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Topic: Question about Episodic to Chronic (Read 3834 times) |
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FramCire
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Re: Question about Episodic to Chronic
« Reply #25 on: Dec 29th, 2005, 5:17pm » |
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on Dec 29th, 2005, 3:42pm, E-Double wrote:Shadows are what we call lower level CH's that kinda creep. they linger. the feeling that "it's there" just waiting to attack.
kinda weird personifying the disorder huh but kinda fun |
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Ah, that makes sense. My normal headaches start out like that (that 5-10 minute warning period) before they move up in the kip scale. I have even had some HAs that stayed in that range on the kip scale. During the day, I have HAs that stay in that range on the Kip scale. Now I know how to describe them (if only I could have nighttime HAs like that). For a moment I thought that maybe I was missing a symptom of CH where I was suppossed to see shadows or something..... wishful thinking, of course.
I am taking 360 a day (3x120) of Veropomil (sp?). I told her most of the sites I read suggested 480 or more. She seems to be a little timid to go up on the dose at this point. I will discuss it with her again. I am at 100 on the Topamax (75 at night and 25 in the morning) . When my first episode ended I was taking 50 at night and 50 in the morning (I started at 25 and when up 25 per week) but my brain was toast (and I wasnt taking verapomil (I think i have spelled it 10 different ways, havent I)).
Time for some more advise. WHEN this episode goes away (boy has my tone changed from last night, huh), what should I do about my drug use (the ones I mentioned above). Should I maintain them, or taper off of them. For some reason, i thought they were used to abort an episode not prevent another. Of course, i still know very little (can't you tell).
By the way, just for those new to CH, may I suggest to find you triggers. Chocolate is one for me. If I eat chocolate (especially at night) I had better just inject the imitrex and put my mask on before the chocolate hits my stomach. Let me tell you, if I inject myself, you know it's bad...I HATE needles!
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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BobG
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Re: Question about Episodic to Chronic
« Reply #26 on: Dec 29th, 2005, 5:36pm » |
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Quote:| For some reason, i thought they were used to abort an episode not prevent another. |
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Verapamil, topomax, lithium and many others are preventatives. They are for long term use to keep the clusters away.
Triptans like Imitrex and maxalt are abortives. They are good for each attack and have no value for long term prevention.
I am not a doctor and this is only my opinion.........
When you are 110% sure your cluster is finished then start to taper off the meds. Slow taper. If, while on the taper, the attacks return you can start ramping back up.
Do Not go cold turkey when stopping the meds.
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Jonny
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Re: Question about Episodic to Chronic
« Reply #27 on: Dec 29th, 2005, 5:41pm » |
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on Dec 29th, 2005, 5:36pm, BobG wrote:| Do Not go cold turkey when stopping the meds. |
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This one sentence could keep you from death, always talk to your doc....ALWAYS!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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MJ
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Re: Question about Episodic to Chronic
« Reply #28 on: Dec 29th, 2005, 6:05pm » |
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I like this thread.
Proper questions = proper answers.
The wisdom of experience shines here. Its great and this is what the site is all about. Then I look at other threads, except for one, and the same is going on.
Fram glad to see you here. We all have our individual triggers as well. Chocolate is my one pleasure in a cycle.
Alcohol my biggest trigger.
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MJ
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BobG
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Re: Question about Episodic to Chronic
« Reply #29 on: Dec 29th, 2005, 6:28pm » |
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on Dec 29th, 2005, 6:05pm, MJ wrote:
Proper questions = proper answers.
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Yep. And that's the way it should be and I think the way DJ designed it. These sections at the top are for serious, truthful questions and answers. Save the jokes, happy, huggy-kissy face messages and fights down on the general section.
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FramCire
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Re: Question about Episodic to Chronic
« Reply #30 on: Dec 29th, 2005, 6:53pm » |
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on Dec 29th, 2005, 6:05pm, MJ wrote:
Fram glad to see you here. We all have our individual triggers as well. Chocolate is my one pleasure in a cycle.
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I guess I can't curse you out (for being able to eat chocolate during cycles) after you said something nice to me but having chocolate as a trigger during Christmas is nasty for me. I also was going to call you lucky (again the chocolate thing) but I somehow don't think lucky is a proper term for anyone with CHs. Thanks for the kind words. If I could send you some chocolate, I'd send you all of mine right now (although my wife would kill me)
My wife would never have let me go cold turkey on the meds. Again, this is great information though for others who aren't lucky enough to have a doctor at home.
