|
||||||
|
Title: OK... What next? Post by ExplodingEyeBall on May 31st, 2006, 9:58am I've had CH for as long as I can remember. I didn't get diagnosed till a couple years ago right when I first found this place. I tried some of the abortives the Neuro gave me and thought they worked. It was most likely just the end of that cycle. Last year, I didn't really have much of a cycle with the exception of a lot of shadowing on the wrong side of the head. This year, the cycle has come back full force. I still have some of the med samples my neuro gave me but they are outdated and I don't know if they are not working because of that or if they just don't work for me. I tried the Maxalt two nights ago and it did nothing for me, which doesn't surprise me. Last night, I was up at the usual time (1:30 A.M.) and took an Imitrex Sumatriptan 100 MG tab as soon as I got up. I then spent the next hour beating my head, pulling my hair, cursing, rocking, pacing, etc.......... Advice????? Should I talk the neuro about getting more samples of the Imitrex tabs or try something else. Hint: I am a needle wussy. Is there any other (legal) abortive that I can try that doesn't involve an O2 tank or a needle? I don't know how the chronics here can handle it. If I had to go through this every day without a break, I'd be a nut case. Wait.................. I AM a nut case. Never mind. [smiley=hammer.gif] |
||||||
|
Title: Re: OK... What next? Post by Redd715 on May 31st, 2006, 10:07am O2 is the safest thing there is out there to abort a hit, and the trex jabs are fast working if you can get past the needle thing. There is also zomig nasal spray to abort. Zeprexa (sp) E-Double sears by that as an abortive. Now, here's another question, what are you taking for a preventative? Need to talk to the Neuro about all of it dear....abortives stop a single attack, it's the preventives that help with the quality of life during a cycle. I used to hate needles too, but I'll admit when my head raged, a needle was small potatos in comparison. |
||||||
|
Title: Re: OK... What next? Post by seasonalboomer on May 31st, 2006, 10:07am I know you say you are a needle-wuss. But, have you ever tried the injection? The result made me get over that phobia/discomfort quick. Eventually the idea of the temporary discomfort of a needle in the leg or arm for the quick relief it brought made me get over it. You don't even see the needle really with the injector system. Beats beating your head against the wall. What's up with the aversion to O2? Scott |
||||||
|
Title: Re: OK... What next? Post by nani on May 31st, 2006, 10:09am How about Zomig nasal? And maybe, um, kudzu as a prevent? |
||||||
|
Title: Re: OK... What next? Post by Kevin_M on May 31st, 2006, 10:09am Sure, Imitrex has the nasal spray. Abort times can vary but in time they're pretty sure fire if Imitrex works for you. Even my internist seemed to have a good amount of samples that were old, which probably meant he had no one else to give them to so I guess they were lying around waiting for me to ask. Get prepared. |
||||||
|
Title: Re: OK... What next? Post by Opus on May 31st, 2006, 10:12am Get the nasal version of Imitrex, takes longer to work and you will need to saline first but if you hate needles and O2 so much. Get on a preventative, Verapamil is cheap. Being Chronic isn't so bad, I had 21 PF days in a row which was nice. I just realized that I have been Chronic for as long as I stopped using Microsoft windows. Perhaps lack of stress is the problem? Opus/Paul |
||||||
|
Title: Re: OK... What next? Post by Tom K on May 31st, 2006, 10:14am Or give Zomig nasal a try, I know Jonny sweared by it. It didn't do anything for me, but YMMV. Worth a shot...no pun intended ;;D |
||||||
|
Title: Re: OK... What next? Post by ExplodingEyeBall on May 31st, 2006, 10:39am After last night, I don't know if Imitrex is going to work for me unless the injections are that much different from the tabs. Although I am a needle wussy, I would have let someone shoot me up with a knitting needle last night if they would have told me it would help so I would try the injections. O2??? I'm not chronic andI don't know if it would be worth it to have the O2 bottle and stuff around all the time. Zomig and verapamil sound interesting to me. Any problems with interactions? How are the insurance companies about paying for the stuff? If I could find something that would knock it down from a KIP 10 to a KIP 7 I'd be happy. I could actually sleep a little. Thanks for all of the advice guys and gals.. [smiley=bow.gif] |
||||||
|
Title: Re: OK... What next? Post by seasonalboomer on May 31st, 2006, 10:47am on 05/31/06 at 10:39:35, ExplodingEyeBall wrote:
Okay, now you've done it!! Why do so many so UNDERVALUE there own quality of life here. WORTH IT? Geez! You deserve it, believe me. Let's say it killed half of the headaches you get in less than 10 minutes. Would that be WORTH IT? Damn right it would. So you have a tank around, take it back after your cycle is over and arrange to get one again when you start getting that feeling. Let's say that out of the other half you get kill 50% of those with injectable imitrex or the nasal inhaler form. Would that be worth it? Think about how many times each one of us has said, "I'd do anything to not have to go through the pain i'm in right now." So get off the "not worth it", or whether it is worth the trouble, or "I'm only episodic and don't have to bear what chronics do". You think chronics think an episodic is a wuss for getting O2? hell no they don't! Make use of the tools available, including your noggan. Scott |
||||||
|
Title: Re: OK... What next? Post by Tom K on May 31st, 2006, 11:03am Trex inject works in about 5-10 minutes. They come in Statdoses which are like Epi-pens, 2 to a pack. Either 6mg or 4mg. I have both, I like the 4 more better. I also have vials, I draw 25 insulin units per dose, about 3mg. If you work at it, you can get about 2.5 doses out of a vial, YMMV. The key with either is not to shoot it in the muscle, it is subcue. I shoot in the stomach, since I have more than enough fat to go around ;;D And don't look at O2 as having to have a tank around. You don't have to go with one of the big M tanks, get a couple of E tanks. The relief you get with O2 is well worth the trouble. Plus, you can always cover your tank with a pillow case when not in use! |
||||||
|
Title: Re: OK... What next? Post by Opus on May 31st, 2006, 11:11am on 05/31/06 at 10:39:35, ExplodingEyeBall wrote:
The tabs are for migraines, they will work in a couple of hours to kill a migraine that would normally last 3 days. The injections will work in 10 minutes. Imitrex injections are FDA approved treatment for CH. on 05/31/06 at 10:39:35, ExplodingEyeBall wrote:
Verapamil is cheap, getting the doc to give you a high enough level is the hard part. All triptans are expensive, O2 is by far cheaper, but some insurances won't cover it. on 05/31/06 at 10:39:35, ExplodingEyeBall wrote:
You must mean a Kip3. A Kip 7 means you dance. A kip 10 is pray for death time. Opus/Paul |
||||||
|
Title: Re: OK... What next? Post by ExplodingEyeBall on May 31st, 2006, 11:21am on 05/31/06 at 11:11:48, Opus wrote:
Thanks Paul. I would have welcomed death last night. I was to busy beating my head and pulling my hair to dance. I"m going to make an appointment with my Neuro and see about getting the Zomig or the injectors and Verapamil. What is the level of Verapamil that would be best? |
||||||
|
Title: Re: OK... What next? Post by Opus on May 31st, 2006, 11:46am on 05/31/06 at 11:21:38, ExplodingEyeBall wrote:
A list of meds (http://www.ouch-us.org/medications/medications.htm) A good paper on the treatment of CH (http://www.ouch-us.org/chgeneral/chmanage.htm) Max verapamil is 960mg. My doc won't go above 480mg, which is double she has ever prescribed, but she is not a Nero. I would print them both out and take them with you. Opus/Paul |
||||||
|
Title: Re: OK... What next? Post by rickyshot on May 31st, 2006, 11:47am I too am episodic and have the O2 . I got that advice from this site and believe me I am glad I did. It has aborted quite a few headaches or brought them down to a tolerable level on many occasions. The way these things feel, if I just aborted one ha the O2 would have been worth it. |
||||||
|
Title: Re: OK... What next? Post by sandie99 on May 31st, 2006, 11:49am You know me, I recommed energy drinks now to everyone.... ;;D Seriously, if you think that it could help out, give Red Bull a try. I was sceptical myself, but after being PF ater 5 minutes, I was convinced. Naturally its not an answer to all and like before every treatment it's useful to be careful. But that's my suggestion. Whatever is the next thing you try, I do hope that it works and that you're PF soon! :) Best wishes, Sanna |
||||||
|
Title: Re: OK... What next? Post by ExplodingEyeBall on May 31st, 2006, 11:55am on 05/31/06 at 11:49:54, sandie99 wrote:
Hearing that any place else, I'd laugh but because I saw it here, I'll stop on the way home and buy some Red Bull. If it doesn't work, I can at least make some Jeager bombs after the cycle is over. |
||||||
|
Title: Re: OK... What next? Post by aprilbee on May 31st, 2006, 11:57am I agree w/Scott....I'm episodic and the first SIGN of CH cycle starting, I am in w/my neuro getting the O2 and the meds....I take maxalt that melts on your tongue...I like it okay, but the O2 saves me from throwing myself off a building... |
||||||
|
Title: Re: OK... What next? Post by E-Double on May 31st, 2006, 12:26pm GET OXYGEN!!!!!!!!!!!!!! I also told ya last time that I would talk ya through the jabs! Just Holla atcha boyyyyyyyyyyyy |
