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Title: new new new Post by blmiller84 on Mar 31st, 2007, 3:57pm Hey everyone, So here's the basics about me, or as much as I can think to type! Anyhow, this may be long ;) Started with abdominal migraines at age 11. The doctors, after over half a year of horrible tests (anything they could think of relating to the abdomen), gave up. Either that or I just stopped cooperating... I don't remember. Oh, I'm 22 now. Anyway, I had random bad headaches up until I was 14, and then I started getting headaches that lasted a week or 2 at a time, just more severe at certain times of the day. The doctors at that point did the history report and said "you have migraines. I won't give you any strong meds or anything, just take ibuprofen or excedrin every 4 hours". So I did. And got somewhat addicted to them. I can't take anything with acetaminophen in it without getting sick. So I stopped taking any type of OTC pain killers when I started college, and they still said I just had migraines. After having headaches so bad that I forgot things such as my chem locker combination, I went to the American Migraine Center where they said I had Cluster Headaches. I was put on amitriptyline as a preventative, but it gave me bad insomnia and I got sick whenever I ate anything. So they switched it to Nortriptyline, which worked for over a year until I started getting bad insomnia and sick when I ate anything at all. I stopped preventatives for half a year, then this past December I was put on neurontin, but I didn't help. I was on it for over 2 months and the only thing it did was make me want to sleep 24/7. Aside from those preventatives, I have tried some abortives. First was Imitrex. An hour after I took it, I felt like I was going to die. Next I tried frova which seemed to do nothing, but at least no side effects! I also tried a few things that effected the nervous system... I just can't remember the names of them... [smiley=huh.gif] all I know is they did nothing! Hm. What else meds wise... oh, I take magnesium supplements which seem to help more than anything else. I have to constantly be drinking water or gatorade, getting even slightly dehydrated is horrible. And sleep. I have to get enough sleep every day. I can go a day or two with a messed up sleep schedule, but if I don't sleep a lot after that, its bad. My triggers... are just the weather (mostly just when the pressure drops) and smoke. and I guess lack of sleep :) My headache... my evil headaches... The pain is in sort of a triangle from the middle of my right eye, to my right temple , to a spot right above my right eye. During the entire cycle I have this faint constant headache, not enough to bother me other than knowing it could get worse at any moment. The first headache of my cycle usually occurs at 2am, just a few hours after I go to sleep. Then they typically occur at 3pm, 7pm, and then sometime in the middle of the night. And this happens for at least 2 weeks. OOOH... I had an aura. Those lovely little silvery dots of light flying around. Taking preventatives for over a year seems to have make them go away :) Those things are soooo distracting when you are trying to pay attention in Abstract Algebra to learn how to do a proof. I can actually be around florescent lights now (I think that is what type they are). Did I mention I'm a mathematician? yeah... the headaches make math harder ::) |
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Title: Re: new new new Post by Lobster on Mar 31st, 2007, 4:37pm Welcome mate. Read up... lots of info here. Did I mention I'm a mathematician? yeah... the headaches make math harder Then avoid the Topa, or just try it for fun to see what it does to the math center of your skull. My primary Topamax side-effect was the utter failure of my math center. As an example, I could not compute a simple 20% tip without extreme difficulty. Funny/scary stuff. |
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Title: Re: new new new Post by ClusterChuck on Mar 31st, 2007, 5:10pm I am sorry you have to be here, but if you have clusters, this IS the place to be! Welcome aboard! I did not see you mention the most successful preventative medication. That is Verapamil. MANY get good results from that med. Ask your doctor about it. Second, is abortives. Coffee, Red Bull are two non-prescription products that help many of us. You said imitex was not pleasant for you. What type did you take? A pill, nasal spray, or injectable? Most of us, that use 'trex, use the injectable, as it is quickest acting. And there is a trick, where you can use less than the self injector pen doles out, that you might try. Maybe the lower amount will abort, without the side effects. And then there is pure oxygen. The safest, cheapest, and most effective method for most of us. But, if it is not used properly, it won't work. See the tab "oxygen info" on the left side of your screen. Ask any questions you may have. Most of us know more about this than the doctors do. We want to help. Again, welcome to Clusterville ... Chuck |