Note to DJ: I have no idea who you are, but thank you very much. This thread alone has given me hope and hopefully a lot of help. A new O2 mask will be in my house in the next 5 minutes and since a headache has just begun, maybe some relief will be minutes away thanks specifically to you and those in this thread. God bless you and those who have imparted their wisdom. Every bit of relief and sleep I get will be a gift (as you all know) that is invaluable. A Christmas gift (or whatever holiday you wish to celebrate) you can be proud to have given.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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Jonny
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Re: Question about Episodic to Chronic
« Reply #31 on: Dec 29th, 2005, 7:08pm » |
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on Dec 29th, 2005, 6:53pm, FramCire wrote:| Note to DJ: I have no idea who you are, but thank you very much. |
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L 2 R....Bill L, DJ, Me
http://www.clusterheadaches.com/nashville/nashville013.jpg
Feel free to hit the Paypal button on the botton of any thread, DJ runs this site on his own dime. 
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| « Last Edit: Dec 29th, 2005, 7:09pm by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Sean_C
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Re: Question about Episodic to Chronic
« Reply #32 on: Dec 29th, 2005, 7:23pm » |
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on Dec 29th, 2005, 10:22am, FramCire wrote:As for chewy, I guess it kinda bothers me that a few of the threads I have read have got mighty contentious where people are accusing others of not having CH in a not so friendly manner (in the other threads it was not chewy). Honestly, I'd be mighty happy if I didn't have it. Shoot, I have taken more than 1 headache test hoping that alternatvie theories will pop up. So, I am mighty confused why people get in other peoples faces about whether they have it or not. Why would anyone post here pretending they do when they don't?
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Fram being a newbie and if you decide to stick around after your out of cycle you'll eventually see why for yourself. It'll become self explanitory over time.
As for why would people come here who do not have Ch I have absolutely no idea?? But they do. Some try to sell us "cures" others try to get us to have "brain surgery" some try to mimic the symptoms so they can get "pain pills" you'd be surprised at what shows up at the front door now and then. As far as the other thread went he should of at least acknowledged it was a possibility but he didn't want to listen to anybody, he just wanted to suggest what were OUR problems and so forth. There are many people here that are living YOUR deepest fears, the never ending cluster cycle. I've lived hopefully through the worst of my tour, and I feel the desparation and hope that the others feel as will you if you hang here enough. We can offer suggestions to those who do not suffer this burdon, but its very hard to listen to someones reasonings of why WE suffer when they do not.
I'm sorry if you got the wrong impression.
Sean......................................
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chewy
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Re: Question about Episodic to Chronic
« Reply #33 on: Dec 29th, 2005, 7:32pm » |
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I would suggest that you taper off the preventatives when your cycle is through. If your not in cycle then you dont need meds and there have been suggestions that over time you will build a tolerance and they will be least effective when you need them the most.
Ifyou or yourwife want to do some research on CH I would suggest the work of Prof. Peter Goadsby from the UK.
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| « Last Edit: Dec 29th, 2005, 7:33pm by chewy » |
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BlueMeanie
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Re: Question about Episodic to Chronic
« Reply #34 on: Dec 30th, 2005, 11:34am » |
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Welcome to Clusterville Fram.
I've been episodic for years. With that said, having a few PF days here and there are normal within your cycle. I usually will go at least 7 days PF before thinking about the cycle may be over. I'm not sure if you drink alchohol, but that is the trigger that most of us DO agree with. It's usually an instant CH waiting to happen.
Glad you found the correct 02 info; hope it works for you. I suggest that you stock pile meds when your cycle ends. I'm sure you're aware of the cost, and lack thereof trying to get enough to last a cycle.
Once again, welcome to the madhouse.
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FramCire
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Re: Question about Episodic to Chronic
« Reply #35 on: Dec 30th, 2005, 2:14pm » |
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I am going to stockpile meds. Is there an experation on them? Eh, I can check that myself.
