IV Lidocaine? and the Jefferson Headache Center

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LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 11/10/2008 5:21 PM (GMT -6)   
Hey everyone,
 
I have a question about IV Lidocaine.  Has anyone been through it and if so, was it sucessful?  Next week, I am going into the hospital through the Jefferson Headache Center in Philly and I wanted to know if someone has been through the program what they're experiences were like? 
 
I did find an article on IV Lidocaine that says some good things about it.  If interested, here is the link: http://www.healthcentral.com/migraine/news-44997-5.html
 
I hope everyone is feeling better today.
 
Peace.
Michelle 

givenup
Regular Member


Date Joined Aug 2007
Total Posts : 94
   Posted 11/11/2008 11:49 AM (GMT -6)   
hi michelle. i have had the iv lidocaine infusion twice. was in thomas jefferson for 2 weeks twice. i got down to a pain level of 3 during the last 3 or 4 days of the stay. when i got home the headaches came back within a few days. i have new daily persistent headaches. 24 hours a day 7 days a week. i am now headed to the michigan head and neurological institute. everyone is different, depending on what type of headache you have. maybe it will work for you. i was with thomas jeff for about 9 months, then went to new york. no luck. i live in new jersey. where do you live . i am 23 yrs old. how old are you

talk to you soon
ashley

LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 11/11/2008 12:20 PM (GMT -6)   
Hey Ashley,
 
I'm 25 now, but when I came down with this headache I was 23.  I haven't had a pain free day in over two years.  Some days I feel great and other days I can barely move~ mostly it depends on the drugs that I am on.  This is my second headache clinic.  I have been to Diamond Headache Center in Chicago and like you the pain comes back.  However, it has worked for a lot of people.  If this doesn't work, I am going to hit Mayo up next. I live in the DC area, so Philly is really easy for me to get too.  I have a great doctor in DC, but I'm beyond what he can do for me.  How long have you had the headache? Has anything really "worked" for you?  I have the problem that if a drug works, it only works for a limited time.  Sigh....  I hope you are feeling better today.
 
Peace.
Michelle

givenup
Regular Member


Date Joined Aug 2007
Total Posts : 94
   Posted 11/11/2008 2:43 PM (GMT -6)   

hi michelle. i have had these headaches for 3 years now.you name it, i was on it. nothing has helped at all. i do not have migraines. they are called new daily persistent headaches.they do not respond to any type of medication. i live on oxycontin.percocet and xanax. not good. that doesnt even help most of the tome. i dont leave the house. go to this site. mdjunction.com. you would be suprised how many people have these type of headaches. i am going to michigan because dr rozen seems to be the only one doing research right now and has helped some people. then on the same site type in nerve decompression surgery. i feel like i have a vice grip around my whole entire head and somone is twisting tighter and tighter. my neck hurts so bad. all the nerve endings are over sensitized. i just want to give up. my dad just died in april . its just me and my mom. i miss him so so much

                                                    talk to you later

                                                     ashley


LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 11/11/2008 6:58 PM (GMT -6)   
Hey Ashley,

I just want to give you a hug. I am really sorry that all of this has been happening to you. While, I can't understand your personal loses, I do understand (somewhat) the physical ones. The doctors say that I have a status or chronic headache with migraine. I had to quit my full time job and for about a year, I barely left my apartment. Also, I live on Dilludid and end up going to the ER about once a month (some months/weeks it's more). I have been hospitalized 3 times for pain and I've been through 5 DHE treatments. I've had trigger point injections done several times, including deep tissue ones. I see so many doctors that my head spins. I certianly understand the frustration, fear, tiredness, anger, and especially the loss of hope. My mom is always saying that if I don't believe it is goingto work, then it isn't. I disagree with that, because I rather think that something is not going to work than get "my hopes up" just to fall back down again. Being a realist is one way to get through this. I'm glad you found a place that is doing research, and I certianly "hope" that it will work out. If not, there is this experimental treatment going on where they put you in a coma for three days to try to reset your body. I think what gets me through this is that there is always something else to try. Sure, it gets tiring after awhile, but what do you have to lose?

I do have a couple questions for you. What is the IV lidocaine suppose to do? Is it a constant thing? Am I going to be out of it? I am usually overwhelmed when I see my doctor that I forgot to ask these questions. All I remember was tell my doctor that I need a pic line, since all my veins are scarred.

I don't know if there is away for me to contact you privately, but I would be more than happy to give you my e-mail address, facebook page, etc and you could contact me whenever and for whatever. I have found that without the support of my friends, family and boards like this that I would have given up a long time ago. I know how hard it is to talk to people who just don't understand, so please feel free to contact me.

