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Title: cluster headache newbie Post by kycouple on Aug 7th, 2004, 9:03am [smiley=huh.gif] good morning all, we are new to the cluster headache. my 47 year old husband has just been diagnosed with these horrifying headaches and we are looking for all the help we can get. |
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Title: Re: cluster headache newbie Post by synergy2120 on Aug 7th, 2004, 9:41am You're in the right place then. I joined this web site yesterday and already feel so much better for the advice i have been given and seen all the support that is giving to people. Does your husband get them chronically or episodic? what meds he take? Sarah. |
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Title: Re: cluster headache newbie Post by IndianaJohn on Aug 7th, 2004, 9:53am Hello kycouple, So sorry that you have to be here, but glad you have found us. There are a lot of very smart and supportive people here. Also the links at left contain some very valuable information. Best Wishes |
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Title: Re: cluster headache newbie Post by IronHorse on Aug 7th, 2004, 10:03am Read on KY couple, there are a lot of good postings from people all over the world....You are with freinds |
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Title: Re: cluster headache newbie Post by E-Double on Aug 7th, 2004, 10:12am Welcome aboard! So sorry you both are suffering. You will find tremendous support here as well as tons of information. Hang in there and learn as much as you can so that you both can be armed for the long battles. Many hugs, Eric |
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Title: Re: cluster headache newbie Post by UN_SOLVED on Aug 7th, 2004, 11:31am Welcome to the boards. Read as much as possible. Feel free to ask any of us questions about docs, treatments, and meds. We're pretty knowledgable about CH (We have to be ! ) PainFree Wishes,' Unsolved |
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Title: Re: cluster headache newbie Post by kycouple on Aug 7th, 2004, 12:35pm Hi Everyone, At this point we do not know if these are episodic or chronic as they have really just started in the last month. The doctor put him on prednesone (the highest dosage he could prescribe) and percoset for some kind of pain relief. We are hoping this will help. He had oxygen therapy yesterday and that gave him some relief. I am very happy to have found this site for support for myself as well as for my husband. Thank you all for being here, just wish it was not for this. |
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Title: Re: cluster headache newbie Post by E-Double on Aug 7th, 2004, 12:59pm on 08/07/04 at 12:35:13, kycouple wrote:
Percoset.... NO!!! Pain killer Ouch!!! Atleast with me... made much worse Is this his first time on meds? People are probobly going to tell you that he should be on different ones... Pred. along with some other as a preventative and forget the percoset and prob. get some sort of triptan along with Oxygen. Is this the first time experiencing these headaches or did he just finally get diagnosed after many years like many of us have done? Get more info. and bring it to the doctor Best of luck new friend, Eric |
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Title: Re: cluster headache newbie Post by don on Aug 7th, 2004, 4:33pm Quote:
That would be fine if the Doc also Rxed a preventative to go with it. Quote:
NOT a good treatment for CH. |
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Title: Re: cluster headache newbie Post by kycouple on Aug 7th, 2004, 7:16pm We are new at this, could some one explain why not use percoset for pain. It does seem to give some relief. I need some ammo to take to my doctor. Doctor has talked to neurologist in our town and he seems to think that this is a good idea. Also so I want to thank every one for being so nice and understanding to my wife, she has done all the posting here so far. I thought it should be my turn to ask some questions. |
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Title: Re: cluster headache newbie Post by E-Double on Aug 7th, 2004, 7:36pm on 08/07/04 at 19:16:05, kycouple wrote:
If it works then fantastic if he truly has relief!!! Does he get relief or is he knocked out? How long has this cycle been occurring ? You said this is his first? Anyway... Many people, myself included were taking pain killers prior to getting "proper" meds. These painkillers actually made the headaches worse= Rebound headaches with such ferocity it made the original nightmare look weak. Typically they say that pain killers are useless for CH'ers. For me they did nothing but make me dopey or knocked me out which in turn brought the beast back with a vengence. Read up on meds.... Check these out, they are things I've compiled based on my CH mentors from this grand old family http://www.headachedrugs.com/archives/preventivemeds.html http://www.mhni.com/faqs_cluster.html#treatment http://www.chhelp.org/medications.html http://www.upstate.edu/neurology/haas/hpclrx.htm There are people with longer history than I have with medication and could probobly guide you better but I figured I'd try to give you guys a start. Eric P.S. didn't realize I was responding to you, thought your wife.... Only we know how we feel! Just trying to help you for now and unfortunately the future! |
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Title: Re: cluster headache newbie Post by kycouple on Aug 7th, 2004, 8:10pm Maybe I should id myself at the begining of the post since we use the same name. Thanks for the reply. I will be reading them. By the way our names our Steve and Judy in case we did not id ourself in other posts. I do get a little dopey which I see could effect my job and what other part of my life I have left at this point. I found today the best relief so far is a cold compact and Judys shoulder to cry on. I go back to the doctors on tuesday and I have a lot more questions to ask thanks to all of you. |
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Title: Re: cluster headache newbie Post by IndianaJohn on Aug 7th, 2004, 8:27pm Hello Steve and Judy, I could not agree more with the stuff eric has presented to you. the pain killers never have stopped a HA nor aborted one for me. Just left me in pain and dopey. Sometimes I got rebound HA's, sometimes not. All I can tell you is read, read, read. Print out information you wish to discuss with your doc, make a list if necessary. Best Wishes John |
