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Topic: Checking in (Read 291 times) |
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Topical
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Checking in
« on: Jul 2nd, 2005, 11:26pm » |
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Hi all, first thing I want to say is thank you to DJ for this site. I have been a lurker off and on for many years.
Here's a rundown on me.
I am 41 years of age, male and live in California. I smoke and drink a lot of coffee. I don't drink any alcohol as it interacts with some med I am on. ....I do like the herb. I prefer staying up late into the night and sleeping in. I am not much of a "morning person".
I recently lost my job due to oursourcing to India. The insurance stopped so I had them pick up the O2, my abortive I haven't needed it in almost a year. Two weeks after this the CH cycle started again. DOH! Kip level is not bad this time yet, "only" an 8 once last night. I am going to have to check out the cost and get it as it worked very well last year.
I believe I had CH first get me when I was around 26. I had always suffered from headaches but nothing like these things. I remember hitting myself on the head as hard as I could with the palm of my hand when they hit. Screaming out loud the whole bit. Two years later I was diagnosed with epilepsy after a seizure. The lights went out and I came to in quite a bit of confusion. That's always bothered me as head trauma can bring on epilepsy. Did my head banging have anything to do with epilepsy? I'll never know for sure but probably not. Needless to say, no more head banging for me.
The CH was in remission for quite awhile while I was being treated for my epilepsy. At age 30, the next cycle hit and I mentiioned it out of passing to my neuro. More questions followed and then I was diagnosed as having CH.
I am a lefty and it hits me on the left side. One inch behind my eye and one inch up from there. My left eye tears up, my nose stops up where I want to blow it. I have about 5 minutes abort the attack. The episodes last around 30-45 minutes tops. I think one lasted an hour before I could shake it.
I seem to get the CH phase about once a year which lasts for 2-3 months. The most I have had was 3 attacks in one day. I think it was one abort and two big bad ones. With the last few years it has been one to two attacks every other day. Just like clockwork. The first attack hits at 8-9PM and the second around 2-4AM an hour or two after sleep. I have never had an attack during the day(hope I am not jinxing myself saying that).
When they hit....
It depends on if I am sleeping or not. If I am asleep, I will get out of bed and sit in a chair and assume an airline crash position rocking back and forth counting the minutes and playing a head game trying to calm down myself from the pain. I feel like screaming but it being late at night and living in a condo I have learned not to let loose. I will pace around sometimes and act well you know if you are a sufferer. The word psycho comes to mind.
Being that I don't hit myself on my head any longer, I usually end up retiring to my bedroom and undress. The clothes feel too constricting. The cooler air seems to slightly calm me down. I lay on my right side and place my left arm over my head where the pain is. I will take my right arm and swing it over to my back moving it up and down from my torso to my shoulder. I call this the pretzel position.
The idea here is to try and get my mind off of the pain. My ex-GF would try and help by giving me a massage but I just wanted to be left alone in my misery. I will thrash my legs around rapidly as if I am running on my side when the pain level goes too high kicking the bed. The self massaging on my back does no good what-so-ever at this point and I find myself going out of control wanting to scream and hit myself. Instead, I will dig my toenails into the soles of my feet sometimes as a pain distraction. Eventually, it lets up and the massaging seems to help me shake it off. Back into slumber I go again or if it was an attack earlier in the night, I will get up and walk very slowly around not wanting anything to bring it back.
Here's a rundown on the meds I take or have taken for CH...there's been so many that I am probably going to miss some.
Tylenol, aspirin - This is what I took at first when I was undiagnosed. Nothing.
Lithium-no thank you. Too many side effects on my head.
Lidocaine nasal drip- No reaction.
Ergotamine or Cafergot - It takes too long to enter my system so it isn't too effective. Was the attack ending or was it the Cafergot entering my system? I still use it on occasion if I feel hopeless.
Imitrix (nasal) - nothing.
Maxalt - nothing.
What does work for me...
Verapamil - after two weeks or so it will reduce the number of attacks to one or two a week. (40mg/2 a day.)
O2 - Love it! This is a great abortive and really helped me out last year. It will take at most 15 minutes, usually less. As soon as I feel "the shadow" coming on I will start taking it. The pain never gets beyond Kip5 except one time.
The verapamil dose is light but I seem to have a very low threshold to medacine. I take Dilantin for my epilepsy at levels typically used by a 15 year old.
For my normal headaches which I suffer from more than other people I use Advil gelcaps. They work astonishingly fast.