I really wish you the best of luck. More hugs.
Peace.
Michelle

givenup
Regular Member


Date Joined Aug 2007
Total Posts : 94
   Posted 11/11/2008 8:37 PM (GMT -6)   

hi michelle, you wont be out of it at all. the lidocaine is usually mixed with depacon and benedryl. it is not a constant drip. i think it was every 4 or 6 hrs.it is supposed to try to break the cycleof the headache. then they send you home with mexiltine and lyrica. the mexilitine is what is supposed to take the place of the lidocaine. they will increase the lidocaine dodage as the days go on. sometimes you can hallucinate on it. i did once, so they then lowered the dosage. dont be scared. it was not bad at all.yes give me your e mail. do you know of anyone who was put into a comma for headaches? i had everything you mention. trigger point facet injections, botox twice ,couldnt tolerate the dhe. had keppra infusions in n,y. in michigan he does droperidol infusion i hear. down in michigan they keep trying a combo of meds. i am not looking forward to being detoxed. and they are making me sign a contract that when i leave there i will not take anymore pain meds or that will be the end of me. thomas jefferson did that to me the last time, so i couldnt go back there. dr rozen from michigan keeps in contact with who ever your neurologist is where you live. if something isnt working, you call rozen and he calls your dr and you go to your doctor and the meds are changed then. you might have to fly to michigan three months after you are released. then maybe once every 6-8 months. we shall see.

                                                     will talk to you later

                                                        hugs to you too

 dont forget to ckeck out mdjunction.com about headaches and the nerve de compression surgery. only two places do it. in washington d.d. and houston. you can read about on that site. a 16 year old girl had it and she is headache free

                                                               

 

 


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 11/12/2008 8:17 PM (GMT -6)   
Hi Michelle (and Ashley),

Not that there's any problem with you making your own thread for this Michelle, but if you'd like to see some more information you ought to search the forum for "Jefferson" or "Lidocaine"--Ashley and I have discussed both many times in the past.

Much like Ashley (actually, very much like Ashley...we should talk more sometime!), I have ("new") daily persistent headache. They began very suddenly, on January 12th of 2003 I think, and haven't stopped for a second since. In those nearly six years I've had baseline pain levels between 6 out of 10 and 10 out of 10 at different periods (currently it's as low as 7.5).

I always feel very self conscious when I talk about the issues the headache has caused (I don't want to seem as if I'm seeking pity--though I admit that I sometimes selfishly want it). In short though, I haven't been able to work in over 4 years, I had to drop out of college, and lose a full scholarship, at the beginning of my junior year (about 3 years ago), I've gone weeks without leaving my apartment, and (mostly just in this sixth year) have often felt dangerously compelled toward suicide....

That's the short of it, that I share knowing that so many here can relate.

BUT, onto your question! (sorry!) Jefferson is the second headache treatment center that I've spent a significant period of time with (3.5 years now, I think). I've seen Dr. Stephanie Nahas the entire time and there isn't enough space on this web server to express how well she's treated me (even though we've never been able to find a treatment that's been able to reduce my pain (though something recently helped me with living my life). I've very likely seen or interacted with just about every person that works in the center and I'd be happy to share some of my experiences if you'd like. There's a lot to say about Jefferson but, overall, I recommend it (one note on that: some people that I've spoken to have been very displeased with Jeff for various reasons; however, I truly think that, if you know who and what to ask for and who and what to avoid, I can almost guarantee that you'll be happy there).

I received the Lidocaine treatment last summer, over the course of 11 or 12 days. I apologize if I'm wrong in saying this, but I THINK that Ashley was given the Lidocaine during a more general hospitalization, in which the lidocaine was one of many drugs that were tried (is this right Ashley?). I had the "drug marathon" hospitalization a year prior to the Lidocaine one however. I mention this because, in my case and from what I've been told of others, Lidocaine specific hospitalizations are set up to use a program of continuous Lidocaine infusion (24/7) for about 8-10 days. In fact, they're very strict in that they would only allow me to shower every third day and limited the total disconnected time to less than 15 minutes.

You may indeed experience visual hallucinations. Ashley is right in saying that they are rarely bad. However, they are indeed quite common. In fact, the medical staff asks whether you've experienced any hallucinations quite regularly because they use it as an indication of whether the Lidocaine has reached theraputic levels and started to kick in. Personally, I did not experience any hallucinations, but this is what I've been told. I wasn't affected by the Lidocaine at all, unfortunately. I felt absolutely no difference at any point in the administration. I don't want you tot think that it's not a strong drug however. It very much is. While Lidocaine is sued for many applications, it is classified as a strong anesthetic. Essentially this means that the drug is meant to relieve the sensation of pain (as opposed to medications like Topamax or Imitrex which attempt to stop the headache very close to it's source). Because the drug acts quite indiscriminately (affecting your entire body), you'll be monitored on a Critical Care floor of the hospital so that they can keep tabs on your heart and lungs. You'll have regular ECGs and will have 5 electrode leads on your chest the entire time that you're on Lidocaine.

