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Title: Hi there! Post by boohoo on Apr 29th, 2008, 10:16am Hi everyone, My name is Jeannie. I have been logging on for a couple of weeks now. I am very glad to have found you all but , at the same time, sorry you all are here. I have been getting these headaches since I was 10 years old. I am now 37. I was told that I had migraines. They have always occurred in the spring. When I was a kid, I was told that I got them in the spring because of chocolate. ( I always got chocolate for Easter.) I can remember crying and begging my mom to help me during an attack. I think she thought that I just didn't handle pain very well. She got migraines and didn't act like that. When I was 21, they disappeared. At 24, they were back worse than ever. That was when I was diagnosed with C H. I have learned a lot by reading all of the info. that you guys provide. I am grateful. In early Mar I started taking Verapamil. So far, I have not had an attack. I have spent a couple of weeks where I have felt one coming... I think you refer to that as a shadow? But as of now, I am doing ok. My biggest problem right now is fear. I can't seem to think of anything other than C H. I worry all the time. My husband says that I will "make myself get one" if I don't stop. He really does try to be understanding but if you have never felt the pain, you can't really know what is is like. I feel like I am so hard to live with. I feel guilty even talking to you all about this because so many of you are suffering right now. I am just worrying. Anyway, I feel a little better. with the ammo that you all have provided. Maybe I'll be more prepared, thanks to you guys. Thanks for listening! :-* |
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Title: Re: Hi there! Post by Guiseppi on Apr 29th, 2008, 10:27am First off don't EVER aplogize to us! ;) No one here will EVER tell you it's just a head ache. We understand exactly what you mean. What else do you have besides verapamil? Certainly a widely recognized preventative medication that has helped countless sufferers but do you have any abortive medications? I us oxygen as my first line abortive. I can be completely pain free in as little as 6 minutes. Read the lik on the left, the three key points are: It must be started at the first sign of an attack. Pure oxygen at a high flow rate, 15 LPM or better, using a NON RE BREATHER mask. Re breathers and nasal canulas are worthless for CH. I occasionally have to resort to imitrex injectables but as well as oxygen works that's the exception. Greatest thing about oxygen is it has taken that "fear of the beast" away from me. When I had nothing to fight it with, I'd damn near start crying at the start of an attack because i knew what was coming. Oxygen gives me a "bring it on" attitude! Glad you found us, let us know what all you use and we'll do all we can to help you. Guiseppi |
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Title: Re: Hi there! Post by DragonSlayer on Apr 29th, 2008, 10:35am Hey boohoo So sorry you came looking - But damn glad you found us!!! Welcome to the Clusterville Nuthouse ;;D. Others with more knowledge about the meds will also post helpful information to answer your questions. There are many here who have studied this beast and will offer help to get you sorted out. Like Guiseppi said 02 O2 at 15 lpm with a nonrebreather mask at first sign is helpful to most, slam an energy drink (Taurine & caffeine) like Red Bull, Ice pack or a bag of frozen veggies on head and neck. Again Welcome! There is alot of info here pull up a chair and read... Read... Read... |
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Title: Re: Hi there! Post by boohoo on Apr 29th, 2008, 10:44am I can't believe that someone has already answered me. Thanks! I have taken Prednisone, only for a week at a time. It works while I am on it. Imitrex is my best friend. I have to take the pills because my insurance will only cover 2 shots a month. ha ha right? It is like a cruel joke. With the pills I can at least get 9. I have been stock piling. I currently don't have a doctor. so I cannot get any more meds. Hopefully I can get through this spring with what I have now. |
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Title: Re: Hi there! Post by RichardN on Apr 29th, 2008, 11:01am Hi Jeannie & Welcome to Clusterville And do know that all here are very familiar with the very real FEAR of these things . . . we understand. The second "locked topic" on this board is "Letter to Employers and Colleagues". Print this out and give to friends/family . . . may help them understand a little more of what you go through. 02 02 02 . . . Like Guiuseppi said, having 02 available for instant use takes away a great deal of the "fear of the beast". I can't use triptans (some artery blockage and high cholesterol), so 02 is my only abortive . . . works for 70% of us. . . . and cheap . . . in the event you don't have insurance that will cover it. Keep reading . . . keep asking. The answers/info/caring/sharing you will get here comes from folks who truly know your pain.. Be Safe, PFDANs Richard |
