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Title: Getting desperate!!! Need help NOW!! Post by athimmel on May 31st, 2005, 2:03pm Hi folks....it's been awhile. I just finished a wonderful time of remission (about 6 months). But as of last Monday....oh my.... I am currently taking Verapamil as a preventative. It does help. When I stopped taking it, I could tell a major difference. The problem is, Maxalt and Imitrex seem to have stopped working for me. In fact, I had to take 2 Maxalt yesterday, and by the time it worked, I felt almost paralyzed! Literally! I laid down on the couch and felt like my body was made of lead. Laid there for 1 1/2 hrs fading in and out of sleep. I have tried Amerge (did NOTHING). Took Zomig (oh man...did I feel sick taking that!!!). Anyway, these 7s, 8s, and 9s are driving me nuts! I wanted to know if anyone out there has tried: RELPAX AXERT FROVA, or MIGRANAL My neurologist wants me to try Migranal, but I don't do well with nasal inhalants (nosebleeds something awful). I really need some FAST advice on these meds. O2 isn't really an option, cause I need something when these attacks hit me at work. Please....HELP?!?! |
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Title: Re: Getting desperate!!! Need help NOW!! Post by thomas on May 31st, 2005, 2:17pm Why can you not use O2 at work? They make portable E tanks. |
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Title: Re: Getting desperate!!! Need help NOW!! Post by E-Double on May 31st, 2005, 2:19pm What do you do that you can not keep a "D" tank around...it can fit in a large backpack if O2 is what works 4 ya! I use the trex injections and other than Zomig zmt and NS I have not tried any other triptans. Sorry I can not offer more |
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Title: Re: Getting desperate!!! Need help NOW!! Post by seasonalboomer on May 31st, 2005, 2:26pm There are many places that nowadays have pretty heavy security restrictions on many items. Outside of the obvious professions that might frown on O2 in the workplace (Glass blowing, Metallurgy, Blacksmith, Bunson burner repair, Jewelry repair) you will also find many high rise office buildings have some of the same restrictions that you might find going through the security gates to get on a plane. |
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Title: Re: Getting desperate!!! Need help NOW!! Post by athimmel on May 31st, 2005, 2:28pm I have not tried O2. I'm not sure of my reasons. Maybe it's because I already lug around a bunch of stuff and don't want to have to carry even more. Also, other aspects of my work make it impossible to carry a tank around. I suppose I could try it at home if nothing else. However, I really need some kind of medicine that will interrupt the CH and that I can carry in my pocket. Thus, my reasons for asking about the listed meds. Anyone with info on the listed ones? One more thing: Frova's website says that it has not been proven effective for clusters. Anyone find that to be true? |
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Title: Re: Getting desperate!!! Need help NOW!! Post by seasonalboomer on May 31st, 2005, 2:31pm on the other side of the O2 question, if you read through much of what is on this site -- it is probably the most widely accepted ABORTIVE you will find. So, as you consider your reasons for not doing so, make sure vanity isn't on the list. It seems, it is one of the best tools on the belt and finding a way to integrate it, if you don't have the security issues, would make it very worthwhile. |
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Title: Re: Getting desperate!!! Need help NOW!! Post by athimmel on May 31st, 2005, 2:33pm Seasonal, I could use it at home, but it is an issue at work, as I work for an electronics manufacturing company that wouldn't appreciate me bringing it in to work. |
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Title: Re: Getting desperate!!! Need help NOW!! Post by seasonalboomer on May 31st, 2005, 2:39pm I hear ya on that. You can add that one to the list of 02 unfreindlies. :-[ |
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Title: Re: Getting desperate!!! Need help NOW!! Post by bnfreeman on May 31st, 2005, 3:50pm I have tried all 4. Relpax use to help, but not anymore. Frova has worked for my shadows, not my 9s and 10s. The same for Axert. And migranal worked once. I don't like the whole nose thing because of the drainage that comes with it. Relpax used to work well with my first cycle. Then I think the CH found a new route in my head around it. Good luck! BF |
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Title: Re: Getting desperate!!! Need help NOW!! Post by E-Double on May 31st, 2005, 3:58pm As well all know it is very difficult to explain what it is we go through.... Many look at us as if there is no way in hell something can be that debilitating. Here is a letter that you can give your employers, colleagues, friends, etc. that will explain in very simple language what it is that we go through. How CH is a misnomer!! http://www.clusterheadaches.org/Cluster%20Headache%20Syndrome.doc Wishing you all Pain Free Days!!!!!!and Nights Eric |
