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Title: Question about Episodic to Chronic Post by FramCire on Dec 28th, 2005, 11:19pm My episode started before Thanksgiving. I had a day without headaches and they returned and now I have had around 36 hours without and I have my first headache. Any thoughts? I had my first "episode" last year and it lasted 4 weeks and went away. Could this be becoming chronic? If so, anyone want to help me deal with what I am looking forward to. Has anyone with episodic CH had anything like this? |
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Title: Re: Question about Episodic to Chronic Post by chewy on Dec 28th, 2005, 11:22pm Your not chronic until you've gone 12 months with less than 30 days pain free with or without meds. Your not even close. |
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Title: Re: Question about Episodic to Chronic Post by E-Double on Dec 28th, 2005, 11:28pm What he said. Just enjoy the ride my friend. Try your best to stay positive |
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Title: Re: Question about Episodic to Chronic Post by FramCire on Dec 28th, 2005, 11:30pm Not to be rude, but my question was to ask if this was BECOMING chonic. I was under the impression the episodic CH generally had a period of time between episodes of weeks or months. To have 1 day without here and there didn't seem normal. I was wondering if people with episodic had had episodes interupted by a day or two Again, I am worried about it becoming chronic so I am looking for anyone who has episodic who has had an experience similar to this or if this is like what happened to people who went form episodic to chronic. As you can probably understand, the proposition of going from episodic to chronic is scary beyond belief. |
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Title: Re: Question about Episodic to Chronic Post by nani on Dec 28th, 2005, 11:35pm Yes, it's scary. The definition of chronic was given above. 12 months with less than 30 consecutive pain free days. It's possible for both episodics and chronics to have PF days within their "cycles", but the chronic definition is a long way off for you. Don't sweat it... it's not worth the energy at this point. Really. Enjoy any PF moments you have. PF wishes, nani |
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Title: Re: Question about Episodic to Chronic Post by chewy on Dec 28th, 2005, 11:39pm Are you even sure you have CH ? Ever been diagnosed? |
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Title: Re: Question about Episodic to Chronic Post by E-Double on Dec 28th, 2005, 11:41pm As scary as it may be you really can not predict anything. Such is the nature of the disorder. I had episodic clusters for a decade and last March went chronic. Throughout this relatively long cycle (now 21 months) I have had cycles within. This means periods of high and low activity. I have even had a week off here and there with a 3 week PF period a few weeks ago. I almost thought I was finally finished yet they came back. They always do. Here is the point: Stay as positive as you can and have meds stockpiled and ready for battle if/when needed. Life goes on ya just need to live it! Took me a long time to stop questioning the "Beast" and to get motivated to start living. I'm a Special education teacher/Board Certified Behavior Analyst and run home schools for developmentally disabled toddlers. I also lecture around NY and train teachers entering the field. I go from house to house all day and have to teach, counsel, and train. It gets hectic but I have learned to never leave home without my meds regardless how I feel(sometimes feel great....then BAM!) Keep your chin up and remember... "IT IS WHAT IT IS" so breathe and try to live to the best of your abilities. Wishing you the best Eric |
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Title: Re: Question about Episodic to Chronic Post by MJ on Dec 28th, 2005, 11:42pm Fram I dont think you have anything to fear. I would just consider it a nice benefit to have pain free days in between and yes lots of folks get small breaks like that. wishing you many more. MJ |
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Title: Re: Question about Episodic to Chronic Post by Sean_C on Dec 28th, 2005, 11:52pm It doesn't sound it, enjoy your PF time either way ;) Sean......................... |
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Title: Re: Question about Episodic to Chronic Post by FramCire on Dec 29th, 2005, 1:42am 1. yes I have been diagnosed with it. I live with a Dr, and I have 3 Drs who have followed my case very closely, we have been in touch with multiple nuerologists and I am going to be seeing a headache specialist at a headache clinic as soon as an appointment can be made. Although I can't be 100% sure of anything because I myself am not a Dr, I am fairly sure the diagnosis is correct. I guess I must have pissed chewy off with something I said. If so, I appologize. 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. Anyway, I am very happy to have had a couple of PF days and I am hopeful that this episode will go away and that it wont become chronic. Does anyone have any other sleep ideas? I am a stay at home dad and I can't nap during the day at all (not that it is recommended either). 3. To the poster above who is a Special Ed/Behavoir Specialist. I taught Early Childhood Special Ed for a couple of Years before i became a stay at home father and one of my favorite people was our Coops behavior specialist. She is an awesome lady and if you are anything like her, I am amazed by what you do. God bless you. Your work is awesome. |
