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        Cluster Headache Help and Support >> Getting to Know Ya >> hello new person here needing an ear please 
        
(Message started by: doddy7 on Feb 7^th, 2008, 11:00am)

Title: hello new person here needing an ear please
Post by doddy7 on Feb 7^th, 2008, 11:00am

hello
is there anyone about to talk to me please? :'( [smiley=worried.gif]
husband suffering with ch and dr just given him oramorph has anyone else had this? did it help?

Title: Re: hello new person here needing an ear please
Post by Ray on Feb 7^th, 2008, 11:14am

Hello Doddy7:

Oramorph is Morphine. It is not particularly helpful with cluster headaches. I would suggest that you get your husband to a headache specialist to begin a preventative regimine of medications and to use more likely abortives such as Oxygen at 15 liters per minute by non rebreather mask, or Imigran/Imitrex injections.

Good luck to you, others in your country may be able to provide more insights into your healthcare system than I can.

Wishing you well,

Ray

Title: Re: hello new person here needing an ear please
Post by doddy7 on Feb 7^th, 2008, 11:34am

thanks 4 reply. starting verapamil 80mg x 3 tomorrow morning hope that may help him a bit.
how long have u suffered and how long have you been a ch person?

Title: Re: hello new person here needing an ear please
Post by Stinger on Feb 7^th, 2008, 11:46am

I've tried morphine, oxycontin, but it just isn't fast enough to catch the beast.

Title: Re: hello new person here needing an ear please
Post by doddy7 on Feb 7^th, 2008, 11:57am

what do u take now?

Title: Re: hello new person here needing an ear please
Post by Ray on Feb 7^th, 2008, 12:01pm

Dear Doddy7:

I've had chronic cluster headaches since the first one in April of 1987, that's nearly 21 years now. A CH person, meaning here on this forum? About 8-9 months now. The verapamil that you mentioned may need to be adusted upwards, quite a bit. Often the verapamil is combined with prednisone to provide some relief while the verapamil is "ramped up".

Don't loose faith, it may take some time to find the right combination of medicines to help your husband. I do recommend that he NOT use narcotics, as they are not generally helpful and often cause rebound headaches as well as being addictive and potentially deadly.

Please take the time to read through as much of this site as possible, there are tons of resources here and many many years of combined experience.

This may or may not be helpful to you, but in 1990, I saw a neurologist at Charing Cross Hospital in London, his name was F. Clifford Rose. At least he was knowledgable about the condition and the current treatments for them.

With best wishes,

Ray

Title: Re: hello new person here needing an ear please
Post by Ray on Feb 7^th, 2008, 12:03pm

I don't know if you're asking me, but I do not currently take any preventative medications, having been through nearly all of them, alone and in combination over the years.

I use O2 via a demand valve regulator and Imitrex/Imigran injections when necessary. Oxygen aborts about 80% of my headaches within 5-10 minutes.

All the best,

Ray

Title: Re: hello new person here needing an ear please
Post by doddy7 on Feb 7^th, 2008, 12:20pm

is the top of your head very tender? and have you tried holding water in your mouth on the same side as the pain? it seems to help dave but not sure if anyone else has heard of doing this? also his head has become very flakey recently is this another side effect? :-/

Title: Re: hello new person here needing an ear please
Post by Guiseppi on Feb 7^th, 2008, 12:28pm

What he eventually wants to do is establish a 2 pronged approach to his treatment. Nothing "cures" this condition but it can be managed to an extent he can get his life back!

1: a good preventative medication. That is a medication to take when your cycle starts up to reduce the number of attacks, and their intensity. That's what the doctor is trying to do with the verapamil. He may find he has to go to a much higher dose to get relief, as high as 960 mg a day. DO NOT increase the dose without advice of your doctor as he needs to be monitored while the dose goes up. Don't expect fast results, it takes a week or two to get into your system and get to work.

I use lithium as my primary preventative medication. It takes about 10-14 days to reach a therapeudic level in my system. I do a 2 week prednisone taper to protect me while I start up the lithium.

2: a good abortive strategy. The headache has started, what do I do now? Your first line abortive should be oxygen. I can abort a headache, that is be completely pain free, in as little as 6 minutes just with oxygen. The KEY points. Must be at a high flow rate, 15 LPM or better, out of a "Non Re Breather Mask" and it must be started at the first sign of an attack. Nasal canulas and re breather masks are useless as you must get only pure oxygen to your lungs for it to work. A great link on the left of the board to click on, "Oxygen Info" shows you how to set it up.