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Title: Re: Hi there! Post by boohoo on Apr 29th, 2008, 11:10am Do you need a doctor to write a script for oxygen? |
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Title: Re: Hi there! Post by RichardN on Apr 29th, 2008, 11:24am Yes . . . you do need a script for medical 02. "12-15 lpm through a non-rebreather mask . . . as needed" But, if you can't go the medical route, you can get welders 02 (same stuff) . . . and there's plenty of info here to help get that set up. Make sure you read the "oxygen info" (link on left). If you go the welders o2 route, contact Jonny and he'll guide you through that process. DO NOT tell the welders supply you'll be using it for medical purposes. Richard |
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Title: Re: Hi there! Post by Guiseppi on Apr 29th, 2008, 11:27am Yes and no! To get medical oxygen it requires a prescription. Welding oxygen is exactly the same as medical oxygen, comes out of the same tank, and does not require a prescription. There are some people on the board who are really knowledgeable about the "welding oxygen" option who'll post some pics and explain how to get you started. It really should be your first line abortive as it's just so danged effective for so many. Guiseppi |
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Title: Re: Hi there! Post by DennisM1045 on Apr 29th, 2008, 12:16pm Hi Boo! And welcome home... You've suffered long enough. Now its time to educate yourself to take your life back. I found this site last year and what I've learned here has given me my life back. What HAs I do get are much less severe than they used to be and I kill them quicker. I bring my oxygen tanks and my backpack everywhere I go. It gives me the confidence to go out to dinner with the family, work full time, attend my kids activities, ... you get the idea. You have to live between the hits. Living in fear is not living. Like you I'm on Verapamil. To abort HAs I use O2 with Imitrex injections as backup. My insurance company BCBS has dosing limits of two injections a month too. I found a Quality Care Dosing Limitation Override form on the insurance company web site. Had my Neuro fill it out and got my quantity upped to 2 injections per week. Not that I'm using that much. So, push for the O2 and get your life back so you can enjoy your family and life again... -Dennis- |
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Title: Re: Hi there! Post by Superdave on Apr 29th, 2008, 12:28pm Hi boohoo, Welcome to clusterville, Don’t worry it’s OK to cry here we all do it. :'( Cry, bitch and complain all you want it’s included in your membership. :) Don’t forget to try some redbull or other energy drinks containing tauren and caffeine it may help with those shadows your having. Glad you joined us Sorry you have to. A good place to be in a bad time Superdave 8) |
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Title: Re: Hi there! Post by boohoo on Apr 29th, 2008, 12:31pm I guess finding a new doctor is the first thing I should. I was just wondering if any of you get anything weird before you actually get a H A? Along with the kind of "phantom H A" I also get this eye twitch. It can happen for days or weeks before a cycle. No one else can see it... I just feel it. Both of these ( phantom H A and Eye twitch) have been going on for a while. I will check into the 02. Thanks, Boohoo |
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Title: Re: Hi there! Post by Guiseppi on Apr 29th, 2008, 12:40pm I get the eye twitch before a cycle begins. Often times my eyelid will start the "lazy droop" before a cycle begins. My wife will give me the "uh oh you're eye is looking funny" before I'm even aware of it. I also get a funny "oh crap it's coming back" feeling in my stomach days or even weeks before the real cycle hits. Guiseppi |
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Title: Re: Hi there! Post by boohoo on Apr 29th, 2008, 1:09pm I feel like such a baby that it is consuming so much of my life and I haven't even been hit yet this year. I know it is just waiting............... Do you think worrying about it makes it more likely to happen? Do you think that it is possible to have all of the warning signs and not get hit? So far, I have always been right when I think they are back. I was just hoping that taking the verapamil before getting hit would make a difference. I usually start it after my cycle begins. Last year I was having H A 2 a day from Mar till the end of Jun. I don't think that the verapamil made a bit of difference. Thanks again Boo |
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Title: Re: Hi there! Post by brewcrew on Apr 29th, 2008, 2:30pm on 04/29/08 at 13:09:56, boohoo wrote:
I know one thing - you ain't livin' right now. The beast has got you by the throat and you ain't even been hit yet. All this time he's had you is time you ain't gettin' back. And by virtue of that fact alone, he has won this round. You gonna let him win the fight? |