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Title: Re: Question about Episodic to Chronic Post by chewy on Dec 29th, 2005, 7:23am Tried Dramamine? |
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Title: Re: Question about Episodic to Chronic Post by Wendy on Dec 29th, 2005, 7:48am I understand how your feeling, and we don't mean to sound like we are being smartasses. I am a chronic....without meds or my seeds(my new thing) its an all the time, never ending thing! With an a week off sometimes. But thats again WITHOUT anything. It is scary and I think we sometimes forget how scary it is when you start becoming chronic and in my case I didn't even know what the hell was happening to me til then. I saw tons of different Dr.'s and because my headaches were seasonal they all thought different things UNTIL they were all the time that I KNEW something was really really wrong. Sleep is the hardest and can wear on you like nothing else. You said you have taken sleep drugs? I know in my worst times amibenCR helped alot along with o2. The CR one last longer than the original. Anyway not to go on but we really do know how scared you are and how worn out your body and mind become, but just hang on its probably your tough week( we all get them) but please don't worry about being chronic yet , will only add to your CH. We all mean well and we do care. Best of luck getting pass this bad time and keep in touch. [smiley=hug.gif] [smiley=hug.gif] |
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Title: Re: Question about Episodic to Chronic Post by FramCire on Dec 29th, 2005, 8:46am I haven't tried Dramamine and I have Ambien but I don't know if it is Cr (I'll ask my wife). You guys have been a huge help. Just knowing it can be normal to have a PF day and not become chronic takes that edge off. For me, knowledge is a bad thing. I don't know if it has been the triptans of what, but I have been very jumpy whenever I am not either in pain or very tired. Along with not having my minds normal functioning, it is not a fun time (like I need to tell any of you this). Anyway, thanks for everyones input. Your suggestions are also very much appreciated. I woke up this morning with hope that tomorrow would be a PF day. One more question. I have found that Maxalt (the dissovlable (sp?) kind) works best of the triptans for me but insurance wont cover it. Have any of you had any luck getting your insurance to cover more than 6 per month? The junk is lke $150 per 6 tabs. P.S. If you like the stuff and pay out of pocket ans your Dr if they can get a coupon from the drug rep. My Dr found one. |
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Title: Re: Question about Episodic to Chronic Post by nani on Dec 29th, 2005, 9:40am Hi again, Fram. You should look over on the left at the Oxygen info link. Oxygen has been very helpful to many of us. Also, look here for standard CH treatments. You'll want a preventative as well as an abortive med. http://www.brightok.net/~mnjday/chtherapy.pdf For an alternative prevent, look at this thread (and all the threads lnked in it) http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362 Melatonin and Benadryl may help you sleep at night. For a very alternative treatment (one which I've found the most effective for me so far) look here: www.clusterbusters.com Oh, and don't worry about making chewy mad...he's got identity issues. ;) Keep asking questions, info is your best weapon. :) pain free wishes, nani |
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Title: Re: Question about Episodic to Chronic Post by FramCire on Dec 29th, 2005, 10:22am I do use O2. Forgot to mention it because I don't use it specifically to aid sleep as much as to stop an attack. Splitting hairs I know, but I do have a couple tanks at all times. Just glad my insurance covers it this time. I will take a look at the O2 info though. It doesn't seem to work the best and I have read contradicting info as to when to use it and it has me confused. I don't get consistant relief from anything these days, not that that is anything abnormal. Anyway, thanks again. I'll check out the links provided. 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? Anyway, thanks again. Any other advise is appreciated. I'm being set up with a visit to the Headache clinic. So, I guess I'll learn even more soon. Good luck everyone. |