MORE TO COME
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 11/14/2008 12:33 AM (GMT -6)   
Hi Korbneg and Ashley,

Thank you for all of the information, both of you. I am going to go to some of the back threads and read more. Honestly, it didn't even occur to me to search, so now I am going to attempt it. :O)

Second, I shall always be an open ear to anyone, especially people in our situation. I found through my time in the group therapy session at Diamound that we are the only people who can truely understand what we are going through, and the relief of other people understanding and knowing what you are feeling is okay is worth more than gold. I remember the pure relief of my doctor at the Diamond Headache Clinic when he said that I was not crazy, unlike a therapist and a psychiatrist told me that I was. So if you ever need to vent, please seek me out. Which brings up another question, how do we share e-mail addresses via the message board?

I also see Dr. Nahas and I think she is wonderful (though I've only seen her in two regular appointments). My impression is a good one. I think I am going to go through what you did, so it is nice to know what to expect. I also asked for a pic line, since by now all my veins are scared and just blow if you touch it wrong. Anyway, thank you very much for the information. It is extremely helpful.

I hope everyone is feeling better. Time for bed.
Peace.
Michelle

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 11/16/2008 11:34 PM (GMT -6)   
I had a pic during my most recent hospitalization (for ketamine). If you've never had one, it's painless and it certainly DOES make things easier on the poor veins in my arms too...

I'm glad you're with Dr. Nahas. You should mention that you've spoken with me (Ben), especially since I've told her about this discussion board a few times. Plus I'm sure she'd be willing to go into more detail about the way she's treated me if you say that you know me. Either way, best of luck of course.

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


jewels3081
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/10/2009 11:39 PM (GMT -6)   
I am planning to go in-patient at Jefferson in August. During my initial appt with my docs, my head was swimming after all the questions and information given, and I forgot to ask a few questions. So for those of you who have been in-patient with Jefferson, can you tell me a little about the hospital? Were you sedated while you were there at all or were you completely awake/aware the whole time? Were you allowed to eat in the cafeteria with family or can you leave your hospital floor? Did you wear street clothes or a hospital gown during the daytime? Is it a standard hospital stay--or more like a migraine management program? I ask this because I was a patient at MHNI in Michigan as well, and there program is a migraine management program, involving therapy sessions, classes, alternative therapies, etc. I too will be given IV Lidocaine, and I am desperately hoping it works. I just wondered about your actual experience with staying at the hospital.

Thanks for any information you can provide. Reading through some of the posts has already been very helpful!

Julie

LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 7/11/2009 7:45 AM (GMT -6)   

Hey Julie,

 

The two times I've been an inpatient at Jefferson (in two different hospitals) I was able to wear my street clothes.  If you are doing the IV lidoicaine, I bet you are going to be in Methodist.  They have only a little wing for the headache patients, so it is not going to be the same experience you had a Michigan or if you went to Diamond.  You are able to walk around if you want.  I didn't much.  And I wasn't heavily sedated either (but it takes large amounts of med's to knock me out anymore).  I don't think there will be a problem with you eating at the cafeteria, but I don't know for sure.  I was by myself while I was there, so I ended up ordering food most of the time.  The nurses are uber nice, which helps a lot.  Oh, they didn't have a good internet connection.  I was barely able to get on and most of the people on the floor couldn't using the internet there.  If you can afford it, I would recommend getting one of those internet cards through verizon or sprint to cut the boredom out.  But then again, I'm currently addicted to hulu. :O)

 

How long have you had these headaches?  Where have you been?  What have you tried?  Recently, I’ve read this book called “All in my head” by Paula Kamen, which has helped me a lot deal with these headaches. 

 

Let me know if you have any other questions.  I’m actually going to be visiting another patient of the JHC while he is in the hospital next week.  He has been a patient there for much longer there than I have been and I’ll be glad to pass along any questions to him.  (I go back and forth between Diamond and Jefferson).  I hope you are having a good day.

 

Peace.

Michelle


jewels3081
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/11/2009 12:55 PM (GMT -6)   
Michelle,
Thanks so much for the information. I will be in Methodist Hospital. I have had headaches all my life, but chronic migraine with daily headache for about 10 years. I live in Arkansas, and have seen many docs here for them, plus I have traveled to Michigan, Texas, and now Philadelphia for docs as well. They have completely robbed me of my life! I had just graduated college when they worsened from monthly migraine to daily, and have had periods of time where I have been mostly bedridden. It's insane. Luckily I have a very supportive family and husband who help me defray some of the costs involved with traveling so far. If a doc can help me have my life back, then I don't care how far I have to travel to find him/her.

I called the hospital yesterday to ask about Internet. I can't believe they don't have Wi-Fi there or something! I am probably going to either buy a wireless card as you mentioned (good idea!) or get a new phone that I can tether to my computer before I go. I can't make it a week or longer without feeding my Internet addictions!

I am actually happy to hear that they don't do the whole program thing there. When I was at Michigan it was so redundant to me, because I have had headaches so long and I inform myself on everything I can find about them. Most days they had me so wiped out on meds I needed to be in bed, but had to be going to these migraine classes instead. It just seemed pointless to me. I am sure there are many out there who have benefited from it though or they probably wouldn't insist on doing it.