Other great abortives are imitrex injectables and nasal sprays. You should read as much as you can on this site and be prepared to educate your doctor as most know very little about this condition.

Thank you again for being a suporter. Your husbands a lucky man to have you. My wife has put up with 28 years of these damned things and is still around to help me out. It means the world to us to have you guys!

Guiseppi

Title: Re: hello new person here needing an ear please
Post by Guiseppi on Feb 7^th, 2008, 12:31pm

Yes my head gets very tender on the side of my head ache. Like someone pulled my hair so hard it's bruised. Ice on the back of my neck helps me a little. I don't get the flaky scalp.

For now have him try chugging strong coffee, or even better, energy drinks, Monster, Rock Star, etc, any containing the combination of caffeine and taurine. Many can abort or at least reduce a headache using them.

Guiseppi

Title: Re: hello new person here needing an ear please
Post by doddy7 on Feb 7^th, 2008, 12:38pm

i thought caffeine gave you a head ache????? :-*

Title: Re: hello new person here needing an ear please
Post by RichardN on Feb 7^th, 2008, 12:56pm

Hi and Welcome

Ditto to Ray and Guiseppi's posts

When I got here 2/02, Verapamil (after about 2-3 weeks) gave me the first PF day in over a year. I got as high as 480mg daily and used Verapamil for a little over two years.
Don't be surprised if he has some constipation (manydo . . . some don't . . . I did) . . . easily remedied with diet or stool softeners.

ABSOLUTELY GET HIM SOME OXYGEN! . . . your NHS provides 02 at no cost delivered to your door. With apologies to Helen (Le Limey) if I get any of this wrong . . . . All you have to do is get your GP to fill out a HOOF form (Home Oxygen Order Form?) and check (tick?) the box marked Cluster Headaches.

I also am off preventatives and use water therapy (see "water X 3" . . . link on left) and 02 to abort . . . and can almost always kill him within minutes. I can't use Imitrex (Imagran) due to some artery blockage and high cholesterol, so 02 is my only abortive.

Coffee, energy drinks with caffeine & taurine, cold/heat on side of face and neck (most prefer cold)

How long has he suffered these monsters and when was he diagnosed?

Glad you found us . . . . do know that the info you will receive here comes from folks who truly know his pain. This place gave me my life back and I don't fear the beast at the level I once did.

Be Safe, PFDANs

Richard

Title: Re: hello new person here needing an ear please
Post by doddy7 on Feb 7^th, 2008, 1:22pm

hi richard
i am dave's wife dawn.
he was diagnossed today. he been suffering for last 3 weeks but thought it was sinusitus lol how wrong were we. do you know sudafed duel seems to help him at times have you heard of this?

Title: Re: hello new person here needing an ear please
Post by RichardN on Feb 7^th, 2008, 2:36pm

Hi again Dawn

Many, many here were first diagnosed with sinusitis and many have had surgery to correct same . . . mostly ineffective.

I haven't used Sudafed (anti-histimine isn't it?), but I think I've read that it may provide some temporary relief for some. I'm sure the pros will be along to give more specific info regarding same.

Having said that, my gut feeling is that, because most attacks last 20-45 min, plus the occasional 1 1/2 hr horrors, the attacks may have ended on it's own. When I got here, I was having 6-8 attacks a day and sometimes 3-5 at night . . . I was taking Goodies Powders two at a time when I felt the beast coming, and thought they were doing some good as most would disappear within 20-30 minutes . . . . all I was doing was eating up my stomach lining.

I'm sure someone will be along to further comment on the Sudafed.

Be Safe,

Richard

Title: Re: hello new person here needing an ear please
Post by imfareware on Feb 7^th, 2008, 5:57pm

Hello. I've had them since 86, I'm episotic (yearly, and they are guarenteed to come). I've been on everything, and nothing really worked except red bull, excedrine for migranes (mega caffine). Oxygen has been my savior this year and a melatonine before bed. All the pain relievers in the world wont take the pain away from me. For the 90 - 120 minute bout of pain I learned to handle it. Put ice on the forehead, side of head, neck. Darkness, peace, quiet, and being his wife, just let him know you are there for him. That helps the most. Hang in there!!!! :'(

Title: Re: hello new person here needing an ear please
Post by Stinger on Feb 7^th, 2008, 8:11pm

I am taking Verapamil and Prednisone now. I also have Zomig and Stadol for the really bad ones that make me wish I had a gun.

