Sorry for the upcoming rant, just feeling very angry and need to vent - the other half is useless when it comes to this :-(

After having daily attacks until 19th August, then 6 days with not even a grumble, I had the worst attack so far on 23 August. It started bang on 11pm,  The other half walked into the bathroom and found me sitting under the shower (running full on at hottest setting), smacking my head against the tiles. Scared the crap out of him. I took the imigran injection as soon as the pain started, had no effect for over an hour.

After that one, no sign of a headache, no grumbles... Nothing. Until last night (Sunday). Started at midnight, lasted for just over an hour after taking the imigran.

Tonight... Was on my way to a job (I'm a taxi driver)... It hit bang on 9.30pm just as I'm pulling up to my pick up. Had to call the office and get them to give the job to someone else. Full on hit right from the start, around a 7/8. Drove back to the office, did my injection and called te other half to come and pick me up. Got home and burst into a big crying/ screaming fit. Phoned the after hours surgery as I was at my wits end and didn't know what else to do. Luckily the out of hours surgery isright opposite my house so I went straight over and was sent in to see the doc. Who was absolutely useless and tried telling me it was either a tooth infection, and then after looking in my ear, told me it was inflamed and therefore an ear infection. I tried explaining the CH thing to him and atleast he was honest and told me he didn't know anything about them. The only thing he could suggest was an elephants dose of tramadol (yeah, like I needed to add a needle unthaw arse to the headache!!). I let Hindi the tramadol jab knowing that whilst it wouldn't get rid of the headache, it'd make me dozy enough to get some rest

I'm mega pissed off with it now. I thought that the attack on the 23 August was the end of the cycle. Now it looks like it's back to a daily occurrence. I have my neurologist appointment tomorrow (well, today now) and I'm really going to push for more effective treatment. At the moment I'm just on 75mg of amitriptyline and 10mg of zolpidem at night, plus the imigran injections as and when needed

Again... Sorry for the rant, just needed to get it off my chest to people who understand

Push for a preventative such as Verapamil or Lithium those seem to be the best as preventatives go.  Also get O2 for an abortive it may/will do better than Iimgran for you!

Good Luck and make sure to print out the O2 page and take it to your Neurology visit!

Not stupid.....we CH'ers tend to be hopeless optimistics! This attack is the last one of the cycle. This cycle is the last cycle. [smiley=hug.gif]

Clearly your current regimen is not enough. As Ginger suggested, do look into adding a prevent, such as lithium, verapamil or topomax. And oxygen.....32 years of CH and it's all but eliminated my imitrex useage. Hang in there, they do end.

Joe

I was originally given nortripylene (closely related to amitriptyline as Nortriptyline is the active metabolite of amitriptyline that is demethylated in the liver) as a preventitive, however I've recently changed to verapamil. The difference between the two is simply amazing with the nortripylene preventing significantly more of the CHs than the nortripyline did.

However the beast seems to work differently on all of us, so get this sorted out by a competent CH experienced neurologist.

Hi gus, thanks for your answers

I took the list of suggested preventatives to my doc when I saw him a few weeks ago but he admitted he didn't know much about CH and was reluctant to try the verapamil and lithium. He wanted me to carry on with the amitriptyline and imigran until I saw the neurologist. Also, thanks to the stupid local regs from our health system, he can't prescribe O2, only the neuro can

Got my appointment in just over an hour and in a way I'm glad that I look as bad as I feel. Got virtually no sleep last night thanks to the idiot out of hours doc giving me the tramadol... Can't mix it with amitrityline and zolpidem so I didn't take them. My eyes are bloodshot (I look like I've been on the booze all week lol!) and I feel like a zombie. The last time I forgot to take my amitrityline I had mega withdrawal symptoms so the minute I'm done with the neuro I'm going to come home and take them (day off today I think!)

Anyway, will let you know what happens

P.S... If I disappear and don't come back for a few years, chances are that it's because I *will* have reacted badly to either the other half telling me to go to bed mid-attack or someone else telling me that "it can't be that bad" and suggesting a good lie down in a dark room. Aaargh!!

Quote:

P.S... If I disappear and don't come back for a few years, chances are that it's because I *will* have reacted badly to either the other half telling me to go to bed mid-attack or someone else telling me that "it can't be that bad" and suggesting a good lie down in a dark room. Aaargh!!