Are the rooms at Methodist private or do you have a room-mate? Could you be up and shower everyday even with the IV lidocaine, or did they want you in bed most of the time? I understand they have to monitor someone getting IV lidocaine pretty closely. Are they pretty strict about visiting hours being from noon til 8:30? That seems pretty limited to me, not letting a visitor come before noon. Around here visiting hours usually start at 7 or 8 in the morning. Anyway, thanks again for the info. Every little bit helps demystify what the experience will be like, you know?

Julie

LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 7/11/2009 8:24 PM (GMT -6)   

Hey Julie,

 

I understand completely.  When I was younger, I use to play Mortal Kombat on sega and there was a quote that started off the game that I've never forgotten.  It goes: "There is no knowledge that is not power."  I think the better armed you are the better off you will be. 

 

The thing with the IV Lidocaine is that you really cannot shower.  You aren't supposed to be unhooked for more than 15 minutes MAX, so it is kindof rough.  The rooms are private, so that is a major plus.  I didn't really feel like walking around, but I think that is just due to the general tiredness I feel with my headaches.  (They just drain all my energy away).  So, I mostly just watched DVD's on my computer.  If I remember correctly, the nurses were pretty lax about the visiting hours, but I can't say for sure.  I didn't have anyone staying up there and just helping me out.  I know at Gibbon hospital, they were really chill about the comings and goings of visitors. 

 

I understand the feeling about not wanting to attend those classes and whatnot.  I feel the same way at Diamond, because they make you do biofeed back and biofeed just doesn't work for me.  I just never been able to manage it once in over 25 tries.  But there was one thing that I did find really helpful, which was the support group that they put together.  I find it helpful to be able to share my experiences with people who understand and really know what pain is and what it means to "fake" it.  I haven't really been able to find anything like that (except for this website) and I think it really helps.  Similar to you, I grew up with headaches and started having migraines when I hit around 16.  But designer drugs and sleep where able to handle them.  Then in '06 they started to get a little worse and finally on Sept. 22, 06 I woke up with a headache that has never gone away and I experience terrible migraines that make me not able to move.  My real problem comes in is that my headaches are really resistant to treatment and drugs, plus I hyper-metabolize medicine, which gives me only a short shelve life with it.  Oy vey!  I think this is part of the reason why I have to jump from place to place, because I use up all there tricks they have within 1 year- 1 1/2 years.  Anyway, that is enough of my ranting.

 

One more thing I wanted to remind you.  I hate hospital food and the nurses have a ton of menus, so they will help you order food out.  Just ask them for the menus! :O)

 

Good luck and please feel free to ask me anymore questions.  I’ll try my best to answer any of them.  I hope you feel better.

 

Peace.

Michelle


jewels3081
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/11/2009 11:35 PM (GMT -6)   
Michelle,

All that info is SO helpful! I am so sorry your migraines are so tough. I did think the support groups helped. People just can't understand this pain until they have felt it. I try to explain it, but how do you really explain pain? Everyone feels it differently, tolerates it differently, and responds to treatments differently. I understand about the jumping between clinics too. It seems after a few years with someone, I just need a new set of eyes looking at things and a new set of ideas. I love my docs here now, and was thrilled that they were so accepting of me going to Jefferson. I need someone locally who knows me and who I can trust, but it was time for a new set of ideas. I am really hoping I respond to the IV Lidocaine. I have been very careful about how I use my abortive and pain meds because of rebound, but according to Dr. Tramuta and Dr. Young, I am probably still overusing them. That's frustrating because I need them more days than I currently take them, but then again, if it's contributing to the problem, maybe that's an easy thing to "fix" that will actually make me needs the meds less. I have learned not to get my hopes up too much about things. I don't respond well to the disappointment when I really start believing something might work and then it doesn't. I, of course, am always waiting for something to give me my life back, but I have learned to expect and be OK with small steps and every little bit of progress.

That's great to know about the food! I wondered about that. I am thankful my husband has a job that he can do from anywhere there is an Internet connection, so he will be able to work from our hotel some and be at the hospital quite a bit. Hopefully that will help with the boredom somewhat. I will probably be investing in lots of DVD's between now and then.

Yeah, 15 minutes doesn't sound like long for a shower. Especially not with as much hair as I have. It takes 15 minutes just to wash it and condition it so that I can get a comb through it all! I hate having to shower with an IV in. How many days did they do the treatment on you? How long where you in the hospital? That's the hardest part for me right now. Because we are coming from Arkansas, we can't really book round-trip travel because I have no idea how long I'll be staying there. It's so freaking expensive to book one way tickets and hotel separately. :-(

Did the treatment help you any? At least when I was at MHNI, I learned that IV Benadryl works for me. I now have it in injection form at home to try to keep me out of the ER, but sometimes it doesn't work that way and I need to go to the ER to get the IV. I thought it was good that I at least learned that there. One more tool for the toolbox, I guess. Do you know why they hospitalize some patients at Gibbon and some at Methodist? I am sorry to pepper you with so many questions. Seriously, once he told me to come back as an in-patient, all thoughts left my head except for travel and $$. But just about any price is worth it if it helps. I just want my life back! I know you feel the same way. Thank God for my understanding, supportive family.