Title: Re: hello new person here needing an ear please
Post by Linda_Howell on Feb 7^th, 2008, 8:58pm

Quote:

i thought caffeine gave you a head ache?????

You're probably referring to the withdrawal of caffeine hon. Sometimes stopping caffeine suddenly will do that but that's NOT the kind of HA we're all talking about. Caffeine is good. Caffeine is what we need to constrict the blood vessels which, in a CH attack swell up to 20 times their normal size.

Dawn...while I realize you have limited experience and knowledge about this subject, just as we all did at one time too, Please try to calm yourself so you can be a help to your husband. I get the sense of urgency on your part and that you are asking questions all over the place, so try and focus. This is NOT a put-Down. We all want to help get you sorted out and on your way to help.

Take a deep breath and let us know his history. Was he diagnosed? How long ago? What has he tried as far as meds? What worked? What didn't?

If I (and others here) can get a picture of his history, we can give you links to look at, and let you know our experience with certain drugs or treatments.

Linda

Title: Re: hello new person here needing an ear please
Post by RichardN on Feb 7^th, 2008, 10:52pm

Dawn,

Does Dave consume alcoholic beverages? If so, STOP! Alcohol in any form is a major trigger for most of us. Many episodics can drink out of cycle, but avoid during a cycle. I'm chronic and it's guranteed to wake the beast for me. Haven't had but one real beer in the last six years . . . and that one set off a Kip 10 I won't forget for a long time.

Exhaust fumes are another trigger for me . . . for some people certain perfumes or other chemical odors.

Did the doc explain what is happening in Dave's head? It helps to know what's going on. On the first page of the "OUCH website" (yellow link on left), there's a graphic showing the trigeminal nerve. Beside that nerve run blood vessels. For unknown reasons our hypothalmus sends a signal that dilates those vessels (up to 20 times), putting pressure on the nerve . . . causing the pain. You can trace that nerve and trace his/our pain. All the abortives mentioned above constrict those vessels, taking pressure off the nerve . . . pain goes away.

Keep reading . . . keep asking.

Be Safe, PFDANs

Richard

Title: Re: hello new person here needing an ear please
Post by miss_k on Feb 9^th, 2008, 6:55am

Hello doddy7. First off, I want to tell you that you have absolutely come to the right place! I am the supporter of a clusterhead and the info from this board has been a lifesaver.

I wanted to second a couple things RichardN mentioned. When the headaches first came into our lives, and we had no idea what they were, our first notion was that they were sinus/allergy related. This was due to the fact that they came at the same time of year (fall), and also because my CH'er had suffered damage to his sinuses--and the headaches were always on that side. So I would give him an antihistamine (Benadryl) when the headaches hit, and in about 25 minutes it would seem to start helping. But the fact is, after reading up on CH, I realized the headaches were likely resolving on their own. We don't use any sort of OTC allergy/sinus reliever anymore. The headaches generally last about 30 minutes. We don't get extended headaches yet but sometimes we will get two in rather rapid succession.

But, what has worked for us incredibly well is taurine supplements starting about a month before the onset of his cycle and Red Bull always on hand as an abortive--both of which I learned about on this board. (A lot of people also swear by O2 but we have not needed it as yet.) When aborting doesn't work, we know we have about a half-hour of hell ahead of us. But just knowing that much helps. All CH'ers have different ways of coping with headaches when they come; if my guy is really really screaming, we agree it's best for me to go away while that's happening. But mostly, he likes me to stay close by so he can talk himself through it. That gives me a chance to watch the clock, and I can tell him: "Just hang on for ten more minutes and it's going to be better." It seems to calm him down (which I think is really important).

Also, and I have mentioned this on another thread, my clusterhead suffers from severe Seasonal Affective Disorder. The 2 problems really go hand-in-hand for him, and by attacking from both sides (taurine for the headache, SAD lamp for the SAD, then getting him into a better climate during the extreme winter so he can get some sun and more importantly, get some exercise) we have really brought the problem down to a manageable level. If he stays in our Midwestern climate his CH cycle goes on all through the winter. Yes, we are VERY lucky to have flexible lives that we could rearrange around these health issues. We are also very determined to treat this holistically for as long as possible--i.e. no prescription meds. That's very much our personal choice and god knows, if the meds give you relief I am the last one to criticize. We just wanted that to be our last resort.

