O.k. guys, I'm new and a little desperate right now. 2am and I'm feeling the second ache coming on already, only been half an hour since the last one. I'm one week into a 12-14 week cycle and ramping up fast- about a 7 now. Don't have any o2- just learned about it a couple of days ago. No imitrex- hasn't worked very well for me anyway. Been taking aleve evry 6 hours hoping to take the edge off- not working, been drinking enough to have to pee evry half hour, took a 5 hour enrgy drink and alls that's done is make me jittery. Have an appointment with a spine Doc tomorrow, but have to make it untill then, Have a bulging disk in my neck and lower back and injury seems to always play a part just before I go into a cycle and don't you know about a month ago I pulled some muscles in my back. Any suggestions?

NancyB wrote on Jan 21^st, 2010 at 4:17am:

No imitrex- hasn't worked very well for me anyway.

Having used Imitrex before, was it prescribed due to diagnosis of a previous cluster episode?  Nasal spray or shots are best compared to pills, if that was given. 




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Have an appointment with a spine Doc tomorrow,

For care of your spine this is helpful, but how about the doctor who diagnosed clusters or prescribed the Imitrex?  It would be an important appointment to see a doctor for the clusters, especially if you are talking another 12 weeks of this.



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Any suggestions?

There is an oxygen tab to the left, it's help for many when talking to a headache doc familiar with clusters.  Meanwhile, adding also an icepack held with a washcloth applied directly to the temple is slightly alleviating, but try to make it a priority today to be seen for the clusters.

Welcome NancyB
   Sounds like you need an apptmnt with a good neurologist.
   Print up some info from this site, and take to him/her in case they are not up on everything new.

good luck to ya

Hi Nancy,

I didn't see this post prior to responding to your post on the other thread.  Has your past experience with Imitrex been with pills or injections?  I ask because generally pills are ineffective for CH'ers.

Dallas Denny

The imitrex was the nasal spray. Worked o.k. for the head cluster at the time, but then would have several more only a few minutes apart the rest of the day. Don't live in the same state as I did when I was diagnosed anymore and that was over ten years ago so they probably don't even have my records still on file. Also I live in the sticks- by the time I can get into see a neuro I'll probably be over this cycle- yes it can take that long here to get into see a specialist - they are usually only in town one or two days a week. Next closest town or city is over two hours away and not always possible to get to this time of year. I will ask my doc today though to see if he can get me a referal to be seen sooner though.

Get oxygen ASAP now. It worth a try. Oxygen is miracle most of us. Look the oxygen info on the left.
Hope PF soon.
Steve

NancyB wrote on Jan 21^st, 2010 at 8:20am:

The imitrex was the nasal spray. Worked o.k. for the head cluster at the time, but then would have several more only a few minutes apart the rest of the day.

Aborting a hit with trex should give about a two hour span in between in a general sense.  Preventive medications are another step in treatment valued that could keep them from occuring, breakthroughs happening can be helped with another abortive, oxygen (mentioned above). 

Managing requires appropriate weapons, so to say, or alternative options on your own, such as a certain variety of seeds, which there are threads about and much good helpful advice to be offered.     :)

Hi Nancy, 31 year sufferer here, have learned to NEVER be without meds and oxygen, no matter how long I've been off cycle. I've had my best success using a 2 pronged approach in treating CH.

1: A good preventative. A medication you take daily to reduce the frequency and the intensity of your attacks. I use ithium at 1200 mg a day. It takes about 2 weeks to become effective, I use a prednisone taper to get me through that 2 week stretch. (Lithium scares people because of the Hollywood depiction of mouth breathing zombies! We take it at a much lower level then those who use it for psyche purposes!) Other popular prevents are Verapamil and Topomax.

2: A good abortive routine. A headache starts, now what? AS several people have already mentioned, oxygen should be your first line abortive. Got to bed at 1:00 am this morning, at 5:00 am the beast came calling! Watching the morning news now while sucking down coffee and huffing 02! Beat his ass again! ;) I can generally abort an attack in 8-10 minutes with oxygen.

In the past I had combined oral cafergot with my oxygen for a 1-2 punch. The oxygen would beat it back, the Cafergot would buy me up to 12 hours pain free. This time, at the suggestion of several on the board, I'm using sugar free rock star energy drinks. I chug one when I start the oxygen and so far it's worked as well as the cafergot at preventing the return attacks.