Oh, and I am SO happy to hear the rooms are private. It just makes things so much easier and more comfortable.

Please feel free to rant to me anytime. I understand the need to vent frustrations completely.

Thanks again for all the info! You are helping me so much!
Julie

LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 7/12/2009 3:02 PM (GMT -6)   

Hey Julie,

 

The IV Lidocaine worked for about 1 1/2 months more or less.  During that time, I felt more like a human being than I have in years.  However, it started failing for me soon after that mark.  I've heard that some people have a great success with it, especially after a couple rounds of it.  My biggest fear is that like everything else I try, the second and third time it just isn't going to work.  However, that is specific for my body.  I was there for 8 or 9 days I think.  (I've been in and out of treatments so often that I'm starting to forget)!  I have also tried IV Ketamine, and that didn't really work for me.  The reason for the two hospitals is because they have there own little ward at Methodist for just IV Lidocaine and the other stuff like the IV Ketamine is done under at the other hospital.  The only main difference I've found is that you can get better take out with Gibbon being in the middle of the city! :O)

 

With regards to other treatments, I have also had 6 rounds of DHE done (some with my local doctor and some with the Diamond Headache Clinic [DHC]).  I've had trigger point injections done with my local doc and have nerve blocks done at DHC.  I have probably been on over 75 different med's by now as well.  I have done the chiropractor and some physical therapy.  I need to call the acupuncturist and start that up asap and try that route as well.  I'm not a huge believer into "alternative" medicines, being raised in a very westernized scientific family; but I am willing to give acupuncture a shot.  Plus, my insurance will pay for it.  (Go figure right)?! I've been offered Botox, but I don't know if I am willing to go do that just yet and my local doc doesn't have a good feeling for me with it(and he has been with me since the beginning).   

 

Don't worry about the questions.  Keep asking them!  That is what we are all here for! :O)  I love this website and I find it to be a great resource.  Let me know if you have any more.

 

Peace.

Michelle


jewels3081
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/12/2009 7:49 PM (GMT -6)   
I guess 6 weeks of feeling like a human being is more than I have now. 8-9 days is a while. I am a horrible hospital patient though. Unless they knock me out, I get total cabin fever. But, hopefully with traveling so far, I am going to feel like I need to get my money's worth and make sure the trip was worthwhile, and maybe convince myself not to be so stir crazy. No one likes being in hospital, but I get truly crazed about it.

I have been through tons of DHE treatments too. Do you they help you? Have you heard of Sansert? It's a old drug that isn't made anymore because it had so many side effects, but it can still be compounded at a compounding pharmacy. I was so desperate that I tried it, and it worked for me for about 10 days, then I started swelling in my hands, feet and legs. Circulation problems are one of the side effects. So, my doc tried me on a different med to try to control the side effects so that I could stay on Sansert, and I didn't swell anymore after that, but it also supressed the positive effects of Sansert, so given the potential for some pretty bad stuff to happen, my doc took me off of it. I don't know if that's something you would try or if even your doc would let you, but I was so desperate I was willing to take the risks and try anything.

In the past ten years I have done the trigger point injections, nerve blocks, PT, chiropractic, all the meds, etc. Our stories sound a lot alike! I tried acupuncture years ago, but insurance didn't cover it and after about a month, I couldn't afford it. I was in law school at the time. I eventually had to take a leave of absence from law school and haven't been able to go back. PT helps my neck and shoulders a lot, but I don't know that it truly does much for my head. When I have a bad day and lay around clutching my head for days, there's no way my neck and shoulders won't get knotted up. I am sure you go through the same stuff. I tried Botox but it didn't help. I think it made me worse, but no doc will admit that. I had a HORRIBLE six months immediately after that, was in and out of the hospital, and ended up on a morphine patch because I was close to rock bottom and had to get some relief. So you've only had the Lidocaine done once? Do you travel very far to go to Jefferson or DHC? Do you still go to Jefferson some too? I have no idea what the doc expects my treatment to be when I leave the hospital, as far as how often I'll go back or if I'll need further hospitalizations. I really should have thought to ask more questions, I just got side-tracked.

I don't know if you've ever visited the forums at Health Central, but they have a great support forum over there too. I am so glad I found you on this one, you've helped me so much! The Health Central Forums are at: http://forums.healthcentral.com/discussion/migraine/forums

Have you had success with any of the treatments that have been tried on you?

Julie

LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 7/12/2009 9:12 PM (GMT -6)   

Hey there Julie,

 

I have had some success with all the treatments; it just depends on how you measure success.  The IV Ketamine got me through a wedding that I was in a couple of days after it was done, but soon after that it was null.  By the last round of DHE, it was pretty pointless.  The best immediate result I've had was with the IV lidocaine, except for the fact that I ended up in the ER with a killer migraine the day I got released.  I think I just rebounded badly and I know that is not usual. But then again I am usually weird when it comes to side effects.  At one time I was on Cymbalta and it caused me horrible stomach pains.  I went to several doctors saying that it was the Cymbalta and no one believed me until I saw a GI specialist, because the side effect is just that rare.  Along those lines, I don't remember why I couldn't take Lyrica, but I was only on it for 3 days before having to be taken off of it.  And I have to be careful with Topamax, because I get the dopamax side effects badly if I dosed to high.  (It was the worse when I couldn't add up my uno cards to 10).  I think in the end, my body just really hates me. 