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Title: Re: Question about Episodic to Chronic Post by Redd715 on Dec 29th, 2005, 10:39am In so far as the question of why people would post here if they don't have CH.... Doctors are very poorly informed as to the nature of this disease as a whole. Most people are misdiagnosed because the Doctor or Neurologist has never even heard of the condition, and some Doctors who have heard it as a catch all phrase are fast to diagnose it when the real culprit is something more easily treated. Many of us have been mis diagnosed with numerous headache conditions in the past, while some of us have multiple headache conditions simultainiously. CH medications can be highly toxic to those who don't actually need them, as well as to those who do. For safety reasons and out of care for those who are presenting with symptoms that do not meet CH criteria we try to point them in the right direction. I hope this helps explain it. Pegg |
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Title: Re: Question about Episodic to Chronic Post by chewy on Dec 29th, 2005, 11:46am Quote:
It wasn't an accusation, it was a question. If you are not accurately diagnosed with clusters then a lot of the info you are getting could be useless and potentially harmful. Quote:
Good question. |
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Title: Re: Question about Episodic to Chronic Post by BobG on Dec 29th, 2005, 1:06pm Don't worry about the 'chronic' thing. My clusters started 30 years ago and I've never been chronic. My clusters were always 4 to 8 weeks every year, sometimes twice a year and the very worst was maybe 12 weeks. I think that only happened twice. You say you live with a doctor, your wife?. Medical doc? Seems like there should be lots of free maxalt samples available. No? O2 (oxygen) Are you using a NON-rebreather mask? For relief start using it at the very first feeling of an attack and continue at least 5 minutes after the pain leaves. Sleep........try sleeping with your head elevated. My La-Z-Boy helped get me through many nights. It won't eliminate the attacks but might lessen them some. |
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Title: Re: Question about Episodic to Chronic Post by FramCire on Dec 29th, 2005, 1:44pm chewy: I guess because your posts were so short and didn't really answer the question, I took it the wrong way. Plus I had read other threads where people have not been so nice about it. As I said before, the other threads did not involve you. I am sorry. As for the samples, I do get them but I try not to hog them as there are plenty of Migrane sufferers out there who also use them. Being the spouse of a Dr has advantages but with it also comes the line of making sure you don't abuse the privledges. (My wife is a Family Pratice Doc.) I guess it is time to be selfish and ask her to contact the drug rep and get some more. Thanks for the O2 advise. I have the wrong mask (thank you to the poster who suggested I read the oxygen info link on this site). The rebreather thing I didn't know about. I was also only using it for 15 minutes and that was it no matter what. Since I am bombarding people with weird questions...does anyone else have a loss of appitite or thirst? I tend to not want to eat or drink much. I do have the tooth pain thing ... the trigeminal (sp?) nerve too so that may be part of it. OK, sorry again for the questions but I am hoping that along with getting some answers maybe it will help others. I got some great help reading other threads here. |
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Title: Re: Question about Episodic to Chronic Post by E-Double on Dec 29th, 2005, 2:11pm Be selfish my man!!!!!!!! Get all you can from wife ;) If I am peaking then my appetite suffers. |
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Title: Re: Question about Episodic to Chronic Post by BobG on Dec 29th, 2005, 2:19pm Quote:
Nonrebreather. NON-rebreather. Non. NON! Quote:
I haven’t seen any weird questions, yet. Ask anything you want. We all have and the newbies to come will ask again. And again, And again. No big deal. We’ll treat them as we always have…………… Quote:
Me too. Quote:
Then we have all done our jobs. |
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Title: Re: Question about Episodic to Chronic Post by FramCire on Dec 29th, 2005, 3:23pm OK. My mask doesnt have a bag. I guess I ought to go get one, huh? (yes, I am an idiot, but I wasn't a complete idiot pre CH, verapomil (sp?), and topamax) As for being selfish, it is time. I had hoped that being on both Topamax and Verapomil (sp?) would cut this episode down quickly. It has only been 4 weeks, so I guess I really have nothing to complain about since many people reading this are probably chronic. Anyway, we had a friend offer her supply of Maxalt (samples my wife gave her) and I said no because she is a single mother and I couldn't imagine her having a migrane and not having the meds to take when she needed it when she was caring for her kids. As I said, I'm an idiot. Anyway, you guys are great. (Even chewy who I got on earlier). Thanks for all the great advice. I am sure this website will help my wife and her partners if CH rears it's ugly head in their practice again. The resources here are excellent. Also, I thought I might share a little success I have had. I have found that Ultracet has had some limited success in taking the edge off of some of my HAs when other things don't work or I couldn't take any more triptans that day. it didn't rid me of the HA but it lowered the pain enough to make it bearable until it went away. Also, am I the only person who sleeps in a room with the lights on. I find I stay sleeping a bit longer and fall asleep easier. OK, just looked at the KIP scale for the first time in awhile. Saw the thing about shadows. What is a "shadow"? Should I be seeing shadows or something? I don't remember a HA where I could sleep, so I never paid much attention to below 5 on the scale before. (hey look, another bizarre question!!!!) |