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Title: Re: Hi there! Post by DennisM1045 on Apr 29th, 2008, 7:36pm Sometimes stress can bring them on. It sounds to me like your preemptive strike with the Verapamil might be doing the trick. Stop worrying. Find a Dr and turn the tables on this bastard. It can be done. I've done it myself and I'm not superman. -Dennis- |
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Title: Re: Hi there! Post by Charlie on Apr 29th, 2008, 10:02pm Hi Boo and welcome aboard. You are already getting some good advice here. I suggest that you share some of this info with your family if you are not connecting with then on this. It can't hurt. You asked if we got auras before a hit.....I did sort of. My face got warm and my eye began to tear. It's a circulatory effect. They would hit rather quickly after that and last 20 - 30 minutes and suddenly "drain away." I didn't take much other than Inderal which is not considered effective for most but I did use a technique. I hope you give it a try: 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. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. 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. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments. 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. I used to try to imagine I was pushing blood away from my neck 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. Charlie |
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Title: Re: Hi there! Post by kevmd on Apr 29th, 2008, 10:59pm Hey there, Your dam right we are hard to live with. But its not our fault. I guess I would be pretty frustrated if my wife continuously suffered from something with no cure. CH does consume the mind. I had a 4 year remission but the fear of CH never left me. This time around, I am better off as I am using o2. But I still worry and at my worst, I want to crawl into a hole and cry myself to sleep. Some how, we all manage to pick ourselves back up. And when I can't pick myself up, the people here give me a swift kick back to reality. Stick around, this is your new second family. |
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Title: Re: Hi there! Post by boohoo on Apr 30th, 2008, 9:48am Hi everyone, Thank you all for your suggestions and words of encouragement. I can tell that you all are a really nice group of people that really care about one another. Thanks for letting me in. I can't believe that it took me so long to find this site. I am not very computer literate. I have been reading some of the general posts. I am surprised at how many women suffer from CH. I really thought that I was a minority. There are many more than I expected. When I was diagnosed, the Dr. said that CH in women was very rare. That was a while ago though. I woke up during the night with a very strong shadow. My right eye feels irritated and I have begun to notice that ache in my right shoulder, neck and arm. ( I have never been able to figure out if that is part of the HA or if it is tension due to the stress of it all.) Still have not had the real thing though. I am going to try to start counting my blessings rather than waiting for the worst. It really is nice to be able to talk about it with people that really know. I couldn't wait to get to my computer today. I guess that I really should get to work though. Hope you all have a great PF day! Boohoo/ Jeannie |
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Title: Re: Hi there! Post by seasonalboomer on Apr 30th, 2008, 10:24am on 04/30/08 at 09:48:56, boohoo wrote:
oh there still aren't that many women -- they just talk a lot more! ;;D (just kidding -- yes a lot of wimmen out there) |
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Title: Re: Hi there! Post by Guiseppi on Apr 30th, 2008, 10:25am I am going to try to start counting my blessings rather than waiting for the worst. Now you're on to the right attitude, we call it "living your life between the hits". And yes. like it or not, you're part of the family now...it's like a gang...we never let you leave! ;;D Guiseppi |
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Title: Re: Hi there! Post by boohoo on Apr 30th, 2008, 4:13pm Hi again, You guys said to ask questions so I'm asking. Due to increased shadows I am upping my Verapamil. 380mg is as high as I have been and what I am up to now. I feel really tired when I am on that much and had tried to decrease it to half but I think I tried to lower it too soon. Does it affect anyone else this way? Boo |
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Title: Re: Hi there! Post by Brew on Apr 30th, 2008, 4:18pm Yes, verapamil makes me tired, too, Boo. Everything is a trade-off. It all boils down to which is worse, and only you can make that choice. I'm assuming you've consulted your doc about the increase? |