 

When I first came down with the headaches, I had a migraine that kept rebounding for two weeks and eventually put in the hospital for 5 days just to the pain under control.  During that time, I was on daluidid, morphine, valium and bunch of other stuff just to keep me sane.  Fortunately, I haven't had to be hospitalized for pain since this last Feb and it was for only 2  1/2 days.  The hardest thing for me is just trying to keep a job, even when it is just part time because I am just that unreliable or I would have to be on something to get through it, which puts everyone at risk.  I guess my major problem is that my pain level constantly varies as well, so it is hard to figure out where exactly I am going to be at any given moment.  I have come to realize that I do better in the mornings and I generally (not always) have about 45 minutes that I am pain free and it slowly builds up.  I know when the day will be bad when it starts off with pain or I wake up due to the pain.  I think I also have a fairly high threshold for pain, especially experiencing every day for almost 3 years now.  I was actually talking to some member of the Buddhist temple that I attend and they tell me that unless I tell them they never think I'm actually in pain, because I never show it.  Overall, I hate showing pain because it makes people feel uneasy and then it makes you seem like you are fishing for sympathy or even pity.  I know when I go visit my parents, I try to remain as stoic as possible because it unnerves them so much and just makes them feel all that more helpless in this terrible situation.

 

I currently live in Arlington, VA and have pretty easy access to Philly and Chicago.  I am also 26, not married and my parents are well off enough to be able to support me not having a job and have the ability to pay for private health insurance and doctor visits.  Without that, I'm afraid I would be in terrible shape.  But I know just how lucky I am.  I really do and I try not to take it for granted. 

 

Thanks for passing along that website.  I plan on checking it out.  I am also glad to run across you as well.  While both of our situation suck (to put it bluntly and mildly), it is nice to know that you are not alone.  And I do have some hope when it comes to the DHC.  Through patients at the DHC, I've heard really good things about the doctor I will be switching too in Sept. (I started off seeing another doctor in the practice).  I guess all I can do now is keep my fingers crossed. 

 

Has anything worked better for you? 

 

Take care of yourself.

Michelle

 


jewels3081
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/13/2009 10:35 PM (GMT -6)   
Michelle, I think I could have written most of what you just posted. I also had horrible stomach pains from Cymbalta. I was hospitalized 4 different times in 4 months from pain from the Cymbalta and the headaches. I lost about 30 pounds because I had almost consant diarrhea and nausea. I know, lovely to talk about, but I know exactly what you mean about the docs not wanting to believe that it's Cymbalta. Have you heard the commercials now? They warn about taking Cymbalta with certain migraine meds because of potentially life threatening interactions. I have always wondered what those interactions are and why that warning got added.

Most people tell me they don't know when I am in pain either. I try my best to hide it because like you said, it just makes people uncomfortable and feel helpless. My husband is the only person I let know most of the time just how bad it is. He's about the only person I can stand being around if it's really bad. I am 32. The migraines got so bad 10 years ago, about 4 months after I graduated college, so I didn't have enough work history to be able to keep a job when I was practically bedridden for about 6 months. It's like you said, even if there are hours in the day or days in the week I can work, how can anyone rely on me when I can't tell them what hours or days that will be? I am lucky because we have insurance through my husband's company, and my parents help us with the healthcare costs. Seriously, I feel like I could have written your post! Stuff seems to work on me for a short time also, and then it wears off so fast. I hope something they try at Jefferson will last. I had plans to set the world on fire when I was younger, and none of that has happened thus far. I have to just not let myself think about it for too long, or I can't hardly stand it.

I have told many people that without my husband and parents, I would be a 32 year old trying to scratch by on hardly any disability and treating a condition that's practically a medical mystery with Medicaid. I get depressed a lot, but I do realize that I am lucky. There are many other things that could wrong to make this bad situation even worse.

Other than Sansert, and that was only for that 10 days or so, I haven't had anything that really works. I can take Zomig a few days per week, but because of rebound headaches, I can't take it as often as I need it. IV Benadryl and compazine work for me at the ER usually, and I have injections of it that I give myself at home sometimes, but lately those haven't been working as well. The last time I was at the ER they had to follow the Benadryl and Compazine up with Toradol, and that doesn't usually happen. I think I might have overused the combination. Or like you said, stuff just doesn't seem to work for very long at a time. I have been fairly lucky in that I tolerate most meds pretty well--with the exception of Sansert and Cymbalta, but then none of them actually prevent my migraines so it doesn't matter that much. My weight fluctuates a lot depending on what medication I am on and how much nausea I have had with my migraines lately, but I don't get bothered by that. I'd happily be overweight if my head would just stop hurting.