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Title: Re: Question about Episodic to Chronic Post by jon019 on Dec 29th, 2005, 3:42pm Hi Fram, Been painfree (some shadows) since Sept 14. Currently on verapamil (480 mg to start, tapered to 240 and thinking about 160) and Topomax (ramped up to 100 mg quickly with bad side effects, ramped down to 25 currently and thinking about 12 or none). This combo might be keeping me out of cycle or it might just be gone on its own. However, the hammer that stopped the cycle (SAME DAY, I'm SHOUTING THIS) was an IV of solu medrol followed by a weeks worth of tapered tabs of same. My feeling that it took 2-4 weeks for the above combo(Verap/Topo) to effectively maintain. Regards Jon |
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Title: Re: Question about Episodic to Chronic Post by E-Double on Dec 29th, 2005, 3:42pm 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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Title: Re: Question about Episodic to Chronic Post by BobG on Dec 29th, 2005, 4:00pm How much verapamil are you taking? Most people start low, 200mg a day and slowly ramp up until they reach a point where it stops the cluster. 800mg is not unheard of. Your Dr. Wife will probably say "How much? 800? That'll kill a horse" Just tell her "No it won't." And some folks use lithium with the verapamil. You just have to find the cocktail that works for you. |
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Title: Re: Question about Episodic to Chronic Post by FramCire on Dec 29th, 2005, 5:17pm on 12/29/05 at 15:42:20, E-Double wrote:
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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Title: Re: Question about Episodic to Chronic Post by BobG on Dec 29th, 2005, 5:36pm Quote:
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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Title: Re: Question about Episodic to Chronic Post by Jonny on Dec 29th, 2005, 5:41pm on 12/29/05 at 17:36:37, BobG wrote:
This one sentence could keep you from death, always talk to your doc....ALWAYS!! |
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Title: Re: Question about Episodic to Chronic Post by MJ on Dec 29th, 2005, 6:05pm 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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Title: Re: Question about Episodic to Chronic Post by BobG on Dec 29th, 2005, 6:28pm on 12/29/05 at 18:05:19, MJ wrote:
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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Title: Re: Question about Episodic to Chronic Post by FramCire on Dec 29th, 2005, 6:53pm on 12/29/05 at 18:05:19, MJ wrote:
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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Title: Re: Question about Episodic to Chronic Post by Jonny on Dec 29th, 2005, 7:08pm on 12/29/05 at 18:53:28, FramCire wrote:
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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Title: Re: Question about Episodic to Chronic Post by Sean_C on Dec 29th, 2005, 7:23pm on 12/29/05 at 10:22:22, FramCire wrote:
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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Title: Re: Question about Episodic to Chronic Post by chewy on Dec 29th, 2005, 7:32pm 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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Title: Re: Question about Episodic to Chronic Post by BlueMeanie on Dec 30th, 2005, 11:34am 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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Title: Re: Question about Episodic to Chronic Post by FramCire on Dec 30th, 2005, 2:14pm 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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Title: Re: Question about Episodic to Chronic Post by Opus on Jan 1st, 2006, 2:06pm on 12/29/05 at 01:42:30, FramCire wrote:
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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Title: Re: Question about Episodic to Chronic Post by BarbaraD on Jan 2nd, 2006, 8:05am 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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Title: Re: Question about Episodic to Chronic Post by MJ on Jan 2nd, 2006, 1:20pm on 12/30/05 at 14:14:29, FramCire wrote:
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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Title: Re: Question about Episodic to Chronic Post by FramCire on Jan 2nd, 2006, 4:11pm 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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