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Title: Re: cluster headache newbie Post by E-Double on Aug 7th, 2004, 8:44pm Hi Steve and Judy, Research!!!! Steve, your a lucky man to have someone who loves, supports and found this site for you. My fiance found it for me and it saved me :) How long has it been? (current cycle and history of CH undiagnosed) I went 9 years undiagnosed or misdiagnosed. No proper meds just painkillers left over from other stuff, steam, ice packs and bandanas! Last year they morphed and hit me during the day. I was used to only having the nightimers. I fianlly went to a doc and he said seasonal migraines/allergies. Take blahblah. Well this cycle Ithought I was out of the woods b/c didn't get hit like usual Always been march/april. I tried all the allergy stuff to be proactive and wasn't getting hit.... Bamm end of MAY ALL NIGHT LONG then all day long. Turned out Worse than ever. Fianlly got to a neuro and got proper diagnosis but ineffective treatment. Four docs later found what works for me (hopefullycontinues to) at least this cycle. Anyway... it takes time dude! Been 2 1/2 months for me and still going but it's ok cause I have the support I need(All of you and my awesome fiance!!) Going to tinker with this and tinker with that. What works for me may not for you and same goes for many of us. Hang in there, get proper meds. Preventative and abortive and tell your wife how much you love her! Best to you both, Eric |
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Title: Re: cluster headache newbie Post by kycouple on Aug 7th, 2004, 8:58pm I tell her everyday. I am about 4 weeks into my first cycle. Never heard of CH until this week. Two doctors confim CHs. Have had day and night friends so far(did not say good friends). My first bad one I was 60 miles from home sitting on the side of the interstate when they found me. Was taken off road until I find out how to control them. I will keep looking for a way. |
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Title: Re: cluster headache newbie Post by E-Double on Aug 7th, 2004, 9:20pm on 08/07/04 at 20:58:27, kycouple wrote:
Steve, 4wks. into your first. Kinda a nightmare! i definitely understand. I never heard of CH until I found this site in the beginning of June. Nice to have a name and know it's not gonna kill us despite feeling like it will. Are you still going day and night? Many hits? I was like that. Was driving me mad. I was able to finally wipe out my nighttime visits by taking melatonin. It seems to help a lot of us. I was taking 6mg. 1/2 hour before bed(well now I'm doing 9 b/c had a few visits last week). Finally got sleep. Sleep is something I'm sure you are missing. It's worth a shot. I also got Oxygen. Cheap, no dangerous side-effects and also very helpful at aborting for many of us. Get some if you can and if not there are certainly ways ;) As far as meds go, I'm taking verapamil as a preventative and when needed I use Imitrex injections to abort. I was originally taking Depakote and using zomig to abort. Prednisone works alone for some people but many use this as an "agent" to start relief while preventatives are reaching a therapeutic level. I was originally on this along with the Depakote but once I was finished with the Prednisone I got bashed so I knew that the Depakote wasn't the right med. Ya see it takes tinkering. We are all different. Anyway, since this is your first ARM YOURSELF! ;) Hang tough and don't hesitate to reach out. You've got a new family. Welcome. Eric |
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Title: Re: cluster headache newbie Post by thebbz on Aug 7th, 2004, 10:37pm Hey Steve! The prednisone works for me, get ready for side effects though. Takes a few days to ramp up on it,heart rate above 100 bpm, a nap every 3 days, you might find yourself baking cookies at 3:00AM. Imitrex inj. works as abortive for me , no preventative has worked . O2 works well for some , needs to be applied correctly . Ive been episodic for 25 years so they wont kill ya remember that. The neuro is your best bet. Pain killers with these only aggrivates . Learn your own triggers, ie:alcohol, stress, caffeine,ect...and hang on..Best wishes and fight the good fight the bbz |
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Title: Re: cluster headache newbie Post by Rick_K on Aug 7th, 2004, 10:48pm Don’t give up on oxygen it must be used correctly, see the link to the left; it truly is a wonderful thing. Pain killers do not do shit. I spent years and years using pain killers (this was before I knew what clusters were) during one cycle I took one first thing every morning hoping they would help. By the time a pain drug gets in your system the worst of the HA is usually over. Get away from them and talk to your doc about a preventative such as Verapamil. So sorry you had to find us but glad you’re here. There is a lot of support here and plenty of wisdom. Rick |
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Title: Re: cluster headache newbie Post by ex_pat_asia on Aug 8th, 2004, 1:32am Steve, As newly diagnosed you have a chance to start with a wealth of experience and information here that did not exist when many of us had our first tussle with the malady known as cluster. I urge you to do a couple of things. First, sit down and write all you can remember about the events you have experienced. Note dates, time at onset, time at departure, meds, foods you ate before it happened, environmental conditions, even state of mind (you'll be surprised...usually it is a "relaxed" state in which you are most vulnerable but this can vary). Save your log for later references you might want to use here or with your doctor. Secondly, fire the Doc that gave you percoset just in case that message hasn't already come through. No need to get pissed off at him. He simply doesn't know. Find someone who does. Then bolster their ability to help with what you find here and elsewhere. Stay proactive on this. Don't let the doc be dismissive with you. Chances are good that, if you have been properly diagnosed, you are in for an oddyssy of sorts. My advice FWIW: Grab the beast by his horny head now and give him "what fer" with your own proactive involvement and thinking cap (and thank your stars for an able assist from your wife - this is "mui importante"...but warn her that there will be times when helping equates to leaving you alone for a while. My poor wife gets such a helpless look on her face if we get to that point, but she bites the bullet and leaves me to my own devices and temporary insanities knowing I will emerge later like some spun-cycled troll.) In terms of favorite methods of dealing with cluster headaches once you are diagnosed, there are three areas to play close attention to: Lifestyle: This refers mostly to foods and drinks that can "trigger" the attack, especially during the period of an episode when you are experiencing frequent attacks. However, "triggers" as we call them, are not the only subject to explore. You should try to determine whether you have any form of sleep disorder which is often a co-condition that aggravates cluster headache. One way to do this is ask your supportive wife if she notices whether you snore too long or loud, or have moments where you awaken partially during sleep because you quit breathing. You would not neccessarily be aware of this yourself. You could be disrupting sleep during levels 3 or 4 and rising to a semi concious state. A lack of REM sleep and stage three and four sleep is particularly