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Title: Re: Hi there! Post by Guiseppi on Apr 30th, 2008, 4:19pm I've seen people at as high as 960 a day before they found relief. That being said, I hope you are working closely with your doctor as far as your dosing levels. Verapamil is a strong medication and any increase or decrease should be monitored by your doc. Good luck! Guiseppi |
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Title: Re: Hi there! Post by Brew on Apr 30th, 2008, 4:23pm on 04/30/08 at 16:19:48, Guiseppi wrote:
Copier. |
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Title: Re: Hi there! Post by boohoo on Apr 30th, 2008, 4:53pm Its kind of a long story about the doctor.................. I went to a neurologist years ago when I was in a cluster. That was when I was first diagnosed. She gave me imitrex, prednisone and verapamil. She prescribed 380mg at that time. She ended up leaving the state to take another job. I hated to see her go. I really believe she saved my life back then. I fooled around and didn't get another neuro until I was in another cluster. It was such a bad time that I actually got lost on the way to the new doctor's office. I couldn't think. When I called to tell them that I was running late they said that they wouldn't see me. In tears, I called my GP at the time and he got me in. I pretty basically told him what the first neuro had given me and he prescribed the same. The GP I had has since retired and I have not found a new Dr. I am using the meds that I have been stock piling trying to prepare for this time of year when I know I have my clusters. I didn't even know about the 02 until you guys told me about it. I have 27 imitrex pills and one more month supply of verapamil left. I'll have to get a new Dr. soon. Hope that all made sense. Boo |
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Title: Re: Hi there! Post by Guiseppi on Apr 30th, 2008, 5:03pm It does and I understand. We gently (and lovingly ;)) remind each other constantly to stay in touch with our doctors when we adjust meds. I did a lot of stupid stuff out of frustration that will possibly cause me long term health problems in the future. (stuff like having all your friends horde prednisone and staying on it for 6-8 months at a time :-/) I still stockpile when off cycle so I'm always ready when they show back up again. As much as you hate even thinking about them when off cycle...cuz I do too!!!....it's best to get on the patient list of a good neuro, get all the groundwork done so when you go back on cycle you're both already on the same page! All said with love AND understanding! [smiley=hug.gif] Guiseppi (And Brewman...the clock shows I beat you by a FULL minute.....and tell your team I said they're welcome for Cameron....sigh...) |
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Title: Re: Hi there! Post by Brew on Apr 30th, 2008, 5:09pm on 04/30/08 at 17:03:44, Guiseppi wrote:
Ahem - I believe it shows I beat YOU by a minute. ...and tell your team I said thank you. That guy has wings on his shoes. |
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Title: Re: Hi there! Post by boohoo on May 1st, 2008, 10:12am Hi again, Still having strong shadows. My right eye has started the watering and is blurry. Right nostril feels swollen. Stayed awake for a lot of the night because I was afraid to wake up. Trying to not worry but it is hard. I almost feel like the HA is teasing me as I still haven't been hit yet. grateful for that though. I think I'll try the RedBull. Been avoiding it cause I can't stand the stuff. Sorry for bring a whineyass again. Thanks for listening. Jeannie |
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Title: Re: Hi there! Post by Brew on May 1st, 2008, 10:15am on 05/01/08 at 10:12:23, boohoo wrote:
Next time you're out, buy some NOS. Same caffeine/taurine amounts per serving (or close). Comes in three flavors - passionfruit (original), fruit punch, and grape. Soooo much more palatable than Red Bull. |
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Title: Re: Hi there! Post by boohoo on May 1st, 2008, 10:40am Thanks! Jeannie |
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Title: Re: Hi there! Post by DennisM1045 on May 1st, 2008, 12:17pm Rock Star is another alternative. I got to like the taste the first time it knocked out a hit ;) -Dennis- |
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Title: Re: Hi there! Post by Brew on May 1st, 2008, 1:06pm Thus proving that all of Dennis' taste is in his mouth. ;;D |
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Title: Re: Hi there! Post by DennisM1045 on May 1st, 2008, 2:46pm on 05/01/08 at 13:06:57, Brew wrote:
;;D I'm a proud member of the "I'd drink 30 weight straight from the can if it would knock out a hit" club. -Dennis- |
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Title: Re: Hi there! Post by Batch on May 1st, 2008, 9:51pm Hey Jeanie, You've received a lot of great advice... Now take the time to get a prescription for oxygen. Shoot'n shadows with O2 is a hoot... You've no idea how wonderful it feels to gain control of your life again once you start using oxygen therapy and gain the confidence of knowing you can beat the beast. Take care, V/R, Batch |
