What time was your appointment? It may very well have been me, since Dr. Newman and I spent plenty of my appointment today discussing the board so it was probably fresh in his head.

He is an absolute lifesaver. Every appointment you have with him will make you feel better, if not always physically, then emotionally. I did the Indocin test too and it was not that effective for me, but your description of your pain is slightly different from what I experience.

Dr. Newman is a fantastic guy, both personally and professionally. He will get you feeling better if it's the last thing he does. I'm glad for your sake you found him!

I believe I did see you, perhaps filling out the whole first appointment information? I was wearing a striped sweater and was with both of my parents since it was an extremely important appointment and desperately trying to schedule my next one... I'm in a really rough high cycle again.

Yes, he will always make you laugh, no matter how bad you may be feeling. Once again, I'm glad you found him and hope you find some success with the Indocin. Even though I said the Indocin was not that effective for me (and it wasn't), I did find SOME relief... so maybe it will be magic for you, or at the very least help a bit.

I'm always available via PM if I can help in some way. Best of luck! You are in very, very good hands.

Yes! And you and your mom were overhead discussing people coming into town and where you should have your follow up appt. (couldn't help it, small space)

it's a small big world we have here!

You too. I have had Cluster Headaches since I was 20... Maybe not up on all the meds and such, but can certainly empathize. Here if you need me!

Tate

Thank you.  I am in tears right now.  I need to help him. I am going to call Dr. Newman.  Has anyone tried a drug called methysigride?  I know it is no longer available in U.S., but was thinking of taking my husband to Canada and getting a script?

Bonds, I just want to add that I've been with Dr. Newman for almost a year now and he has  been the most compassionate, caring, and helpful doctor I've ever worked with. He has told me on more than one occasion that he will "get me feeling better whether I like it or not." He's great for a laugh, even when your husband is at his worst. No matter how overwhelmed I'm feeling in the face of my condition, seeing him makes everything better. I hope you're able to get an appointment soon and things look a little brighter for your husband. Dr. Newman is, without a shadow of a doubt, the way to go. He'll get your hubby feeling well.

Is there a specific reason you mentioned methysigride? By that I mean, has your husband used it before or is it just something you've read about? There's no harm in discussing it with Dr. Newman when you go in; if he feels like it's a worthwhile treatment to pursue I'm sure he can find something similar to put your husband on that's still available in the US.

After scheduling my next appointment yesterday (which Tate overheard  ), it seems like Dr. Newman is pretty busy the next little while. You may very well be able to get a pretty quick appointment in anyway, but if you can't I really don't think you can go wrong with any of the four doctors there at the headache institute. They all have excellent qualifications and I'm of the mindset that if they work with Newman, they must be good. By all means, shoot for that appointment with Dr. Newman, but don't rule out the others.

Best of luck

Hey ALL
I too see Dr Newman!! He is an amazing doctor for sure! I have complicated head stuff cluster/hc mix . I went the indo route and it worked for awhile but stopped i also had a cluster cycle that "endedish" back in may2010 but was left with constant shadows evr since (i was living in florida then) and was diagnosedby a great doc there( dr steven wheeler) who diagnosed me with hc. I was put on indo then and helped some. When i moved back to ny i met with dr Newman and he respected Dr wheeler's diagnosis and i stayed on indo and it stoped working, and working with Newman to figure out the best line of defense has been challenging since i am a complicated case but I have ALL the faith in the world in Dr Newman and feel blessed to live in Nyc and have him here.
So any of u guy's live in nyc?
Anthony

Tate, do you mind if I ask what dose you're on now? To the best of my knowledge, it will take the indocin a bit to build up in your system so don't write it off yet! As I mentioned, I found at least some relief from it when I was on it even though I definitely have clusters. "Some relief" isn't enough for it to be sustainable, but there's a chance it'll make some sort of difference. Of course, there's also a chance it won't.

Also, there is no reason I can think of that the indocin should have caused you to be woozy on your walk. It's way more likely verap would do that! There's certainly a possibility it's just the way you're reacting, but I don't know why that would be...

Tate,

I started with 3x 25mg too and eventually went up to 3x 50mg. May I recommend you ask Dr. Newman about taking Protonix? I was supposed to be taking it with the Indocin to help protect my stomach and I was not nearly as judicious about it as I should have been. Towards the end of my Indocin run I found blood in my stool and had to stop the Indocin IMMEDIATELY following. Fortunately, my insides were ok but that was a scary few days waiting for scans and going to get a colonoscopy to make sure I didn't have an internal bleed. Between you having a hard time with the prednisone, the new liquid calcium that you say isn't so easy on the gut and the fact you're on the Indocin now I would call the office ASAP to ask about Protonix or something similar. Just a suggestion, though. (Also, forgive me if you've already discussed this with him yourself... just sounds like your stomach is handling a lot right now!)

Does Dr. Newman know you're on Batch's regimen, too? If not, make sure you tell him. My last appointment he specifically told me not to add it because I'm changing preventatives and he said it would be too difficult for him to know what's doing what. He obviously has no problem with it in principle, but I can imagine it can get confusing.

As for me, I'm complicated. I have found very few things that do much good. I had some success with verap over the summer but starting about 4 weeks ago now I went into a wicked high cycle (I'm chronic) despite still being on 720mg. I can't go any higher on that because my BP is getting wonky and I get ED from the extra high dose so I'm trying to cut down on the verap or cut it out entirely anyway... especially since it's not helping anymore. He put me on 3x 300mg Neurontin about three weeks ago (and kept the verap the same), but there's been no change. Tuesday he upped it to 3x 600mg and I'm waiting to see if it makes any difference. If not, I believe he said I can go up to 3600mg/day. (I'm not sure if that's 3x 1200 or something different.) If the Neurontin helps, he's going to start getting me off the verap. I'm not sure if his plan is to just lower the dose take me off entirely, though I do need to be on a BP medication one way or another because mine's on the high side. Up until now, O2 has done no good for me despite following all the tips on here. I'm hoping if I get on a better preventative it will be more effective? I'm not even sure if that's a thing, just grasping at straws....

Does immitrex work for you? Or other triptans?

Zac,

Oh, yes, imitrex does work in the injectible form, but I have as many as 8 headaches a day and just can't take that many shots... And then if I don't take the meds my headaches usually last around 3 hours... And then the imitrex ends up giving me wicked rebound headaches that I can't even describe... So, I end up being in constant pain. It becomes a situation where I cannot function at all, cannot leave my bedroom. I just pace around from icing myself to the hot shower to thinking I'm going to die or jump out the window. Depression sets in...sucks. Hoping the oxygen works!

jwdbonds wrote on Nov 30^th, 2011 at 1:26am:

I tried methysigride many years ago. Somewhere around 1985. Didn't do anything but make my wife nervous. It is a form, very weak form, of LSD. AKA Sansert.
Please read the 'oxygen info' on the left side of your screen.