problematic because it is during these periods that the body and brain are at complete rest (3&4) and memory consolidation occurs (REM). Sleep, and our circadian rythms are big consideration within the subject of cluster headache. Preventative Meds: There are a whole raft of them with many varying degrees of efficicacy in keeping the attacks at bay or at least diminishing both the severity and frequency of them. You will find most of these desribed here in some form or the other. If your Doctor doesn't listen to what you have learned...fire him too and keep trying. This is part of the odyssy Abortive Meds: These are designed to stop the attack in its tracks, usually involving some form of vaso-constriction action (downsize your bloated blood vessels that are carring all the bad stuff to your nerve endings and whose bloated features press on key points of the nervous system. My favorite is Oxygen...its natural state and inexpensiveness, as well as its undisputed efficacy across a large population of patients, make it tops on my list. triptan drugs (Immitrex, replax, etc.) are very effective but expensive and limited in numbers of dosage. Most clusterheads exceed this in a given time period as nearly as I can tell from the anecdotes. They also have side effects. Most of us overdose this stuff...probably not a great idea..but we do it because it stops the pain. These three areas, when addressed will be your "stratgey". Every clusterhead should have one that he participated in on a proactive basis. This has some well being effects that go beyond the medications. Check your doctor (including a thorough examination to rule out other maladys)...please do this and please see a neurologist. GPs are often good hearted folks who may be more inclined to listen to you and work with you...but for the first thorough exam I would put my money on the specialist. I know we villify the doctors around here a lot...mostly they have been out of touch on this malady...but not all are and many have tertiary information and concerns that will help you. One of these, years ago, rightfully suspected sleep apnea in my case, and ordered the testing for subsequent confirmation. Treatment dramatically reduced my attacks and the number of episodes I encountered per year. Keep Cheer, you found a nice spot here on the web, and we all get a great deal out of it. PFDAN to ALL |
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Title: Re: cluster headache newbie Post by IndianaJohn on Aug 8th, 2004, 8:21am Ditto for ex_pat_asia! |
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Title: Re: cluster headache newbie Post by E-Double on Aug 8th, 2004, 8:54am Well Put!!! Ex_Pat_Asia ;) Emphasis on note taking!!! I have a spread sheet that I developed with every possible variable noted. I broke it into 15 minute intervals b/c if I was lucky that was my shortest. Unfortunately I had full blown headbangers that lasted upwards of 3.5 hrs. and nothing aborted them. KEEP DATA!!!!! It will tell a story to your docs that sometimes we can not express in words. I'd be happy to share my simple info if anyone wants to take alook. It might be able to help some of you getan idea how to display what we are going through other than anecdotal notes. Feel good, Eric |
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Title: Re: cluster headache newbie Post by kycouple on Aug 8th, 2004, 9:26am Steve here, we started a log to take to our dr. Going to check with nuro. in person this week and see if he has any better ideas. Stopped taking pain meds. per you alls advice. We will check back in later and see hows it is going. Had fairly good night but this morning has been bad. Whats left over is all thats going on now. |
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Title: Re: cluster headache newbie Post by E-Double on Aug 8th, 2004, 9:54am on 08/08/04 at 09:26:08, kycouple wrote:
Sorry your suffering brother!!! Dude do what is working for ya atleast til you get a "proper" fix or help! These are just suggestions to help you with your battle but if you have nothing to help you get by and have some relief go for it! UNLESS THEY(the percs) ARE IN FACT MAKING YOU FEEL WORSE!! THEN DON"T Nobody wants you to suffer or wants to suffer themselves. These were all suggestions based on years of struggle and research with our own battles. Have you tried steam or icepacks on the back of neck? Slugging water. COFFEE!!!!!!!!!!!!!!!!!!! Hang in there and try some home remedies for now until you can get some proper relief! I use the ice packs on the neck (frozen vegies in a bag a re great. PEAS!!) I also (if I can stand still for a few moments) Place a towel over my head, covering a sink filling it up with scalding water so as to get tons of steam. Good for the skin too! ;) Slug coffee by the pot. Rocking rythmically or My favorite: Pacing like the mad schizophrenic with coffee mug in hand chain smoking in pajamas throughout the neighborhood @ 3 in the morning [smiley=laugh.gif] Feel good man & hang in there!! Eric |
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Title: Re: cluster headache newbie Post by don on Aug 8th, 2004, 9:57am Click the link. There is a "Headache Diary" format in the right hand column. http://www.headaches.org/consumer/educationgeneralindex.html |
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Title: Re: cluster headache newbie Post by thebbz on Aug 8th, 2004, 1:14pm Thanks for the link man!!! Finally a simple one. BB |
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Title: Re: cluster headache newbie Post by kycouple on Aug 8th, 2004, 2:08pm Steve here, Judy getting some sleep which helps me relax some dont like to see her so upset and worried. Thanks for the link. To answer a few questions. Ice packs on letf side of head works some to some what. pain killers take away some of the edge but I dont like the feeling I have afterwards. Having 3 to 5 bouts with it a day, the night ones are the worst ones, walks seem to help on the little ones. Dont want to get out got this 127 yard sale going on and these people who dont know how to drive just bug me to no end. Smoke like a stove pipe anyway. Hot coffee not bad, dont seem to bother me. The steam from it feels pretty good when I breath in. Will try towel over sink next. At this point I will try anything to get some relief.. Thanks all for your support and advice |
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Title: Re: cluster headache newbie Post by Kris_in_SJ on Aug 8th, 2004, 8:52pm Hi Steve and Judy, You've been given alot of great advice so far, so I won't muddy the waters .... Prednisone, good preventative (Verapamil is my drug of choice), and a good abortive like O2 or Imitrex injects .... all make a cycle a little easier to bear. Narcotics are generally a no-no. They make some people's HA's worse (though not everyone's), but more than anything the headaches aren't really being addressed - just covered up with a narcotic "high" that can be addictive. It's actually pretty incredible that you got a diagnosis so quickly - most of us didn't get so lucky. Glad you found us. Support is always available here. Oh, and Steve .... give that lady a kiss! I thank my lucky stars every day for the support, love and understanding my husband gives me. Hugs, Kris |
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Title: Re: cluster headache newbie Post by Charlie on Aug 9th, 2004, 2:21am Sorry you have to deal with this horror but if you stick around, you'll find good and imaginative ideas for dealing with Ch. Over the counter drugs are too slow and have so little effect on pain that I found them useless. Things like Imitrex, and oxygen are better bets. Very vigorous exercise that affects circulation can be helpful. Here's one that I used: Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. I hope this technique is helpful and I wish you the best of luck Charlie |
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Title: Re: cluster headache newbie Post by Wolf_Smiles on Aug 9th, 2004, 4:14pm Yes ,,,Thanks for that link..this looks better than my hand written book :P |
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Title: Re: cluster headache newbie Post by kycouple on Aug 9th, 2004, 5:37pm Hi all, Judy here. Just a note to say thanks to all of you. You have helped me deal with this nightmare and I know it helps Steve to know he is not alone. We did get lucky with a quick diagnosis. Our family Dr. knew almost right away what was happening. He also knew some of the things used to treat them but since finding you all I am armed for our visit with him tomorrow. Here's hoping we get meds that will help. Again, a GREAT BIG THANKS TO YOU ALL. Hugs and Good Thoughts to All Judy |
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Title: Re: cluster headache newbie Post by Woobie on Aug 9th, 2004, 8:35pm Welcome aboard KY Couple.......... Yet another "Steve". Holy bats... a lot of Steves here. tina :-* |
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Title: Re: cluster headache newbie Post by don on Aug 9th, 2004, 8:58pm Ch traits; Ruddy complexion Predominantly male Ussually named Steve |
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Title: Re: cluster headache newbie Post by E-Double on Aug 9th, 2004, 9:39pm on 08/09/04 at 20:58:38, don wrote:
From this day forth I too want to be known as Steve!!! ;) Later and truly a pleasure to give and receive......................................................................................................................................................support ;;D Eric |
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Title: Re: cluster headache newbie Post by kycouple on Aug 10th, 2004, 8:25pm Hi all, Judy here, Just thought i would give you an update. We went back to the dr today and are going to the neurologist thursday. Dr. is doing his homework i will say, He has given Steve some verapimil (generic) to try. What can you all tell me about side effects and millagrams and stuff. The meds was my suggestion, only because of what I have learned from you all. Hope it works. How do you all deal with the work enviroment. Do you find that people treat you any different. Anything you can share is greatly appreciated. Again thank you for being here. Your friends Steve and Judy |
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Title: Re: cluster headache newbie Post by E-Double on Aug 10th, 2004, 8:35pm on 08/10/04 at 20:25:05, kycouple wrote:
Of what I have learned many of us are placed on: Prednisone or some other anti-inflamatory meds (steroidal or not) that act as an agent to knock down some of the pain while... being placed on a preventative like VERAPAMIL. Dosages vary but I think the rule of thumb is taper down ex) pred while increasing (taper up) the verapamil to a therapeutic level. What dosage/ regiment was perscribed for him? Kinda new to me as well but learning every day. I take 480 mg daily and might be increasing soon. Some take much more. some do 240. What about an abortive medication to try to knock down the attack? Imitrex, zomig, maxalt???? Oxygen? As far as side effects.... I 've only experienced constipation :-[ and some weight gain >:( It is important as far as I know to have heart rate and blood pressure monitored as you continue to use this med (verap.) I'm sure others will chime that have way more experience than me. It seems that this is a hot thread ;) See we love ya, Eric |
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Title: Re: cluster headache newbie Post by kycouple on Aug 10th, 2004, 8:54pm Hi Eric, Right now they have Steve on the step down pred and as of today, extended release verapamil 100 mg. That may change after we see the neuro. thursday tho. He will possibly put him on an abortive med I hope. The oxygen helps a little but not alot. I am really hoping we can find something that works. Not being able to do anything for him is killing me. I can honestly say that this is as hard on the spouses (in a different way of course) as it is on you all. Always in my thoughts Judy |
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Title: Re: cluster headache newbie Post by E-Double on Aug 10th, 2004, 9:05pm on 08/10/04 at 20:54:08, kycouple wrote:
Does he have a NON_Rebreather mask and how high can (LPM) can his tank distribute? Supporters are our angels and I'll tell you that there are many a time that I have to support my supporter for supporting me??????? lol seriously ... say that 3x fast ;) You guys suffer in a different but very painful way. I thank my fiance everyday and still blows me away that she still wants to marry me ;;D Hang in there and hopefully the meds will bring some relief. Eric |
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Title: Re: cluster headache newbie Post by kycouple on Aug 10th, 2004, 9:47pm Hey Eric, Steve here. No O2 at home. my friend visited me while at the dr. office. a 30 minute on nonrebreather there helps calm him down a bit so i could get home. insurance wont pay for O2. (sucks too) will try to fight them on this but dont know far this will get me. Will have to check on buying this myself if we cant work somehting out. Supervisor at work it fire fighter so I am going to aproach him tomorrow on this one.. Dont you just love this no sleep. 4 hours since saturday reminds me of 30 years ago(but awake for a lot better reasons then). I got one more question. What the hell is wrong with my dog? he dont like me much anymore. any thoughts on this. Take care, will be thinking of you all. |
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Title: Re: cluster headache newbie Post by E-Double on Aug 10th, 2004, 10:00pm on 08/10/04 at 21:47:47, kycouple wrote:
Be well and get some abortives E |
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Title: Re: cluster headache newbie Post by don on Aug 10th, 2004, 10:00pm Quote:
He senses something is wrong. He is frightened. The only time my dog would leave the room I was in was when I was about to get whalloped. Sometimes she knew before I did. Welders Oxygen works ya know. You need sustained release verapamil and ussually a much higher dose than 100Mg a day.. 480mg of sustained release is effective for me. |
