Hello friends,
I had some questions in mind, I hope you can help with them

1) The first thing is that my CH has reduced in severity and frequency now I'm only getting around 2 per day and they are less severe. I'm getting all the usual symptoms blocked nose, droopy eyelid but I'm not getting red and watery eye. So is it still a CH?

2)Painkillers like naproxen and few more like diclofenac don't seem to work in reducing my headache. Is it normal because they never worked.

3) I went to a neurologist and told him my symptoms so he said these are the typical symptoms of a CH but I can't have it because I'm a female and females never get CH, so I'm lying. But I was diagnosed with CH by other doctors(headache specialist) and they never said anything like females don't have it.

4)A doctor prescribed codeine but I have heard it's habit forming so don't want to try it unless it really provides some relief, do you know if it works?

That's all
Thanks

Answering your questions...


Quote:

1) The first thing is that my CH has reduced in severity and frequency now I'm only getting around 2 per day and they are less severe. I'm getting all the usual symptoms blocked nose, droopy eyelid but I'm not getting red and watery eye. So is it still a CH?

Yes, according to the IHS (International Headache Society) which has the standard diagnostic criteria for CH - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - the criteria on frequency is:


Quote:

Attacks have a frequency from one every other day to 8 per day (During part (but less than half) of the time-course of cluster headache, attacks may be less frequent).

Two CH a day isn't fun and there is no way that "only" having two makes it not be CH.


Quote:

2)Painkillers like naproxen and few more like diclofenac don't seem to work in reducing my headache. Is it normal because they never worked.

Both of these are nonsteroidal anti-inflammatory drugs which act as mild pain killers. Now for CH they just won't even touch the pain of a CH (even the strongest narcotics don't help other than cause issues with dependency, etc.) plus you run the risk of rebound headaches from taking them too often too. I strongly suggest skipping pain killers with CH as they will not work.


Quote:

3) I went to a neurologist and told him my symptoms so he said these are the typical symptoms of a CH but I can't have it because I'm a female and females never get CH, so I'm lying. But I was diagnosed with CH by other doctors(headache specialist) and they never said anything like females don't have it.

Get another neurologist who has CH knowledge that is more up to date than one who is 30+ years out of date. Far too many women have been through this experience and they do have CH when diagnosed by a competent neurologist / headache specialist.


Quote:

4)A doctor prescribed codeine but I have heard it's habit forming so don't want to try it unless it really provides some relief, do you know if it works?

Codeine is a narcotic pain killer and it was what I was prescribed when I first started with what turned out to be CH before they knew it was CH. It doesn't touch the pain (even stronger ones don't) and it was not at all fun coming off it as it is very easy to become dependent, even though I'd followed the instructions for its use to the letter.

If a doctor is prescribing codeine for CH then it shows their knowledge of CH is very limited. Time to find another doctor who actually knows what they are talking about.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
===================================
Absolutely agree with Mike. Your doc is not competent to be treating you.
--------
LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

Mike NZ wrote on May 9^th, 2015 at 8:35pm:

Answering your questions... Quote: 1) The first thing is that my CH has reduced in severity and frequency now I'm only getting around 2 per day and they are less severe. I'm getting all the usual symptoms blocked nose, droopy eyelid but I'm not getting red and watery eye. So is it still a CH? Yes, according to the IHS (International Headache Society) which has the standard diagnostic criteria for CH - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - the criteria on frequency is: [quote]Attacks have a frequency from one every other day to 8 per day (During part (but less than half) of the time-course of cluster headache, attacks may be less frequent).

Two CH a day isn't fun and there is no way that "only" having two makes it not be CH.


Quote:

2)Painkillers like naproxen and few more like diclofenac don't seem to work in reducing my headache. Is it normal because they never worked.

Both of these are nonsteroidal anti-inflammatory drugs which act as mild pain killers. Now for CH they just won't even touch the pain of a CH (even the strongest narcotics don't help other than cause issues with dependency, etc.) plus you run the risk of rebound headaches from taking them too often too. I strongly suggest skipping pain killers with CH as they will not work.


Quote:

3) I went to a neurologist and told him my symptoms so he said these are the typical symptoms of a CH but I can't have it because I'm a female and females never get CH, so I'm lying. But I was diagnosed with CH by other doctors(headache specialist) and they never said anything like females don't have it.

Get another neurologist who has CH knowledge that is more up to date than one who is 30+ years out of date. Far too many women have been through this experience and they do have CH when diagnosed by a competent neurologist / headache specialist.


Quote:

4)A doctor prescribed codeine but I have heard it's habit forming so don't want to try it unless it really provides some relief, do you know if it works?

Codeine is a narcotic pain killer and it was what I was prescribed when I first started with what turned out to be CH before they knew it was CH. It doesn't touch the pain (even stronger ones don't) and it was not at all fun coming off it as it is very easy to become dependent, even though I'd followed the instructions for its use to the letter.

If a doctor is prescribing codeine for CH then it shows their knowledge of CH is very limited. Time to find another doctor who actually knows what they are talking about.
[/quote]
Thank you Mike NZ for the detailed reply, this is what I was looking for.