Well, that's a run down on me. It is helpful to my psyche knowing I am not alone, still I am very sorry that others have experienced the pain and wish no one would have this condition. Hopefully someday that will be the case. Take care.
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| « Last Edit: Jul 2nd, 2005, 11:28pm by Topical » |
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AussieBrian
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Re: Checking in
« Reply #1 on: Jul 2nd, 2005, 11:50pm » |
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G'day Topical, and no - you are not alone in this.
Not any more, at least.
Welcome aboard,
Brian.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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BobG
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Re: Checking in
« Reply #2 on: Jul 2nd, 2005, 11:52pm » |
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Hey Topical,
Welcome to the board but sorry you had a reason to come looking for it.
Have you tried an ice pack on the face? Or maybe a heat pack?
There is a discussion over in the meds section about kudzu. Please take a look at it. But be careful. I have no idea if kudzu and Dilantin are compatable.
Some people use melatonin before bed time.
Some of us sleep in a sitting or headup position. Have you tried that?
And there is the clusterbuster treatment.......read read read.
And keep in touch here.
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Stay stressed. Never relax. Never sleep. Ever.
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Topical
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Posts: 256
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Re: Checking in
« Reply #3 on: Jul 3rd, 2005, 5:57am » |
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Hey Brian, glad to meet you I wish it was under better circumstances.
Hi BobG, kudzu? That's a new one on me. I will check out it out, thanks.
Ya, I am very paranoid about drug interactions. The less drugs the better. Psychotropic cures like mushrooms are out of the question for me. I really fear any interaction with my epilepsy, however remote. I'm lucky that it totally under control. Like CH, it can change over time. I worry about messing up the mix. I have tried shrooms in my teens before epilepsy and CH. If it works for people great, but personally I just can't afford to risk it. Gran mal seizures scare the hell out of me.
O2 is great, I think as long as I have that I am good. The attacks are only at night. Sending it back was some very bad timing on my part. I have a script I have been holding onto for some more just in case. Now if only I can find it. grrr.
My old neuro was great at trying things with me. I am sorry she moved out of the area. I read about O2 here and said lets try it. I was impressed that it wasn't a drug and would have no interactions or lasting effects. After taking it, I impressed on her that was the first abortive she should prescribe to people with CH. I don't understand why docs try the other abortives first with people.
When they sent out the O2 last year, I had asked for a rebreather but they didn't send one. Instead, I had the nasal type of inflow. I would turn it on and get into a rhythmic slow deep inhale through my nose and exhale through my mouth. The cool flow of the O2 into my nose was also a great distraction. It would dry out the membranes which was the only bad part.
The verapamil is ok but takes a couple weeks to make any difference as the preventative.
I haven't tried melatonin but have read about it, again the less meds the better. I think about tanning when I hear it mentioned. Am I mixing up my chemicals?
I have a bad back with some crushed/fused vertabrae so I think sleeping sitting up is not going to work too well for me. That is an interesting thing to know. Time to look around for a better chair!
CH is only annoying right now- like last night, I was asleep for an hour when the first one hit me. That turned out to be not too bad, maybe a Kip5. I got up for a short while then did "the pretzel" manuever which brought me from pain to sleep. A second one hit about 4 hours later which went up to an 8.
The pattern seems to be changing around a bit and isn't as regular like the past.
I just got back from a cross-country trip by car a week ago. It really messed with my circadean rhythm. The last portion of the drive was across two time zones in one day. I went from waking up at 11am PST to waking up at 4PST on the road. Now I am back to waking at 10PST. My mind/body is a little confused and I'm waiting for the cluster to decide on its pattern. I have had back to back nights with smaller ones. I was worried about that 8 though...(fingers crossed I can find my O2 prescription).
I have tried hot/cold showers before with very limited success. Anything that will act as a distraction to the pain. When the 10 hits I will do a shower, hyperventilation, pacing, get up, lie down etc...almost anything. Finding a nerve center in my hand and pinching is another distraction tactic I have tried.
I used to scream out loud in pain but I had a neighbor who heard this and actually mocked my screaming during an attack. Nice guy. He's about as close to anyone I have wished this pain on. But I hope no one has to feel our pain. Since then, I have trained myself not to do some mild, muffled 'owwws'.