Ohh, don't do that! Yes, the attacks are frustrating, and frustration is compounded by medicos who admit they know nothing about this disease but won't be educated. Still, you haven't said you have tried all of the possible interventions: melatonin, kudzu, welder's O2 if you can't get a Rx, Red bull or some other energy drink, or even clusterbusters. There are no guarantees but many of us have found something in this list to work. Keep those irons in the fire; there is always hope. Prayers going with you for a good neuro visit! Blessings. lance

Resist the urge to treat the doc to the iron fist of death! ;D  (it's just a head ache for heavens sake!! ::))

Hoping you make some headway at this visit. Let us know how you make out.

Joe

Iam a night hitter, sounds like you are too. The melatonin 10mg 1 hour before bed worked awsome for me.The Red Bull drink at the onset,well I thought these people were nuts, but it works.

Had my appointment today and am even more confused than I was before. The neuro had a letter from my doc telling him he thought it was CH... neuro said it definitely isn't and diagnosed Chronic Paroxysmal Hemicrania with trigeminal neuralgia. Have googled this to death but it seems wert site I go on is just a copy of the same article

It looks like the symptoms are pretty much the same pain wise, but as far as I can see the attacks don't last anywhere near as long as mine do. Unless what I thought was a bad 3 hour attack is actually several attacks one after the other

Looks like I've got a lot more reading to do. He has told me to stop taking the amitrityline and has put me on indomethacin and pantoprazole and I've got to go back in two weeks for a follow up to see how the new meds work.

Had a really bad day after the appointment, the other half really doesn't understand how I feel and can't seem to take in the fact that I feel like crap. I barely slept last night as I was stressing hugely about today's appointment and wasn't impressed that I fell asleep this afternoon when I was meant to have been cleaning. Yes, I fell asleep on purpose. Idiot! Ended up having a huge argument and I put my foot through the bin. Which was full at the time. I just got so angry that he's still got the "it's only a headache and everyone gets them" attitude and telling him that during last nights attack I actually thought I was going to die didn't make a blind bit of difference.

Anyway... Will see what happens in the next couple of weeks I guess

Well if it is CPH my understanding is the indomethacin will stop it short. Hoping that is the case and you get some pain free time soon.

Joe

What Joe said. And I don't want to sound like a broken record, but a lot of the diagnostic process for CHs is whether or not it responds in some way to a treatment. What works for CHs won't (generally) work for another disease. But, we are finding what works for clusters. Try the OTC stuff we've mentioned if the pain persisits. Especially the O2. Take the meds, but go on a safari armed with weapons that are effective on the beast. If they work, great! IF they don't, you're no worse off. Blessings. lance

The confusion returns. After my last neuro appointment, he told me it wasn't CH but CPH, have been taking indometacin for the last two weeks. Started on 50mg a day for the first week, then 100mg a day last week, and was due to start 150mg today.

Saw the neuro again today and as the indometacin has had no effect whatsoever, he's decided it *is* CH and has started me on Verapamil. I'm on 80mg a day for the next week, then 160 next week and then 240 the week after. I've got to see him again in two weeks, so will be on the last day of 160.

It's so bloody frustrating being told something one week, then being told it's something else a couple of weeks later and then something else again

He asked if there was anything that gives me relief during an attack (the imigran was great to start with but now takes well over an hour to take effect), and he was quite surprised when I said that extreme heat seems to help. I always find that the attacks get worse when it's cold, and heat seems to help a bit. It doesn't get rid of it but it helps for a while (best way I've found is to stand under the shower, hottest setting with the jets directly on my face - not very practical on a day to day basis though).

Anyway... Still getting the attacks. It seems to have changed a bit in the last week though - when I get one at night it happens between 9.30 and midnight and always on the left, but for the last week or so, I've been getting them at around midday (my normal wake up time),  and on the right hand side. The pain seems more focused right behind my eye/ by my ear with twinges in my jaw, than when it hits on the left, when it's the whole side from my left temple, eye, ear, nose, cheek and down to my jaw.

So... Will see what happens in the next couple of weeks. Hopefully I'll have something a bit more positive to tell the neuro, am well fed up with saying "no improvement"...

