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Title: What's Up!? I was just diagnosed today... Post by Will_Williams on Dec 29th, 2005, 12:27am Hello Everyone! My name is Will Williams aka Will Gates. I have been suffering from Cluster headaches since the 11th grade. That was about 4 years ago. I remember having to sit through Math Class everyday at about 12:30 in the afternoon DYING from pain and begging to go home, but my teacher would always say if it was a migraine I would be bedridden. As if I had the headache when I left home at 7:30 in the morning or something. If that was the case, I wouldn't have come to school! It's funny how some of the educators of the world can be so unsmart sometimes. Anyway, my headaches were gone for about a year and just came back in the beginning of November. I went to a doctor about 2 years ago and he said that it was just migraines and perscribed some Medrine for me. Well the medrin was BS and never worked. So I finally decided to try again about 3 weeks ago. So I went to see another doctor and she perscribed 100 mg of Imitrex and insisted that if its been going on for 4 years and nothing serious has happened, then it's probably nothing. She was about 83 years old though! She looked old enough to be rich and retired by now, being a doctor and all. So I suggested that I get a catscan anyway. So the catscan, showed a vascular abnormality in the back of my brain or something. I was nervous so I researched it and found an article about Cluster headaches. From the way they described it, I immediately knew that that's what I had. I was instructed to go and see a Neurologist. I went today and was finally diagnosed by medical "professionals", that I had something that I diagnosed myself about a week and a half ago (CH). Turns out, I have a vein sitting in the back of my brain doing nothing but passing blood. It serves no purpose, it's just there... The neurologist perscribed Verapamil 40 mg pills twice a day+1 Indomethacin 75 mg pill a day for the next 3 months. He called it something else, but I forgot so those are just the names that the pill bottles say. Also the Imitrex was doing absolutely nothing for me, I hadn't even bothered to go and get my perscription filled because my advil migraine was working better. I never leave the house without a bottle of it in my pocket. This neurologist perscribed something called Relpax for me, when I told him that the Imitrex didn't work. Supposedly, Relpax is some new alternative to Imitrex. I haven't used any yet so I hope it works. Has anybody ever tried to race their headache to bed at night? LoL Anyway, thanks for listening. |
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Title: Re: What's Up!? I was just diagnosed today... Post by Will_Williams on Dec 29th, 2005, 12:32am Oh yea... I have to go and get an MRI done. If anybody has ever had one done, can you tell me if they have to put a tube in my vein? I had to get one for my catscan and my arm still hurts... |
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Title: Re: What's Up!? I was just diagnosed today... Post by E-Double on Dec 29th, 2005, 1:06am I don't know about the VEIN my friend....... Verapamil is at a really low dosage to help. Most take minimal 240 some upwards of 600+ Indomethacin is probably not going to help either and it WILL be terribly difficult to come off of. READ THESE!!!!!!!! This is a great resource to know like the back of your hand...print it out and give it to the doc http://www.brightok.net/~mnjday/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 recently been using 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 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. With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time. 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 this cycle has 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..... Like I said we are all different. Best wishes, good luck & stay as positive as you can!!!! Eric ALSO...imitrex pills will take too long!!! If choosing imitrex, the injections will work like a dream! 7 minutes tops!!!! Zomig Nasal spray is also pretty damn quick. |
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Title: Re: What's Up!? I was just diagnosed today... Post by Will_Williams on Dec 29th, 2005, 1:30am I did take both of those pills when I got home today at about 1:30pm and my headache still came at about 4:00pm. I layed down and put my blindfold on like I normally do and it started to go away within 2 to 5 minutes though. So I'm sort of confused... If it was the medication that made it subside so quickly, then why couldn't it have just prevented it from coming in the first place. Maybe it's ignorance on my part, because I can't stop playing video games. Do you know about any medications that might prevent them from occuring? Also thanks for the information! |