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Title: Re: new new new Post by Guiseppi on Mar 31st, 2007, 5:28pm What Chuck said! Oxygen, Oxygen Oxygen. Started at the first hint of a headache it will abort the majority of mine in less then 10 minutes. I use Oxygen and imitrex injectables as an abortive, with lithium as a preventative. I hope you're keeping a headache journal. Your doctor will find it invaluable in the diagnosis. Several things you talk about make me think you're one of the Migraine/Cluster sufferers. The worst of both worlds. Stick around, read everything and get ready to educate your doctors. You'll find they don't help you much until AFTER you educate them. Welcome aboard! Guiseppi |
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Title: Re: new new new Post by blmiller84 on Mar 31st, 2007, 5:59pm Let's see.. The Verapamil. Both my primary dr and my headache dr wanted to hold off on using the blood pressure related meds for some reason. I currently am without health insurance, I was dropped once I graduated from college and I will hopefully hopefully be starting grad school in the fall, when I will get pretty decent health insurance. So I can't afford to see a dr at the moment. When I went back in December it costs me a week pay for the dr visit and the meds! I can't afford that right now... sigh... I need to go read up on the oxygen posts here. And give it a try whenever I'm able! And there are migraine & CH suffers? I do think I might still get both :-/ Some of my headaches are without the CH symptoms and I'm able to just curl up in bed with no lights and sound. I can't do that with the very CH symptom ones. Those I pace and want to just bang my head into a wall repeatedly... but I don't. Back to reading the tons of posts :) |
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Title: Re: new new new Post by E-Double on Mar 31st, 2007, 9:20pm Hiya 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 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=medsarchive2005;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 now just awaken from a 9 month old haha).....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. (Maybe I should start following my own advice again but then I might not wake up for the baby and wife will give me a real headache ;) 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!!!! |
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Title: Re: new new new Post by Linda_Howell on Mar 31st, 2007, 9:33pm Quote:
DEMANDED is the operative word here. 02 works so great for so many and has the least amount of side-effects. It's cheap compared to the other drugs we take also. Demanded? because for some unseen reason some Dr. are reluctant to prescribe it. It needs to be demanded. Linda |
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Title: Re: new new new Post by swimchica623 on Apr 3rd, 2007, 2:11pm Hi!!!!!!! So nice to meet you! I am sorry you are here but glad you found this place. Everyone here is really nice to talk to but I have always wished there was someone right around my age to talk to...I noticed the 84 in your screen name and thought you might be and whaddya know!!! I'm 21..just about to graduate college. If you have AOL IM that would be super, send me a message at swimchica623! Lisa |
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Title: Re: new new new Post by BarbaraD on Apr 3rd, 2007, 5:15pm O2 O2 O2.... the initial set up shouldn't cost you more than about $50 and that's with two tanks. Each tank refil will be about $12. You'll need a regulator that goes to 15 liters per minute and a NON-REBREATHER mask. Anything else is USELESS! DEMAND O2. Red Bull (chug-a-lug) a can at the first sign of CH (works pretty good on migraines) - Coffee (I drink it by the gallon). Melatonin at night before bed (I do about 12-15mg). I take Ergotomine (Cafergot) as a preventative. It doesn't seem to have the side effects that Imitrex has and costs a whole lot less. I've taken it for years after I didn't like the way Imitrex made me feel. Sorry you have to be here, but this is the best place to be with CH (and a lot of us have those nasty old migraine along with CH so you're not alone in that either). Hugs BD |
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Title: Re: new new new Post by Rosybabe on Apr 4th, 2007, 8:17pm Hi Miller!! Welcome aboard!! I also use cafergot because imitrex makes me feel like I am having a heart attack, but O2 should be your first abortive method, Red Bull, too. Hang in there! We are here to help you!! |
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Title: Re: new new new Post by Callico on Apr 8th, 2007, 12:13am Welcome aboard. Yes you can have both migraine and CH. It seems to happen more often with women than men, but that is probably because more men get CH than do women. I know that I started out with migraines as a kid ( unusual for a guy) butthey morphed into CH when I was about 22 or 23. I used to occasionally get a migraine when I was out of cycle with the CH, but since going chronic I have not had one. Jerry |
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