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Title: First timer----These things SUCK!!! Post by soonerfan on Aug 12th, 2005, 9:17pm What did I do to deserve these? It's been going strong for 6 weeks now. It's almost funny thinking back to the beginning and thinking that I had sinus problems and wasting money on Sudafed. I first went to my family doctor and then to the eye doctor and then to the (first) neuro guy. I even went to a chiropractor which felt great but did absolutely nothing for the CH. Has anyone else besides me tried that or am I the only one desperate enough? It's so frustrating how unimportant some of these doctors seem to try and make these headaches. I actually had to request the meds that I had researched myself. He was completely uninterested in my case whatsoever. And the crappy thing is, is that I was having a headache when I was in the friggin office. My eyelid was swelled halfway shut and leaking like a siv. Anyway, he gave me the Imitrex, Zomig, and Topomax that I wanted and needed at the time but I'm getting into a more thorough and apparently more sympathetic doctor on Monday. Here's my regime as of right now that seems to be working ok but the pain is still constantly lingering. Imitrex at the onset of the the two that I get at around 8am and then at around noon. I try to not take another one of those the rest of the day because if I do insurance won't pay and running out SUCKS! When I get home at around six I have a dull annoying but not usually killer one so I suck on the tank which helps. Before I go to bed at ten I take a Zomig with 800mg of Ibuprofen and maybe a sleeping pill but not usually necessary. I might wake up with a CH in the night but usually early enough where the tank will make it go away enough where I can go back to sleep. This would be a day with no surprise attack in the evening where oxygen doesn't help or in the middle of the night where oxygen doesn't help or when crappy doctors or insurance won't prescribe or help pay for more meds. I have a couple questions for anyone out there: 1: I've just recently quit smoking. Recently being 36 hours since my last cigarette. Will I notice a difference as soon as the nicotine is out of my system in a couple more days? I know that I should have quit sooner but I was hoping that this cycle would stop before now and plus I'm addicted. I haven’t touched a drink at all in a long time because that's just like lighting a fuse to my skull. So will I notice a decrease by quitting smoking alone? 2: When I go to my new neuro guy on Monday, what are some really good things to ask for as far as what's worked for you guys? My Topamax doesn't really seem to be doing much. I'm sure that the Doc. will know but that's what I thought last time and he was just a jerk. I guess that I've been lucky enough in that I've been able to keep drugs with me to take when needed but it never really seems to get rid of the headaches or the worry associated with them. I've only had to go the emergency room once although my wife has wanted me to go a couple of other times. Don't get me wrong, I've been at work twice in the past three weeks without meds and thought that I was going to jump off the roof (not really but I'm sure you all know where I'm coming from). Plus I work at a call center and those headsets over your ears are like torture. I feel good right now and It does actually feel good to right this and to relate to others. Sorry that I've been rambling for a bit. |
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Title: Re: First timer----These things SUCK!!! Post by unsolved1 on Aug 12th, 2005, 9:59pm Welcome Soonerfan! If you're asking ... quitting smoking will not help clusterheadaches. (If it were only that easy!) Topamax ... Beware of kidney stones -->Drink lots of water. Some actually find some relief with Topamax...I didn't. Check this out: http://www.brightok.net/~mnjday/chtherapy.pdf Goodluck, UNsolved |
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Title: Re: First timer----These things SUCK!!! Post by soonerfan on Aug 12th, 2005, 10:23pm Yea I don't know about the Topamax either. From what I read it's more for preventing migraines and not for breaking the cycle of CH. UNsolved, are/were you a smoker with CH? Just wondering. Thanks for the advise with the water. |
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Title: Re: First timer----These things SUCK!!! Post by E-Double on Aug 12th, 2005, 10:25pm Before I say anything else......... Do not mix Triptans!!!!!!!!!! It is very dangerous to be taking imitrex then to be taking zomig. the rule of thumb is to wait 24 hrs. between switching meds!!!!!!!!! Now that I have said that, Welcome aboard! To answer your question about deserving "this".....you are of a special breed ;) Your story is very common and I went down the same path for many yrs. 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.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 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. With the exception of 8-10 times.....I have slept through the night since August.....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 side effects....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. Hang in there my new friend!!! Eric |
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Title: Re: First timer----These things SUCK!!! Post by soonerfan on Aug 12th, 2005, 10:39pm I didn't realize that I shouldn't mix Triptans. I got the Imitrex from the GP and then got the Zomig when I finally saw the neuro. I did tell the neuro guy that I was on the Imitrex. One more reason not to trust that guy. I'll definately mention this to the new guy on Monday. Lots of good information that I really appreciate. Thank you Eric! |
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Title: Re: First timer----These things SUCK!!! Post by unsolved1 on Aug 12th, 2005, 10:56pm Yes, I am a smoker. I quit for almost a year and still had cluster headaches everyday. Then I started back. Good advice about the Triptans. You should never mix them. UNsolved |
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Title: Re: First timer----These things SUCK!!! Post by soonerfan on Aug 12th, 2005, 10:59pm What happens when you mix the triptans? |
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Title: Re: First timer----These things SUCK!!! Post by allan_r on Aug 12th, 2005, 11:07pm I was able to get three months of use out of the topomax- but it took two-three weeks to be effective as soon as it got up to 100mg. However, I think you should talk to the neorologist about a prednisone to verapamil-- many people find instant relief with the prednisone, but it can''t be taken for long. Anecdotally, it worked and ended the cycle the first time i was in and did the same recently for a colleague who was recently diagnosed. The topomax should be the third or fourth drug you try- especially with the side effects. But as everyone on this board will tell you- everything is a crapshoot- and everyone reacts differently. allan r. |
