IV Lidocaine? and the Jefferson Headache Center

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

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

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

                                                               

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

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

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

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

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

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

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

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

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.