Bob Johnson wrote on May 9^th, 2015 at 10:40pm:

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message. =================================== Absolutely agree with Mike. Your doc is not competent to be treating you. --------

Thanks for your time Bob. I'm not continuing treatment with that doc he treated me like a liar.

Oh boy... did you EVER come to the right place..

That quack don't know the first thing about CH and you need to FIRE him immediately.

We've established (years and years ago) that Wimmen DO get CH (although Bob P is still arguing that point  ;D - it's an old joke around here). I'm a woman and what I've got is SURE nuff CH..

Narcs don't work for nuthin' to do with CH.. A can of Red Bull or some Excedrin ES will work better.. BUT, that being said..

There are a lot of better treatments going on right now.. D3 regimen is working wonders for so many of us. (Get with Batch and let him lead you in the right direction on that - I've been pain free going on two years now).

O2 on the right flow rate (15-25 lpm) with the RIGHT mask (non-rebreather) works to get rid of them in a few minutes. (Read the O2 literature on the left and do it right).

But the best thing you can do is get a GOOD neurologist who will listen to you and who knows something about CH. that's the really hard part. I went thru a BUNCH of them before I found one who actually knew something (and don't be afraid to tell them their kooks and fire their rears if they give you the run-around).

With CH YOU must be your own advocate. Read and learn all you can about CH and take that to the doc with you. If he won't listen to you - WALK out (I usually tell the idiot what I think before I leave but that's up to you...). Keep looking until you find one who will listen and treat you with "approved" meds (and read up on treatments so you'll know what's "approved" meds).

One thing to keep in mind.. What works for one of us might not work for the next guy. There's years of advice on here about what works for this one or that one, but it might work for you and it might not... it's trial and error till you find what works. That's why you need a good neuro - you have to keep trying till you find your magic bullet.

Imitrex is the drug of choice (a vaso-constrictor) to abort a CH once it's started. The shots are best, nasal spray a second choice and the pills are useless (too slow).

The prevents are all over the place. I take zonagran (400 mg) and trazazone (sp) (100 mg) along with the D3 regimen and melatonin (20mg) at night and am doing great (and I've been chronic since 97). But I still keep my O2 bottle nearby - just in case.

Read this board and when you have time go back in the archives and read some more. We've all been where you are and are here to support.. there's very little you can say that someone hasn't been thru.. So you're NOT alone..

Keep us informed on how you're doing. We do care.  :-*

I agree with all the other answers regarding symptoms, meds etc.

I also share your frustration at being told you can't have CH because you are a woman. I've been there too. Have a look for one of my previous threads - I think its titled "what a waste of time" on the general message board.

My neuro couldn't even be bothered to listen to me any more as I clearly disagreed with his diagnosis, and he sent someone else to see me at my last appoitment. I was so angry about it, but it turned out for the best because his replacement was a woman and she totally agreed with me.  She spoke the same language (clusterish) as all the folks on this site,  and for the first time I really felt I was talking to a doctor who understands. She agreed to take me on her list, so the other waste of space has been dumped.

Don't waste your money or risk your health with pain meds. Follow the advice you've been given about D3, oxygen, prevetatives etc, but if you still need an abortive med ask for sumatriptan ( may be called imigran or imitrex) auto injections. They're brilliant.

BarbaraD wrote on May 10^th, 2015 at 9:10am:

Oh boy... did you EVER come to the right place.. That quack don't know the first thing about CH and you need to FIRE him immediately. We've established (years and years ago) that Wimmen DO get CH (although Bob P is still arguing that point  ;D - it's an old joke around here). I'm a woman and what I've got is SURE nuff CH.. But the best thing you can do is get a GOOD neurologist who will listen to you and who knows something about CH. that's the really hard part. I went thru a BUNCH of them before I found one who actually knew something (and don't be afraid to tell them their kooks and fire their rears if they give you the run-around). With CH YOU must be your own advocate. Read and learn all you can about CH and take that to the doc with you. If he won't listen to you - WALK out (I usually tell the idiot what I think before I leave but that's up to you...). Keep looking until you find one who will listen and treat you with "approved" meds (and read up on treatments so you'll know what's "approved" meds). Imitrex is the drug of choice (a vaso-constrictor) to abort a CH once it's started. The shots are best, nasal spray a second choice and the pills are useless (too slow). Read this board and when you have time go back in the archives and read some more. We've all been where you are and are here to support.. there's very little you can say that someone hasn't been thru.. So you're NOT alone.. Keep us informed on how you're doing. We do care.  :-*

I had a heated argument with that doctor and I never went to him again. I have found a doctor who seems to understand my problem. He is ready to answer my questions and knows CH is painful.

I guess Imitrex and sumatriptan are the same. I cant take it because I'm allergic to it.