||||||
|
Title: Re: OK... What next? Post by unsolved1 on May 31st, 2006, 1:57pm Quote:
When the attacks are painful enough, you'll stick yourself with Imitrex in a second! It sounds like you need the jabs. The pills and sprays do not have the same effect as the jabs. Goodluck and hope you find a good abortive soon. UNsolved |
||||||
|
Title: Re: OK... What next? Post by thomas on May 31st, 2006, 2:44pm O2 12-15 lpm. Quit beating around the fucking bush and just do it. |
||||||
|
Title: Re: OK... What next? Post by Charlie on May 31st, 2006, 8:21pm I'm no fan of needles and I thought I couldn't stab myself with anti-co-agulant, but I did about a dozen times. The stomach/gut proved to be much less painful or scary to use. It's no fun but not as bad as I thought. Just wanted to add my second to Tom K's post. Charlie |
||||||
|
Title: Re: OK... What next? Post by Jonny on May 31st, 2006, 8:31pm on 05/31/06 at 14:44:33, thomas wrote:
Could not have said it better my brother!! [smiley=headbanger.gif] |
||||||
|
Title: Re: OK... What next? Post by lionsound on May 31st, 2006, 9:44pm I am the biggest needle wuss ever..i make my kids hold MY hand when I get a shot or blood drawn.... and I can do it. get the trex shots. you can get itty bitty diabetic needles if you need them. And since I'm epichronic ;;D. I keep those 02 tanks around all the time with extras in the barn. I hardly notice them around my house...they kind of blend in..until i need them. :) I am never sorry they take up space during PF time. wouldn't it be nice to get some relief? pf's lionsound |
||||||
|
Title: Re: OK... What next? Post by FramCire on Jun 1st, 2006, 12:03am 1. If you don't get an O2 tank, you are nuts (unless it is way too expensive where you are). 2. Have you tried melatonin? I had a horrid first 3 days on it BUT since then I haven't had a 7+ since then. (I use 9mg, OTC) 3. I HATE NEEDLES!!! However, the imitrex jabs are not that bad. Especially when you need it. I got samples of it and I use them only when I need to. 4. Maxalt MLT (melt on your toungue) usually nips the bad HAs when O2 doesn't for me. Takes some time, but for a 7 or so, I don't mind waiting, as long as it works. 5. Zomig nasal spray made me sick. Some like it though. With all this said, isn't it ineresting how many chronics say that being chronic is easier for them because they don't live in fear while most episodic think being chronic would kill them/drive them nuts. I was episodic but this cycle started in November and it seems to be lingering on and on but wihtout 7+s. I'll be honest, I am much happier now than when I thought I only had 8 or so weeks of the 7+ hits. I know now what to expect and I wont let it alter my life in ANY WAY. Yes, I stay away from triggers, but otherwise, I am back to living life on my terms. |
||||||
|
Title: Re: OK... What next? Post by taraann on Jun 1st, 2006, 6:24am Yah make an appt. And personally when I am just having a seriously rough time (chronic here but sometimes are worse than others) and I end up in the ER I always make sure I get IV solumedrol (steroids) and then a 10 day taper of prednisone for at home. It sometimes is a great break (I still get hit but not as often or as hard) now SOMETIMES is the key word, and I truly do hate the side affects (irritable, my face gets a little swollen, and HUGE appetite) BUT it's worth the break it sometimes gives me. |
||||||
|
Title: Re: OK... What next? Post by Ghost on Jun 1st, 2006, 8:50am Don't you know not to ask that question? Sorry you are having a rough time. Oxygen!!!!!!!!! Mike |
||||||
|
Title: Re: OK... What next? Post by ExplodingEyeBall on Jun 1st, 2006, 10:00am Last night is the first time I have actually sobbed/cried out loud since my dad died. My wife sat up with me from 1:00 A.M. to about 2:30 trying desperately to find some way to help. She doesn't realize how much she helped by just getiing up out of bed and sitting with me. I'm calling the neuro today. I'm going to ask about the Imitrex jabs and maybe O2. 12 to 15 lpm on the O2? Special mask? I'll try to find out more about that stuff. Thanks everyone. [smiley=bow.gif] |
||||||
|
Title: Re: OK... What next? Post by Opus on Jun 1st, 2006, 3:08pm on 06/01/06 at 10:00:55, ExplodingEyeBall wrote:
See the buttons on the left, O2 and the Imitrex tip. If you can get the vials, it make s Imitrex easy to slip. Some people like me get side effects from the full shot. I use 1/3. Have your wife inject you where you have fat if the O2 fails. For the O2 if you get a standard non-rebreather mask, cut off the straps, it is best to tape over the exhale ports and lift the mask to exhale. Hold the mask tight to inhale. Test with tank off you should not be able to inhale, if you do there is a leak. Opus/Paul |