This seems to have my cycle under control at this
point.Started CH on 9/16.Started meds on 9/22.
verapamil 480 mg daily
neurontin 900 mg daily
prednisone 80 mg tapering down to 10 mg in two day increments.
vicks varorub on nose all day.
oxygen
TRY THE VICKS IT IS AMAZING

Jen,
I was wondering; did you really think you were going to die? Or were you just explaining the level of pain? I've wondered why I don't feel that way.  I assume that since there is no shock involved, is why  I've never fealt like I was going to die. No feelings of dread or doom etc.  Just pure, crystal clear, unadulterated pain.  Even before meds., when they were several hours long.
I've never heard anyone say they fealt that way.
There are few things as simple and yet so unique. Pain at it's finest moment.

When my body is cold, heat helps. When I am warm, cold helps. For heat a wet washclothe heated in the microwave might be easier and more practical than the shower. Frozen corn for cold. On special occasions you might even try a combination. The hot washclothe on the temple (and over the eye to the nose for me) and cold on the neck. It seems to confuse the beast at times.
I jumped to the right for the first time in years last night. It sucked! I realized that I must know where every nerve ending on the left side is. I couldn't find a sweet spot for love nor money on the right.  LOL  It is amazing how well we know our heads.

jimyhertz wrote on Sep 29^th, 2010 at 12:03pm:

Jen, I was wondering; did you really think you were going to die? .... I've never heard anyone say they fealt that way.

I have no doubt in my mind that Jen truly felt she was going to die.  While I've not experience CH myself, I've watched my husband suffer for 20 yrs.  While some of his cycles are still out of control, when he first began this journey before official diagnosis (like Jen) watching in horror my big strong husband with a pain level of Hercules on his knees, wimpering, crying, beating his head to stop the pain and ready to put a gun to head, yes, we both thought he was dying and it was scary as hell.  We've lost 3 friends to brain aneurysms, we don't know what their last moments felt like.  Unless you're in somebody's head, none of us know exactly how each person experiences or reacts to pain.  While the kip scale is an excellent and pretty specific guide, "feelings" (pain, fear, sadness) are heavily weighed in perception and what is actually felt in our heads can vary widely from person to person.  My husband and I could both experience the same burn, he may be able to tolerate it well, while I could be in severe pain.  Everybody's body chemistry is different and perceives, reacts, and tolerates everything differently from pain, anxiety, stress, fear, sadness...that's what makes us all unique.  I've seen a kip 10 more than once and know the pain.  All of the "perception" in the world doesn't mean sh*t when all you want is the pain to end. (Jen, I feel bad for you that your "other half" doesn't get it.  Get him on this web-site and I'll give him a good talkin' to)  ;)

If you've never experienced the panic and fear of feeling like you're dying, you are one lucky person and I hope you never do.  I wouldn't wish that experience on anybody. 

Try gulping a Red Bull when you fell a hit coming on.Give the Melatonin a try at night stopped my wake up call at 10:30 pm in its tracks.Show your loved ones this site,my fiance supported me but didn't really know what I was going thru until I joined this family and she read thru some stuff here.We know your pain (at least have a good idea) vent anytime we are here for you.

His Wife,
I hope I didn't say anything to offend you. I get these headaches.
Associated with many physical maladies are certain feelings. A sense of dread or overwhelming fear or doom are associated with shock for instance. The pain is astronomical when it comes to CH. It will put the biggest baddest man (or woman) in their place. I know people wonder why it does not kill them, me included. That sense of fear or dying is not generally associated with it though. That is why I asked. I apologize if I sounded a bit cavaleir. My sense of humor (which may be questionable) helps keep me going sometimes. My question is legitimate. I was asking in regard to CH only, to clarify.

Never thought I was going to die,BUT during a K9/10 I thought I would be better off. Everybody handles pain different a K5 for one may be a K9. for another. Important thing Jen is were here for you to talk to. :)

Jimy,

Sorry....no you didn't offend me at all.  I guess I was just trying to say I understand her fear (I tend to rant sometimes) and I feel bad she doesn't seem to have the support she needs.  I'm REALLY glad you haven't experienced the panic of "feeling like you're dying" and I in no way want to diminish the pain you must be feeling when being hit.  Just dealing with that intolerable pain is a monumental feat in itself.  Once educated, we knew that the attacks themselves wouldn't kill him and that was some comfort.  Not knowing that at the time was very scary.

