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brayse3
New Member


Date Joined Nov 2007
Total Posts : 10
   Posted 11/13/2007 9:04 AM (GMT -6)   
Hi! I am looking for information on treatment for Chronic Daily Migraine. I have done inpatient treatment at Jefferson H C twice without any luck. I am skeptical of trying the nerve stimulator, however that has been considered the next step.I currently am on mexcilitine 1000mg,abilify 15mg,labetalol 200mg, clonodine0.1 3x daily, klonopin4x daily, neurotin 300mg 2x daily, migranal, halodol,toradol, halodol injection, melatonin, petadolex, magnesium, riboflavin, procardia, nardil, thorazine, and etodolac. I really need a way to try to simplify this mess and still function without the dibilating pain. Someone had sugested there is a ketamine infusion if anyone has info on this I would greatly appreciate the input.
 
 
                All my thanx,
                   Brayse3 

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 11/13/2007 11:45 AM (GMT -6)   
Hi brayse,

Welcome to Healing Well. Good grief, are all these drugs prescribed to you for daily migraines????? Are you being treated for other conditions as well??? I am reluctant to make any suggestions here because of the amount of meds you are taking at the moment without any further explanation for why you are taking them!!

There are things I could suggest but I feel I need a clearer picture of any other conditions you suffer from, because of possible contra-indications!

take care

Ann
Co-Moderator of the Migraine/Headache Forum


brayse3
New Member


Date Joined Nov 2007
Total Posts : 10
   Posted 11/13/2007 1:20 PM (GMT -6)   
Thank you so much for your concern. I do have a couple of minor other issues(HBP,RLS, and pineal cyst) but my treatment is focused on the migraine. I see a psychiatrist and psychologist to help me manage the chronic pain they work in conjunction w/my neuro at Jefferson H C. I just wonder if maybe i am putting to much faith into one treatment and not investigating enough to maybe seek alternatives. I really feel as though I have come incredibly close to my breaking point. Not real sure how much more I can take,the meds totally control me, and leave me w/very little left for life or living productively.
 
 
 
                           Thanx and best wishes,
                                           Brayse3
 
 
 
                 Tina


brayse3
New Member


Date Joined Nov 2007
Total Posts : 10
   Posted 11/13/2007 1:44 PM (GMT -6)   
Hello again!! Just wondering,in your opinion is this really alot of meds to be on????
 I really have nothing to compare it to and this is really the first time i've reached out to any other migrane sufferers. I truely appreciate any guidance and input i can get from people more experienced than I.Could they have me on this many meds because they can not seem to get any sort of control on the situation and do not want to express that to me. That could be quite alarming! Could that be why a ketamine infusion treatment was suggested?
 
 
 
 
                Thanx for yor time & concern
                            Brayse3
 
 
 
                 Tina


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 11/13/2007 6:01 PM (GMT -6)   
Hey Brayse,

Yes, you are on a lot of meds. But compared to the average CDH sufferer who's trying to find the right meds to help out, it's not excessively long.

Now, you mentioned that you've had two inpatient hospitalizations at Jefferson. What medications did they give you while you were there, how long were you there and how successful was the stay? Sometimes they'll do lidocaine infusions during an inpatient hospitalization over the course of a week or two. It's a strong anesthetic, like ketamine in some ways. They've generally had pretty good success doing that.

As for nerve stimulators: I've done two trials in two different locations myself. The whole idea is that the nerve stimulator is supposed to combat pain caused by exterior-to-the-brain nerves such as the occipital nerve or the superorbital nerve. This cause of pain is known as neuralgia. A good way to find out if your headaches might be being caused by neuralgia is to have the nerves in the area where you experience head pain blocked by injection. If you haven't tried that you probably ought to.

How long have you been seeing the JHC for treatment? It can take a long time to find the correct medications or treatments to help your head. Unless you've just started out with treatment in the last several months, it IS a good idea to branch out and try new treatments, but not probably not a good idea to abandon the ones you're trying now. Ask your headache specialist what things you can try outside of the office. I've found that neurologists are very receptive to having their patients try alternative treatmetns so long as they don't go against what they're trying to do for you now. Some such things might include experimental drugs, natural supplements, various home remedies, biofeedback, physical therapy, massage, chiropractics, yoga, acupuncture and more.Be sure to consult your JHC doctor first though...they have a lot of experience dealing with migraines.

Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Ambien CR, Rozerem, Emsam, Namenda
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Oxycodone


brayse3
New Member


Date Joined Nov 2007
Total Posts : 10
   Posted 11/13/2007 6:29 PM (GMT -6)   
 
Hi, I've been treated at JHC for 2 years now, and both of my inpatient stays unfortunately were not very helpful. I went in at a 10 both times and left at about a 7-8, not bad but not great either. My baseline is about a 4-5 so it's not a huge improvement under the circumstances. I did the lidocaine infusion both times really not effective.DHE, droperidol, magnesium,toradol and a bunch of other meds( having trouble remembering,was inpatient 1 year ago). I do alot of mindful meditation, as told by Dr. Kaiser. When you practice it enough it really begins to help w/ the pain management. I've had nerve blocks done,they did not help at all. I think they are pretty reluctant to get over aggresive because I do have HBP,that thus far has not been controlled properly. Are you aware of the ketamine infusions,I've heard they have been used at Drexel for RSD patients,but is this something new for migraine suffers at JHC?
 
 
 
                                 Thanx and best of wishes
                                       brayse3
 
 
 
                 Tina


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 11/13/2007 7:37 PM (GMT -6)   
While RDS is also a chronic pain syndrome (I had it), it's much different than migraines. I haven't seen any research about ketamine infusions for migraines. Ketamine is an extremely potent drug.
DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Ambien CR, Rozerem, Emsam, Namenda
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Oxycodone


brayse3
New Member


Date Joined Nov 2007
Total Posts : 10
   Posted 11/13/2007 8:07 PM (GMT -6)   
In your opinion do you think I have a greater chance of finding relief w/a stimulator or a investigational trial of the ketamine. I have to go to  a cardiologist to get my heart and things checked before i can even entertain the thought of undergoing this. They used  to do similar procedures in Germany were the patient was put into a coma for 5 days and when they awoke they were pain free!! Of course the US does not allow that type of investigational medicine.However,they do allow low-dose ketamine infusion and have been quite successful from what i have heard. Patients do however have to remain in ICU the entire time they are in the hospital.I don't know if the risks out weight the benefits at this point I am pretty much at the end of the rope!
 
 
                                       Thanx 4 caring,
                                          Brayse3
 
 
 
                 Tina


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 11/13/2007 11:20 PM (GMT -6)   
From what I've been told of nerve stimulators, and from my own experiences with them, it's unlikely (though possible) that they'll help if nerve blocks do not help or you doctor does not believe that you are experiencing neuralgia. However, as in my case, when there's nothing else to try, it's sometimes worth a shot.

Speaking of doctors, since you said that you go to JHC, do you mind telling me which neurologist that you see. You might have read in an older thread on here that I see Dr. Nahas primarily.

As I said, I don't know very much about ketamine other than in regard to it's use with RDS/CRPS. I've seen a little research that suggest that it may be able to halt aura symptoms, but I really don't know if it truly transfers over to head pain.

Actually I just did a bit more reading and apparently it is sometimes used in the treatment of migraine, hmm. Okay, the name of the article that I stumbled upon is called "AGGRESSIVE INTERVENTIONAL TREATMENT OF INTRACTABLE HEADACHES IN THE CLINIC SETTING". I don't want to post a private domain journal article online, but if you'd like I'd be happy to email you a copy. It describes the mechanism of IV ketamine treatment as well as many other strong IV drug treatments (about half of which I've been treated with). For the rest of you and for now, here are a pertinent section:

"Ketamine is an agent that is active against NMDA-type glutamate
receptors that has been shown to decrease migraine attacks when given
subcutaneously. This anesthetic agent has been studied little thus far but
may have theoretic implications for preventing chronic migraines [74–76].
One recent study administered ketamine intranasally to patients who had
migraine with pronounced and disabling aura. Less than 50% had
successful resolution with ketamine [76]. The dose of ketamine was low
in both sets of studies; however, more work needs to be done with this
specific blocker of glutamate receptor subtypes."

