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CPH —I HATE IT!

So, its been awhile now since I finally discovered whats wrong with my head. I have noticed that it seems to be seasonal. for me anyway. These headaches, which I call thunder and lightning headaches, seem to be worse in the Fall and Winter than in Summer and Spring. Since I won’t be taking any medicine for it, I figure I will chart the changes inside my head so that maybe I can better understand them. Its as if something has taken over my head and it RULES!!! It seems to attack without warning, and continue attacking as long as it chooses to. There is nothing I can do to stop it. I have to let it run its course. On occasion, I do get a slight warning before a big one hits. Kind of like aftershocks, only, its before the big attack. Beforeshocks I guess I will call it. I get the beforeshocks ( they may be very mild to moderate) which last between 5 seconds to 1 minute, and I may get between 2 to 30 a day. Then the BIG ONE! The big one lasts anywhere from several minutes to 5 hours! There were a couple of times that they lingered on for several days after the worst of it was over. June of this year, I had a bad CPH headache that lasted 3 days.!!!My eyes were draining and my nose was running, and I just couldn’t think! It was awful!

There are other times that the beforeshocks will turn into several really bad little attacks that will increase in pain and last between 30 seconds to 2 minutes. They vary in pain and duration, and as usual come without warning. Each person that I meet seems to have a slightly different story than mine, yet the basic details are the same.

I get the shooting pain (lightning) through my head, my eye, my jaw, my ear, my shoulder, and my nose. Sometimes it feels as if something in my head is shooting a spear right through my eye. Other times There is a a pain like rolling thunder going through my head. Sometimes there might be the rolling thunder and then the lightning. There is never a system. Its always sporadic, and its never the same each time.

I have noticed, that not only do these attacks increase in the Fall and Winter, but they also increase when I do not get enough sleep, and when I eat poorly. I usually eat very healthy, but every now and then, I eat junk or sugar, and they seem to increase during those times.

I may not be able to eliminate These horrible CPH attacks, but at least I am figuring them out!

Posted by By: gina | 2007/11/07 | Blogroll - Regular News | Trackback | Comments [RSS 2.0]

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Melissa

Comment by Melissa | 2007/11/08 at 07:53:14

Hi Gina -
I found your post and was actually happy to find someone else who has CPH! Especially since there isn’t anyone who can really understand what it’s like! I was diagnosed about 2 1/2 years ago and took the Indomethacin (which gave me an ulcer). After that - they put me on some seizure medicine, which worked for a long time. Although now it’s starting to be less affective, so I am going to switch to a different seizure medicine. I’m not sure how you are doing it without medicine!! I don’t think I could! You must be very tough! (Although I do think that this thing toughens you up a bit!) I do think that when it’s colder out, I get more attacks as well. And I have to “track” my sleeping & eating patterns to see if that does play a roll! I didn’t even think of that! I think I will try to ONLY eat healthy for a while and see how that goes! Anyway - glad to know there are others out there!
~Melissa
beth winder

Comment by beth winder | 2008/04/07 at 13:03:36

I have suffered from head pain for 10 years but two years ago I was given a diagnosis of CPH. I was told that it was rare which not many cases in the UK.

I am currenty suffering from a sever attack of CPH and find it a comfort that there are people who understand whats happening and how I feel. I am currently taking Indomethacin and suffering the side effects of dizziness, sickness and tiredness.

I also feel very alone and that people are sick of me moaning about my headaches, which feel like I am being stabbed in the head. However after reading other peoples experiences I see that I am not suffering as much as others.

Does anyone feel that stress has an effect on CPH? Also does anyone suffer with cold sores when they are experiencing sever attacks?
suzie

Comment by suzie | 2008/05/14 at 06:59:12

Hi, I have just been reading your comments. 3 weeks ago my husband was diagnosed with Cluster Headaches, but after speaking to the helpline at OUCH UK, they think he has CPH. Having read loads of medical stuff on it, the headaches sound very similar, but with the severe attacks his arms flail and tremor uncontrollably, none of the literature mentions this, - do any of you have this sort of attack? ~We are currently waiting for a referall for Queens Square Hospital as it seems they know a bit more than most other neurologists about CH and CPH.

Look forward to hearing from any of you to see what you think.

Suzie
Louise Brown

Comment by Louise Brown | 2008/10/02 at 10:44:05

hello to all cph and ch sufferers
I was diagnosed 6 years ago at Nuffield hosp in Nottingham (I have been having these attacks for about 13 years now) I was diagnosed with cph with a cross over to cluster and I think I was just relieved that someone believed me as my local hopsital treated me as though I was a crazy woman that had mental issues and made up the pain. I was pushed from ENT (had sinus op) they then gave up and pushed me over to the dental department who said I had wonderful teeth, then back to ENT who said there was nothing more they could for me… It was only the fact that I was a dental nurse and my wonderful boss researched and sent me privately to nuffield hopsital… I had to try various medications (as some of you I would not have one day without pain) but then I had such a severe attack which left me unable to function as a normal human being, just putting one foot in front of the other would sent shock waves through my face and head… i was having up to 50 attacks of intermittent pain and facial/ eye drooping, i looked like a stroke victim… the medication that worked for me was called pizotifen, I was on this a number of months the only problem being i gained 2 stone in weght (it increases appetite). I withdrew from it when i felt much better and have been off it for some years now, still suffering pain but you learn to have high pain threshold when you are a cph sufferer.. sad news is i have had ongoing pain which is getting unbearable again so have just been prescribed same medication, so heres hoping i do not gain another 2 stone!!! but as you all know well in your worst state you beg for anything to take the pain away……

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[...] gina added an interesting post today on CPH ââ‚¬”I HATE IT!.Here’s a small reading:June of this year, I had a bad CPH headache that lasted 3 days.!!!My eyes were draining and my nose was running, and I just couldn’t think! It was awful! There are other times that the beforeshocks will turn into several really bad … [...]

CPH —I HATE IT!

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