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Title: Re: First timer----These things SUCK!!! Post by jcmquix on Aug 12th, 2005, 11:15pm Hi soonerfan.. Nice to have you aboard, sorry we have to meet under these conditions, but you are in the right place for CH. Eric basically gave you all the information that you need to get started fighting the BEAST, he was a great help when I first showed up here over 2 months ago. Along with him and the other people here on this site they gave Me & My Wife (Sassy_Lady) new hope and information on kicking this BEAST to the curb. There is alot of collective information on different Preventives & Abortives, most of these people on this site are not DR's, but have alot of knowledge dealing with CH. Read, Read & Read more, if you are doing the TREX check out the link to the left, its helped me alot, since I have a restriction with my Insurance Company too. Also try getting you Nero Dr to call your Insurance Company and talk to a Staff Nurse to explain that you have CH and you need more than the normal amount of TREX. Mine got me 12 extra shots a month. I divide each shot into 3 shots from 1 statdose injection, usually 1/3 is enough to kick a HA for me (this way it can also help keep you from going over 3 full shots in 24hrs), IM me if you need more details. Stick around, if you need support or just need to Rant or have a question to ask, just post, someone will come along shortly, the lights are always on here 24/7/365. Hope you find PF days soon !!! Charlie |
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Title: Re: First timer----These things SUCK!!! Post by jcmquix on Aug 12th, 2005, 11:24pm on 08/12/05 at 22:59:11, soonerfan wrote:
Different Brands, along with differt methods (Pill,Shot, etc..) all are in different doses and basically the same ingredents. Like TREX inj, you are not supposed to use more than 2 shots in 24hrs, more than that puts stress on your Heart and other body functions. As far as I know it is not a Medical Fact, but when I was using the Max on the Abortives (Trex) I was getting more HA's, I (myself) think they were Rebound HA's from to much of the Abortive (Trex), when I started dividing the shots to abort a HA I was usuing less of the TREX and getting fewer HA's. Their is no Medical proof to this, but it did help me. As Eric stated, DO NOT MIX THE TRIPTANS !!! PFDAN's to you !! Charlie |
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Title: Re: First timer----These things SUCK!!! Post by ClusterChuck on Aug 12th, 2005, 11:33pm As others have said: Do NOT mix triptans!!! Wait 24 hours between. If you don't you can go into cardiac arrest. I think I call that a serious health hazzard. Dope-o-max (topomax) is usually used with another drug, like lithium. Rarely does much on its own. But ask about verapamil. That is the number one preventative here. The unfortunate thing is that you will have to use trial and error until you get the right cocktail. As far as oxygen, make sure you are using it properly. If you don't use it correctly, it will not work. Get on it as soon as you feel one coming on. Carry a tank with you to work, and in your car. Here is a link to a post I put in the medical section: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1123513751 IM me if you need to talk to someone in person. I will give you my phone number. Sorry you have to be here, but if you have to, you are in the best placed. Welcome aboard! Chuck |
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Title: Re: First timer----These things SUCK!!! Post by E-Double on Aug 13th, 2005, 6:58am on 08/12/05 at 22:45:23, soonerfan wrote:
I'm sorry to scare you and not be around to clarify!!! Charlie said it fairly well in tha talthough they are all trpiptan medications they come in differen tdosages and have different half lives. Because of this, if one mixes you run the risk of having a cardiac event. Imitrex is the fastest acting and may be out of system the quickest. Next is zomig. Most doctors who are really up to date on research will perscribe amerge or frova IF they want to try it as a preventative @ night before bed. Those stay in system longer and apparently are used more for migriane because of this so the rationale is that it may have preventative features if used this way. There are different meds to be used as preventatives and also other choices to use as abortive meds. Ex. of abortive which can also have preventative qualities: I gave you a link to "zyprexa" which I have used as an abortive. I can take it alone, or with a triptan. I recently started having breakthroughs in the middle of the night and for me is not as sure-fire as it used to be ( i should probably update what I said above) so Dr. Sheftell from NECH (godsend) suggested that I amy use the zyprexa as a pre-emtive strike. Any way, the chances are you are and will be fine but why risk it!!! What happens if you are close to limit on one then take the other and god for bid!!! Be well and though we may not be doctors we have a collective millenia of knowledge. I pretty sure that I am close to being on the money but could be wrong. Good luck my man! E 2 |
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Title: Re: First timer----These things SUCK!!! Post by Kim Y. on Aug 13th, 2005, 10:14am Soonerfan Quote:
You didn't do anything. :-/ We all just got really unlucky to have the beast pick at us. We all wish that he would have bypassed us but we weren't so lucky. Definitly watch the triptans. Your heart is a very valuble instrument. E-double has given you some valuable information. Read Read Read. Even print out what to take to the Neuro. Good luck with your appointment. PF wishes and vibes. Kim |
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Title: Re: First timer----These things SUCK!!! Post by bnfreeman on Aug 13th, 2005, 1:14pm It sounds like you are on the right track. Don't take any crap from a doctor! If they don't want to listen, or they are offended by your knowledge of what is going on with you, then screw them! I too went through the "why mees?" And still do a lot. I am still knew to this. But thanks to everyone here I know I am not crazy. They have taught me a lot. And you can learn alot too. Stick around. I used to smoke and quit before I started getting clusters. I started smoking again just recently and haven't noticed a difference with my headaches. I think you will find a lot of people here that do. Look around on the board there is a poll somewhere. Good Luck! Brandi |
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Title: Re: First timer----These things SUCK!!! Post by redtaz on Aug 13th, 2005, 1:48pm Quote:
The way i look at it is, if i didnt have it then i wouldnt have met such a diverse,knowledgeble, ;;D Dape ;;D |
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