Krusz JC - Clin Fam Pract - 2005 Sep; 7(3); 558
DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Ambien CR, Rozerem, Emsam, Namenda
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Oxycodone

Post Edited (korbnep) : 11/13/2007 10:26:42 PM (GMT-7)


brayse3
New Member


Date Joined Nov 2007
Total Posts : 10
   Posted 11/14/2007 12:19 AM (GMT -6)   

Hello again, I also see Dr.Nahas as JHC she is truley a wonderful person dedicated to her craft. I have also been on many more meds than I listed earlier, those are just the ones I am currently taking. Which by the way are getting on my nerves. I was wondering exactly how long have you had your headache and at what point did they turn you over to narcotics, that is the the big no-no at the center.I was also wondering if you had trouble with sleep, i took 21mg of melatonin and 2 rozaren 200mg of neurontin 15 mg of abilify and I am still awake! Do you think I might bring that to Dr Nahas' attention or do you think it's just the way things are with headaches?

 

                                 Thanx for your patience

                                            Brayse3   

P.S. Please E-mail me the site you found the info on ketamine on. That would be greatly appreciated. 


 
 
 
                 Tina


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 11/14/2007 1:19 AM (GMT -6)   
Yes, I agree that Dr. Nahas is a very compassionate doctor.

I know that narcotics are indeed a big no-no there. Silberstien has written a lot in medical journals against the use of them. I've had my headaches for about 5 years now, every day, all the time, since January 2003. I've been seeing Dr. Nahas for a little less time than you have it seems, but I've seen other neurologists before that. I took some narcotics before I started going to JHC but soon after they started treating me they asked me to stop. After more than a year of treatment without any narcotics, with no significant improvement from any of them and a baseline varying between 6 and 8, we talked about the starting opoids. Some of the reasons I was allowed were because I did much better while on narcotics in the past then I was doing then, the recent failure of two nerve stimulator trials essentially trying every drug that they prescribe (and no explanation for the migraines or the resistance to treatment), and the fact that I had been out of school and work since I had stopped taking narcotics and a while before as well (when I was on the drugs, I nearly earned a dual degree in two years of college, but no progress since then). The new drugs that we've been trying are far-reach opportunities like verapamil, emsam and namenda. If there was really anything left to try I wouldn't even want to be on these narcotics, despite the constant, horrible pain. So far I've been on the oxycodone for...umm somewhere between one and two months and it's been going back and forth between working and not. So I've been pretty worried :-\ Basically, I guess my feelings on the subject in general are that, if a person has more or less exhausted his or her treatment options with an experienced headache center and other doctors (sleep specialists, psychiatrists, social workers, psychologists, massage therapists, dentists, etc.) and is unable to maintain any real quality of life due to constant, high pain levels, then he or she should be allowed to try narcotic drugs under well controlled circumstances (I had to see Dr. Nahas every week for the first month that I was taking the oxycodone).

Sleep. Yes, I've had a ton of trouble with sleep. I tend to cycle between barely being able to sleep at all and not being able to sleep for less than 12-15 hours a night (despite very poor sleep quality). At the times when I've been unable to sleep, I was taking 15-20 mg of melatonin, rozerem, 1-2 ambien CR, 3-4 mg clonazepam (anti-anxiety), sometimes 25-50 mg of phenergan or 25-50 mg of thorazine. So, yes, I've been through that too and in a sense I think it's necessarily tied to chronic headaches. However, that doesn't mean that you shouldn't try to solve the problem or at least make it somewhat better. DEFINITELY talk to Dr. Nahas about it because she can help and the sleep problems might be making your headaches worse. She might recommend seeing a sleep specialist and possibly having a sleep study (I'll be having my third done soon). As with all headache related problems, try everything you can and talk to Dr. Nahas about anything that's on your mind.

Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Ambien CR, Rozerem, Emsam, Namenda
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Oxycodone

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