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Title: Re: What's Up!? I was just diagnosed today... Post by LeLimey on Dec 29th, 2005, 2:10am Indomethacin is not usually effective for CH. Verapamil works for alot of people but as Eric says at much higher doses and you really need to have an ECG both before Verap and about a week after starting and then about a week after every increase of dose too. For some people it stops hit's in their tracks, for others the best that can happen is a reduction in intensity. Unfortunately the most insidious thing about this condition is that no two people will find the same meds work in the same way for them so its very much trial and error to find what works for you. Imitrex pills are next to useless, they take far too long to act as do the nasal sprays. The injections work quickest at 5-10 minutes but have a relatively short half life whereas the zomig sprays take up to 20 minutes to kick in (or so I understand) but have a half life of 12 hours. This means you won't get hit again for longer and is therefore well worth considering. Triptans aren't suitable for people with a heart condition or who are using certain other medications so as with every med I hope you read the leaflets! Read up all you can on O2, its my personal favourite abortive as it works brilliantly and is med free. Read all you can everywhere in fact, you are your own best advocate with this and sadly as you are learning, its not a condition many doctors know as much about as they would like to think. There is a wealth of information here on every time of therapy from conventional to alternative. Read all you can and ask as many questions as you need to, we are always happy to answer them! Let us know how you are getting on too okay? Helen |
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Title: Re: What's Up!? I was just diagnosed today... Post by Will_Williams on Dec 29th, 2005, 2:26am Thanks alot Helen! What is an O2 tank and how do Iget one? I'm not the biggest lover of injections. I don't have any heart conditions or allergies though, so most medications don't harm me. I'll be sure to keep checking in though. |
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Title: Re: What's Up!? I was just diagnosed today... Post by LeLimey on Dec 29th, 2005, 9:25am Try via your doctors first, read the oxygen links to the left. You'll need to have a high flow regulator which will go up to 15 litre's per minute (LPM) Some people get by on a lower flow rate but I for one NEED it to be the full fifteen! The good news is that I can abort within 5-7 minutes on o2 which is as good as anyone can get from imitrex injections! You also need to use either a standard non rebreather mask (the sort with the bag attached) OR a clustermasx. Look them up on here for other people's views. It was invented by a cluster sufferer and is quite simply the reason I'm still here. Check out www.clustermasx.com for further details. Keep asking questions, sometimes it's easy for us to slip into jargon (such as LPM) without stopping to think not everyone else is au fait with the terms we use and it's good to get a reminder that we (I!) need to be more user friendly! I honestly cannot recommend Oxygen enough though. It keeps me sane..well.. saneish.. well oh stuff it I can spell it! That must count for something eh?! ;) Helen |
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Title: Re: What's Up!? I was just diagnosed today... Post by Ghost on Dec 29th, 2005, 9:41am Hey Will and welcome ... you have gotten some Great advise. Please follow it for one to help keep some sanity, but also to make to doc visits easier. Sorry you had to have to find us but you did find the best group of animals around. Remember above all get the Oxygen and a good rebreather mask, it will save your life and no jokeing but it will knock the beast out pretty fast will vary for each person but for most seems 5-15 min. that is a world of help when your head is on fire and busting at the seams. also best support group in the world is here and yes I said in the WORLD! Welcome and god bless the sufferer for not many will. Mike |
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Title: Re: What's Up!? I was just diagnosed today... Post by Gator on Dec 29th, 2005, 10:03am Hi Will and welcome. Sorry you have a reason to be here, but if you have cluster headaches, this is the place to be. There is much information and many years of personal experience here. As you have discovered, people in general and, unfortunately, doctors as well can be pretty clueless when it comes to CH. Speaking of clueless...What does THIS mean? Quote:
Passing blood where? No purpose? I'm calling ME clueless here, not you. Just trying to figure out where this ties in. The reason I ask is that there are different conditions that can mimick CH and as far as I have read here and other places, not one person (very many who have had MRI's and such) has mentioned having a wayward vein in the back of their brain. I don't recall it being mentioned in any of the research done by the major players in CH research that I have read, either. BTW, no tubes or such for an MRI. Maybe an injection with a contrasting media, but that's about it. I would be on the docs to explain the vein thing and to be sure something else isn't going on there. If it turns out to be nothing sinister and all you have is CH, then it may hurt, but it won't kill you. If it is something else and you are being treated for clusters, it very well could kill you. Quote:
This kind of raised another question for me as well. You can lay down during an attack? I'm sure some people do, at least during the early stages of a mild attack, but it is uncommon for a person to be able to do so during a full blown CH hit. I'm no doctor and I'm not saying you don't have CH. I am saying you should be very careful about #1 diagnosing yourself and #2 taking meds for CH if you do not have it. The meds we take in the combinations and dosages that we take them can be dangerous. You wouldn't want that wayward vein in your brain to explode because you were being treated for the wrong malady. Again, welcome to our little corner of the web. I hope you find the answers you need to live a normal and pain free life. Mike |
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Title: Re: What's Up!? I was just diagnosed today... Post by Margi on Dec 29th, 2005, 10:45am on 12/29/05 at 10:03:50, Gator wrote:
VERY well said, Gator. Excellent post. Will, keep pushing for a proper diagnosis...there really are some red flags in your symptoms that indicate something other than cluster. The vein thing, the laying down, the blindfold...just doesn't add up to equal cluster. Cluster meds can be very dangerous if you've been misdiagnosed. |
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Title: Re: What's Up!? I was just diagnosed today... Post by Redd715 on Dec 29th, 2005, 10:46am Just curious if that vascular abnormality appears like a puff of smoke at the back of the brain? |
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Title: Re: What's Up!? I was just diagnosed today... Post by Margi on Dec 29th, 2005, 10:50am good catch, Redd - that could very well indicate MoyaMoya. Will, the webmaster here has this condition as well. He has set up a website about it - www.moyamoya.com. |
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Title: Re: What's Up!? I was just diagnosed today... Post by Redd715 on Dec 29th, 2005, 10:53am When he said vascular abnormality at the back of the brain it flagged me right away. Worth a look-see into it anyway. May save his life. |
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Title: Re: What's Up!? I was just diagnosed today... Post by Will_Williams on Dec 29th, 2005, 3:25pm Well my Neurologist said that there was a vein in my brain that doesn't really serve a purpose but it still carried blood through it. I'm not really sure what that means either. I guess the MRI should reveal something. When I do get the headaches, it hurts like hell to lay down. It hurts even worse sitting up though, so I just take my medication and lay down anyway. I can never get to sleep until the pain subsides though. Usually when I feel a headache coming on and I'm able, I take my medication and lay down trying desperately to fall asleep before the pain gets too bad and hopefully the medication will kick in while I'm sleep. That's what I meant by racing my headaches to sleep. The neurologist didn't tell me how it appeared. I never even got to see a copy of my catscan, but I'll be sure to ask though. Thanks for the advise! If it isn't clusters then I hope it's nothing too serious. |
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Title: Re: What's Up!? I was just diagnosed today... Post by Margi on Dec 29th, 2005, 3:55pm does everyone have this vein, Will, or just you? Honestly, I don't mean that to sound sarcastic, just trying to help you. Very few clusterheads I know CAN tolerate lying down while they're having an attack. I know it probably sounds trivial to you but, trust me, it's HUGE in the correct diagnosis of cluster. I'd sure still push for a second opinion/diagnosis if I were you. Have you taken the cluster quiz on the left here? <--- |
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Title: Re: What's Up!? I was just diagnosed today... Post by Will_Williams on Dec 29th, 2005, 5:49pm on 12/29/05 at 15:55:55, Margi wrote:
I didn't take it sarcastically. I'm not sure what everyone else has. All I know is what the neurologist told me. I'm hoping that I can get an answer to the question about the vein being there when I have the MRI done. Before then, I'm just as clueless as everybody else about it. It may or may not only be cluster headaches. the neurologist recommended that I go and see another doctor on the 25th of Jan. So I'll be sure to ask him. My symptoms sure sound like clusters though. #1) Do your headaches normally last LESS THAN 15 minutes? Yes No (No) #2) Do your headaches normally last MORE THAN 4 hours? Yes No (Without Medication Yes)(With Medication Sometimes Yes) #3) Do your headaches normally switch sides from day to day or during a headache? Yes No (No) #4) When you have a headache, do you normally seek a quiet, dark place? Yes No (Yes) #5) When you have a headache, do you normally want to be around other people? Yes No (No) #6) When you have a headache, can you normally lay down and be motionless? Yes No (Yes I can lay down, can I be motionless... No) #7) When you have a headache, can you normally go to sleep to make it go away? Yes No (No) #8) When you have a headache, do you normally experience nausea? Yes No (Yes) #9) Are your headaches always on the same side of your head? Yes No (Left Side Strong) #10) Do your headaches normally wake you up from a sound sleep? Yes No (Unfortunately Yes) #11) Do your headaches normally occur at the same time of the year and same times each day? Yes No (February-April) (November-Still Counting) (Anywhere between 12:30 pm- 7:30 am) #12) Do you normally experience a stuffy nostril on the same side of the face as the pain? Yes No (Yes) #13) Do you normally experience a "droopy" eyelid on the same side of the face as the pain? Yes No (Yes, eye turns red as well and tears stream) Blindfold gets soaked #14) Do you normally go from totally pain free to totally debilitated in 5-10 minutes? Yes No (Yes) #15) Do you normally go from totally debilitated to totally pain free in 5-10 minutes? Yes No (Yes) #16) When you have a headache, do you walk, pace, bash your head, thrash, scream? Yes No (No, I just lay down with my blindfold on and ask why me?) I just got over a headache that lasted from about 3:30 to 5:30. Now I'm drowzy off of meds and even more worried than before. I'm gonna go read about Moya Moya now. |
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Title: Re: What's Up!? I was just diagnosed today... Post by BobG on Dec 29th, 2005, 6:05pm Here's my thoughts on your cluster quiz answers. Remember, I am not a doctor, it's only my opinion. Numbers 2, 6, 8) and 16 say you do not have cluster headaches. 2. because cluster attacks usually last 2 hours or less. They may last 4 hours but that is very unusual and for most of them to last 4 hours it is very unusual. 6. To lay down during a cluster attack is almost unheard of. 8) or #8. nausea is unusual with clusters. But maybe it's your meds. It's more of a sign of migraines. 16. see 6 above. |
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Title: Re: What's Up!? I was just diagnosed today... Post by Will_Williams on Dec 29th, 2005, 6:21pm That's why I'm here, to try and find out if CH is what I have. Who would know better than you all. I really appreciate all of the concern and knowledge that you all are sharing with me. The neurologist suggested that the symptoms I explained to him sounded like CH, but I guess it could be wrong. He still requested that I have an MRI done so maybe it could be something else. I don't see why if he was sure it was CH, he would have me get an MRI done anyway. I've been reading up on Moya Moya and if that's what it is then hopefully I can catch it in time. I haven't gone numb or had my leg or any other part do that thing that he said. If that's what it is though, then that's actually better! I'll take a couple of surgeries to have this pain go away for good! Thanks again for all of your support and information! |
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Title: Re: What's Up!? I was just diagnosed today... Post by BobG on Dec 29th, 2005, 6:32pm Please get the MRI done. It may show something else is wrong. I sure hope not. But, do it just to be sure. Then let us know. We may all learn something new. |