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Title: Re: cluster headache newbie Post by kycouple on Aug 12th, 2004, 6:47pm Hey all its me Steve, Neruo got me in to see him yesterday. Raising verapamil slowly to 400 a day. MRI tomorrow at 1:30. Heart stress test Monday and Tuesday to see if I can handle the triptans. I guess he worried about my health. HAHA Did find one thing thats helps (walking around the block getting stupid looks from everyone). Liked the neruo thou. Remindes me of the guy with no neck and funny glasses in the movie Police Acadmey. Take care and sleep tight. |
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Title: Re: cluster headache newbie Post by FZfan on Aug 12th, 2004, 7:03pm Did he prescribe oxygen? He should have. |
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Title: Re: cluster headache newbie Post by kycouple on Aug 12th, 2004, 7:17pm Him and my Gp taking up the fight for O2. Fire fighter friend going to see if he can help. Will know some thing tomorrow. If not, welders supply here we come.. |
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Title: Re: cluster headache newbie Post by E-Double on Aug 12th, 2004, 7:21pm on 08/12/04 at 18:47:05, kycouple wrote:
Damn Funny Steve!! My favorite is when I'm still in my pajama pants & slippers, pacing up and down the block with a coffee mug in hand and chain smoking all with ice pacls on the neck and a bandana wrenched around the head! I look like a schizophrenic taking a night stroll!!! LMAO Eric |
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Title: Re: cluster headache newbie Post by kycouple on Aug 12th, 2004, 7:25pm Cant wear slippers any more, got blisters on both feet now. Hurts like hell. I will have to remeber to take my bag of frozen peas next time thou. |
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Title: Re: cluster headache newbie Post by Little Deb on Aug 12th, 2004, 7:29pm The odd effects you feel when it is not actually a hit is called a "shadow". Jayne, I think it was??? goes in and out of a hot shower during attacks. Maybe it would work for you since you like the steam off your coffee. Just a thought. I like to sit in front of the a/c full force. Sorry you are with us. Good luck. Little Deb Raleigh, NC 26 years episodic |
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Title: Re: cluster headache newbie Post by Giovanni on Aug 12th, 2004, 7:29pm In a work situation, I once used imitrex stat dose injections which would abort a single headache in less than 5 minutes. If you can, give it a try. The doc probably has some free samples you can try after the stress test results. Good luck, John |
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Title: Re: cluster headache newbie Post by FZfan on Aug 12th, 2004, 7:35pm on 08/12/04 at 19:17:05, kycouple wrote:
Outstanding! Sounds like you got some good docs behind ya there. If ya go the welder's route, ask here for advice on how to use it. Jonny and Superpain are good sources of info on this. |
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Title: Re: cluster headache newbie Post by kycouple on Aug 12th, 2004, 7:42pm I will ask about that, work is starting to suck. The place I work has good to me, but everytime I go for a walk they are watching from around the corner. I guess they are concerned, it just bugs me to no end. Like today had meeting and the girl i was with kept asking if i was alright do I need to go. Wanted to tell her off but I didnt. I call Judy's office and ask for her and if she's not at her desk they want to know if I need her right now if so they will run her down. Thats life thou (I guess). Dogs looking at me funny, a sign I need to go. Bye for now. |
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Title: Re: cluster headache newbie Post by kycouple on Aug 12th, 2004, 7:44pm Doctors are great. Heart dr going to see is friend of ours and my wifes dr. |
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Title: Re: cluster headache newbie Post by Superpain on Aug 12th, 2004, 7:57pm Shit... This new xp sp2 isn't letting me get to the letter at the ouch site... Goto the OUCH sit under the O.U.C.H menu and print out the collegues letter. Give it to your co workers. It explains things pretty well. There is also an employer letter here... http://www.clusterheadaches.org/resources/emp.htm |
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Title: Re: cluster headache newbie Post by kycouple on Aug 12th, 2004, 8:07pm All I am getting tonight is updates on XP One after another. Judy took that letter to my boss already. Explains better than I could, and boy has it made it rounds the office. When they had to come and get me from the side of the interstate I had to fill workers comp papers and I will be dammed if they did not put a copy of that letter in my personal folder(just in case) CYA I guess. |
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Title: Re: cluster headache newbie Post by Kris_in_SJ on Aug 12th, 2004, 8:11pm Hi, Superpain is right - it's a good letter that might help you with your co-workers. I'm fortunate in a couple respects (if any of us is fortunate) - My HA's only hit in the evening and night hours ... and I work for myself from my home office. This mostly makes me fortunate because I'm not surrounded by co-workers during the day. I still have clients though, which means continuing to work even though I might have an all-day kip 3-4 shadow. Got to pay that mortgage! If you're OK with your stress test, go for the Imitrex injects for use at work. Total relief in under 5 minutes, it can be done in the bathroom, and nobody has to watch you sucking oxygen. The side effects can be kind of "icky." Many people split the doses to avoid that. There's plenty of info on how to split doses on this site (one is at the left). Good luck - keep us informed - and keep ramping up that Verapmil, too. Chances are you aren't going to get much relief until you hit 360-480 mg/day. Hugs, Kris |
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Title: Re: cluster headache newbie Post by kycouple on Aug 12th, 2004, 8:17pm Thanks everyone, That the best I can do right now but maybe someday I can thank everyone in person. I did not know that so many people had so much feelings for a stranger, just knowing you all are here helps a lot. God Bless Steve |
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Title: Re: cluster headache newbie Post by Superpain on Aug 12th, 2004, 8:20pm on 08/12/04 at 20:17:37, kycouple wrote:
It's because we are the only one's who understand each other.... We're special... |
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Title: Re: cluster headache newbie Post by E-Double on Aug 12th, 2004, 8:39pm on 08/12/04 at 20:20:31, Superpain wrote:
Awe!!! So TrueBrothers and sisters!!!! |
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Title: Re: cluster headache newbie Post by kycouple on Aug 14th, 2004, 9:42pm Hey all it me again, Steve. Went for MRI yesterday(bad time) most likly will have to return for the contrast part, they got most of it befrore I had to go. Really wanted to get that over with to. Not much going on here same o same o. Went to O'Charleys tonite for supper and guess what. All in all not a bad day til then. Up to 300mg. on verapamil per day now. Judy kept me busy most all day and that seems to help some.(yard selling and I hate yard sales) But I do it for her she likes them. Found good hot pig skins thou. Take Care and have a good night. Thinking of all of you out there. |
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Title: Re: cluster headache newbie Post by don on Aug 15th, 2004, 9:39am Quote:
Someone once said; "Strangers are just friends that haven't met yet" Someone working for Hallmark no doubt. |
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Title: Re: cluster headache newbie Post by E-Double on Aug 16th, 2004, 8:12pm How ya feeling Steve??? |
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Title: Re: cluster headache newbie Post by Kris_in_SJ on Aug 16th, 2004, 8:23pm Hi, Glad you're ramping up the Verap. Sounds like it's been a better weekend for you, but ... please tell me ... what are hot pig skins? Is it something you eat? Something you toss around on a football field? And I would beg the rest of you clusterheads not to make fun of me for asking this question! Kris |
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Title: Re: cluster headache newbie Post by don on Aug 16th, 2004, 9:24pm You should start to notice a decrease in hits as you up the verapamil. Quote:
Heh heh heh. Let me think on this one. |
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Title: Re: cluster headache newbie Post by ExPat_jac on Aug 19th, 2004, 5:48am on 08/08/04 at 09:54:19, E-Double wrote:
Ahhh...my life in a sentence! We should live in the same neighborhood..at least if we did, we could share a coffee pot and form a very strange neighborhood watch! Peace bro... kycouple..... You are on the right track...and at the right place.... don't worry...the demon will NOT will Has been trying for over 35 years to win aginst me...hahaha and the bastard STILL is going to loose! (thought he did get pretty close last night :) ) ExPat_Jac |
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Title: Re: cluster headache newbie Post by ExPat_jac on Aug 19th, 2004, 5:52am on 08/16/04 at 20:23:33, Kris_in_SJ wrote:
Kris..... awww...you almost made an old southern boy cry :'( Hot Pig skins..... Barbequed Pork Rinds! Umm..ok...obvious they do not have them where you are.... Take Pig skin...deep fry in hot oil till they puff up.... Add hot sauce... Enjoy..... Ahhhh...now I am going to cry.... The closes thing to that I can get here....is dog! ExPat_Jac |
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Title: Re: cluster headache newbie Post by kycouple on Aug 19th, 2004, 12:11pm Hey All its me Steve, Staying home today waiting on O2 company to deliver, nerou got the insurance company to aprove ti. Doing some what better in the day, time nights are still bad about 3 attacks a night. Went for all the heart test Monday and Tuesday, will get test back Friday morn at nerou office. verapamil taking it toll on me, have other problems popping up now with feet and legs and stomach. Will talk to Dr. about it when I see him. Sorry about not checking in sooner just been trying to work a bit and stay busy and regain some of my old life back for now. To answer the question about pig skins ExPat_jac got it right, the ones i found were fresh, hot and good as hell, I ate a 2 pound bag over the weekend. If none of you have tried them you dont know what you are missing they are great. Had not had them for a long time. My dad made them when we were kids along with cracklins. Getting lost in my childhood now. O2 company just came got to go, will check back later. By all. |
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Title: Re: cluster headache newbie Post by Superpain on Aug 19th, 2004, 4:43pm Mmmmmm. Pig skins.... :D Yummy.... |
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Title: Re: cluster headache newbie Post by IndianaJohn on Aug 19th, 2004, 8:25pm Mmmm hot pig skins...where we are we deep fry'em without the barbeque sauce and call'em cracklin's...Gooood Stuff! Dang this prednisone! Good luck with the O2! John |
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Title: Re: cluster headache newbie Post by Kris_in_SJ on Aug 19th, 2004, 8:41pm Ok - so now I know. But let's face it guys .... I'm from Michigan! Nothing is hot here! Keep hanging in there, Steve. And good luck with your test results and the 02. It's good to try and focus on other things than your HA's. The fact is that sometimes ... even though my cycle has been over for awhile ... I tend to get sympathy "shadows" when I'm on the board very much. It can be a very "clustered" world (ha ha) and it's very easy to lose sight of everything outside the pain you're experiencing. I'm not saying that's a bad thing - don't know what I'd do without these supporters - but we still have our outside lives to deal with. Hugs, Kris |
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Title: Re: cluster headache newbie Post by kycouple on Aug 19th, 2004, 8:45pm Thanks, Cracklins are what we call them too, if you fry them til they get hard and then you put them in a 5 gallon tin bucket and pour hot bacon grease over them and let cool. GOOOOOD!!!! Now I am hungry again. Take care all. See you here tommorow. |
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Title: Re: cluster headache newbie Post by kycouple on Aug 19th, 2004, 8:51pm Kris These supporters are the best, we will just have to find a to go on. Its what we do. with help from people who know and understand. |
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Title: Re: cluster headache newbie Post by kycouple on Aug 20th, 2004, 7:18pm Hey all its me again. All the tests came back Ok today, Heart fine no extra parts in my head. Upping verapamil to 600mg per day, gave Imitex spray, And said we will try that till next friday. Hey Pat you wanted to start a neighborhood watch and share a pot of coffee, well my hood started a neighbor watch. They all had thier shades open while the O2 company was here yesterday. I guess them talking about us gives some one esle a break. |
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Title: Re: cluster headache newbie Post by Kris_in_SJ on Aug 20th, 2004, 8:30pm Wouldn't you just love to be a fly on the wall in one of your neighbor's houses? By now, I'm sure you're dying of emphysema, lung cancer or a major tumor - maybe all three! Hugs, Kris |
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Title: Re: cluster headache newbie Post by kycouple on Aug 20th, 2004, 9:04pm LOL I would love it. Just for fun, I think I will call the fire dept. tomorrow and have them come check my smoke alarms. That will give neighbors some more ammo. The more I think about this, the more fun it could be. HAHA |