I am going to have to make our travel arrangements soon. I still don't exactly how I need to go about it. I need to call Expedia or Travelocity and see what their policy is for changing plans. It would be so much cheaper to book round trip flights and hotel together, and then just change the return flight date and length of hotel stay if possible, but I have no idea if those companies let you do that.

I hope you have had a decent day. If you can think of any more good info for Philly, let me know. And feel free to write or post to me anytime. Like you said, these situations suck, but it sucks even worse to think you are suffering alone.

Julie

Sarahh8
New Member


Date Joined Jul 2013
Total Posts : 3
   Posted 7/16/2013 8:00 AM (GMT -6)   
Hi all,

I am reading that you have all been diagnosed with new daily persistent headaches as well. I have had 3 DHE treatments and my doctors won't administer it anymore because it isn't working, we have tried every drug out there and nothing is working. I am currently being seen by the headache clinic at Stanford but they are starting to give up and it more than frustrating. My previous doctors at Lucile Packard mentioned something about the lidocaine treatment with a picc line.

On that note I have a few questions. Was the lidocaine treatment successful to any extent? How long were you admitted for? Was the picc line painful?

Thank you so much and I hope you all are feeling better!
Sarah

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 7/16/2013 8:34 AM (GMT -6)   
Hi Sarah,

I don't mind repeating this information, but if you read the rest of the thread, you'll see that your questions have been discussed in depth.

The Lidocaine was unhelpful for me but I've been told that it does help a good percentage of headache patients (how many of these have NDPH, I do not know). I was admitted for somewhere between 10 and 12 days (this was six years ago, I can't remember the exact number. And, finally, in the three times I've had a PIC, I haven't experienced any pain and there's no reason to think that you would either.

Also, if you don't mind my commenting, it's odd to me that your headache clinic is running out of options but you've only recently had DHE treatments. Is that right, or am I misinterpreting it? DHE, though I find it horrendous and unhelpful, is considered one of the go-to treatments for intractable headache. Also, while IV Lidocaine isn't something that's given to patients who haven't tried many other options, it's not typically considered a last resort. If you'd be comfortable sharing, I'd be curious to know what other interventional treatments that you've tried.

Best wishes,

Ben
DX: NDPH (2003-present), Abdominal Migraine (2010-present), CRPS (1998-?)
RX: Lamictal, Indomethacin, Propranolol, Provigil, Viibyrd, Oxycontin, Clonazepam, Lorazepam, Melatonin, Magnesium
CPAP for mild sleep apnea
PRN: Oxycodone, Alprazolam

@ Jefferson Headache Center, Philadelphia, PA @

Sarahh8
New Member


Date Joined Jul 2013
Total Posts : 3
   Posted 7/16/2013 8:59 AM (GMT -6)   
Hi there!

I'm only 17, so they are hesitant on some
of the medication they are giving me. I have had migrianes since this past November so for about 8 months, and I guess that's not very long compared to what you have gone through and honestly that scares me. I am going to be a senior this year and I was missed a lot of school last year and I don't know how that is going to work this year. Anyway I have tried pretty much every Triptan and they all make me worse, I have been admitted for 3 DHE treatments but I have had it other single times and it helped the first time but stopped working, I had tried morphine, magnesium, torodal, iv keppra, Vicodin, oxycodone (as well as all different typed of pain pills and they don't even you touch me anymore), I have been on amyltriptaline, gabapentitne, and i am now on topamax. I have also been on steroids. We are going to do an occipital nerve block soon then if that doesn't work we are trying Botox.
It has all been very new and frustrating to me and I am still trying to figure out how to deal with it.

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 7/22/2013 9:34 AM (GMT -6)   
Hi again,

So, first, I can relate to the problems with school. My headaches started during my senior year of high school and I technically missed more days of school than I was allowed to and still graduate (fortunately that didn't end up being a problem). However, if you talk with your teacher and administrators, I'm sure they'll help however they can. Fortunately, unlike college, changes can be made with regard to class requirements or even the curriculum that you need to complete in special circumstances (all students must be held to the same standard at the college level though, so that a degree granted to one student is equal to that same degree being given to another [also primary and secondary schools are legally required to make accommodations]).

I made it through high school and through two and a half years of college before it all became too much (though, if I had been more aware of my options, I probably could have continued). While those were difficult years, I still had happiness in my life.

Anyway, on to treatments. So, to break it down more concisely, you've tried:
Preventative medications:
    Amitriptyline (a tricyclic antidepressant)
    Gabapentin (essentially anti-seizure)
    Topamax (anti-seizure)
    Magnesium (weak NMDA receptor antagonist)


Abortive medications and interventional treatments:
    Triptans (I never did well with them either)
    DHE (ergot-derivative)
    Steroids
    Keppra (anti-seizure)
    Toradol (anti-inflammatory)
    A whole bunch of opioid painkillers


Now, many of the anti-seizure meds work my modulating Glutamate levels in the brain (mainly lowering them, or their effects). Magnesium does this as well by sitting on NDMA receptors. Glutamate is the excitatory part of the Glutamate/GABA neurotransmitter system. Some of them work in other ways, though. Aside from that, you have the traditional migraine medications like DHE and the triptans (as well as Topamax and Gabapentin, somewhat). Anyway, I'm straying from the point here.