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Title: Re: What's Up!? I was just diagnosed today... Post by Guiseppi on Dec 29th, 2005, 6:42pm I started getting some kind of headaches in my late teens, that in hind sight, may have been the early onset of clusters. And I know just what you mean when you say you would race them to sleep. When I used to get what I now call shadows, I'd race into a dark room and pray to fall asleep before the headache hit. If I fell asleep they wouldn't hit. By my early 20's, they were just the opposite and my head would explode at 2:00 am already in full attack! They did the Midrin thing on me, no help, a variety of narcotic pain killers and migrain meds, no help, before I got a doctor whose brother in law had cluster headaches, what a God send! The MRI is just a big tube that vibrates! It's a little claustrophobic but no needles! Some kind of a sound wave thing...(clearly not an engineer)... This will start to sound like a recording but be patient. It takes a lot of trial and error to find a mix of meds that will work for you. I also swear by the oxygen tank. When I'm in cycle it's never more then a few feet away from me. Sorry you're here, hope they diagnose you with something they can fix. If it turns out you're a CH'er, welcome to the neatest bunch of people you'll ever meet. Guiseppi |
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Title: Re: What's Up!? I was just diagnosed today... Post by Will_Williams on Dec 29th, 2005, 6:42pm I'll be sure to fill you all in on the results. I hope it's nothing too bad as well. Thanks again for the concern. You don't find that much these days. |
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Title: Re: What's Up!? I was just diagnosed today... Post by Jonny on Dec 29th, 2005, 6:49pm Kid, When you go for the MRI bring your favorite music CD, most places will play your music inside the tube for you, cause the machine is loud and annoying....but harmless!! |
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Title: Re: What's Up!? I was just diagnosed today... Post by MJ on Dec 29th, 2005, 6:53pm Very good questions raised here. Will - you seem like an intelligent guy, check them all. As far as laying down when I was same age before being diagnosed, as I thought I was surely dyeing, I used to lay down and allmost go into convulsions from the pain, spent many hours in the fetal positions alone in a lit room. Its curious now why I never got up. Guess I thought I might die faster. No way you can get me to lay down now or even think about sleep when I know its coming on. "IF" possible you might take a video game break and see if that helps as well. New headaches are being defined as caused by the video demons. All intense situations require a little R+R. You just may enter the matrix. MJ |
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Title: Re: What's Up!? I was just diagnosed today... Post by Will_Williams on Dec 29th, 2005, 8:00pm on 12/29/05 at 18:49:11, Jonny wrote:
Thanks for that insight! If the headaches don't kill me, then terrible music surely would have! I'll be sure to bring my own! MJ I'm writing all of the questions down! I'm keeping a journal right now, to find out some triggers. Doctors orders... It may be a combination of driving, video games, television, and sleep deprivation. I'm not sure. I do ball up in bed though. The pounding is terrible. The pain starts from the front of my forehead and goes around the left side of my face to the back of my head. Around my left eye and behind my left ear down to the neck. I feel like if I turn my head my neck will snap. |
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Title: Re: What's Up!? I was just diagnosed today... Post by chewy on Dec 31st, 2005, 12:31pm Quote:
If I were you I would seek out another neurologist for a second opinion. |
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Title: Re: What's Up!? I was just diagnosed today... Post by Will_Williams on Jan 12th, 2006, 1:39am on 12/29/05 at 01:06:35, E-Double wrote:
^^^OH GOD!!! Why couldn't you have been more specific!?! |
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Title: Re: What's Up!? I was just diagnosed today... Post by E-Double on Jan 13th, 2006, 2:43pm on 01/12/06 at 01:39:04, Will_Williams wrote:
Sorry dude!! Indomethacin is like advil on roids. Despite being in the same class of medications as Ibuprofein and Naproxen(NSAID) it is extremely effective in preventing several OTHER big time headache types that OTC NSAID will not nor other perscription NSAID will not. However it does not help CH with the exception of a few who had some success using high dose suppository. I was on it for over a year straight to help with another type of headache that I have. It certainly did help yet it did not touch the clusters. Anyway, when trying to come off of it Rebound Headache occurs. If on it for a short period it may not yet when on it at high doses for an extended period of time, I guarantee you that agony will come your way if trying to come off. Rebound, though a different type of pain than CH is extremely terrible!!!!! That's it my friend. good luck and sorry to have left you hanging. E |
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