A lot of info all at once, sorry for the overload! Knowledge is your friend with CH. Keep reading!

Joe

I am very sensitive to caffeinebut tried a sports drink last night anyway. Will never do that again! Didn't help with the pain or lessen the length of the attack, but did wire me up so bad I couldn't even rest between them. Still have the jitters now after 7 hours and slept a total of 20 minutes. Desperate times and all that I guess.

Things that take more time to acquire than before nightfall, but are used and helpful are oxygen attained from a welder's supply and the alternative seeds.  Info and advice for starting up can likely be obtained somewhere on the medications, treatments, and therapies category of this forum.  Icepacks may have only the ability to drop half a Kip to maybe even one Kip, usually used though for a fast ramping hit while waiting for an abortive to take effect.  Beginning to pursue something now may pay great benefits for the rest of this term.  It comes down to having to be proactive and sooner is better.

So good news, bad news. Saw my Spine surgeon today to go over my MRI. My disk has degenerated more and is pinching the nerve- hence my clusters. Get to go have an epidural on monday but will need surgery at some point. But I get to take some heavy duty drugs tonight so hopefully I'll sleep. He also proved his point when he manipulated my neck and almost immediately I had pain. So that's the story. Keep your fingers crossed that that is it!

I'm pretty sure that if a pinched nerve is the source of your headaches, very few of the treatments mentioned on this site are going to be of benefit to you, i.e., oxygen.

What Brew said.

Hoping the best for you.

Jerry

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My disk has degenerated more and is pinching the nerve- hence my clusters.

Pinched nerves and CH? Unlikely. During medical procedures however, it's not uncommon for CH to recede but be very very sure about this kind of surgery. I know it's not easy to question your doctor, but do so anyway if you have the slightest apprehension.

No matter what, I hope when we meet again, it's that you want to tell us that it's because you're no longer dealing with this horror.

Good luck!

Charlie

We'll keep you in our family's prayers. Hope he's right and this ends your pain....sounds pretty serious. If it comes back, stick around and we'll see if we can point you in a good direction. Wishing you the best in surgery!

Joe

The doctor visit today explains better why Imitrex wasn't much help despite

NancyB wrote on Jan 21^st, 2010 at 8:20am:

I was diagnosed

The relationship of your head pain and an increasingly unsettled intervertebral disk would require a separate procedure, different treatment than suggested, as mentioned. 

While it is good to know pain's the cause, I also hope its ending will come with proper correction and recovery.

And because of this,


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to get into see a specialist - they are usually only in town one or two days a week. Next closest town or city is over two hours away and not always possible to get to this time of year.

It's also worth attention again to some of Charlie's contributing consistent wisdom.


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... be very very sure about this kind of surgery. I know it's not easy to question your doctor, but do so anyway if you have the slightest apprehension. No matter what, I hope when we meet again, it's that you want to tell us that it's because you're no longer dealing with this horror.

When ice packs have failed me I have also gone the other direction with hot damp wash clothes. Same effect as the ice packs. Same results, different day.

Hi goys thanks for all your sugestios and good wishes. Didn't post all weekend due to the fact that I was in too much pain or doped to the gills. Not sure wich was worse, in any case, I have an idea and want to know if it makes any sense to you guys.While I do have spinal problems (failed a couple of the neuro tests ) I don't think that explains all of it. Could it be that my neck jusy acts as a trigger when the time or conditions are right? LOrd knows I've done worse things to my back than pull a couple of muscles in my back when working out and had no head aches. Also my simptoms are way to close to Ch for me to believe that it's anything else. So let me know what you think.
Also just got back from the hospital this morning after having an epidural and feel much better. After the Dr. appointment on Thursday was awful- 4 hour headache after taking meds and dizzy and nausea on top. Pretty much non stop aches all weekend. Takes the guess work out of that I think.Think I should mention in case it helps anyone else out there that I have never had any neck pain- not even once- and that is the disk that's causing the problem. So if your going to have an MRI make sure they do at least your neck and head.
Now I just have to wait and see how long the injection lasts.As for surgery, my doc and I agree- as long as the injection works, keeps on working and I haven't lost too much motor function, surgery can wait!