I'll keep you informed. Thanks for your time and support.

maz wrote on May 10^th, 2015 at 10:07am:

I agree with all the other answers regarding symptoms, meds etc. I also share your frustration at being told you can't have CH because you are a woman. I've been there too. Have a look for one of my previous threads - I think its titled "what a waste of time" on the general message board. My neuro couldn't even be bothered to listen to me any more as I clearly disagreed with his diagnosis, and he sent someone else to see me at my last appoitment. I was so angry about it, but it turned out for the best because his replacement was a woman and she totally agreed with me.  She spoke the same language (clusterish) as all the folks on this site,  and for the first time I really felt I was talking to a doctor who understands. She agreed to take me on her list, so the other waste of space has been dumped. Don't waste your money or risk your health with pain meds. Follow the advice you've been given about D3, oxygen, prevetatives etc, but if you still need an abortive med ask for sumatriptan ( may be called imigran or imitrex) auto injections. They're brilliant.

That doctor was a total waste of time and money. I guess D3 and oxygen are the best options that I have got, The only problem is that I cant carry my O2 cylinder everywhere.

That's why I reccommend the injections. They are small enough to go in my hand bag and I never leave home without them. I use the 02 when I'm at home and the injections when I'm out.

maz wrote on May 10^th, 2015 at 2:39pm:

That's why I reccommend the injections. They are small enough to go in my hand bag and I never leave home without them. I use the 02 when I'm at home and the injections when I'm out.

The problem is that I'm allergic to the injections can't use them. :(

That's a bummer! What about the nasal spray. I haven't tried it myself but it's supposed to be not as good as the injections but  better than the pills which take too long to be of much help.

winner19 wrote on May 10^th, 2015 at 11:13am:

I guess Imitrex and sumatriptan are the same. I cant take it because I'm allergic to it.

Sumatriptan is the generic drug name, with imitrex and imigran being brand names used around the world.

Since you're allergic to to it, I'd also be cautious about any of the other triptans which are commonly used to abort CH and migraines, e.g. maxalt melts and others. I'd always discuss this allergy with any doctor who prescribes you medication to abort a CH with pharmacists being a good backup as they are often more clued up than many doctors about drug interactions.


winner19 wrote on May 10^th, 2015 at 11:21am:

That doctor was a total waste of time and money. I guess D3 and oxygen are the best options that I have got, The only problem is that I cant carry my O2 cylinder everywhere.

There are options around O2 portability including having one in the boot of the car and park nearby to where you are, one at work (where you can use it discretely), etc. What I'd also do when in cycle was to have a small cylinder that fitted in a backpack that I could carry around plus it had my other CH supplies like Red Bull, etc.

There's another vaso-constrictor - Cafergot... I really like it better than Imitrex, but only a few here use it. It's an OLD drug and hard to find.

I think it works better than the trex, and works longer with less side effects, but I got it in pill form and it takes longer to work that way, but... It also comes in suppositories.

Back in the "day" it came with phenobarb in the suppositories and worked great, but then they took the phenobarb out and YOU MUST take an anti-naseau pill BEFORE you use the suppository and give it time to work .. or you will be throwing up (trust me on that one).

Back when I was episodic (way back a long time ago) when I'd get really down, my doc would start DHE-45 IV and it would usually break the cycle and I'd be good till the next cycle. It's also something that has to have an anti-naseau drug with it. And it's awful stuff, but...

But that's something you can use instead of Imitrex. Ask your doc about it.

:-*

maz wrote on May 10^th, 2015 at 3:13pm:

That's a bummer! What about the nasal spray. I haven't tried it myself but it's supposed to be not as good as the injections but  better than the pills which take too long to be of much help.

I had told my doctor about the allergic reaction to sumatriptan, since it was severe he told me not to take it. I have tried 2 more types of triptan and got allergic reactions to them as well so my doctor is avoiding any type of triptan.

Quote:

There are options around O2 portability including having one in the boot of the car and park nearby to where you are, one at work (where you can use it discretely), etc. What I'd also do when in cycle was to have a small cylinder that fitted in a backpack that I could carry around plus it had my other CH supplies like Red Bull, etc.

Thanks for the tips I'll try to incorporate them whenever possible.

BarbaraD wrote on May 11^th, 2015 at 7:47am:

There's another vaso-constrictor - Cafergot... I really like it better than Imitrex, but only a few here use it. It's an OLD drug and hard to find. I think it works better than the trex, and works longer with less side effects, but I got it in pill form and it takes longer to work that way, but... It also comes in suppositories. Back in the "day" it came with phenobarb in the suppositories and worked great, but then they took the phenobarb out and YOU MUST take an anti-naseau pill BEFORE you use the suppository and give it time to work .. or you will be throwing up (trust me on that one). Back when I was episodic (way back a long time ago) when I'd get really down, my doc would start DHE-45 IV and it would usually break the cycle and I'd be good till the next cycle. It's also something that has to have an anti-naseau drug with it. And it's awful stuff, but... But that's something you can use instead of Imitrex. Ask your doc about it. :-*

I'll ask my doc whether he can prescribe it for me, whether it's suitable for me or not. If he prescribes the medicine I'll let you know how it worked. :)