I got the new mask and it has seemed to be more effective. THe only problem is that the teeth pain seems to be more intense now with the greater O2 flow. Seems like a weird trade off but I am going to try to figure out ways to counteract the tooth pain. Again, any thoughts? My first episode I didn't have any pain in my jaw/teeth. I have read up on the trigeminal nerve since I have had the pain this time, so I know why I am having it (thanks to this MB) but I haven't really found a way to beat the pain completely. Ambesol cuts it a bit and ultraset has helped in the past. Any other ideas?
As for the PF days I had, I was having HAs but very low on the kip scale. See my problem was that I wouldn't coulnt them as HAs if they didn't hurt me. I figured they weren't real and I was just imagining them (psycosomatic (sp?)) if they didn't ramp up into somthing that hurt. I hadn't understood the kip scale and the term shadow. I just didn't really understand what was going on.
Anyway, I'll take those kinds of HAs any day of the week, to be honest. I can even sleep through them, which is a blessing of immense proportions.
I don't drink, so that wont be a problem. I used to drink, but gave it up when I felt I couldn't control it when I was younger. Just never never decided to try to control it.
Anyway, you guys are stuck with me even when the beast has taken leave from me. I appreciate your help, and I hope to be able to contribute even when I am PF (for hopefully many days) in the future.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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Opus
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Re: Question about Episodic to Chronic
« Reply #36 on: Jan 1st, 2006, 2:06pm » |
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on Dec 29th, 2005, 1:42am, FramCire wrote:| 2. My fear is because I have tried everything to sleep at night. Melatonin, triptans, and multiple prescription sleep aids have all not worked. None of them have allowed me any sleep and they all have actually made me wake up with worse headaches than if I dont take them at all. This is why I am in such fear. |
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Sleep sitting up in a recliner, or sofa. I use a sofa pushed against a wall so I am sleeping in a corner of pillows so I will stay up. If those aren't possible then prop yourself up on pillows or a wedge as high as you can go. This has been the only thing that stops my wake up calls when my head is bad.
Also keep the O2 by your bed and use it at the first sign of pain, when sleeping sitting up, if I do get hit I wake when it is at a low level, not a full blown hit.
Opus/Paul
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BarbaraD
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Re: Question about Episodic to Chronic
« Reply #37 on: Jan 2nd, 2006, 8:05am » |
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Fram,
I'm on topamax and have been since 99, so I sing its praises (not many do). It's the ONLY thing that's helped me, but it does have some side effects. I've learned over the years to take the WHOLE dose at night before bed. It cuts down on the side effects. My neuro goes along with this. I'm currently on 100mg, but have been up to as much as 400mg at times (depending on how bad and often I'm getting hit). But I've also been chronic since 98. On higher doses (and sometimes lower doses) depression can be a side effect so I take trazadone along with it. My neuro has put me on some other stuff over the years, but that didn't work very well, so we've mainly just stuck to the topamax and trazadone. I do 9-12mg of melatonin at night along with the topamax and trazadone and usually sleep thru the night (till about 4a.m.).
When the beast shows up (my morning wake up call), it's usually at about a 3-5 on the Kip scale. I hit the floor immediately, grab the O2 and a strong cup of coffee. This will usually abort the morning hit. Durning the day if I get up to about a 4-5 I hit the black coffee and O2 (to avoid any drugs - I HATE abortitives). sometimes the black coffee will do it. But the O2 is always handy.
I can't take the triptans, but take cafergot instead for abortitive (it's an older drug than the triptans).
Back when I was episodic (and sometimes now when I hit a really "high" cycle) I do DHE-45 IV. You have to get off the triptans for a few days before doing this, but about three days of DHE will usually STOP the cycle (usually at the end of it). It has to be given every 8 hours IV, and it's bad news stuff, but given properly (with Reaglin before) it does work for most. BUT... make sure it's given properly (and trust me - some nurses and even doctors DO NOT know how to give it and can KILL you with it!). The Reaglin (sp) is given first, then saline, THEN the DHE (very slowly) and then more saline. DO NOT MIX the reaglin and DHE together. It will not cloud, but is lethel when mixed together. Had I NOT known this (a nice pharmist told me this AFTER looking it up when they first put me on it in a hospital the FIRST time I had it), I would not be here to tell you this today. This damn nurse in the hospital MIXED the two because she didn't KNOW and didn't bother to look it up. I happen to ASK what she was injecting into my IV and when she told me I knocked her across the room and pulled it out of my IV. She LEARNED real quick about mixing meds! Copped an attitude, but better that than explaining why she killed me. But it MUST be given with some kind of anti nauseau med FIRST or you will be throwing up everything you've eaten in the last year. Ask your wife to look it up. It's an OLD med also.
