I am a mom and a wife, and this is my second severe cycle with these cluster headaches. I don't know what to do. it feels like someone is stabbing me. I am so depressed and i don't understand what to do to comfort myself. No one can really understand it, and it is scary. I am so upset, I am going through it as I type. Someone help with any tips please. Medication is only helping to mess up my stomach and the blood pressure meds don't help.
:'( Daydi

You don't give a lot of info - but do indicate you may have been prescribed some medications?  Have you been diagnosed?  Have you been given any abortives to help - Imetrix injections, nasal, O2?

Depending on where you are in this horrendous trip called CH's will very much impact what kind of good information you will get.  A bit more information from ya and I think you might find some advice on this board that will give you at least some relief....

I'm reading alot into your few lines but it sounds: like you don't have a doc who knows his stuff, otherwise you would not be lacking a good treatment program; you would not feel so hopeless.

IF you don't have a doc who has education/experience intreating headache, the first step is to find one.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Please avoid trying to treat your "clusters" until you have seen a good doc who confirms this diagnosis.

So, please get back with some basic information: what kind of doc are you seeing? what treatment have you been given?

Thank you both, I have tried Imatrix, topramax, suratriptan, I took linsinopril, and now i am on Norvacs. They have to give me small dosages of that like 2.5 because my blood pressure is low.  Nothing works. I take motrin, tylenol, advil and none of them work. This is my second cycle i was in remission for 3 years. IDK what the trigger was but U don't drink or do drugs, or smoke. I was diagnosed 3 years ago by a neurologist, I had cat-scans, all sorts of tests and by the time they figured out what it was it went into remission. Since then I have had mild bouts but they are super intense right now. This has made me consider suicide. If I was single with no children I don't know what I would live for. I have had headaches since childhood, and now I have two different types. I am miserable.
I apologize for not being more articulate right now, i am in the end part of a 3 hour headache, this is a cry out right now. I promise when I am feeling a little better, I will explain everything so that I can get some help with this.

Thanks so much

Wow.  Hang in there - I am hoping you have not tried the Imetrix injectable, because that is my only sure thing.

There are some other options that have been discussed on this board that may be worth a try.  Wait till the Beast is gone and do some reading.

I'm so sorry to hear you're in this place, I've been there too. I learned some things you can do right away, without a doctor:

1. Energy drinks. Chugging any energy drink with caffeine and taurine in it can help abort a headache. Worst side effect is being jittery or feeling "wired".

2. Going for a really fast run, or doing anything else to keep you hyperventilating oxygen. (When you feel better, ask for a prescription for the real stuff and we can tell you how to use it.)

3.  Ice or heat, depending on which feels better. Try it on your head, your eye, on the back of your neck. Maybe a cold or hot shower.

4. If all else fails, you *may* find relief at the ER. But remember, they get lots of "drug-seekers" and not a lot of cluster folk. I find it's best to assure them early you do NOT find narcotics helpful, but want to try something else like DHE or olanzipine. Or 100% oxygen at the highest flow-rate they can give ya.

Hang in there, it does getter better. Probably hard to believe right now, but it does.  [smiley=hug.gif]

You second message has strongly reinforced my recommendations: very much need a headache specialist.

Most of the meds you are using are not appropriate for Cluster and not knowing he doses you are using makes any sound responses impossible.

What is the potential that you will/can find a specialist?

Thanks for all of the support, it helps to know that someone that is suffering with the same affliction that I am is out there. I did not take the Imetrix injections it was in pill form. it made me feel terrible. I don't know what the likelihood of getting a specialist with my crappy insurance is but I go back the this new doctor that I am seeing and I will try to get a refferal. Thank all of you so much for the tips, I really appreciate it. I use to drink sodas with caffeine and take Excedrin migraine with caffeine and that use to work a little. They told me caffeine was a trigger so I stopped drinking it. I guess its time to start experimenting again.

Thanks again. I love this place.

Not only is caffeine NOT a trigger (for most, at least), it can abort an attack. Try a Red Bull next time, and slam the thing as soon as you feel it coming on.

Thank you !I will try it.

What may confuse the issue re: caffeine, is that for those who take it regularly, sudden withdrawal can cause some painful headaches, sometimes lasting for days.

For what it's worth, I've found the following through personal experience... if you are a regular caffeine user, it pays to keep using it or at least to withdraw slowly to avoid "withdrawal" headaches.

If you are not a regular user, but only "as needed", it may work a bit better. The longer I use any drug, OTC or otherwise, the less it tends to work. This could be due to rebounds or recurrence of the original attack, but that can be hard to sort out.  Be willing to change your approach as needed.  And here's a pic of a smiley I just found, mooning ya... just because.  LOL [smiley=moon.gif]

The guys have given you some good advice. This website has more info about CH and treaments than most Dr's. So read and learn all you can and more. Below is a link to OUCH recommended Doctors. OUCH is "The Organization for Understanding Cluster Headaches."
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The list doesn't include all good headache Doc's. When we know what the proper treaments are, ourselves, it makes the battle so much easier.

Don

It sounds like you've been getting advice from someone who is confused as to how caffeine is linked to migraines and CHs. For CH it's a great weapon to have in your armoury as an energy drink, like Red Bull, can help abort or limit a CH. However for migraines it is a very common trigger.

I get both migraines and CH, with caffeine being a trigger for my migraines, so I've a delicate relationship with caffeine, so normally I avoid it, but if I need it for CH I'll use it without doubt.

With "normal" caffeine use, many people love a coffee in the morning, not as they need it but because they are in withdrawal from not using it overnight. When stopping using caffeine it is very common to have a bad headache for a few days, however this soon vanishes.

Lisinopril is for HIGH blood Pressure, not low. 

When you find a GOOD doctor that knows what he's talking about..02 is going to be your savior.  I have a regulatpor that goes to 25 lpm (45 is better) and a non-rebreather m,ask and if I get on the 02 at the very first twinge of a CH coming on, I can abort in under 10 mins.  3 hr. headaches will be a thing of the past.

So just to recap:
1. get a good headache specialist

2. ask for a prescription for O2 (100%) with a nonrebreather mask and a regulator that is no less than 15lpm

3. Ask for a good preventative and a prednisone taper to fill up the time it takes for the preventative to build up

4. Get some abortive: imitrex injections or migranal nasal spray

5. stock up on Monster or Red Bull and slam one at the first sign of an attack and then hit the O2

Keep us informed of your progress. God bless. lance