamma knife Dr. I think I will do that also. 

On a down note...ER trip two nights ago.  They gave him dilaudid (I know...:P) a steriod, something for nausea, and his BP was too high, so they gave him something to bring that down too.  I don't know which one to thank, but he had been PF for almost 30 hours!  That hasn't happened for him in years!!  Weather is changing now, and I had to go to work.  I am anxious to see how his day has gone so far. He had a full nights sleep last night too! Doesn't seem like a big deal to some, but to those of you who suffer, you understand! We haven't had a full night's sleep in a long time!  It felt good. I was suprised when WE woke up around 7am.  [smiley=sleep.gif] [smiley=sleep.gif] [smiley=sleep.gif] I even had more energy today.

Thanks to you all.  We are still unsure about the meds, but we see the Neuro again next week.  I hate the 2 1/2 hour drive one way.  I do the driving and Pittsburgh is crazy! 5 hours on the road for a 1/2 hour appointment.  Just doesn't seem worth it at times. 

Here's to positive changes!
Beth

Beth E wrote on Oct 18^th, 2012 at 4:28pm:

He is on verapamil and Depakote as preventatives per neurologist, who has no interest in most suggestions I make.

It would appear the preventatives are not adjusted to an effective level, this would be the first issue I'd address with the doc.  Verapamil has a range to explore and the dosage needs to be adjusted gradually.  It's most definitely not a med to prescribe and leave at a certain dose while he continues to suffer. 

And why am I unsurprised again at a preventive treatment falling short of expectations with Depakote being involved.  This seems popular lately, but it's track record on this site would make it seem far from any first line preventive choice, yet it shows it's face again as an effectively deficient preventative.

Sorry for the rant, but I'd like to ask the doc to tell me why this choice of Depakote, but I really doubt I'd get an honest answer.

In the midst of all this fog of war you asked if any of us used the imitrex tip? Yes, and I do, too. I use it with the autoinjectors as described and generally inject into my calf. This is because I can do that in public (more or less) and when I need to inject it's usually an emergency. I also got a prescription for vials and insulin syringes. They are much easier to use since I can control how much I draw from the vial into the syringe. I save these for at home.

I'm very moved by your statement that all your husband now has is O2 and he won't leave home. I get it. I've been there. I'm mostly there even though I am enjoying an 11 week remission since I had an occipital nerve block done. The fear is real, the pain is real, and the need to stay around the only abortive available is real. It's the second worst side effect of this condition, pain being the first. I have found that chugging the double can of Monster and going on the O2 can extend the pf time between hits. If he hasn't tried this, encourage him to do so. blessings. lance

he had been PF for almost 30 hours

The beast is back.  :-[ But at least the almost 40 hours was like a mini vacation for him! 

Will be taking many of your suggestions to heart!  I am the "pusher".  I'm thinking he is trusting me (through all of you) more when I suggest things.

Lance, is the occipital nerve block the one done through injections?  He had some kind (I thought that kind) done twice about 5 years ago.  The first one gave him a few weeks PF...the second...only a couple days.  They chose not to do it again.  They were looking at the stimulator when his Dr. left the area, then we lost his insurance (not working enough at first, I began working extra to pay the extended and then Cobra, until I just couldn't work three jobs and take him to all his appointments and such, or just have a life to enjoy) Now he has been with the VA for a little over a year, they have started from scratch!  So frustrating.  We gave them ALL his records....I don't believe they were looked at really. >:( So here we are...only positive (and it is a big one) is finally getting O2! The VA closest to us (Erie) and the VA where his specialist is (in Pitts) are not in very good sync with one another either.

They have sort of shut him off until he stops smoking. I mean, I hate that habit also, but don't they understand he has enough battles to fight?  My prayer is that when the time comes, he will be strong enough to quit.  It is such an expensive habit, and we could use that money to buy a few more injections.  He was in the garage one day and got a hit, threw his hand up to the side of his head and broke his glasses in the process!  He stumbled his way into the house, asking for help with the glasses, grasping for the O2.  I couldn't fix them, the small screw actually snapped in half leaving part of it in the frame. It had no head on it so I couldn't unscrew it. Lens couldn't stay in it of course either.  Luckily we hang onto the older pair for such occasions.  Took them back to the VA and they repaired them at no cost.  (Thank the Lord)  Hard to explain to them tho how it  happened.  He just told them he got hit in the side of the head.  Well.....that wasn't a lie! :D

Enough of my ranting....thank you all for listening.  I know you probably have some crazy stories also!

Beth

Hey Beth, you mentioned he won't leave the house because he can't be away without his O2 since you're out of imitrex. My husband takes his tank with us. He gets E-Tanks so they fit in the trunk of the car. As long as we're within 5 minutes of the car he's good. He just has to pay attention to the onset and get out there. Ten minutes in the car, he's aborted. At that point we may go home because he's exhausted from the fight, or we may resume some of our activity. But he's not chained to home is my point.

I know someone else who has an even smaller tank that fits in a sling that he wears like a backpack. So he's got it everywhere he goes.

Hope that's a useful tip. As hard as this is on the sufferers, I feel your pain and frustration as a supporter.

God Bless.

He has taken it with him a couple times.  He just hates too. (being stubborn)  I suggest that often. 

Now that I get to thinking, wondering how long lithium takes to clear your system once you are totally off again?  He had been on that and the new Neuro wanted him off and tapered him down.  (If I remember right, she stated that it sounded like it wasn't helping anyway. ) That's when she started him back on the Depakote.  But lately....headaches worse and increasing in number again after a couple years.  I am gonna question her on that this week when we see her. 

Gonna get two of the grandkids tonight.  They have seen him between hits, and even in the hospital.  They know Papa gets "sick" a lot and are pretty good about it.  I just steer them into another room to do something, or take them outside for a while.  If he catches it and can breathe the O2, they have seen him doing that.  Because this has been going on their whole lives, it is just a normal thing to them for him to be this way.

Thanks for all your suggestions!  Blessings to you all.
Beth

My husband uses lithium as a preventative while on cycle. He does a prednisone taper while he ratches up the lithium. It does help alot. Then o2 for an abortive. But since getting on the D3 during his last cycle, 2 years ago, he has been PF. We're believing it's the d3, but it could just be a remission, although he's never gone this long before.

Ever look into our Clusterbusters page?

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Beth E wrote on Oct 19^th, 2012 at 11:23am:

he had been PF for almost 30 hoursLance, is the occipital nerve block the one done through injections?  He had some kind (I thought that kind) done twice about 5 years ago.  The first one gave him a few weeks PF...the second...only a couple days.  They chose not to do it again.  They were looking at the stimulator when his Dr. left the area, then we lost his insurance

Yes, that's the one. Your husband's experience is pretty typical, and while I've had better results I'm not so sanguine about future attempts. Maybe a defense mechanism but little seems to work forever with the beast. Do more research on the stimulators. Effectiveness runs the whole gamut there, too. I'd definitely try clusterbusters first, though. God bless. lance