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Title: Re: Getting desperate!!! Need help NOW!! Post by athimmel on May 31st, 2005, 4:03pm E-Doub... Thanks for the info...but my co-workers don't have any probs with me explaining the situation. I just tell them to imagine running a knife into one eye...they get the picture. The problem isn't my co-workers...it is just company rules. I just need to decide what to tell my neurologist as far as what I want to try next. That's why I asked for the input. |
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Title: Re: Getting desperate!!! Need help NOW!! Post by E-Double on May 31st, 2005, 4:04pm good luck! |
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Title: Re: Getting desperate!!! Need help NOW!! Post by marlinsfan on May 31st, 2005, 4:08pm I'm sorry to hear what'shappening. I had a few days 3 weeks ago when mine came during work hours (after coming at night), I ended up staying home and took sick days. My company was cool with that, maybe yours is too? If you can do that for a day or 2, take the O2 at home, and maybe abort it fast? Just a thought. I have never taken O2, but just got a prescription which I'll fill later today. The med supply told me I didn't need pres, only $$. If I want insurance to pay, then yes, I need medical recipe. Be well. |
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Title: Re: Getting desperate!!! Need help NOW!! Post by athimmel on May 31st, 2005, 4:12pm Hi Marlinsfan! My doc says he'll prescribe the O2 at no cost to me, so I might do that after all. But I still need something I can take at other times. |
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Title: Re: Getting desperate!!! Need help NOW!! Post by lionsound on May 31st, 2005, 4:26pm just a thought... I find myself in a situation next week where I'll be working in a place that I cannot bring the O2 inside to have near me. I will be leaving it in my van. If I need it, I have permission to go out and use it. Could that maybe work for you? be well, lionsound |
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Title: Re: Getting desperate!!! Need help NOW!! Post by athimmel on May 31st, 2005, 4:29pm It might, lion. However, I do have a concern about that.... The summertime gets over 100 degrees here. Not sure I want to leave the O2 canister in my car at that temp! |
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Title: Re: Getting desperate!!! Need help NOW!! Post by lionsound on May 31st, 2005, 4:39pm Ya know, I was wondering about the temperature where you live . (I live in Maine..not usually a problem) Does anyone know about 02 tanks sitting in the extreme heat of a car? athimmel, if no one answers ask/PM Jonny. he'll know. |
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Title: Re: Getting desperate!!! Need help NOW!! Post by athimmel on May 31st, 2005, 4:41pm Thanks lion... btw..do you have any experience with the meds I listed? |
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Title: Re: Getting desperate!!! Need help NOW!! Post by lionsound on May 31st, 2005, 5:08pm on 05/31/05 at 14:03:18, athimmel wrote:
First it's important that I say I have CH and migraines so I've used these as abortives for both and they either worked or didn't for both and were scripted for both. I see a headache specialist. Lets see... FROVA...took once caused funky vision focusing side effect went to the ER for CT scan...nothing came of it. AXERT, RELPAX...didn't work fast enough for the CH ot long enough to kill the migraine. IMITREX injections and O2 have worked best for me all the way around. MIGRANAL is a nasal form of DHE and you cannot use it within 24 hours of a triptan(like frova, axert, relpax, imitrex) you could die. In fact you shouldn't mix any triptans within 24 hours of each other . I was given it as an emergency use only when all else fails kind of thing when I cannot break a CH migraine combo. Interesting you were given it just for CH. Haven't had to use it yet, thank goodness. |
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Title: Re: Getting desperate!!! Need help NOW!! Post by E-Double on May 31st, 2005, 5:11pm on 05/31/05 at 16:29:41, athimmel wrote:
on 05/31/05 at 16:39:06, lionsound wrote:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1117572170 |
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Title: Re: Getting desperate!!! Need help NOW!! Post by athimmel on May 31st, 2005, 5:23pm wow...thanks E Glad you pointed that out |
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Title: Re: Getting desperate!!! Need help NOW!! Post by plazticsoul on May 31st, 2005, 8:09pm I tried FROVA, but not through a doctor. A friend who had a script explained what it was and because I'd never heard of it, I had a lot of curiosity and some new hope. Did nothing for me, though. That isn't to say it won't work for someone else. |
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Title: Re: Getting desperate!!! Need help NOW!! Post by athimmel on Jun 3rd, 2005, 1:06pm Well...just wanted you all to know what I've decided. After researching Frova and Relpax, and looking up info on Migranal.... After listening to my primary care physician trying to get me to take anti-seizure meds.... After reading the info on oxygen.... I told my neurologist to go ahead and refill my Imitrex prescription (not the MOST effective, but relatively so), and to turn in a prescription for O2. The way I figured it, I have enough bad reactions to meds....if oxygen works, I should give it a try. Thanks to all for your advice. I hope this works, and best wishes to all of you who are fighting the same battle. |
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