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Title: Re: cluster headache newbie Post by Drk^Angel on Aug 21st, 2004, 1:58am Kris... Hot pig skins are called Pork Rinds in Michigan. I'm sure you've prolly seen the cheap, 5 month old bags of BBQ Pork Rinds in some of those old mom and pop gas stations on the side of the old state roads. Look like a bag of chips... Taste like BBQ'd fried plastic... They're much better when fresh, so it's better if ya wait 'til the next county fair, if ya live near a county that still has one. It's easy to find the Pork Rind stand... Follow the smell of bacon. Eat 'em while they're still warm... Mmmmmmmmmm... PFDAN................................... Drk^Angel |
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Title: Re: cluster headache newbie Post by ugarph on Aug 21st, 2004, 4:29pm Hello Anyone who reads this! I've had these cluster headaches all my life I'm just know figuring out. I had one about 2 months ago, started over my left eye just like it always does. It was one of the worst ones I ever had. Typically, it came after consuming a small amount of alcohol. WHAT CONCERNS ME, is that it has never really gone away. I've had almost constant nasal congestion on only the left side of my nose for almost a year, so I thought maybe just a nagging sinus infection. I finally went to the doctor and told him about my sharp shooting pains over and behind my left eye, my congestion and what not. Well I've been through 2 weeks of Amoxil, 1 week of Biaxin, went to the optometrist--nothing wrong with my vision. I finally went to an allergist/otolaryngologist and had an xray made. Nothing there. What concerns me is the duration of the attack. It's an almost constant sharp shooting pain with only brief periods where there is no pain. I've had maybe 3 days in the past 2 months pain free. CAN ANYONE HELP ME? I'm scheduled for a CT scan next week, too. A virus wouldn't cause this and last this long would it? Thanks, Lee in Hartwell |
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Title: Re: cluster headache newbie Post by don on Aug 21st, 2004, 7:06pm Quote:
Where we are we eat em live when on prednisone. |
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Title: Re: cluster headache newbie Post by kycouple on Aug 21st, 2004, 8:58pm E-Double, I am hanging in there, how are you doing? |
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Title: Re: cluster headache newbie Post by IndianaJohn on Aug 21st, 2004, 9:03pm Hey Lee in Hartwell, Please start another thread. It's kind of difficult to respond in the middle of anothers post. |
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Title: Re: cluster headache newbie Post by IndianaJohn on Aug 21st, 2004, 9:07pm Hey steve, I take the sprays too. They work fine for me, and besides, I hate needles. Good luck with it. I'm on prednisone now too with verap at 480mg/day. Finally got a little relief - whew! Best Wishes John |
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Title: Re: cluster headache newbie Post by kycouple on Aug 21st, 2004, 9:11pm Hey John, The spray seems to help me too, I started 500 mg verapamil today going to 600 Monday, down to 20mg prednisone tomorrow. Dont much care for the feeling I get on that verapamil thou. Do you have any problems with it? |
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Title: Re: cluster headache newbie Post by IndianaJohn on Aug 21st, 2004, 9:19pm I get more problems with the pred than the verap. Sometimes my BP will drop, kind of like when you stand up too fast, and I'll get a little lightheaded for a few moments. So increasing my verap dosage probably wouldn't work for me. There are two different kinds, one is a sustained release (SA or SR) and another that is an immediate release. I'm on the sustained release that releases slowly over time. Others take the other kind, just at regular intervals throughout the day. I've read threads where it seems that taking the non-sustained release can cause some problems. They report that they can feel when the verap is kicking in. With the sustained release I don't get that. Hope that helps... |
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Title: Re: cluster headache newbie Post by kycouple on Aug 21st, 2004, 9:25pm I on the extended release, but I can tell when it starts to work. A little dizzy for a few minutes. But not long. I guess the prednisone makes every thing taste funny, the only thing that taste good is lemonade. But I eat like crazy. Wierd. |
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Title: Re: cluster headache newbie Post by IndianaJohn on Aug 21st, 2004, 9:40pm Eating like crazy is definately the pred. I have to stop myself from eating everything in sight. You're on a little higher dosage than I am so maybe taht why you're feeling it.... Hope it gets you some relief! |
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Title: Re: cluster headache newbie Post by kycouple on Aug 28th, 2004, 3:18pm Still here, up to 720mg verapamil a day now. Only 2 attacks a day now, ! daytime and 1 night. The night 1 is the worst. Imitrex helps a bunch excpt for the chest pains but I got over that. Tried zomig, left me with a bad headache. Later Steve |
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Title: Re: cluster headache newbie Post by PerryGR on Aug 29th, 2004, 7:25am Hello Steve, It sounds like you're getting some relief. I'm sorry Imitrex is giving you some trouble along with the relief. I hope things will get even better soon. I noticed you didn't mention anything about O2. I have read that you had it delivered to you so i was just wondering whether it's working for you or not. PFDAN to you -and everyone else for that matter, Perry. |
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Title: Re: cluster headache newbie Post by E-Double on Aug 29th, 2004, 7:54am on 08/28/04 at 15:18:43, kycouple wrote:
Chest pains ??.... would have me calling my Dr. I got the "fuzzies" from Zomig. Funny thing is that it was the first abortive It ried (while in the Doc's office) and it worked literally in under 10 minutes. After that never really did again. Went to the shots and have been working well(especially once I started the split trick) Are you taking a full injection?? sometimes too much for many! I'd be cautious with the chest thing. Better safe then sorry. Glad you're catching a bit of a break. E |
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Title: Re: cluster headache newbie Post by kycouple on Aug 29th, 2004, 11:36am To make my self more clear, I am using the spray. Talked to Dr. about the chest pains, he said that should stop after a few more uses. Last night when I used 1, had a little tightness in chest and it did not last but a minute. He said he did not want me to use zomig any more. Going back to see him Tuesday afternoon. The O2 is working out fine. Used 3 bottles so far. Will calll tomorrow and more delivered to me. They are leaving 4 bottles at a time. Suppose to go on vacition next week, Might have to change plans. Leaving that up to Judy. Later Steve |
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Title: Re: cluster headache newbie Post by Kris_in_SJ on Aug 30th, 2004, 8:02pm Hi Steve, You and your lovely wife have started a pretty incredible thread here. Since meeting you I now know what hot pig skins are, where to go to find them, and if I can't find them there, I can go to Indiana John's house and get some! On another note - have you tried Melatonin? There are several excellent threads here about it. It's helped many a clusterhead with those nasty nightime hits. It's inexpensive, sold OTC and is all natural. I take 9mg every night before bed when I'm in cycle - has really helped! So glad to hear you're feeling better. Can't speak to your dose of Verapamil - never had to go that high (yet). My only problem was with the MAJOR CONSTIPATION it caused. *smile* Kris |
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Title: Re: cluster headache newbie Post by kycouple on Aug 30th, 2004, 8:45pm I always say, if you learn some thing its not a bad day, even if it is about hot pig skins. Never tried Melatonin. Where do you get it? Off the prednesone now. It made me eat like crazy and the varapamil( well you know). Tried everything and then some. Next step is White Castle hamburgers. I hate them but they work. Around here they are called rectum rockets. HaHa Almost got in a full week of work last week. Been almost a month missing every other day. And as my lovey wife goes, she is the best. Would not know what to do with out her. Take Care Steve |
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Title: Re: cluster headache newbie Post by IndianaJohn on Aug 30th, 2004, 8:57pm White Castle Rectum Rockets! LMMFAO! Kris, just let me know and I'll get cracklin's some frying in a kettle for us. |
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Title: Re: cluster headache newbie Post by kycouple on Aug 31st, 2004, 8:08pm Hey everyone, Some thing happened last night that has not happened in a long time. I got a full nights sleep. Felt great this morning until about 1 pm. thats when they came back. Damn. Thought I was doing good. Went back to Dr. today. Staying on 720mg verapamil for another month. Later Steve. |
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Title: Re: cluster headache newbie Post by Kris_in_SJ on Aug 31st, 2004, 8:39pm Hey Steve, So glad you got a full night - that's a special treat for us clusterheads. Does this mean you're now down to just one HA/day? I'd still recommend the Melatonin. You can buy it at any drugstore, and in many grocery stores (it's a natural supplement sold in the vitamin section). Be sure to get the 3mg tabs (it's sold in several different doses). Take 2 or 3 tabs about an hour before bed. Some people say it gives them really vivid dreams. I say vivid dreams are better than a waking nightmare! And ... I'll remember the White Castle trick for next cycle! As for you, Indiana John .... I'm just over the Michigan/Indiana border. Just might take you up on that "cracklin" offer someday. Hugs to all, Kris |
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Title: Re: cluster headache newbie Post by kycouple on Aug 31st, 2004, 8:58pm I hope I am down to 1 a day. Going to look for Melatonin when we go shopping again. Dont go out much just work when I feel like it. Stay home most of the time any more. But got to go soon running out of food. Vivid dreams might remind me of young days. when I partyed a lot. Steve |
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Title: Re: cluster headache newbie Post by kycouple on Sep 8th, 2004, 9:23pm Hey everyone, Thought I would check in. Down to 2 attacks a day now. Varapamil seems to be easing them off. Its about time. hope everyone doing ok out there. Going to try to get away for a couple of days, going to meet my brother in Nashville In. never been there but heard it is nice. Take Care |
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Title: Re: cluster headache newbie Post by E-Double on Sep 8th, 2004, 9:27pm sounds like some relief. glad to hear it :) have fun on your trip and don't forget your meds ;) best, Eric |
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Title: Re: cluster headache newbie Post by Ruth on Sep 11th, 2004, 10:46pm I have spent many days reading posts. It is just so weird to read all the things I have done for years to try to get through the cluster hits. I stopped going to doctors for several years because I never could find any help. I learned triggers on my own, I found pressure points, crazy postions to get myelf into for some kind of relief, even as some have done crying banigng my head on the wall, wishing for death to come. Finally one day I found my rocking chair and I rock and rock very fast as the pain gets stronger, hold my head and weight and hope that this is not going to be one of the really bad ones and when it is, I don't no I just start moving and just sort of loose my self and my mind for a while. I don't no how I managed all these years and to raise two boys during these episodes. I think at those times they must have transformened into little Angles. Now I have 5 grandchildren, and have found a bunch of good people that no me and what I go through. I am so glad to be able to share things with you. :) |
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Title: Re: cluster headache newbie Post by kycouple on Sep 23rd, 2004, 4:28pm Hey everyone just to let you all know, it has been 4 days with only a shadow HA. This one has lasted 24 hrs. so far. Now a question. Are the CHs gone or is it the meds. Will find out. Back to the Dr. on Tuesday. Hope he will start cutting back on the verapemil and see what happens. Take care all. Steve |
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Title: Re: cluster headache newbie Post by E-Double on Sep 23rd, 2004, 9:30pm Glad to hear you're feeling relatively well. I hope it continues brother!!! Don't really have answer for ya though, it could be one, the other, or even both. Sorry... just enjoy it regardless :) Best, Eric. |
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Title: Re: cluster headache newbie Post by Kris_in_SJ on Sep 23rd, 2004, 10:11pm A word of caution Steve, Wean off the Verap very slowly! If fact, I'd wait until even the shadow is gone before trying. I'm still weaning - 2 months after the shadows. So far I can't get under 240 mg/day without those little twinges coming back. What's that old saying? ... Slow and steady wins the race? Do it slow, buddy! Many Hugs - so glad things are better! Kris |
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Title: Re: cluster headache newbie Post by kycouple on Sep 28th, 2004, 8:16pm Hey everybody Got back from Dr. Slowly taking me off verapamil. Going to see what happens. Started me on Elavil for this shadow HA I have had for a week. Anyone tried this. 1 for 3 days then 2 for 3 days then 3 for 3 days. At bedtime. Our local TV station ran a spot on CHs tonite. Nothing new. Hope everyone is doing Ok tonite. Take care, Steve |
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