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Title: I feel like I found my long-lost family ;) HELLO Post by Mikella on Sep 30th, 2007, 5:59pm I am elated to have found this site............. I don't know a single one of you personally, yet I feel as if I have a hundred new best friends.. (or however many people post here ;)). I'm not feeling very good right now.. (SURPRISE lol), but I just had to write. I'll be back to tell my story.. which probably isn't the typical story. Basically, I'm a chronic sufferer, I'm 22 years old (in a few months), and I've suffered for 10 years..... and didn't know what exactly it was until literally a few days ago. Cluster headaches have absolutely ravaged my life. And I tried over and over and over and over to have doctors take me seriously and actually LOOK INTO what was going on.. to no avail. The neurologist I saw on Sept. 25 (just last week) was a condescending prick that looked at me in disbelief the whole time.. I was in his office for not much more than 10 minutes, he basically said there was nothing wrong, it was my state of mind that was causing them, prescribed me topomax and shooed me out the door. It was an ENT a few days later that began to figure things out (again just last week).... I've been thinking all these years "GEEZ I must have major sinus problems for them to be causing me this amount of pain all the time when I get blocked up.............".. and then he told me that my sinuses, while they looked like they've been through a battle, were PERFECTLY fine.. and shouldn't cause me any trouble. I went home and researched and researched what he had mentioned ("cluster headaches")... called him a few hours later, he called me back in 5 minutes, and we were on the same page. I was AMAZED.... EVERY THING I read about it.... it was me. It described me to a T..... chronic cluster headaches. I've figured EVERYTHING out, basically I have continuous cycle after cycle, that last about a month.. so it builds and builds over about 3 weeks, I hit my peak, then it GRADUALLY decreases.... then it builds again, etc. Because I've dealt with this for so long, before knowing what it was, I was so used to the pain and the off-the-wall experiences with the types of pain and physical things that would happen, etc.... that it was just PART OF MY LIFE. Now that I know exactly what it is, I realize when things are happening... and every time, it makes more and more sense. When I would hit my "peak", I would lose my mind, every time.... it's, as you all know, NOT something you can EVER get used to. None of this pain, have I ever been able to get used to..... I just didn't think much of it, if that makes sense.. it was never anything new. I don't know what it is like to have a normal feeling head...... my head is always... 24/7, in pain. So anyways.. when I would hit my peak, I would literally feel like I was going insane.......... every time. No amount of medication would help (which now also makes sense). I would thrash and pull my hair and scream if I was alone, and cry, and pound my head.... and think to myself, "why do I have to live like this?"................................. "Nobody else experiences this. I CANNOT go on like this........" ..And now I know. That there are too many other people out there that suffer just like me. I admire each and every one of you, and I look so forward to getting to know you. I just cried when I started reading your posts........ and looking at the pictures of you...... Anyways, so much for waiting to tell my story. This isn't the half of it though. The rest I'm sure will come out soon lol There's another twist because I have a heart condition..... so I'm unsure where we will go in terms of treatment. I cannot tell you all how.. shocked, uncomfortable, happy, scared, anxious.. EVERYTHING.. I feel finding out what has been wrong with me and ruined my life for 10 years. And on top of that, knowing that there are indeed others like me. So... I'm Mikella, and it's a pleasure to meet you. "Know how sublime a thing it is.. to suffer and be strong" HWL ..Remember that. Love to you all. & as you perfectly put it: "PF wishes".. ;) |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by assaultme on Sep 30th, 2007, 6:25pm Well then....WELCOME Mikella !!!! You have come to the right place. I was only diagnosed about a month or two ago and already the good people here have got me squared away. The people here will (from experience) be able to point you in the right direction no matter what your question or concern. Welcome aboard the "pain train" ;;D Cheers, Dave |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Ray on Sep 30th, 2007, 7:02pm Welcome to Clusterville, Mikella. I'm so sorry that you have cluster headaches, but they are treatable, and in many cases preventable. Please explore the links to the left, particularly the "oxygen info". The OUCH website has some patient recommended doctors, perhaps even in your area. Wishing you PF days and nights, Ray |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Rosybabe on Sep 30th, 2007, 8:11pm Welcome HOME Mikella! Glad you found us, no so happy for the reasons, but are here and we love it :). Tell us what you are taking,, Have you tried Oxygen? There is also Red Bull and Melatonin for night hits until you get a proper Rx from a good Doctor... one more thing ...nice to meet you too ;;D Wishing you lots and lots of pain free time!! Rosy. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by CostaRicaKris on Sep 30th, 2007, 10:38pm You are not alone! I know what it's like to have Dr.s treat you like you are nuts, or like you just want drugs (the last thing we want especially since most of them don't work.) I feel like I found a home here too. It's so wonderful to be able to communicate with others that truly understand the pain and he fear that we all know too well. ~Kris |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by George_J on Oct 1st, 2007, 2:21am on 09/30/07 at 17:59:47, Mikella wrote:
No, it isn't. If there's any one truth about clusters--it's this. You can learn to live with it, learn to control your reactions to it, shape your attitudes toward it, but the pain of CH is not something you can ever get used to. That's not possible. The only thing that gets easier, really, is that you know it will end--and you'll survive it. I have a friend who recently recovered from shingles that affected the trigeminal nerve. He told me later that if the nerve pain that he felt was even a hint of what I've seen over the past forty years of episodic CH, he can't understand why I'm still alive. Sometimes, neither can I. Just stubborn, I guess. Best wishes, Mikella, and warm welcome. George |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Lotus on Oct 1st, 2007, 6:39am Welcome home Mikella, Nice to meet you and painfree wishes. I hope you will find the med combos that will work well for you soon. Annette |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by barry_sword on Oct 1st, 2007, 7:17am Welcome Mikella, you are not alone anymore. I remember the "I am all alone with this pain" feeling all to well. Any thought of o2? It works for most folks here as a abortive if caught at the first sign of an attack. Read lots here and let us know how you are making out. You are with your new family now. Barry |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Omer on Oct 1st, 2007, 9:57am Welcome home Mikella, after a month or so, I can say that the things you might read, see or hear in this forum will never come to you from a doctor point of view, they just can't understand the intensity of those pains. Hope to hear from you some more soon... Omer |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 1st, 2007, 10:54am Thanks for the wonderful welcome :D I can tell I'll be spending a lot of time here - you all are fantastic. It's nice to feel like I just don't have to explain anything...... I know you all understand. I'm sure I'll talk more about my story sometime, but for now I have QUESTIONS! #1 Tomorrow, I have an appointment with my doctor, and I'm going to ask to be prescribed oxygen. Can you tell me what exactly to ask for? I have to research about oxygen to understand the terms, etc... #2 Whereas I have chronic ch's, I have pain in my head 24/7... If I were to use the oxygen every day, could it help? (Rather than ONLY when the pain elevates)..? From what I understand, you call them "shadow" headaches here (?) #3 I'm going to be hearing back from the ENT I saw last week, TOMORROW. I am scared shitless that he will say that when he spoke to the neurologist, the neur said that he would not diagnose me, and that it's in my head, and not work with me............ What do I do? I keep telling myself that if that is the case, as long as I can start some sort of treatment, that is all that matters.. and I will eventually get in to see a better neurologist that isn't such a douche. I was literally in his office for about 10 mins............ and he looked at me like I was stupid the whole time. Obviously he's never experienced any sort of pain like this.. I hope he never passes by another person like me. Actually, I hope he breaks a leg, too. Am I ever going to give him a piece of my mind.... (after I find out whether he'll see me again or not ;))... even if he says he will see me again, I will be set up to see a new neurologist as well.. because I really don't wish to deal with him. If he used his BRAIN, he would have EASILY figured this out......... he just had to work with me a bit. How was I supposed to know what to tell him? I didn't KNOW what I "had"....... Anyways........ #4 What can I do to help the DAILY pain? I've read that redbull (specifically, an ingredient in it) helps. I don't want to load myself up on stimulants though, as I have huge problems sleeping.. (which I actually thought was CAUSING my excruciating pain.... but I guess it's mostly the other way around). So, I've read you can take taurine in supplement form.. are there any side-effects? What dose should I start at? Where can I get it? #5 What other supplements could potentially help? I read about melatonin as well, could you tell me some about that? #6 As far as meds go, I'm not sure what I will be on.. because of my heart. I'll update tomorrow and let you know what the ENT says about his talk with the neurologist. #7 Do any of you have neck problems? I've had severe neck problems that I've been treated for many times.. and I'm curious to know whether they are related to the beast (perfect term). Or not... (because I have scoliosis as well). #8 I don't have insurance right now, since I'm not in school.......... Is "cluster headaches" considered a disability? I'm also on other meds.. for my depression, my heart, and my ADHD.......... now that I'll be on more meds.... it's going to be yet again more expensive... #9 Do you have any advice for me? About things to avoid doing, etc? Scents have a HUGE impact on me, temperature, etc.. Well, I'll end there for now.... I realize that these are things I'll find out with more reading, but I have to admit I'm pretty overwhelmed right now, and just want some answers..... You guys really are the experts. Don't worry about answering everything ;) But anything you can tell me will be greatly appreciated. I will do ANYTHING to get the ball rolling here and hopefully decrease my pain.. Many thanks and PF wishes to you all. I hope you're doing ok today. Talk soon [smiley=heart.gif] |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by George_J on Oct 1st, 2007, 11:40am on 10/01/07 at 10:54:01, Mikella wrote:
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Rosybabe on Oct 1st, 2007, 4:31pm Just adding to what George already told you.. avoid alcohol and smoke, they are normally triggers for most of us... if you don't have insurance there is always welders Oxygen... there are also alternative medicines you can use that are over the counter and fairly cheap like Kudzu..there is a thread about Kudzu and its benefits in the specific board. You can also get information here.. http://www.clusterbusters.com/ Good Luck Mikella and don't be afraid to ask what you need to the Doctor, he is there to listen to you , demand it if necessary :). HUgs and PF wishes to you.. Rosy. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by PollyPocket on Oct 1st, 2007, 6:54pm HI Mikella! Gather as info as you can from here, 02 info etc, and take it with you to the doc. Also a HA diary is a good thing because your doc/neuro can then SEE the pattern, not just take your word for it. Another good daily weapon is ice packs for the affected side (a long standing joke here is that peas are our best friend- the frozen bagged kind, that is! makes a handy ice pack in a pinch) We've all been where you're at and nope, you're not alone hon. Not any more. Welcome to the family. PM me anytime you wanna just chat. :) Hugs, Jen |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by CostaRicaKris on Oct 2nd, 2007, 12:51am I think a lot of us (if not all of us) have been through the misdiagnosis "it's just a sinus infection" and/or doctors treating us like we're nuts. I had my first episode in 2001 and I was just diagnosed by my GM with CH last week. I see the neurologist tomorrow and hopefully can get the green light on the O2. Hang in there, you are not alone. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 2nd, 2007, 3:50am It's after 4 a.m. and of course I can't sleep..... The beast is banging on the right side of my head, and this is ALL I can think about.......... I keep realizing more and more. I thought my earliest memories of this was age 10 or 12........... but I now know that it was FAR before then. I remember the excruciating pain that scents and the cold would cause me...... within seconds of being outside, my eyes would be STREAMING down my face, and my nose completely blocked..... and of course the accompanying horrific pain. George: First, thank you for your reply. What you said applies perfectly to me.......... this explains the horrified reactions massage therapists and physiotherapists had when dealing with me when it came to my neck.... to the point where I was told several times to have it x-rayed before they would touch me again. I have various huge BULGES around my neck in different places.. it varies.. but they are always there and extremely painful. Also, on my scalp. My neck has been seized to the point of absolutely NO movement countless times, and the pain is just out of this world. This would also explain why I get bad pain over the roof of my mouth, and have been to the doctor about that and been given antibiotics LOL Thanks for explaining that a bit, it makes so much sense.... And as for your piece of advice: when I first read what you wrote, I have to admit I thought "well, I can't just LIVE ANYWAYS, this cripples me day in and day out.. I don't just get "hit" here and there.." (my pain is continuous between massive hits)........ but I sat and thought, and it just made me more determined to take my life back.. There is a way I can treat this..... and until then, I'll continue to fight the beast just like I always have. I've made it this far without "ending it all".. So thank you. I will live anyways, just as I always have, and that's what I need to do right now. It almost makes it worse knowing that I will hopefully find meds I can take to help....... I've gone my whole life thus far without treatment, trying desperately to medicate myself with pain killers to no avail (now I know why)... and now that I know what it is, I want HELP! I want treatment. Problem is, I can't take calcium channel blockers because of my heart condition, and I can't take abortives because of my heart meds. :-/ Just saying that makes me cry inside.. but I hope there IS hope for me. I think we are all so much stronger than we give ourselves credit for. I hope I can return the support and offer something to this site when I'm "squared away" ;) Rosy: Thank you as well! I will definitely avoid smoke and alcohol. As far as I know, I can't take kudzu because of my heart (whereas it acts like the preventatives).. but I will continue to research. Polly: You're sweet, thanks for the helpful advice. And I'll take you up on that offer sometime! Kris: Wishing you all the best, I'm hoping to get my oxygen tomorrow, too. Let me know how it goes for you. It's now 4:50 a.m., I wish I could just sleep like a normal person..... ::) Could someone tell me...... are all preventatives calcium-channel blockers? As far as I know, I don't have ANY options meds-wise................ and the more I think about it, the more it scares me. There is NO WAY I'll live my whole life like this. I will try my best to be patient, but only if I know that there is something that can help. Ugh....................... oh, the ups and downs. :'( |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by phil_h on Oct 2nd, 2007, 4:21am Hello Mikella , Welcome aboard...... This morning I've been handling the banging on the left side .... It never gets old, just more routine and treatments and techniques improve , mainly through trial and error.... For me this am , it's been o2 , ice packs and red bull.... I've had 3 hits since 12:30. 8,8 and 7.... The sooner I hit the o2, the sooner relief comes. These last 3 hits lasted 30, 15 and 40 minutes . The o2 failed to abort last hit ..... This is so much better than when I arrived here . The advise and support here will help you move from merely surviving to living again........ hang in there , get an MD that is teachable and never give up. Wishing you pfdan's..... Right now I'll hit a cold shower to get the swelling down in my eye........... These bad patches of hits tend to come and go for me ; however I get 3-4 hits daily.....they have reduced to the more liveable 4-6's................. This is better than last year.... Welcome again.... phil h |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by George_J on Oct 2nd, 2007, 11:21am on 10/02/07 at 03:50:32, Mikella wrote:
Guiseppi--Jonny--could you please add to this thread regarding lithium as a preventive? I don't take it myself, but I know that it has been very successful for them. I believe there are other options and approaches that don't involve calcium channel blockers. Bob Johnson may have some information to contribute as well. Best wishes, George Edited to add: It may be possible that you have more than one headache type going on, given your report of continuous pain between massive hits. There are a number of people on this board who get migraines, CPH, or Hemicrania Continua as well as CH. You'll need a good neuro who specializes in headache to try and sort it out. Different headache types require different medications. It's all about getting your life back--and fighting to do so. You may have to go through any number of doctors before that happens, but it CAN happen. Never give up--never give in. We're here for you, and will try to help in any way we can. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by E-Double on Oct 2nd, 2007, 2:55pm If you are not on any meds here are Some tricks that I used to use and sometimes still do: *Wrapping a bandana tightly around my skull (be careful) *Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering it. *Going from Steam to Frigid shower. *Standing infront of A/C *Icepacks or frozen veggies on the back of the neck or eye *Tons of STRONG coffee. If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep. Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not... The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and the cycle had been all over the place with no real pattern. I stayed with melatonin and have had decent sleep overall. It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression..... If not some people find Benadryl effective. As far as meds go.... This is a great resource to know like the back of your hand...print it out and give it to the doc http://www.plainboard.com/ch/chtherapy.pdf It will present the appropriate treatments that you should seek and your doctor should know!!! If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!! http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm I have also used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover" http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753 Hang in there my new friend!!! Eric |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 2nd, 2007, 3:12pm You all are angels...................... Is anybody online? I'll check the chat............... I just got back from my doctor's appointment, and I had a TOTAL breakdown.. even in front of him. He was rude, he was mean, he made me feel like the scum of the earth and would NOT prescribe me oxygen......... I sat in my car for an hour and a half and bawled. I just can't find a good doctor......... He even made remarks about how "I come in there with a little printout from the internet"....... IT WAS SOMETHING SOMEONE ON HERE RECOMMENDED TO ME.. WRITTEN BY A NEURO....... ABOUT OXYGEN. And I didn't even show it to him bc I knew he wouldn't have it........ So how the fuck did he even know what it was? He was on a mission, to be an not a very nice person......... he was looking for any reason. I was very patient, explained things to him, but he KNEW I was livid and frustrated............... I asked him if he had worked with anybody before with CH, and he said "uh YEAH.." and I was thinking to myself... "well, if you've never heard of using oxygen as a treatment, then OBVIOUSLY you've had little experience with CH"....................... I am never stepping foot back in that building. He even had the nerve to say how I was taking up his other patients' time.............. so I got up and asked for a kleenex and left. I'd like to shoot him. I told him that if he experienced this for 10 years thus far, HE would be frustrated, too.................. I asked him what the harm was in prescribing me oxygen......... and he just wouldn't have it........ he kept saying "I will NOT prescribe you oxygen". I'll never forget the things he said to me............ "Well, if you've had this for ten years, you can deal with it for a bit longer"........ No, I can't. Omg I want to just poke his eye out and see how he likes it.. (that's tame). I'm just so........ devastated by EVERYTHING. I'm beside myself. I'm so tired of dealing with doctors who deserve to die painful painful painful deaths. I'm just so MAD................... I swear I'm a nice person......................... :-[ I just hate the world right now.... I just want this to stop. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by George_J on Oct 2nd, 2007, 3:30pm Time for another doc. If it walks like a duck, and it talks like a duck, I don't care what sort of diplomas it has on the wall--it's a quack. Somewhere along the way, some ducks (oops...docs) have forgotten that they're working for YOU, and getting paid by YOU to provide a service. They're not put here to act like little tinhorn gods to lord it over the lowly sheep. I've seen it before--as most of us have. You don't have to stand for it, but you don't have to turn it into a fight, either--which won't help. Smile, nod, and blow it off. Time to move along. Best wishes, George |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 2nd, 2007, 3:49pm Thanks, George.... (I didn't fight with him, just for the record).. lol He's certainly a duck. A duck I'd like to shoot. LOL I will get over it............ he's the 5th doctor I've gone through though..... the one good one I found ended up having health problems herself and hasn't been working for like 8 months.. I need to find a new doctor's office. But as we know, doctors are hard to find. Let alone good ones.. Atleast I have the ENT on my side.. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Rosybabe on Oct 2nd, 2007, 5:04pm Any Canadians around???!!! Mikella needs help with a good Doctor referal!! Please come help over here!!! Thanks! Rosy. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by CostaRicaKris on Oct 3rd, 2007, 1:25am I'm so sorry - As I've said before, I know what it's like to be treated like you're nuts! Aaurgh! All you wanted was O2, not like you’re after heavy-duty painkillers! I saw nuero today too - I have to go back again tomorrow - I'm hoping for some O2 as well since my attacks hit around 1am and keep me up all night. I'm on prednisone right now, but that will run out tomorrow - hope to get some O2 soon. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 3rd, 2007, 11:07am I appreciate each and every reply..... they're keeping me going! Every since crying all yesterday, my head has been in awwwful pain..... anybody else find that? It makes it SO much worse for me, but I'm sure other people find that too. The ENT called me, and of course I couldn't even hold myself together on the phone to him... this was when I was still in my car, an hour and a half after my appt., bawling lol.. I sound so pathetic. Anyways, he phoned in a prescription for indomethacin for me.......... He read all he could over the weekend, to learn.. and so did I.. and he wants to try this to see if it is CPH. To be honest, I have a feeling it will work... some of my problems sound a lot like CPH..... my pain increases with exertion, I have huge problems with my neck (bulges everywhere that are extremely painful, I seize up to the point of absolutely no movement (this has happened many times, NO luck with muscle relaxants only antiinflammatories which were never tried until this last time..), spasms, my neck catches when I move, then it seizes, blahblah), I get nauseous when it gets really bad, my head throbs with movement............ Anyways, I'm not going to get my hopes up..... I've been reading everything I can get my hands on, and I can't seem to find good information that really explains the difference between CPH and HC. I'm not confident in my understanding of the two. My head is difficult to figure out LOL And it's hard for me to explain, because over the 10 years, I've experienced it all (it seems as I have). This is how I feel right now: A constant, very tight pressure/drilling pain on the back of my head My neck is all tight, especially right at the base of my skull Sharp constant "nerve" sort of pain beneath my right eyebrow and behind my eye On and off, a pain in the back of my head as if you went straight through where my right eye is to the back, this pain is like the pain in the back of my head, more drilling, kind of shoots through my head from the eye to the back Less severe same pain beneath my left eyebrow and eye My nose is dripping, feels constricted when I breathe and I have this constant tingley sore pressure where my nose is Both eyes are bloodshot, not bad now.. right one was worse yesterday.. they've been way worse (usually one at a time) Various bulges on my neck in different places, it hurts to touch my jaw under my ears and down The difference that really gets me... is... while the pain will always be WORSE on one side (the nerve pain), it will happen on the other side as well.. like it just has to remind me that it's also there on the other side >:( My "bad" side is definitely my right side, but I do feel the nerve pain on my left side on and off briefly even when it's my right that's affected. From what I can remember, the nerve pain always happens on one side at a time. It's difficult to figure out.................. But I'm trying to consciously think about my pain now. ***** I wish there was a part of this site for "diaries", where we could just write about what we're dealing with, not necessarily looking for answers.. Sometimes I just have to get it out somewhere, and put things down on screen to help me make sense of it. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Emily on Oct 3rd, 2007, 5:57pm Hi Mikella, I have just been reading this and my heart really goes out to you. :'( I'm feeling your frustration with everything that is going on and I'm sorry that I can't do anything to help you myself, even if it was only to give that god damn doctor a good slap and you a big hug and an ice pack! I don't live in Canada, but my parents do and my stepmother works for the government as someone who assesses people's insurance claims when they can't work (and is trained as a nurse). They are currently away from home, but I will speak to her as soon as possible to see if I can get a name for you, or a clinic. My parents live in Ottawa. Whereabouts are you? Hoping PF days come soon. [smiley=hug.gif] Em PS - I get shadows almost all the time in between attacks - 2 - 3 times a day, every day. Ice packs have really helped and coffee has helped too. I'm also taking indo. Not sure if it's working or not, but beware. I had a few side effects for the 1st 5 or 6 days. Nausea and dizziness, plus giving the impression to those around me (I was back in work by day 3 of meds) that I was drunk. God knows what my boss thought of me! Hold in there and know that there is ALWAYS support here for you, no matter what. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 3rd, 2007, 6:11pm Just on my way out the door to my art class - the thing that keeps me sane - lol but THANK YOU..... I will write you back tonight, you're a sweetheart. I just started the indo today, and I am sooooo dizzy.. and loopy.. LOL I'm not surprised they thought you were drunk [smiley=gocrazy.gif] <-- That's how I feel right now ;) |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by rforward on Oct 3rd, 2007, 9:51pm Indomethacin is tricky. As for Dr. M, don't sweat it. He is a pretentious not a very nice person. There are far better neurologists out there...I am waiting to get into Dr. P anxiously! I have heard nothing but good things about him. Dr. B is fabulous and will help you through this. I doubt I would still be here if it wasn't for him. I have had my run in with bad doctors, the worst being with GPs who kept trying to tell me it was all in my head and prescribe antidepressants to make it go away. Time and time again I would tell them, I'm only depressed beacuse nobody knows what is wrong with me and now my life has been taken over by something even the doctors don't understand. I had to drop out of school and study from home, sell my horse (which was my passion and activity for years...not to mention a very understanding friend), give up on many social activities etc. Interesting that you also have a heart condition. For three years as a pre-teen I was seen by a pediatric cardiologist because I often got really bad palpatations. They thought this was SVT and I had lots of tests done, but nothing ever came of it. Since I went on Verapamil they have disappeared, although the other pains have not. I understand what it is like to have a "hodgepodge" of conditions. I'm here and in the area! Anytime you need me! |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 4th, 2007, 2:48pm Hey R :) Thanks for the note! I know I'm taking too long to respond to you guys.. I'm just so whiped out from the indo. I'll write soon when I don't feel as dopey. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Rosybabe on Oct 5th, 2007, 10:07pm Take care of yourself Mikella! We are not going anywhere ;) we will be here when you get back. Pain free wishes for you Girl! Rosy. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Ctech on Oct 6th, 2007, 2:58am Doctors suck (sounds repetitive [smiley=huh.gif]) You will get better advice here - welcome home. -Chris (your local doc basher ;;D) |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Emily on Oct 8th, 2007, 10:33am Hi, The indo can be a little tricky to get used to! I still get funny feelings now with - not nearly as bad, but still not pleasant. Try eating more than you normally would over over about 30 - 40 mins and take the indo about 10 mins into your meal. This has seemed to help me. Also a bonus if you have a sweet tooth like me - I am eating the same amount for my meals, but adding dessert onto the end for all of them! Yum! Em |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 9th, 2007, 8:10pm Thanks for the notes :) I can't bring myself to write lately... I'm having a hell of a time. :( Emily - Thanks sweetie! What dose are you on? I really want to get up to 50 mg three times a day.. but I can't stomach it.. every time I take 50, I get nauseous as hell. Yuck. So I've been trying to take 25, 25 then 50 at night, or atleast once throughout the day.... Were you diagnosed with one of the "subtypes" of CH? I'm curious as to why you would be on indo if not. Are you getting any relief from it?? I hope so..... Also, how long have you been on it now? I've been on it.. a week, today. I had some relief on and off........ but when it gets bad, it gets bad..... I wish I could tell if this is going to do the trick or not.. I don't know how long I have to wait. Anti-inflammatories should give relief fairly quickly, if the diagnosis is right.. but I guess whereas I've had this for so long, untreated, it may have a LOT of damage to soothe lol Any info you have about indo,etc.. I'd love to hear.. I wish you the best of luck with all this. Too bad it has to be such a long road to find effective treatment/have it work, etcetcetc. Anyways, tell me your experience! If you'd like, of course :) Take care!! PF wishes xo |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Emily on Oct 10th, 2007, 7:00am Hello, Finally you're back on Planet Earth after riding spaceship Indo! Glad to have you back! I'm not quite sure why I was precribed indo either, and to be honest, other than the side effects, it's not having too much of an impact, but it's only been a few weeks. I can only stomach 2 x 25mg doses a day. Any more than that and I feel really rough. But I'm going to give it a chance. The shadows are still there and I'm still getting hit. I find more relief with ice packs and ice water to be honest. I'm also feeling a little hesitant about upping the dose as I've had more than one warning about long term side effects of indo on your stomach and gut. Keep me updated and let me know how you feel. I'm giving indo another 2 weeks (my next docs app) and am going to assess then - read back over my HA diary and compare it with the before. If no improvement, then it's on to the next drug! Keep smiling, Em |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by plungerjoke on Oct 11th, 2007, 4:00am i feel the same way... i know this is a longshot maybe but does anyone practice meditation as a way of minimizing headache pain? i have a little bit of experience with mindfulness meditation and find that sometimes it helps to reduce the pain during an attack, i have never taken medication for attacks. ...other than lots of caffeine -kurt. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Emily on Oct 11th, 2007, 5:51pm Never to take away the headache, but I have used meditation with shadows or when I can't sleep (for non-ch related reasons). The problem is, I'm not focused enough to keep my mind on one thing and it wanders all over the place. Perhaps you have some tips you could PM me with? I'd be willing to try it for lower KIP hits! Em |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 13th, 2007, 6:01pm (Breakdown......) Whine whine whine... I'm in the midst of another total breakdown. I can't handle any more pain. I keep to myself and try to just make it through each day, but I CAN'T any longer. 10 years - I've had my fill. If it was just a few days a month, I would be FINE..... but I don't remember what it feels like to not have pain in my head. My skull feels like it's going to crack right now. I'm fed up with the indomethacin, it's bullshit, for me anyways. The side-effects are brutal, and while it may help a TINY bit, it's just nowhere near good enough. I just want a day, PAIN FREE. I'm tired of having no life because of this. Many days I'm just out of commission, and physically can't function, many days I make myself because I have to.. so I choose one thing per day (which is.. going to work)......... I can't go out and have fun, and I feel obligated to go to my boyfriend's house most nights.. of course I want to see him, but I'm always in so much f'ing pain that I am NO FUN to be around. I'm fucking sick of this. I am just so mad and broken down about it all. So many people have no idea what pain is like....... chronic pain takes away your life.... it beats you down physically and emotionally - that's the worst part. I am so depressed that I don't care to even live. I'm on antidepressants.. but I don't think anything will help the way I need it to until I am without pain. I have had serious pain every day of my life since this began..... and before that, I was wearing a full back brace for 2 years, 23 hours a day... so of course that was excruciating as well. I just want a break. I am so envious of people that don't have to plan their day around their pain. This has completely taken away my life. I need some help..... could somebody give me all possible advice as to what could help right now? I have indomethacin, lyrica, magnesium (with calcium and vit d), taurine........... I can't take kudzu bc of my heart. Tylenol and ibuprofen have no effect, obviously. Every time I think I can't get to a lower point, I DO reach a lower point. I just want some pain relief. I want to be able to live my life. I hope anybody who reads this understands that I don't want to seem selfish, I'm just so fed up......... I'm just in too much pain. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by DennisM1045 on Oct 14th, 2007, 3:30pm Hi Mikella, I just read through this entire thread. Twice. I'm sorry to hear you are in pain. I'm sorry you can't seem to find a Dr that can help. I'm also sorry to say it sounds like you may have a few things going on. While some of your symptoms sound like CH, others just don't. CH happens to one side of your head at a time. For some people it can switch sides from one cycle to another but never shows up on both sides during a single attack, even at a lower pain level. Someone please correct me if I have this wrong. Shadows are very different from CH attacks themselves. High Kip level CH attacks are extreme and violent events that come and then completely go within a few hours at the most. Shadows are like the prelude to an attack without the actual attack progressing into a nightmare. I worry about what treating your condition like CH will do if it turns out not to be CH. So please keep looking for a Dr that can help. In the mean time be careful with what you try on your own. Using over the counter meds can produce exchrutiating rebound headaches. Not to mention what they might do to affect your heart condition. OTC meds are still medications and there are risks. CH won't kill you. Depression from chronic pain is another matter and I'm afraid I hear that in your writing. I'm so sorry I can't offer more than my observations. I wish I could reach in and take your pain away. But of course I can't. All I can do is to let you know that I hear you and I hope you find answers soon. I know you need them. Please hold on till you find a physician that can help you unravel this mystery. In the mean time. Keep writing and we'll keep reading and offering whatever advise we can. Peace to you my sister in pain. -Dennis- |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Emily on Oct 14th, 2007, 5:37pm Hey there, Just hold on. What will get you through this is the determination to find out what is going on and fix this problem once and for all. DO NOT LET IT WIN. Ice packs are a help for me for the shadows and lower KIP attacks, as is sucking on ice cubes. It's got to be worth a shot. Go back to your doc and pester them until they can refer you to someone who knows what they are talking about. In the meantime, let us know how you're getting on. You're in my thoughts. Sending you PF wishes across the pond. Em [smiley=hug.gif] |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 14th, 2007, 6:22pm Today was a hellish day.. my right eye is all bloodshot and the nerves are messed on that side of my face.. behind my eye & eyebrow, around my maxillary sinus beside my nose.. including the nerves in my teeth on the right side of my mouth. I think the worst is over for now. The indomethacin slowly helped a little after I took it. I hurt. Dennis, while you have the best of intentions, your post upset me. There is not a single doubt in my mind of my diagnosis, although my case may be atypical. They are not migraines. Everything I have read about CH explains my life to a T for the past 10 years. Chronic CH. I've heard from people that experience the pain on both sides at times. My right side is no question my bad side, but I have pain intermittently on my left as well. I am aware that shadows are not the actual attacks.. shadows are what I have day in and day out, they vary in severity but are always there, a different pain than the attacks.. flare up at the same times it seems... I've experienced countless horrific attacks, my attacks involve the nerves way more than shadows do. My cycles build and build for a few weeks until it reaches the peak, then subside, but I'm always left with shadows, and attacks that build - more often, more intense.. until the worst one of that cycle. Exertion triggers them, the cold triggers them, perfumey scents triggers them.......... I guess if you saw me during my worst "headaches" you would understand. It's frightening. It doesn't even feel right to call them headaches. It makes perfect sense to me. I wish this didn't bother me so much, but it does. I am convinced that this is the proper diagnosis, and what I've lived for the past 10 years. Yes, I have been diagnosed with clinical depression, which I'm sure stems a great deal from the chronic pain.. I am on antidepressants. I had pain FAR BEFORE I became clinically depressed. It is NOT the depression causing my pain. I sense your sincerity in your post, and I appreciate you taking the time to write me, but...... it just made me feel broken down. It wouldn't make sense to me for it to be any other thing................. I've got 2 specialist appointments this week, and I'll know more about who I'll be seeing. Anyways, would someone be able to delete this thread for me? Just give me a day to save the replies.. Thank you all, really. I really can't tell you how much I appreciate you all reaching out. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Charlotte on Oct 14th, 2007, 7:47pm If you want the thread deleted, you would need to contact DJ and discuss it. If you want to delete your own posts, go to the upper right hand corner and click on "remove". I'm not sure it is supposed to be deleted. It is part of our history, and we usually keep them. People have invested a lot of time and energy here, so do you mind if I ask why you want it deleted? Charlotte |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by DennisM1045 on Oct 14th, 2007, 8:59pm The last thing in the world I would want to do is upset you. There is enough on your plate already. Please do not interpret my comments as demeaning your pain. I didn't use the word migraine at all. I have no idea what you are experiencing. Only you can assess what it feels like to you. I was only trying to decypher your comments and point out that there could be more than one thing going on here. I'm not a Doctor and have nothing but my own experience to speak from and good intentions toward you and your situation. So please take my comments for what they are worth to you. I'm sorry if they upset you. That was not my intention. I sincerely hope you find the answers you seek and the pain free days and nights you need. -Dennis- |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by MR_FLOOR on Oct 14th, 2007, 9:03pm As you know none of these good folks are doctors,but the advice given here is almost as good as you would get from most doctors. There isn't much to add to this great advice. But with your heart condition I'm guessing Imitrex is going to be out of the question so O2 is probably going to be your best abortive available to you,don't forget to try energy drinks Red Bull,Monster ect. Anything with the combination of Taurine and Caffeine in it,remember you have to slam it down as fast as you can at the first hint of a hit. Good luck at the doctor I hope you get what you need. Dave |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Wayne on Oct 15th, 2007, 10:03am Hi Mikella I cannot stress enough what Dave just said. A lot of folk have mentioned the Redbull solution. You said earlier that you were worried about taking stimulants because of sleeping. I really cannot urge you enough to try it, I know it sounds daft but really it works for me. I figure its much better not sleeping because you're a bit wired than not sleeping because youre in agony. Don't mess around with Taurine supplements at this stage, some folk have tried with limited success but you don't want to be experimenting now hey. Please give it a bash, two tins down the hatch double quick time. If it works you'r out of prison free, if not you've lost nothing. Thoughts are with you, you will win this battle!! |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 15th, 2007, 10:38am Dennis - It's ok, I guess I just wasn't in the mood to read that someone doubts the diagnosis.. I know you had nothing but good intentions, and it was nice of you to take the time to write me, your post was thoughtful. It's just been such a long road so far, and now that we're convinced we know what it is, I want "that to be that". I'm too sensitive, I'm sorry. Charlotte - I just feel weird about spilling my guts in here, that's all. My right eye still looks like shit.. I had a bit of relief last night, but this morning is worse again. Something I don't think I mentioned.. My mother is a pharmacist and does all my stuff, so she went back and printed out a list of all my prescriptions over the years and the meds I've been on...... and it's so interesting, bc it literally documents all this perfectly beginning over 10 years ago.. occipital neuralgia - my right eye, sinus infections repeatedly (many were actual infections, many were not), torticollis, chronic "migraines".. it explains the state of my right eye over the years, too.. I was treated for "eye infections" in my right eye numerous times. I'm anxious to go to my appointments this week. I'm trying to be hopeful; I want nothing more than to find a treatment that really works for me so I can get my life back. Getting worse as I sit here.. off to get some ice. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by CostaRicaKris on Oct 15th, 2007, 1:04pm on 10/15/07 at 10:38:00, Mikella wrote:
Mikella, No one is judging you. Feel free to spill your guts. There are good people here who understand and want to help. ~Kris |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 15th, 2007, 4:27pm Wayne - Thank you :) I will give redbull a try. I bought taurine bc that is one of the ingredients in redbull.. I've tried the taurine a couple times, I think it does relieve the pain a TINY BIT, but not for long. I guess I'll only use it if I'm desperate. I'm going to go pick up some redbull tonight. Kris - Thanks for the reminder.. I needed to hear that. <3 SO......................... I had an appointment today....... I FEEL SO RELIEVED. He was wonderful with me, and we are on the right track! I'm starting topamax tonight.. starting on a reaaally low dose and upping it slowly, so I can avoid the rash and maybe not be so... stupid? lol I'm also going to continue with the indomethacin when I need it.. but he prescribed suppositories instead.. WOOHOO ::) He said that way, it bypasses my stomach and won't cause nausea, etc.. AND, it's not much use taking certain pills orally for "instant-ish" headache relief anyways because during a headache, your stomach slows down incredibly. Interesting. I'm in pain, but I am RELIEVED. I REALLY hope that this drug will give me some relief............. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by CostaRicaKris on Oct 15th, 2007, 9:47pm Topamax has worked for me. I started at 25 mg and went up every 3 days until I reached 100 a day. It's a low dose, but it seems to be all I need. The side effects really haven't bothered me too much. Diet Coke tastes horrible, tingle in my hands, toes and heels, a bit forgetful, I think it's affecting my running but the jury is still out on that one. They are all things I can live with especially compared to CH. I really hope it works for you!!! ~Kris |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Wayne on Oct 16th, 2007, 1:46am Ok that's grand, seems as if you're on track now! Best of luck!! |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by DennisM1045 on Oct 16th, 2007, 10:24am Sounds like you finally found a good Doctor! I'm very happy for you. Let's hope Topamax is your magic bullet. Here's to many PFDAN for ya... -Dennis- |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Wayne on Oct 16th, 2007, 11:16am So I am itching to hear how it's going with you, Its to early for the Topo to have had much effect but did you try a Redbull,did the new trick with the Indo work???? BTW, with Topomax you might want to invest in a notebook and pen that you carry around your neck, you're apt to become ever so slightly scatterbrained, which is a small price to pay for PF days. |
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Title: Re: I feel like I Post by vietvet2tours on Oct 16th, 2007, 12:09pm Watch this video.If this is you then you might have cluster headaches. http://www.youtube.com/watch?v=LAf_QFmTPkw |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by txbeck on Oct 16th, 2007, 3:12pm Mikella, Topamax has been my wonder drug so I am anxious to hear how it is working for you. Best of luck to you. I cannot take beta blockers either and still have shadows, but not one headbanger since miracle worker Topamax entered my life! Becky |
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Title: Re: I feel like I Post by Mikella on Oct 16th, 2007, 5:37pm on 10/16/07 at 12:09:55, vietvet2tours wrote:
Can't explain how I feel seeing someone else like that.. is that you? I cried bc I feel their pain, that's me in male form. It is so disturbing to me that other people suffer like I do.. and there's many of us. If that is you, thank you for posting that video. It makes me feel more "normal".. I wish I could give you comfort.. When my pain escalates, I feel like I'm losing my mind; no other way to put it. Often I feel ridiculous how I go on thrashing and crying, etc.. but it helps to know that I'm not alone. There's no other way to make it through that pain. Anyways, I can't respond to many of you now, since I juuuuuuuuust started Topamax last night, but I will be sure to let you know how I am doing! I'm on 12.5 mg for 10 days then 25 for 10 days, etc.. so it will be a while. I am SO DESPERATE for relief. I am very very very scared that this won't work for me.. I'm trying not to get my hopes up, but I can't help but think about what it would be like to be pain-free. I don't know what it would feel like to not have pain, the thought of ANY of this makes me so anxious - the good and the bad. If this works, my whole life will be changed......... and that is HUGE. BBS, Love to all. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Emily on Oct 16th, 2007, 5:49pm It's good to hear you sounding a bit more positive Mikella. That's part of the battle with this. A positive attitude when the pain level is low is what keeps me (and I'm sure a lot of others) sane here. It's the only way that a noraml(ish) life can be lead. Let us know how the Topomax works. It's always good to see if things work or not. I've stopped the indo now and am letting my body take a break and recover before my doc starts me on the next drug (hopefully before the next cycle kicks in!). Wishing you all the best! Em x PS - I read the boards for weeks and weeks before posting because I had similar fears. Don't be afraid to share your experiences and feelings here. We're all learning from and helping one other. You're part of this support network now too. [smiley=hug.gif] |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 16th, 2007, 8:36pm Just a quick note for EMILY :)... Thank you, you've been so kind to me. Really, thanks.. When this whirlwind settles down a bit, I'll be able to take some more time and get to know people around here and reply properly. Anyways, The indo, I wasn't sure if it made me feel worse or better.. it did help a bit of my pain.. my neck and my head (a bit), but it killllllllllllled my stomach and just made me feel awful, I couldn't think straight, I seem like I'm drugged when I'm on it LOL I'll let you know how the good ol' SUPPOSITORIES go though HAHAHA It really is a better way to take it, I don't know why they even prescribe the indo pills anymore. You may want to ask your dr. or whoever about using the suppositories next time if you use it again. Do you think it helped you? It was so funny.. when my psyc. was trying to gingerly bring up the topic, he was like: "now, there is another option........................ it's something europeans have no problem with, but for some reason we north americans have a problem sticking things up our bums" HAHAHAHAHA It's funny bc he's a pretty serious man, and he said it seriously. Anyways, what are you going to try now, Emily? Tell me more about you! Your whole story with CH, etc.. and just things in general. About the positive attitude thing.... As you know, it is SO hard a lot of the time........... Very up and down; chronic pain sucks the life out of you, it is SO emotionally trying. I have clinical depression as well, so my brain doesn't function in a healthy way.. however, the antidepressants have made a HUGEhugehuge change in my life. The feeling of complete and utter DOOM has been lifted. But I don't think I'll ever be able to get the depression under control until I can decrease this pain. I know I'll always have to manage my depression, but I know it will hopefully be much EASIER to manage at some point in my life (providing that I reach a point where I am pain free.. or close to it). I will most-likely always be on antidepressants. I suffered from dysthymia before double depression (which is dysthmia + major depressive episodes)....... and I don't want to go back to living like that (dysthymia never goes away, you have it your whole life). It's the oddest thing to describe........ very situational for me, would depend a lot on the environments I was in.... I felt unbearably UNEASY in most environments.. I have never been able to sleep ANY place other than my own room, and the antidepressants have helped with that - I'm slowly learning to sleep at my boyfriends place after this long :( Still working on it.. I had huge problems with dysthymia even when I was young, again, environments, etc. I always end up rambling.. My biggest fear is the thought of always living like this. I actually talked to Angie about that recently.. (so grateful to have met her).. and she has the same fear. I'm sure maybe even all of us do. The truth is, if I'm going to live like this my whole life, I don't want to live.... I CAN'T live like this my whole life, I don't have it in me. I know I can't think about that now, but it's always in the back of my mind. I will try drug after drug. .................It's just not fair. Why do you guys think we have to live like this? What good is there in it? Other than bringing us together, I suppose. I just can't be the person I WANT to be and AM when my state of life is reduced to this bc of the pain.. I'm a mad person. I feel very defeated bc of this. I wish I could just bear the pain and remain myself, but it is so impossible. It changes my personality. I could handle it, if I just had hits now and then............... but my pain is constant between hits. If I knew that once the hit was over, I would feel no pain, I would focus on that. But I don't have that to focus on. Anyways.............................. I'm not trying to sound like I feel bad for myself. Life is just the shits.. not fair. Fair isn't the word I guess. Life is just cruel in some ways. I wish none of us had to deal with this. I'm not that upset, just thinking and typing. BBS |
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Title: Re: I feel like I Post by CostaRicaKris on Oct 17th, 2007, 12:58pm on 10/16/07 at 12:09:55, vietvet2tours wrote:
I am balling my eyes out after watching that. It's so strange to me how similar we all are in how we react to the pain; holding the side of the head, rocking back and forth, stomping feet on the ground - that' s me!!! Mikella, I really hope the Topamax works, it's worked for many and seems to be working for me so far. I'm just having minor shadows. I am a bit concerned that it may take a long time to work because you are on a very low dose and it is being increased at a very slow rate. Maybe that's because of your heart condition?? But who knows, I never went to medical school ;-) ~Kris |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 17th, 2007, 11:37pm Thanks for the note, Kris. :) I really hope it works for me, too... AND I wish you the best of luck with it. Have you tried other drugs? Is this your first try? I hope it takes away your pain. I'm starting the topamax really slowly to try to avoid the side effects. I'm very curious to know when I may start to get some relief........... I have a feeling, not for a while :( Today was...... not good. I was hit repeatedly on my right side. Then tonight, a big long hit on my LEFT..... strange. My left is hurting so bad still.... it started around 7 p.m..... and quickly started to rage. It's 12:30 a.m. now, and the pain is bearable.. I slept when the pain started to decrease. I'm hoping that I'll be able to sleep tonight. I get nervous that I'll get hit. I'm not sure if the pain on my left is mostly the "after-effects" now, or if I'm not out of the woods yet.. God my eye feels like a massive bruise. I have a beat red long SPOT on the outer corner of my left eye. When you guys get hit.... is the reddest part of your eye the OUTSIDE corner? Mine is. I had to call my boss and tell her I couldn't come in today... I did the work I had to do for today at home early in the day, and my mother drove it to the office for me.. I can't afford to not do my work, because I run half of the Kumon program here (I run the "Reading" (english) side of it for all the reading students (50 right now)... so if I don't get my work done, nothing is prepared for the students, and I can't get to class to work with them)... Anyways, I prepared all their files at home, and hoped that class went ok.. I couldn't go to my art class tonight either. :'( |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 18th, 2007, 1:31am I'm having piercing pain on my left, and I'm being hit on my right again now...................... it's 2:30 a.m. and I just want to go to sleep. Totally blocked up on my right. My neck is terrible, it's seizing up. I wish someone was in the chat. Here comes the breakdown. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Wayne on Oct 18th, 2007, 6:22am Oh Damn Mikella, so sorry that you're walking such a rocky road at the moment, sucks!! Have you tried a Redbull yet?? I know I'm harping on it but it made such a difference to me and has to many others here. You really need something to take the edge off these things until the Topo has had a chance to work. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by CostaRicaKris on Oct 18th, 2007, 8:17am Mikella, Do you have O2? I don't know what part of my eye is the reddest when I get hit. To be honest, I never looked. It just feels like the whole left part of my face is red, swollen and on fire. To answer your question, yes I tried a ton of differnt drugs before I was properly diagnosed. Everything from antibiotics "it's a sinus infection" to morphine "that should take care of the pain" of course as we all know here, none of that worked ;-) |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by ski2k on Oct 18th, 2007, 9:44am Hey there! Sorry to hear things have gotten so bad, but I have to say it too.... They WILL get better! Although Wayne seems to think he's harping on you about trying an energy drink, he's not. It is a VERY sound piece of advice!! It still stuns me how well and quickly something so simple can work!! Being in liquid form, the taurine and caffeine get into your system sooo much faster than the taurine pills! I've been eposidic for almost 20 years now. Like you, NOTHING seemed to help. I found this site a few years ago, and found out about O2. I gotta say, it has been a miracle!! With this new doc you're seeing, I'd highly recommend bugging him about trying it!! Remember... 15 lpm through a non-rebreather mask. Use it at the first sign of a hit coming for 15-25 minutes. That should help to knock it out. The best part(s) about using the O2, is the speed in which it works, AND it has pretty much NO side effects. That means you can use it even with your heart problems! You've just GOT to try the energy drink trick, as well as the O2. I think you'll be pleasently suprised! I'm also curious as to what antidepressant you're on. I recently stopped taking one, and discovered that when I stopped taking it..... The migraines I was getting went away too! After thinking about it for a while, I realized the migraines I got started shortly after going on it! This may have nothing to do with your headaches, but it's worth considering. I hope you find your silver bullet soon, and please PLEASE try O2 and Red bull! PF wishes to you! Adam Oh... And if nothing else works, check out the clusterbusters website. That's how I'm dealing with my current cycle (RC seeds), and they've been the best thing I've tried yet! Take care! |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by sldrswyfe on Oct 18th, 2007, 9:57am First, I want to say to the CH family "You are all the best"...this post touched me...to see you all helping...there. Second..Im going to say it...Uh, Mikella, Are you taking any of this in?? Just as one of the family said, alot of caring, time and energy has been put out here. If you read "General Posts", it's very rare to receive such lengthy answers and have a thread run this long. I apologize to any of the CH family I've offended...Im feeling protective. Sorry. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Wayne on Oct 18th, 2007, 10:39am on 10/18/07 at 09:57:36, sldrswyfe wrote:
Exactly what do you feel you have to apologise for?? |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by sldrswyfe on Oct 18th, 2007, 10:43am Wayne... If I seemed like I was being insentive...it's just I feel protective, and watching all of you...has tears in my eyes...at the kindness and time. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Wayne on Oct 18th, 2007, 10:54am Please don't misunderstand me, I don't get why you think you're being insensitive or why you think you may have offended anyone with your comment. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by sldrswyfe on Oct 18th, 2007, 10:56am check your PM's.... |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Wayne on Oct 18th, 2007, 11:07am on 10/18/07 at 10:56:54, sldrswyfe wrote:
Check yours |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 18th, 2007, 11:16am sldrs - You have offended *me*.... I have never been so appreciative, and thankful....... I've never met such compassionate people so willing to help in any way they can. Have you read my posts? I've thanked people over and over...... Right now, I am so desperate to just get through the pain. I can't write back to everybody every time yet, and I've explained that. You should understand about the pain....... I've just started coming to this site, give be a break, please.. I don't understand what I've done to make you feel this way towards me. I hope you'll reconsider bc I'll be here for the long-haul. Wayne, Kris, Ski.. again, thank you.. I wish there were more I could say. Just having people around that I know care and understand, helps so much. I've tried to be prescribed oxygen, with no luck.. I have another appointment today with an ENT (amazing guy, he got me started with all of this, figured out what it was..) and I will ask if he can prescribe me O2. If not, I will call my psychiatrist and see if he would call in a prescription. It took a little while to get over the harsh words that dr. said to me about how it was "drastic" and everything.. I thought maybe I didn't need it.. but you've all helped me get back on track and understand that I really do. As far as the redbull goes, I had been trying the taurine pills, but I'm going to go out and buy some redbull (or another brand equivalent with hopefully a high amount of taurine!)... the reason I've been apprehensive to try it, is because of my heart.. *I'm supposed to stay away from stimulants*.. I promise I am listening to you all, there are just so many other factors I have to keep in mind as well bc of my other health issues :( That said, I AM going to buy some redbull.. and try it. Would half of a can help at all? If not, I will drink a whole one.. I just have to admit, it makes me a little worried about my heart. But it's ok, I promise to try it! So.. just want to say, that I am taking in EVERY word you guys take the time to write me. You are what is keeping me going. I don't know what I did to deserve sldr's comment, but I hope that you all know how appreciative I really am... I try my best to convey that. As I said before, I'm just so DESPERATE right now.. I'm in constant pain, and I tend to rant. Also, with my ADD, it makes it hard to sit here for long periods of time and write to you all. But I do try.... I wish I had more to offer right now.. I'm not out of the woods yet.. once I am, I will give back in any way I can. I admire you all. This is just so overwhelming right now, I FINALLY know what is wrong with me after 10 years of suffering every day.. I feel like my head is spinning on my shoulders, all this new information....... all from people I don't know, and want to get to know. I don't know what to say, how to say it, where to go, what to do, LOL Aaaaaaaanyways, the pain is more dull today. Had a hell of a day/night yesterday and my face shows it. But I'll be ok. You guys are getting me through it. I'll update after my appointment. Love to all, many PF wishes. Hugs, Kella |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by vietvet2tours on Oct 18th, 2007, 3:23pm on 10/18/07 at 09:57:36, sldrswyfe wrote:
You offend me. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 18th, 2007, 3:47pm Chronic clusters it is. My appointment went well! He used a camera to look at my sinuses again, and sure enough.. Physical proof of my attack last night/today: My left sinus was congested, swollen and red. (Plus my eye, bloodshot, swollen, droopy).. I was finally prescribed oxygen! I called the place and they're going to call me tomorrow and set up a time to come to my house. Can someone tell me what it's like when they first come to your house? Do they inspect your house or anything?? I swear you can tell when I'm going through really bad bouts of pain bc my room gets messy lol >:( They'd say it was a fire hazard lol Anyways, all of these steps are certainly in the right direction.. it has given me a burst of hope. If I could reach out and hug you all, I would. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by txbeck on Oct 18th, 2007, 4:36pm Good luck with the O2 now Mikella! Be sure they provide a tank and a 10 to 15 lpm regulator with 100% ovygen. That should be obvious, but my experience proved it is not. My prescription was right but two different suppliers sent me concentrators instead of tanks! You also have not mentioned melatonin yet. Try it. I take 12 mg at bedtime. It seems to work well with the Topamax. I finally bough some Redbull, but am not even a coffee drinker so I won't use caffeine until I'm desperate, but CH = desperation, right? PF wishes. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by ski2k on Oct 18th, 2007, 5:08pm So glad to hear you got the O2!!! Don't worry about the home visit, they're just there to set up your tank or concentrator, show you how to use it, etc.. If they give you a concentrator, you MUST INSIST they give you a tank or two (E-tank... that's the size of it) to go along with it!!! It's a MUST! The first time I tried O2, the supplier told me it wasn't practical to give me tanks, cuz I'd use one whole tank for each headache I had. That was NOT true! I found out later, that an E-tank will last for four or (sometimes) five headaches. You really don't want to feel like you're stuck at home since you can't bring your concentrator with you, so having even one E-tank is a MUST! Also, make sure they give you a non-rebreather mask. My first time, they tried giving me the nose tubes, and they just don't cut it! Use at the first sign of a hit, and should knock it out completely within 20 minutes (sometimes a little less time, sometimes a little more). A word of advice... If it does knock the HA out, stay on the O2 for about 5 minutes after it leaves! Some people (myself included) find if they stop too soon, the beast comes right back within 1/2 hour. I know you've probably done some reading about the O2, I just thought it might be good to give you a quick reminder of what you need before your appointment. Let us know how the energy drink works for you. Again... It doesn't need to be Red Bull, but make sure it has both Taurine and caffeine. That combo seems to be what makes it work for us. To use it, take it at the first sign of a bad hit. Drink it down as fast as you can. Since you have the heart issue, you can try doing half a can, but if things don't feel like they're improving soon (within 10 minutes or so), then I'd drink the rest. Some people have found a really good one-two punch is to slam the drink, then hit the O2. Might be worth a try if each one doesn't seem to help much on it's own... I'm just so happy you're finally getting some help! I'm soooo excited for you, and can't wait to read if the O2 and Red bull are working for you! Best of luck!!! Adam |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Wayne on Oct 18th, 2007, 7:17pm Hi Mikella A very very important part of living with ch is taking control of it. you will hear and read much advice, things that may or may not work for you, never the less it is ultimately you who has to look after you. few of us here are doctors and no one can force you to do something you are resistant to, but I will seriously urge you to open your mind and think where you are and explore every avenue to make that place as good a place as possible. Ranting here is fine, its what we do from time to time, but we also listen! I wish you many, many PFDAN Wayne |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by DennisM1045 on Oct 18th, 2007, 11:02pm Hi Mikella, I'm very happy to hear you are getting your O2! I hope it works as well for you as it does for me. Do you have the perscription with you? Does it read 10-12lpm? If so the regulator they'll give you will probably go to 15lpm. If not then you need to work with the Dr to get the right perscription. What size tanks are they delivering? I keep an m-tank at home and have 3 e-tanks for travel and at work. The m-tank is comes in two versions. One is about four feet tall and the other is a bit shorter but fatter. I keep mine is a space about 18" sware next to my dresser. I also had them give me a long 50' hose so I could pace. I'm a pacer and need a lot of hose ;;D Good luck tomorrow. And don't worry about the O2 delivery guy noticing anything. They don't care and are only there to deliver the O2 and get you set up. Hopefully you'll get a good guy. Don't let him leave without having him show you how to work the equipment. The non-rebreather mask has a bag attached and two holes on either side of the mask. Both of these holes need to have flexible discs called valves on them. When you breath in and completely colapse the bag no air should be flowing in through these holes. It'll take some practice. Read through the O2 supplemental guide on the OUCH-US site. It'll really help you with the mechanics of using it properly and is well worth the time it takes to read. Good luck hon and let us know how it goes tomorrow. -Dennis- |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 18th, 2007, 11:13pm Wayne, my mind is as open as it can get. Thanks again for the great advice!!! I'm going to reply tomorrow, it's getting late here.. but had to pop in and say how comforting it is to come here and see your replies. Quick update, I tried redbull this evening. I tried to drink it as fast as I could. I didn't have much luck with it, but I will try it again. I think the pain may have been too bad for it to help much.. but definitely worth another try, maybe with better timing. Is that usually the case? That it doesn't help much unless you catch it in time? I will hopefully be set up with oxygen tomorrow.. fingers crossed. Anyways, will reply to you guys tomorrow. Thanks again. I hope you all are doing well.. Talk soon <3<3<3!! |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 18th, 2007, 11:21pm Dennis! ;) Thank you! That was a lot of new info for mw. I'm not sure what size tanks they are delivering [smiley=huh.gif] I need to know more about the sizes. I do know though that the prescription is 15L/min, non-rebreather mask. I'll be back in the morning to absorb that info hehe and do a bit more reading. It's funny how you can just spiel stuff off the top of your head about oxygen therapy............ You can be my oxygen expert. This is stuff I basically had no CLUE about until about a week or so ago. Thanks <3 BBS |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by DennisM1045 on Oct 18th, 2007, 11:34pm When you get up in the morning I want you to download and read through this document. It'll tell you everything that I know ;;D My knowledge comes from the people on this board, OUCH documentation and my own experience using the equipment. You'll be an expert too in no time at all 8) http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf -Dennis- |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 19th, 2007, 4:13pm First, thanks Dennis, great info, explained things well.. I don't feel like such a dummy now haha OK................ So................................ The oxygen came. I have 2 M size tanks for $150.00... (Canadian).. is that standard? Bad? Good? The woman was WONDERFUL.. spent an hour and a half at my house. Now, on to the real news........ I just finished trying it for the first time. I tried it at 13L/min for about 15 mins, then put it up to 15 for almost another 10. Are you supposed to vibrate? My body started to vibrate after a little while, especially my lips..... lol..?? Is that weird? ..............................I'm still in pain. For a minute, I thought I was getting relief.... I'm trying not to cry. I tried to not get my hopes up, but it crossed my mind that MAYBE this would take away my pain temporarily.. how nice would that be. What I'm wondering... is... maybe oxygen won't work for my constant pain (CH pain, "smaller"-ish attacks continually throughout the day between KIP 4 and 7)............... but will work for my massive CH hits.. my 8s - 10s. But I don't see why that would make sense. [smiley=huh.gif] Just thinking. For you other chronic people, what is your experience with oxygen? Hm. Ok. It's ok. I'm going to go pop some taurine and whatever else I can find [smiley=huh.gif] I'd love to hear some wisdom. <3 |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 19th, 2007, 6:12pm I took 1000 mg taurine, some magnesium, and 50 mg indomethacin. Still in pain, but not as severe. I'm ok. I feel alive again. This will all be ok.. just wish there were some magic answer for us all. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by DennisM1045 on Oct 19th, 2007, 7:36pm Hey Mikella, Keep at it with the O2! It takes some practice to get the most out of it. The more the pain is entrenched the less effective the O2 will be. The trick is, don't wait. Get on it at the first sign of a hit! The longer you wait the less likely it'll work for you. Also, if you have no relief after 15 minutes, stay on it for half an hour. What do you have to loose other than the pain? ;;D You want to use the higher flow rate early and reduce the flow as your respiration slows. You want to use enough so your not completely deflating the bag when you inhale and not so much that it's filled and overflowing while you exhale. There is a balance to it that takes some practice to find. You'll get it. Is the mask making a good seal? Does it have valve flaps on both sides? No room air... only 100% O2 from the tank! If you find room air is leaking in try using your fingers on either side of the mask to hold the valves in place while you inhale. Then release them while you exhale. If you hyperventilate you may shake a bit. It's not a reaction I typically get but I have had slight tremors at times after a treatment. I never thought much of it though. I'm usually so grateful the pain is gone I don't care ;;D O2 may or may not work for me on shadows. It always works on low Kip levels up to Kip 7 or so. If I wake up in the middle of the night to a Kip 8 or above I still try it, but haven't had more than a reduction in pain level. Then I'm on to an Imitrex injection ... that's my last resort. Stick with it hon. I hope it works for ya. -Dennis- |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 19th, 2007, 8:54pm Dennis, that was a reallyreallyreally helpful post. Thanks :) I will stick with it and use your tips. For tonight I think I'll just ice it.. I'll be back around tomorrow. Hope you're doing ok <3<3<3 |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 21st, 2007, 2:04pm For anyone who cares to read ;) Or just me, which is ok too :) Little update.. Yesterday was nothing short of horrific. I decided to try the oxygen, and the same thing happened as before pretty much.. I get relief when I'm on it, then near the end of using it, it starts to get more and more painful.. then by the time I stop, within minutes, I'm absolutely clobbered. I resorted to tylenol 3's last night, because I don't HAVE anything to help.......... I had no effect from them previously, but I have to admit it took the edge off.. it took an hour to work, then it helped a bit with the pain for one hour.. then that was that. Certainly didn't take the pain away, but made it a bit more bearable. My eyes look terrible..... I always feel like I look like a monster when I go through super bad periods. I had to take gravol as well.. when I'm in severe severe pain, I tend to throw up. My other meds are hard on my stomach which doesn't help. Sorry to the one who asked me which anti-depressant I'm on, I now forget who.. :-[ I'm on sertraline (zoloft). Took me 5 tries to find the right antidepressant. Maybe it was 4, can't keep track anymore. They have had no effect on my headaches though.. this began faaaaaar too long ago (the headaches, 10+ years). I just started antidepressants within the last.. 6 months or so? But it was a thought! Thanks for the suggestion. So anyways, the meds made me drowsy and I eventually fell asleep once things were taming down after the REALLY bad 4 hours.. I fell asleep for 2 hours (just like every other night of my life) then woke up with the beast messing around again. He wreaked havoc in my left eye that time. Now both eyes look awful. Anyways...... I was up until 3:30, then got some sleep. I've been reading reading reading as much as I can here, and from what I can tell, it seems like I have POSSIBLY three things: CH, migraines, and chronic daily headaches. My types of pain are very distinct. I'm trying to learn as much as I can, and am actually looking forward to seeing the other neurologists (I'm set up to see two more.. one is a leading headache specialist around here). Once I have definite answers as to what ELSE is going on, then I can zero in on learning specific info. Love to all, PF wishes, Talk soon. XO |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by DennisM1045 on Oct 21st, 2007, 2:38pm ((((HUGS)))) Keep fighting Mikella! Answers are out there. Sounds like you are beginning to unravel the knot. Is there any chance some of the daily HAs are caused by the meds? You are on a lot of stuff. Just something to think about and explore with your Drs. -Dennis- |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Wayne on Oct 21st, 2007, 4:36pm Hi Kella Are you still moving on the Topomax?? Have you ever tried migril (cafergot). Must admit I'm running out of ideas here. Somewhere is your silver bullet, just got to keep looking hey. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 21st, 2007, 5:39pm hi dennis and wayne, many thanks once again.. can't type long, my jaw is tightening. i took tylenol 3 just in case it does help at all. i'm on 12.5 mg of the topamax, ramping up super slow.. 12.5 for 10 days, 25 for 10 days....... been at 12 since monday. bbs take care & thanks <3<3 |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by txbeck on Oct 22nd, 2007, 2:45pm Mikella, It may seem counterintuitive, but chances are very good that the codeine in Tylenol 3 is actually causing a great deal of your pain! I just tell doctors that I am allergic to codeine. It's not quite accurate, but codeine is definitely a CH trigger. I can take Vicodin without a rebound effect...it won't help my CH, but it won't make it worse either. Codeine, however, commonly causes headache even in people who do not even know The Beast! Most Clusterheads seem to have a negative reaction to any narcotic pain med, though. CH just doesn't react like most pain to drugs, as you already know. On the other hand, I take Soma (muscle relaxant) at the first sign of any CH symptoms, but neck pain and muscle spasm are my most common triggers. I seem to be able ward off some hits that way. I am 66 now, so I've had many years to figure out what helps and what hurts. It's only slightly easier to figure out what hurts (codeine, dental chairs, looking up, too long in one position, alcohol, etc) than what helps. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 22nd, 2007, 5:15pm Thanks Becky, I did nooooot know that about codeine! Really appreciate the heads up and info. I ended up seeing a neurologist today :o Interesting stuff. I'll update with that info when I can, I need a break for now. |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Emily on Oct 23rd, 2007, 3:44pm Hi Kella, Sorry to hear that you're still trying to find something to help. Codeine makes me feel SO much worse - it was the first peice of advice my doc gave me when I started getting these headaches. I'll keep my fingers crossed that the topamax starts to kick in soon enough and you'll start feeling better. In the meantime, keep reading and posting. [smiley=hug.gif] |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Mikella on Oct 25th, 2007, 8:21am thanks emily <3<3<3 i'm off to the hospital.. things just aren't good. i can't function at all now. the pain hasn't broken at all in a month. do you think they will admit me? this is my only hope for some relief maybe.. and maybe they'll do an MRI. i'm starting to get scared, i need answers and pain relief. well, wish me luck, love & pf wishes to all, talk soon. <3<3<3 |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by DennisM1045 on Oct 25th, 2007, 9:16am An MRI would be a good thing. Good luck Mikella. I hope you find the relief you need. -Dennis- |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by Emily on Oct 29th, 2007, 6:48pm Hello, At least if they admit you, you can get all tests/meds you need on hand. Let us know when you're back at home and hopefully you'll have some good news. Sending you some positive, pain-free vibes. [smiley=hug.gif] Em |
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Title: Re: I feel like I found my long-lost family ;) HEL Post by aloneuk on Nov 1st, 2007, 2:00pm how was the mri? |
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