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Title: Re: Hi there! Post by torro2005 on May 1st, 2008, 10:06pm Hello Jeannie, also just came here and reading reading..time plenty cause it's my third wake-up shift this night.. I'll give you a tip to lenghten the use of your 2 imitrex ampuls a week. I do it all the time cause I have well over 2 attacks a day and 2 ampuls a day is the max you may take. It goes like this: pull out the ampul of the box and scraths down the paper around it so you can see the total amount of fluide. Take a stick or something that fits in the ampul with which you can inject the fluide (I mostly use a ballpointfill but anything that fits will do offcourse). Bring in the needle (I do the stomach so I can easely use both hands) and press half an amount in to start with. It's important you inject as soon as possible so start injecting as soon as the shadow or attack comes up. If it works also with you, you dubbel the use of your Imitrex-ampul and you can start trying to inject a third of the amount. This mostly often works also with me. So then you triple your ampul-use. I asked a doctor and it's only recommended you donn't exceed 12mg in 24hours and leave a minimum of one hour between 2 injections. I also make a very strong cup off coffee rightaway I feel one's coming and drink it fast right after I injected, first running it through my mouth before swollowing (the caffeine absorbes faster then). During an attack I sit or stand comletely still (not always possible if it becomes too bad..), breathe with open mouth and concentrate fully on my neck which I move very slowly on the painwaves trying to search and move between them. It helps me often. Hope it can be of some help to you too. Gerard |
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Title: Re: Hi there! Post by boohoo on May 2nd, 2008, 9:20am Hi, Thanks to all for all the great advice! I woke up feeling pretty good this morning. Not much of a shadow at all. Tonight is usually "date night" with my hubby. I'll have to skip the couple of beers though.(again) Hope that you all have a great PF weekend! Jeannie |
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Title: Re: Hi there! Post by RichardN on May 2nd, 2008, 11:28am Hi again Boo Make sure you take the 02 info with you when you see your next doc. DON'T leave his office without the script. 02 IS a recognized abortive for CH . . . and if he won't consider it . . . leave and seek another. Re upping the Verapamil. Giuseppi is right about the monitoring. Verapamil affects blood pressure . . . which is why I stopped using it four years ago . . . my BP got uncomfortably low. Also, some folks have (and some don't . . . I did) problems with constipation while on Verapamil . . . very easily remedied with diet change or stool softeners. Just wanted you to be able to identify the cause if you have that particular symptom. Be Safe, PFDANs Richard |
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Title: Re: Hi there! Post by Jean on May 4th, 2008, 3:17pm Hi, I just wanted to thank everyone again for all of the great advice and for responding to all of my questions and posts. It really is nice to talk with people who are going through the same kinds of things that I am. (though I wouldn't wish it on anyone and I am still grateful that I have not been hit as of yet.) By Friday evening my shadow was back along with a twitching and tearing eye. I went out and got a Rock Star energy drink. It helped a lot! Wishing you all a wonderful and PF week ahead! Jeannie |
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Title: Re: Hi there! Post by mezza on May 4th, 2008, 10:04pm Hi jean I can relate to the 'afraid to go to sleep because you fear an attack in the am' had plenty of those nights this past cycle. you may want to talk to your neuro about your dosage of meds- I take 660 mg of verap- 240 in am 240 around 3 and 180 at night- he determined when to increase the dosages based on my pain- I was seeing him every 2 weeks when in full cycle - now will taper back down soon good luck to you kelly |
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Title: Re: Hi there! Post by DennisM1045 on May 6th, 2008, 12:52pm Hi Jean, You really need to find a Dr soon. I don't mean to scare you but Verapamil really needs to be observed by a medical professional. Over a long period of time it can cause heart rythm problems. They go away when you stop using it. My Neuro and GP work together to make sure I get regular EKGs. -Dennis- |
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Title: Re: Hi there! Post by Brew on May 6th, 2008, 1:37pm Another thing to look into, boo - I've heard that taking anything with taurine (i.e., Rockstar) while on verapamil is a no-no. You might want to do a little research on this. I don't know any further details. |
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