I saw a new neuro who was fresh out of college at UCSD. I hope he is like the others now being trained. I asked if this was in anyway psychosomatic. "No, it's very real", he replied. I think we have made it from being in the appendix in the textbook to being part of the course literature alongside migraines. I have no doubt that websites like this one are part of the reason why. It is horrific and at the same time fascinating how it manifests itself. I hope more docs will become interested in permanently ending this pain.
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pattik
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Re: Checking in
« Reply #4 on: Jul 3rd, 2005, 10:48am » |
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Hi Topical, Ditto to what Bob G said. I get my attacks in the same spot that you do, and I ususally do that "every-other-day" thing too. Ice packs can be helpful especially during the beginning of an attack, although some prefer heat. Try to continue getting the O2. In relative terms, its a lot less expensive than Imitrex and some other abortive meds. Keep researching this site. It has a wealth of information, and you can hopefully find what will help you the most for your situation. All the best.
Pat 
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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Topical
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Re: Checking in
« Reply #5 on: Jul 3rd, 2005, 8:10pm » |
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Hi Pattik, it's been a while since I used anything cold but I will give it another try, thanks. Time to do some shopping.
I have read stories about people having teeth pulled. Youch! It's weird how the focal point of pain can seem to move around. Sometimes the left side of my neck where the ligaments are feels like a culprit but the pain always goes back to the real source. It lets you know.
Getting these after a lapse is awful. Instant recognition. I read the other sufferers stories here and know it could be much, much worse. I don't know how I would handle that. My heart goes out to them.
I woke up with one today after about seven and a half hours sleep. Very odd as it was 11am. No real set pattern to this yet. I was very groggy and wasn't sure it was a CH or just a normal headache that happened to be in the area. The left eye teared up and nose went funky in few minutes. I had my answer.
I have to get a regular sleep cycle going. I hope that is the only one in store for me today. Maybe I got today's out of the way early. Now I am off to find that O2 script. I cleaned out my wallet and if I mistakenly threw it away then I'll have to call the doc. I remember a kip10's pain quite clearly. There is no way I want to get there. So far nothing over a kip8.
I think I know where I put that prescription...GOT IT! Dated 5/11/05 10 litres/min. Phew! Feeling happy now. Very happy. I thank my brain cells for their cooperation.
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Topical
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Re: Checking in
« Reply #6 on: Jul 3rd, 2005, 9:59pm » |
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It looks like melatonin is off the list for me. Thanks for the suggestion though. I have a great abortive in O2 but if there is a faster preventative than Verapamil I am all ears. Time to look more at Kudzu.
This must be why we didn't try it out.
"Melatonin use in some children with seizure disorders leads to increased seizure activity. Those with seizure disorders, both children and adults, should avoid melatonin supplements."
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pattik
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Re: Checking in
« Reply #7 on: Jul 3rd, 2005, 10:34pm » |
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on Jul 3rd, 2005, 9:59pm, Topical wrote:| It looks like melatonin is off the list for me. |
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What about Benedryl for helping you sleep? It's a pretty safe antihistamine, and it might work as a substitute for melatonin.
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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Topical
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Re: Checking in
« Reply #8 on: Jul 4th, 2005, 5:01am » |
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Thanks again Pattik. I will ask more about Benedryl. It should help me get back into a regular sleeping cycle. That would be great if it worked to stop the CH during the night.
I read about Kudzu. A huge thread and I read it all. Very interesting. I will wait until my Verapamil prescription is used up, purge my system and try it out. Verapamil works well once it kicks in, but the first couple of weeks before then are a drawback. It has helped me out for several years. Hopefully when I wean my system off of it this series of attacks will be over with. (No offense to the Kudzu clan.  )
Time to try and get some rest. Fingers crossed, only the one attack today. No shadows or headaches. Happy 4th of July. I think I will have to wait until Tuesday before I arrange for my O2.
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burnt-toast
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Re: Checking in
« Reply #9 on: Jul 4th, 2005, 9:20am » |
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Welcome from "Out of the Shadows" Topical.
Here's hoping you find some answers, support and the ulitmate CH'rs dream relief.
Tom
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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Topical
New Board Old Timer
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Re: Checking in
« Reply #10 on: Jul 5th, 2005, 6:05am » |
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Hi Tom, the ultimate would be great.
It's like being a prisoner crossing off the days and hours til we are let out of the jail cell. Only one very light shadow earlier tonight at 8. I am about 40 hours now PF. Time to hit the bed again. Hoping the cycle breaks up. There is always hope.
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