As for caffeine/non-caffeine, I don't think this is so much the factor for us. We drink mostly decaf at home with occasional caf when we dine out, and it doesn't seem to make a difference as far as triggering is concerned. (However, to echo RichardN, strong cleaning fumes like bleach will set him off. We also drink alcohol very rarely and then only in small amounts, and nothing stronger than beer or wine, and NEVER when he is in cycle.) I think we also tried extra-strength excedrin at onset of a CH--or some other OTC headache pill with a lot of caffeine. But without the taurine component, it didn't do much, and maybe it just couldn't start working fast enough. The liquid taurine/caffeine seems to be the one-two punch for us.

It will take some time to figure this out for yourselves because CH is so different for everyone. Early on, it helped me to keep a headache diary, noting dates, times, Kip rating, and what we did to treat. Stay strong, read as much as you can, post often, and know everyone here wishes the best for you.

miss k

Title: Re: hello new person here needing an ear please
Post by Dado9478 on Feb 10^th, 2008, 1:59am

Hello All... HELP! Sorry for this LONG post! Bear with me...

I am new to this site. As I read more and more about CH, it sounds alot like me... what do you think???

I have had these headaches for 10 years now. I did have some left sided headaches when I was 16, that were not as intense as these are, then I didnt get anything for 3 years later.

Now for 10 years, since 98, I am getting these left sided headached every year or 2 times a year. They last for 2 1/2 to 3 months. Every day.

It starts out as I hear my heart beat in my left ear, then I start to get "twinges" or sharp pains like a burning knife throughout my left side behind my eye. It peaks at about 10 to 15 minutes. My head feels like it is on fire, the sharp stabbing pains are so bad at times, it moves my whole body, (like a reflex) If you cut your arm you would jerk.... that is what my whole body does. My eye waters, and feels like it is going to pop out with all the pressure. My jaw just aches, like I dont want to even talk since it feels like it will fall off. Or like my teeth are coming out all at once. It feels like all of the vessels on my left side are spasmicing, and my scull is being dug out with a spoon. The pain radiates to the back of my head down my neck at times. With my "Bad, Bad" ones, my arms feel like they go cold.
I do not get nauseated, unless I take alot of meds. Light does not really bother me... I usually perfer, not to be bothered, and go in my room. Sound just bothers me I think because I am in so much pain. It worsens when I lay down. I have to sit forward, or stand...rock. Pray to GOD! I feel like I am going insain. I push against my forhead, and it seems to help for a second or two... but then the sharp knifes stabbing pain shoots through my head again. My head feels heavy like I need to hold it up. Sometimes I feel like I dont want to scream since it makes my head or ear hurt more. Although I do want to just pull out my hair....

I have been seen by many regular doc's. Neurology, ENT, Allergists, Chiropractors, Physical Therapy, Ect.....

I have NO diagnosis yet. One MD said it sounded like CPH. Since I am a female.... this is what I have on CPH:

(((((Chronic paroxysmal hemicrania (CPH) is a disorder with attacks with the same characteristics of pain, associated symptoms and signs as cluster headache, but the attacks are much shorter and more frequent. Pain is side-locked, as in cluster headache, but occurs mostly in females, unlike cluster headache. The headaches are absolutely responsive to indomethacin.
Most attacks last 2 to 20 minutes, never more than 45 minutes, while frequency may be as high as 30 attacks in 24 hours. There is at least one autonomic sign or symptom on the painful side, including conjunctival injection, lacrimation or nasal congestion. Long lasting remission (clustering) is not seen, but the frequency, duration and severity of attacks are variable. Migraine features such as nausea/vomiting may rarely accompany attacks. The major diagnostic criterion is absolute effectiveness of indomethacin. The continuous, chronic stage may be preceded by an episodic stage similar to that seen in cluster headache.))))))))

I am taking Indomethacin right now... and it doesnt take them away all together. Plus the MD doesnt want me to take more than 200 mg in 24 hours......... I have been taking 300 to 400, and I still get the headaches.
So right now I dont really know if the meds work or if the attack is just ending. Since the meds take about 1 to 1 1/2 hours to end. I was taking Verapamil also, but it did not prevent them since I was not taking them everyday in remission. I dont know if like after 9 months I should just start taking them or??? The neurologist said I should take 120 BID, but when my headaches started on the 30th of Jan, I started out on 120 BID, then increased myself to 180 BID, then 180 TID... nothing was taking them away. At the same time, taking the indomethacin high doses. STILL getting them.

I just was reading on this site about the O2... so tonight I was just having the "Phantoms" like the twinges every once and a while and the heart beat in my ear... It worked. It did take it away in about 15 minutes. Then when I went off of it in 15 minutes the "phantoms" came back. Then I did it again, it took it away again after 15 minutes... I stayed on in a little longer this time. Then it took a while for them to come back.

I work NOC shift at a Hospital... So at least I have access to it... while im here...

When I seem to get them the worse is about 9 am... I get done with work at 630, in bed usually by 7 to 730.... then it wakes me up at 9 to 930. Full blown headache! then they usually last until the afternoon. Just when I think they are getting better........ Another one starts!

Some times I only get the one, for about 1 and 1/2 hours, but then get another attack later in the day or evening when I am going to work.

I do not want to loose my job, but after 4 days with hardly NO sleep, I feel like I am not safe, being that I am a nurse.

I am a mother or 3 girls, had them without pain meds.... and yes I would definutly pic child birth.... then a cycle of these headaches! I told my mother.... yeah labor is hard, but it lasts 1 day.....verse 3 months or headaches.... plus you get a baby out of the deal!

There are so many times that I feel like I am losing control.... going insain... I pray to GOD, to stop this suffering... This is taking a toll on my family, my other half seems to get mad... like there is nothing he can do for me.... and no one else is.... so he gets flusterated. He hates to see me suffering with this...

I feel like such a bad mom. I work NOC shifts, so the girls are usually seeing me go through some of these, since they are up during the day... when it is my cycle to sleep. I dont know what to say to them. It just scares them.

My headaches have started at all different times of the year.... spring, summer, winter and fall! (just like the song) sometimes they seem to last longer than others, and some times they are much more severe.

Thank you in advance for reading this... and telling my your input of what you think.

CH or CPH or a mystery???

Title: Re: hello new person here needing an ear please
Post by Dado9478 on Feb 10^th, 2008, 2:01am

Title: Re: hello new person here needing an ear please
Post by Dado9478 on Feb 10^th, 2008, 2:03am

Sorry I must have double clicked it......

Now the huge novel came through twice....

Sorry about that!

Title: Re: hello new person here needing an ear please
Post by MR_FLOOR on Feb 10^th, 2008, 2:44am

Don't give up on the verap. 240 is kind of a low dose if it don't work talk to your doc about uping the dose. My magic # is 480 it does wonders for me , and for an abortive Imitrex is like a wonder drug for me.

Whatever it is that finally works for you just don't give up chances are you will find a combination that works sometimes it takes a while . Be patient.

Dave

Title: Re: hello new person here needing an ear please
Post by Dado9478 on Feb 10^th, 2008, 3:03am

thanks dave....

I got up to 180 three times a day....

still got the headaches.

do you think that dose is ok.....

im worried it is tooo much....

i could go back down to 120 three times a day...

Title: Re: hello new person here needing an ear please
Post by deltadarlin on Feb 15^th, 2008, 9:01am

Dado9478,
You might get more/better responses if you started a separate thread of your own. I just read this post and I got confused ;;D (not that it is difficult to do).

What does your treating physician say about the possibility of you having cluster headaches?

*I* don't have ch, husband does.

Carolyn

Title: Re: hello new person here needing an ear please
Post by coach_bill on Feb 22^nd, 2008, 7:44pm

hello, had cluster since my 20s ussally they last about 6-8 weeks right near the time we change our clocks back. im currently just coming to the end of a pretty nasty cycle (i hope) pain free over a month now. sounds like you got clusters. talk to the doc about giving you a predgnzone taper 80mg for 5days it should stop your headaches, the 02 is a very good place to when the headaches come. also talk about IMITREX. it has save me from many headaches its the only thing that works because mine come on so fast no pill can stop it. also i now take melatonin at night, sleep like a baby, and it will help with the "night hits ". it sounds like the doc is treating you for CHD. but its not stopping the headaches. now try to stop the cluster, what do you got to lose?? good luck, coach bill

Title: Re: hello new person here needing an ear please
Post by scarlet52698 on Feb 26^th, 2008, 12:08am

Hi Doddy! My Dave (DH) was just diagnosed by an ER doctor a few weeks ago and this is our first go with CH. He has been a migraine sufferer since Age 6 and now this has developed.

Just wanted to say hello and these guys have been an awesome support and have shared some great info on CH.