BTW, DJ is a wonderful person (about the age of my son) and we all adore him - Around here we call him Saint Deej. He started this website because he had CH and thought he was all alone. As you can see - he wasn't and Clusterville has grown to quite a big city since he moved in back in 98. We actually meet each other every chance we get (for some inexplictable reason we're not strangers - it's weird, but we're not) and we have a bond between us. No question is stupid (so ask away). Someone here will have an answer or a place to find one. But always remember, we ALL suffer from CH and sometimes our answers are short and may not come out real tactful, so don't take offense. And of couse, we have people come here (no one knows why) that don't have CH and cause trouble. Someone usually spots them right away and gets rid of them.
But this is the best place to come for CH advice and help. After your cycle passes, stick around and help someone else. That's how we do it.
Hugs BD
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MJ
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Re: Question about Episodic to Chronic
« Reply #38 on: Jan 2nd, 2006, 1:20pm » |
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on Dec 30th, 2005, 2:14pm, FramCire wrote:
I got the new mask and it has seemed to be more effective. THe only problem is that the teeth pain seems to be more intense now with the greater O2 flow. Seems like a weird trade off but I am going to try to figure out ways to counteract the tooth pain. Again, any thoughts? My first episode I didn't have any pain in my jaw/teeth. I have read up on the trigeminal nerve since I have had the pain this time, so I know why I am having it (thanks to this MB) but I haven't really found a way to beat the pain completely. Ambesol cuts it a bit and ultraset has helped in the past. Any other ideas? |
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FramCire
I am one of the few who oxygen does not work properly for. For me it increases the intensity of CH all over.
So I think I understand your increased teeth pain.
One thing I have discovered recently is to rinse your gums with ice cold water, repeat untill numb. This has become a part of my cluster routine, performed towards the end of an attack when I can be still. Others chew on ice.
MJ
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FramCire
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Re: Question about Episodic to Chronic
« Reply #39 on: Jan 2nd, 2006, 4:11pm » |
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UPdate: since I got my new mask I have a new "Cocktail" that is working OK for me. Here it is:
15 minutes of O2 with the Non-rebreather mask at 8 (units?) (now this is going to sound silly) wiht my toungue pushed up against my lower teeth where the pain usually is most located. It helps with the headache and doesn't seem to hurt the nerve pain as much. It doesnt kill the beast but the HAs don't reach the level of pain they usually do
At first sign of my 10 PM HA, I take a tripan (whatever I got - I only have injectables and pills and I HATE needles), 2 ultracet, 50 topamax (my evening dose), 240 verapomil (my evening dose), and of course the O2. It seems to take the edge off of my evening HAs and I seem to get through the night without horribly painful HAs.... I still have them and I dont sleep great but I can lay down most of the night and watch TV with low kip scale HAs. I probably should just take the injectables and try to get some sleep, but I fear that I will fall asleep and wake up with a horrible HA when my 2 AMer hits and that will stink. When I do it this way, I am usually still up at 2AM, hit the O2 again and fall asleep around 3AM. Get up with the kids at 6-6:30 ready to paint the town....OK ready to battle fatigue all day....
Anyway, at least i can use the O2 better now with the new mask. I still havent found a good way to get sleep before 3AM. I have 3 HAs between 6PM and 4AM that I just can't fall asleep during no matter what I do. Even with the pain controlled I can't seem to fall asleep. I am thinking it may be psychological now because everytime I have fallen asleep before 2am I have woke up with the worst HAs around 2AM.
Anyway, I am better rested today and I am hoping this new "cocktail" will allow me even better sleeping results if I cam just convince myself to try sleep again BEFORE 2AM. Unfortunately Melatonin and Ambien have not done well for me YET.
Again folks, thank for the input. Nice to be here and feel normal. I am hoping to feel like myself just 1 day soon. My birthday is coming up and I am hoping for a chance to have my brain back for just 1 day.... what a great gift that would be.
Either way, I can't complain. It could be worse.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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