Trying the anti-seizure meds is standard treatment and a good place to start. Since you didn't address this specifically, did the Gabapentin help at all while you were on it, even if it was only a small amount? I'd be curious to see how you respond to Topamax as well. It's one of the most frequently successful medications for chronic headaches and/or migraines, but also, unfortunately, one of the most difficult to tolerate. Even in patients who are helped by Topamax, a very large percentage decide to stop taking it due to the difficult side effects. You may have heard it referred to as Dopamax. This is because one of the most common (and most uncomfortable) side effects is cognitive impairment. One of the times I was taking it, I was working as a retail cashier and I found that I became unable to make change, even when the register displayed how much was owed. Weight loss (loss of appetite is more accurate) and depression are also common. I'm not trying to scare you by listing all of this; it's just important to know what side effects to be wary of and try to find a good dose that (hopefully) helps with your headaches while having bearable side effects.

I have to say that I'm surprised that Toradol is the only anti-inflammatory that you've been prescribed. It can be an effective abortive medication, but there are plenty of others like it that can be helpful as well.

Anyway, I won't breakdown your medication history further, other than to say that you should take solace that you've only touched the tip of the iceberg when it comes to treatment options, both medicinal and otherwise. Medicinally there are lots of other preventative medications to try, especially (but not at all limited to) other anti-seizure meds and other anti-depressants. Though it might not seem to make much sense, many people are able to manage their headaches just by taking an anti-depressant medication. There are also anti-inflammatories that you haven't tried and some can be taken daily. There are also medications like beta-blockers and calcium-channel blockers, as well as some more obscure cardiac medications like Mexiletine. Additionally, neuroleptic medication can also be helpful sometimes.

Non-medicinally, some of your options are things like acupuncture, biofeedback training, certain types of exercise, dietary changes, hypnosis, physical therapy, talk therapy, etc.

As I said, fortunately you still have a lot of options. However, I know it can be maddening as you try to be patient as you try them. So, one of the most important "treatments" that you can do in the meantime is to live as healthy of a life as you can. Your headaches are bad enough--they don't need anything extra to make them worse or to add to the suffering that you're already experiencing with them. So, exercise, stay social and active (that's something that can become very difficult over time), know your limits, try to get sleep that is regular and not too short or long, eat a healthy diet, and, perhaps most importantly, find whatever you can that makes you happy and brings you peace of mind and focus on it. Sometimes the worst pain can be quite bearable if you're in a good mood.

Be well and I wish you all the luck in the world,

Ben
DX: NDPH (2003-present), Abdominal Migraine (2010-present), CRPS (1998-?)
RX: Lamictal, Indomethacin, Propranolol, Provigil, Viibyrd, Oxycontin, Clonazepam, Lorazepam, Melatonin, Magnesium
CPAP for mild sleep apnea
PRN: Oxycodone, Alprazolam

@ Jefferson Headache Center, Philadelphia, PA @

Post Edited (korbnep) : 7/22/2013 9:43:06 AM (GMT-6)


MigraineGal
New Member


Date Joined Jan 2016
Total Posts : 8
   Posted 1/27/2016 9:09 PM (GMT -6)   
Hi everyone!

I was wondering if anyone has seen a significant difference after a lidocaine infusion? I am 18 years old and have had a migraine for a year and a half. I have tried just about everything! I am a little worried to try it because I did a DHE infusion and I did not tolerate it well (side effects), I also suffered from rebound migraines.

Any advice about lidocaine infusion would be great!

Post Edited (MigraineGal) : 1/29/2016 3:51:27 AM (GMT-7)


Annabelle1575
New Member


Date Joined Feb 2016
Total Posts : 1
   Posted 2/7/2016 8:40 PM (GMT -6)   
I'm scheduled for the inpatient lidocaine at Jefferson in March. After waiting 6 months for the appointment it was pretty quick getting into the program. I moved here from MI and MHNI was my primary neuro for 4 years. I did 5 days at their program and I agree with some other posts that it was too rapid fire to know what worked. A daily DHE infusion along with every eight hour abortive and two nerve blocks all done in five days...it was too much. Ive done all the same things you have- meds, nerve blocks, Botox, PT, biofeedback. I didn't get the diagnosis until I went to the Cleveland Clinic. I've been told it's because most things for NDPH are out of the box since so few things actually work. I've had NDPH for 14 years. I've gotten a lot of great advice about prepping for the Jefferson visit. I'll update after I'm out on how it goes.

jimmy902
Regular Member


Date Joined Jun 2016
Total Posts : 20
   Posted 3/1/2017 10:12 PM (GMT -6)   
Any update on how people are doing with the IV lidocaine?
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