Its good to hear that he knows what he is doing, its just that I was going all the way to Cleveland to inquire about the nerve stimulators, not a block. I had a block done by a neurosurgeon 12 years ago in which they injected glycerol into the ganglion of my trigeminal nerve, and it didn't work at all. I was sedated & when I woke I had to be sitting up with my head taped to the bed in the recovery room for 5 hours & I kept getting HA's (my then husband kept sneaking me shots of imitrex). In fact, I had more HA's than ever after that procedure. So, now I'm not sure why my doc is sending me to him.

Thank you for that! I do feel a bit better about it now. I will be seeing him on the 25th & I really can't wait to see what he says. Its good to know that the stimulators are part of his research.

Well, I know the oxygen works for many people, but it doesn't work for me. I have tried it quite a few times, most recently at the HA specialists office, set as high as it would go with the right mask. Also at a clinic, in the hospital while pregnant & at home. They also gave me an occipital nerve block at the same time & that didn't work either. I'm on prednisone, verapamil & depakote & still getting a lot of hits. I can't really do the busting, I am a single mother of an autistic boy and I just need to always have my facilities in order, so to speak. If I had someone to help me at home, I would consider it. And even now, I haven't completely ruled it out, if after this I am still as bad as I am. Sort of my last resort, though. I have tried all the other prevents as well, lithium, neurontin, norvasc, topamax, ritilin, methadone, various anti depressants, indomethacin, solumedrol treatments, nerve blocks all over trigger points on my head, daily triptan doses as a prevent, and many more meds that I can't even think of right now. The energy drinks didn't help either. I just need to do something. If I was getting relief from the steroids, I would just stay on a lowered dose, but for some reason it's just not working. Even my HA specialist has agreed that I need something more. I don't know, maybe it's wrong. Maybe I am being incredibly stupid in tossing so much money at something that may not work. Even some in my family think that. But I just want a chance at a normal life. You know, as much pain as I am in each day, and I know all of you will understand this, I would even be willing to live with it if there was some way to make sure I always had imitrex. But who would ever give me 2 or 3 vials a day? And how fast would I be bankrupt if I had to lay that kind of money out indefinitely? My biggest fear is not having that imitrex. Its such a terrifying thought to me, knowing that in my future could be days of 4 attacks each day & no imitrex. I would rather not live at all than suffer like that. Well, anyway, that's the best I can explain, I guess.

I hope it goes well for you in May. I tried calling Glaxo about the patient assistance program & they told me that they are no longer doing it for the injections. I couldn't find any other rx programs that were. Is it a different pharmacutical program?

I actually called glaxo back & they said they do it for the nasal spray. They will pay for 8 per month, but they also said you could mix it, so I will try for 8 of the 20mg & 8 of the 5mg spray bottles. I figured it would be better than nothing. Also, I called sandoz & novartis labs, they aren't offering any injectibles for their generic sumatriptan. But thank you, because it was after reading your post that made me decide to try again with glaxo. The first time I called them, they didn't even tell me about the nasal spray. At least, I don't think they did.

Sorry, they gave me 60 (6mg)injectables /month at one time a long time ago. Good Luck

I4B

ariel wrote on Apr 24^th, 2012 at 2:41am:

Imitrex4Breakfast wrote on Apr 6^th, 2012 at 4:52pm:


Sorry to get back to this, but did they provide the warning not to combine the use of Kudzu Root and any of the triptans? When I first joined the board, cluster sufferers were experimenting with Kudzu Root. But the thinking at the time was not to combine it with use of any triptans, because you may run the risk of serotonin syndrome. Not sure what further work in the area indicates, but as both you and Ariel appear to be using sumatriptan, thought I ought to mention it.

Hi Ariel,

have you read Batch's thread 123 days and still counting? That is something to think about before surgery, if you have not read and tried it already. I've seen others mentioning it as well, but I'm not sure if you have tried it.

I read the long list of things you have tried in the past. I did not see two other things there as well, and do correct me, if I've mistaken: energy drinks and water treatment. Once you're off your current meds, do think about energy drinks, water treatment and Batch's advices before you try that surgery. I bet all of them will cost you a lot less than that consult alone.

Naturally, we're all different, and I'm so sorry that your ch is a persistent one. I do hope that you will find something that will truly help you reach PF time as soon as possible.

PF days,
Sanna

hello, thank you for your reply. I am going to continue with it in the hope it will work. In the meantime, I have a scheduled spg block for may 24th. The surgeon in NYC has said he isn't too sure if it will help, since it seems to be more effective for people whose pain is mostly around the eye and above, but he won't do anything more invasive unless I try that first. He did say that it may help if my head pain part is a trigger point. I'm going to be in an OR and under anesthesia when it is done. Basically the same thing they said in Ohio. The Dr in Ohio seemed more optimistic, though. I'm going to do it because he is giving me a big break on the fee & because I am desperate. Plus it is temporary, so no harm really done I suppose if it doesn't work (except the chance of waking up with a severe HA). If it does work, they can do something more permanent. If it does'nt, then I think I will look into the other route if I can find someone to take care of my son for the weekend. I do agree that the imitrex may be causing rebounds. Its a tough situation to be in when you just don't have many options. I have found that the generic is working, it just takes 15 or 20 minutes. I have been trying to stick it out with just half the shot, but jeesh its so hard not to take more after 10 minutes, because I worry that it won't work after 10, then I will have another 20 mins to endure. The only good thing I really can say is my pain has gone down from a 10 with each attack to about a 7. A few days ago, out of desperation, I started taking OTC zyrtec, a once daily antihistamine. Only because I read smth about histamine somewhere & I figured it can't hurt. I don't know if that has anything to do with it or if the high dose of prednisone is helping with the intensity. Its most likely the prednisone, I would guess. But I can't be 100% sure unless I stop the zyrtec, and I'm a little scared to do that just yet. I'm sure all of you will understand that. I will soon, just not yet.

ariel wrote on May 1^st, 2012 at 6:31am:

I don't understand anything you've posted.

         Potter

Quote:


No, they did not mention this at all and they know I use BOTH Imitrex (at times) and DHE (almost daily). I also believe that Serotonin Syndrome is real, but harder to get for some people than others (depending on body chemistry and other factors) simply because I've used 10 Imitrex injections per a day before and the meds only helped (except for my raising my BP).
Thanks for this info though and I WILL definately ask them about this.

I4B