I wish you joy, happiness, and a life free of pain, my friend.

I think it's a legitimate question and thread response. When the KIP was highest and most frequent, I did worry about a vascular blowout. So I asked my neuro and she ran some tests. All OK. Hard to believe though given how high my BP seems to rise during a hit. AND, I know there were many times when my prayers were: take these away, or take me. That's how bad it hurts and that's when depression begins to take over. So I understand the question, and I am sure many of you out there do, too. Blessings. lance

Thank you all. As you have said, and I agree, I wondered if I was going to die. However it is not a "symptom" of CH. Heart attack victims often have a feeling of "impending doom" because they are dying. It is a symptom of the condition they are in. We wonder and question and seek medical attention, but that deep rooted symptom or feeling of life coming to an end is not a normal or usual symptom of CH. Thats the difference that I was trying to explain, and ask Jen if she had.
Jen, I have printed the Wikipedia explanation on a few occasions. It is written by Dr. Goadsby, I believe one of the leading researchers on CH. The first page is short, to the point and explains the pain you are having. It might give your hubby some insight.

We need more meet and greets. This would be so much easier in person. LOL

So true. Once you meet someone in person, you know their personality, their posts make SO much more sense, and you realize how foolish it is to ever again take one of their posts negatively! ;)

Joe

Affirmative.

Chargers    hehehehehehehehehe  ::)

jimyhertz wrote on Sep 30^th, 2010 at 12:43pm:

Affirmative. Chargers    hehehehehehehehehe  ::)

Kay now that's just mean!!!! :P

Joe ;)

@jimyhertz - I was planning to print the wikipedia explanation to try explain to my family too. It's a really good idea as most think CH is nothing to worry about.

Jen, have you anymore updates? I seem to be a little way behind you as I'm waiting to see a neurologist and can't get anymore meds till then but i'm hoping for verapamil. How are you getting on with it? It's frustrating being presribed something then waiting for 2 weeks for it to work or reach full dose only for it to be changed and starting over. Really tiring!  >:( Hope your coping ok.

Ian

Jimmy... What I meant by the feeling like I was going to die... Not easy to explain, but I'd just got to the stage where the pain was so bad that I thought there was no way I'd come out of it alive. Definitely the worst hit I've ever had, couldn't talk, couldn't breathe properly, couldn't function... Just the worst pain ever.

The verapamil... Started taking it on Wednesday, only on 80mg this week. Not made much of a difference so far, still getting alot of shadows. Haven't had a full blown hit since last Friday but enough grumbles to wind me up. Dosage goes up to 160 from Tuesday so will see what happens.

Sorry to hear that Jen. Most of the people here understand though. The lack of sleep and/or dread of waking up is what gets to me after a while. On the bright side, midnight is better than 2AM LOL.
I hope things get better and the Verapamil works for you. PF Days and nights, stay happy.
Jimmy

Jersey Jen wrote on Oct 1^st, 2010 at 4:49pm:

Jimmy... What I meant by the feeling like I was going to die... Not easy to explain, but I'd just got to the stage where the pain was so bad that I thought there was no way I'd come out of it alive. Definitely the worst hit I've ever had, couldn't talk, couldn't breathe properly, couldn't function... Just the worst pain ever. The verapamil... Started taking it on Wednesday, only on 80mg this week. Not made much of a difference so far, still getting alot of shadows. Haven't had a full blown hit since last Friday but enough grumbles to wind me up. Dosage goes up to 160 from Tuesday so will see what happens.