||||||
|
Title: Re: OK... What next? Post by ExplodingEyeBall on Jun 1st, 2006, 3:31pm I'm leaving in 10 minutes to talk to the doc. I'm going to try and get the shots. I won't have to worry about finding a fatty place to take it. Since I quit smoking, it's hard to find a place on me that's NOT fatty. |
||||||
|
Title: Re: OK... What next? Post by ExplodingEyeBall on Jun 2nd, 2006, 9:15am I did get the appointment to see the neuro. I found out after I got there that he's going to quit practicing to spend time with family so I'll have to start training another one already. I almost never get hit hard during the day but guess what? I got slammed hard while I was waiting in the exam room. Doc wanted to put me on an I.V. (outpatient for the next 3 days) and also mentioned some kind of steroids. I told him I'd rather not go that harsh right now. I mentioned O2 and just like the last time I mentioned it, he skirted around that one. I'm starting to think that the docs are subsidized by the drug industry. He seems to think that since the Imitrex tabs didn't work for me that the injector won't either. I talked him into them any way. ;;D He gave me two carry cases and Stat Dose pens and a scrip for 10 refills. MAN THAT SHIT IS EXPENSIVE!!!!!!!!!!!!! Thank God I found that my insurance company will actually cover me for this. $25.00 for the perscription. They would only allow 6 refills at a time though. Now, as usual, the beast has proven how unpredictable it can be. I had my Stat dose waiting and I went PF all night. I guess the hard hit earlier ion the day scared the night time one away. I've brought one carry case to work with me and will keep it here and the other at home. I really appreciate all of the advice I got from everyone. Next time I get hit, I'll be using one of these and I'll let you know how it works out for me. |
||||||
|
Title: Re: OK... What next? Post by E-Double on Jun 2nd, 2006, 9:47am You'll be ok!!! Good work and keep fighting for the O2 |
||||||
|
Title: Re: OK... What next? Post by nani on Jun 2nd, 2006, 10:00am Pat, fax this to his office and see if he can give you a scrip. http://www.chhelp.org/mhni.html I'm glad you got some jabs, but I think O2 will really help. |
||||||
|
Title: Re: OK... What next? Post by ExplodingEyeBall on Jun 2nd, 2006, 10:07am Thanks nani. I've already gone through the instructions for the jabs and showed my wife how to use them too. I'm sure that if I wimp out or can't function good enough to do it, she'd be happy to poke me after all the times I've poked at her. ::) Honey!!!! It's supposed to go in a fatty area!!! Not in my forehead!!!!!! |
||||||
|
Title: Re: OK... What next? Post by pattik on Jun 2nd, 2006, 10:12am Pat, during my last cycle, I had a 90% success rate using O2. Considering how safe and inexpensive it is compared with other abortives, you might find it to be another great weapon for your arsenal. Fight the good fight, and remember you can get lots of support right here. Pat |
||||||
|
Title: Re: OK... What next? Post by FramCire on Jun 2nd, 2006, 10:29am Pat, Call your primary care physician and see if he/she can give you a script for the O2. It is very safe (stay away from flames of course) and cheap. Why this Dr wont give you a script is beyond me. Tell your PCP that your nuero is quitting and that you didn't get an O2 script while you were there. O2 with non-rebreather should be abortive #1 in my book. Don't wait to get it. CALL TODAY!!!!!! If you can avoid using trex most of time, it will be well worth it for you!! |
||||||
|
Title: Re: OK... What next? Post by Tom K on Jun 2nd, 2006, 10:51am on 06/02/06 at 10:07:00, ExplodingEyeBall wrote:
Believe me, you won't wimp out and probably will be self injecting soon enough. Find a new doc as soon as you can. Check the OUCH board for the docs in your area. My doc is moving to Highland Park, IL in July. Don't know how much of a drive that is for you, but since being with her, I would drive up to and including 2 hours to see her! Hope the injects work for you. |
||||||
|
Title: Re: OK... What next? Post by ExplodingEyeBall on Jun 2nd, 2006, 11:52am The office my doc is on has a couple other neuros there so I may just look there. I don't think Highland Park IL is a very far cruise for me so I may head out that way if I need to. I live in N/W Indiana. Coincidentally...Highland Indiana. |
||||||
|
Title: Re: OK... What next? Post by Pinkfloyd on Jun 4th, 2006, 2:21am on 06/02/06 at 09:15:50, ExplodingEyeBall wrote:
Sounds to me that he quit "practicing" years ago. Now he's finally going to stop seeing patients. He should have done that when he quit practicing. F*ck him and find someone that cares enough to stay up on treatments. Bobw |
||||||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |