Posted 4/13/2009 10:12 AM (GMT -7)
Hi again Amanda,
I can very much sympathize concerning the reaction to that cocktail. I don't want to scare you (I know, great way to start a sentence...) but the first time that I went in for a bodine infusion I was utterly miserable--I was sedated from the benedryl and some of the other meds plus I kept having to get up and use the bathroom because of either the IV fluids or to dry heave from the DHE or voltaren. The typical protocol calls for 3 days of infusion--I don't remember how or if they're spaced out. After number 1 I initially refused to do it again.
But let me qualify that account. First, around that time I was feeling extremely nauseous nearly all of the time and I felt worse during the treatment. But, of course it's natural that I would feel somewhat worse--they do give you an antiemetic for a reason. That leads me to the second point, which is why I recommend the treatment even after my bad start. The fact is, I really didn't know what to expect, what my medication options were nor did I really know the differences between the different antiemetics and the different antinflammatory meds that they can use. Because I was so reluctant to go back I ended up getting a really good explanation of everything from my neurologist (and I've been administered all of the drugs that they use there many times now).
So here's what I think you ought to know: Because the bodine infusion center is not part of the headache center the staff there get very explicit orders that they follow. There are several 'standardized' cocktails that are frequently used and they mostly just set up the IVs. However, the headache center is very good at trying to make sure that the same nurses that work with their patients in other parts of the hospital end up fairly experiences with their treatments. In practical terms this means that, should you have any problems or requests, they'll likely be able to be helpful.
With that in mind, if you do try this treatment it's very important to review with your neurologist exactly what medications he (or she more generally) has ordered for your infusions. DHE is typically a constant (though I believe they do have other options like [possibly, it's been a long time] triptans or maybe even fioricet) but they pick from many anti-inflammatories, antiemetics and additional medications. For example, I think that the first that that I went in I had an order for IV DHE, Voltaren and Benedryl and oral Compazine for nausea. I think I was offered Phenergan later when I remained ill. However, at the physician's discretion (with your input) you can be prescribed anti-inflammatory meds from voltaren, ketorolac, toradol and other NSAIDs to steroids like dexomethasone. Benedryl is mostly use as a sedative and to counteract some of the side effects of the other meds but I think that stronger anxiolytics are available like klonapin or ativan. I think that Compazine and Reglan are the most commonly use antiemetics in the cocktail but you can also receive phenergan (which helps many people and can even relieve head pain) or zofran (which is in my opinion, and nearly factually, the most effective at combating nausea--I take it to this day and it's the go to antiemetic for chemotherapy patients...it works like magic).
The main point that I'm trying to get across is that there are many different combinations that they use in these infusions. So the most important part is talking to your doctor about what you have experiences, what you want, and most importantly what medications will be approved for use for you to potentially choose from as needed during the treatment. Make sure that you have your pick of antiemetics and discuss the choice of anti-inflammatory drugs. As for poor tolerance for DHE, I feel you there. Though it can sometimes quell a roaring migraine attack it always takes a hard toll on my body, leaving me exhausted, sore and uncomfortable all over and many times quite nauseous. Even the nasal spray can do a number on me and I have no trouble handling high doses of ketamine. But you should know that JHC puts a lot of stock in DHE as a treatment option. I didn't favorable respond to it in bodine infusion, in at-home administration and in my many hospitalizations yet they still wanted me to give it another shot in my third planned hospitalization this last summer. This isn't because they're thick or that they don't listen--DHE is just one of the most widely effective drugs in their arsenal and they want to try it under a variety of circumstances to give it every opportunity to help you. I mention this because, when you start going to the headache center, you'll notice a fairly clear pattern in that they "stick to their guns". They handle a massive patient load which familiarizes them with the most effective techniques but also leads to the near necessity that they frequently apply their tried and true methods because they are trying to hope the most patients that they can. And they do a fine job of it, realy. Their success rate is fantastic. But, as with all things, there is always a group of outlying cases that end up responding quite differently to their treatments. Because their standard ladder of treatments is so successful they justifiably use it to treat even these patients because it's proven to be the best hope over time. But there will always be atypical patients.
So you'll likely find that Jefferson will want to start your treatment in a fairly standardized way and they'll probably want to retry some treatments that you may have tried with other doctors, attempting to stick to their proven methods. So, this is a long winded way to say that they'll probably want you to try DHE even if it has not helped you in the past. This does NOT mean that they won't take your input into consideration. But they want to help you so they'll want to try doing things the way they've fared well with. So this might mean a tough day or two of bodine infusions (or it might help, you've got to remain open to that possibility) but if it doesn't help then they'll cross it off their "checklist" and try one of the many many many other good treatments that they have available. Even though every doctor there is different in their way of interacting with patients none of them will intentionally leave you out of the loop. But it's important that you're proactive about staying in it so that you do have control of the situations that you'll end up in--even if that simply means having an extra medication available at your request during bodine infusions.
Finally, regarding my own case...I'll keep this short. I have had New Daily Persistent Headache that exhibits classical migraine symptoms during particularly strong attacks. This means that I have severe head pain every minute of every day for the last six years and three months now (give or take a day). Like many patients with NDPH my headaches are refractory and, personally, no treatment, drug or otherwise, has significantly reduced my pain level, let alone give me some pain-free time. The lowest my pain goes is about an eight or an eight and one half out of ten and it frequently reaches ten. I hesitate to discuss this in much depth in this thread because I don't want you to think negatively of Jefferson. For years I've received compassionate care and I know that my doctors have done everything in their power to help me (my neurologist has pushed hard for permission to try nearly untested experimental treatments) and I can even see how upset they are that they haven't been able to do more to help. But they have indeed helped. Even though I was told a year or two ago that I had exhausted all of the treatment options available, they've continued to try just as hard to make things the best that they can be. If not for the finely tuned daily medication regime that I'm on as well as my rescue meds and the inpatient experimental treatment that I received this summer I would be totally disabled. Now, as it is, I am about to start receiving social security disability and I haven't been able to work in more than three years but things could be so much worse. At times in the past I wouldn't leave my apartment for weeks or more and I'd only spend a few hours a day out of bed. I lost nearly all ties with my friends. But now, I get out of the apartment several times a week, see my friends regularly and have a normal sleep routine. And while my pain level is very high, with JHC's help, I've learned to be able to live my life despite the disability. I'm still very limited but without the help I've received I doubt very much whether I'd be alive right now.
I do know of others who suffer similarly but that's only because our cases are so extreme that we're easy to find. Generally speaking, of the many people that I've kept in touch with that go to JHC or similar centers, the overwhelming majority fare extremely well. So, despite my difficulties, and maybe even because of them, I recommend JHC to you because they've helped so very many people and because of how much they've been able to help even me.
Blargh, I need to relearn how to write concisely. But I hope this helps. My thoughts are with you.
DX: NDPH, Recovered CRPS
RX: Lamictal, Methylphenidate, Clonazepam, Wellbutrin XL, Namenda, Oxycontin, Oxycodone, Magnesium sup.
PRN: Ketamine nasal spray, Celebrex, Migranal, Haloperidol, Zyprexa, Lodine, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Toradol, Reglan, Ambien CR, Provigil, and all triptans