As I've said previously, we all do know what you're feeling. This may actually be the only place on earth where we know what you're feeling, and having such a community helps a bit. Your verapamil dose is a little low it seems. How's it working for you now? lance

wimsey1 wrote on Oct 4^th, 2010 at 7:16am:

Jersey Jen wrote on Oct 1st, 2010 at 4:49pm: Jimmy... What I meant by the feeling like I was going to die... Not easy to explain, but I'd just got to the stage where the pain was so bad that I thought there was no way I'd come out of it alive. Definitely the worst hit I've ever had, couldn't talk, couldn't breathe properly, couldn't function... Just the worst pain ever. The verapamil... Started taking it on Wednesday, only on 80mg this week. Not made much of a difference so far, still getting alot of shadows. Haven't had a full blown hit since last Friday but enough grumbles to wind me up. Dosage goes up to 160 from Tuesday so will see what happens. As I've said previously, we all do know what you're feeling. This may actually be the only place on earth where we know what you're feeling, and having such a community helps a bit. Your verapamil dose is a little low it seems. How's it working for you now? lance

If this weekends anything to go by... They're having very little effect. I haven't been getting any shadows, but Saturday night I had a full blown hit. It came on around 10pm, lasted until about 2am and had a residual headache until 11am. Got woken up at 3.45 this morning with another one, I'd been in bed for about an hour and a half. Ended up on the sofa for the rest of the night so that I didn't disturb the other half. Another one hit at 3.40 this afternoon at work, did my imigran but it didn't even touch it, wore off by about 7pm. And then 9.40 tonight another hit, and nearly 4 hours later I'm still in agony. I did another imigran shot as soon as it hit but again it hasn't done anything. I ended up sitting in the shower with it on full power and heat for over an hour but not getting any relief.

Don't know how much more I can take, it's driving me crazy. I've got the neurologist again next Tuesday so just gonna have to grin and bear it until then.

Jen,

For what it is worth - I tried Verapamil my first cycle (20 or so odd years ago) and it didn't work. Perhaps. This cycle my new neuro put me on 480 mg, then ramped up to 960 mg per day before they were under control. He was good - always checked my heart first. But I kept getting slammed every few days until I hit the 960 mark. I don't think that when they tried the first cycle, they raised the dosage that high.

Everyone is the different but you may want to talk to your doc about what the right dosage is for you....

for what its worth.

As for the fear of dying, there have been a few times that I was convinced my arteries had ruptured, that parts of my head had exploded and that perhaps I wasn't dying but oh so close to it. Had to ask a neuro many times for reassurance that this doesn't happen in CH.

Quote:

Don't know how much more I can take, it's driving me crazy.

Listen to me, Jen, and listen up good: you can take all you need to take...this thing won't beat you. Repeat after me: you will overcome. Get mad; get determined; live in between as fully as you can...but don't give in to it. Got that? If you feel you need to explore more deeply you can pm me and I will get back to you. I've been where you are, just a few short months ago. It's a terrible place, I know. There's so much you can't do, but you must focus on what you can do. OK? Prayers your way. lance

Thanks Lance. Sorry about the post last night, was just mega frustrated after having a horrible day. Doesn't help when the other half told me to go to bed and rest because my "constant moaning and groaning" was getting on his nerves. I find that my tolerance levels and mood go from rational to completely irrational very quickly, and I ended up having a hussy fit telling him that I wished he could experience the pain just once so that maybe he'd understand. He came back with "when I don't feel well I always go to bed and rest and it makes me feel better". I did tell him that he's read the info on this site more than once but it went over his head, I lost the plot and had to take the dog for a walk just to get away from him for an hour. Was already hacked off by the total lack of energy, had so much to do yesterday, both at work and at home but ended up having to leave work after an hour and then did nothing for the rest of the day. I'm not in the office today so going to try and catch up with what I should have done yesterday. Were also redecorating at the moment so got loads to keep me busy.

Getting alot of shadows today but I'm hoping now that I've started the double dose of verapamil (was on 80mg a day, started 160mg today), I might get a bit if improvement. My neuro did say that he wanted me to start low up the dosage to try and find the correct one for me.

Jen, I may have missed it, but are you using/have you tried/ energy drinks? Red Bull, Monster, etc? You do need to be judicious when on verapamil, but you can still use them. Sorry if this has been covered already. Blessings. lance

Hi Lance

Yeah I've tried red bull, didn't find it helped but still give it a go when I'm at home. Have to drink it warm too, drinking it cold made it worse (well, anything cold).

Had a lot of shadows yesterday but no full blown hits thankfully. Getting a few grumbles today but nothing major.

Really really grateful for you guys and this website, it's brilliant knowing that there is somewhere where the answer isn't going to be "it's only a headache..." etc. Makes the bad days a bit better which can only be a good thing!