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Posted 12/18/2007 7:01 PM (GMT 0)
Hi All,

I've read several posts here regarding Jefferson Headache Center and would like some information from those who have gone through what has been prescribed for me.

I have had a headache for nearly 3 years and haven't worked in over a year due to unrelenting pain.  Have seen numerous neurologists, pain magmt. specialist, chiropractor, dentist to rule out TMJ, gyno - to rule out menopause, massage, accupuncture, trigger pint injections, nerve blocks, physical therapy, etc.

about 2 weeks ago I had my first appointment at Jefferson and saw Dr. Mamura and Dr. Keiser.  The recommendation is that I be placed in the hospital to deal with my likely dependence on Percocet (12 10/325 mg per day), and to use various IV drugs in an attempt to "break" the headache.  Originally Dr. Mamura said 3 to 5 days, at the end of my visit he said 5 to 7 days, and when he called me yesterday (in response to a letter I wrote him with lots of questions) he said 7 to 10 days!

Those of you who have been there:  How long were you in?  What drugs did they try? When you got out did you need to go back there regularly for infusions?

I am a smoker and was told I cannot leave the hospital to smoke and they would give me nicotine patches to help me deal with that problem.  This worries me nearly as much as the withdrawal from the narcotics!

Post Edited (spavlich) : 12/18/2007 12:04:29 PM (GMT-7)

Posted 12/19/2007 12:03 AM (GMT 0)
Hi,
I've been checked into the hospital by Jeff twice now. Although neither helped me, most people benefit from the stay. They use different drugs for different people, depending on what you've tried before but there are some commonalities.

One of their favorite medication cocktails is IV DHE, phenergan (or another antiemetic), and a strong anti-inflammatory (like voltaren). They often will push Toradol for a day or two as well (another anti-inflammatory). They'll probably try you on IV divalproex (aka valproic acid/depakote). They may give you triptans depending on your prior experience. In the less responsive cases they'll push antipsychiotics such as thorazine, haloperidol, and droperidol. I was given a lot of those during my first hospital stay--consequently I don't remember most of it. They'll give you ativan or klonapin to combat the side effect of these drugs or general anxiety. Sometimes they do IV lidocaine (but lidocaine is a powerful drug that requires you having your heart monitored while on it and can take up to 10 days to tell if it works--my second hospital stay was mostly devoted to lidocaine).

The main idea is that they'll try a bunch of these drugs and adapt their treatment depending on what you respond well to. As for your smoking, don't worry too much. You'll have nurses available 24/7 and a doctor on call at night. They'll look after your comfort, you just need to make sure to be assertive and ask for what you need. When the doctor visits you on your first day (the neurologist comes by once a day on weekdays and Dr. Kaiser, psychologist, and Dr. Tramuta, psychiatrist, will be by several times a week) he or she will draw up a list of "as needed" medications that you will be able to request throughout the days. Make sure that you have a good breakthrough drug on there in case of extreme pain (otherwise you might have to wait for the nurses to call a doctor to get permission, which can take a while in the middle of the night), a drug for anxiety/discomfort (often side effects of the drugs), a good antiemetic (to treat nausea)--I recommend Zofran--and what the nicotine patches that you need. They might consider/you might want to consider asking for wellbutrin while in the hospital. It's a good antidepressant that eases withdrawal from nicotine significantly.

As for time, I believe the "average" patient takes about 5 days. They have a "rule," that they somewhat adhere to that they will keep you until you have 1 whole pain-free day. Generally, they won't keep you much longer than two weeks (the amount of time I stayed both times I was there).

Please feel free to post any further questions, I've been there multiple times and I'm happy to help.

Ben
Posted 12/19/2007 2:42 AM (GMT 0)
Thanks Ben! This is great information, just what I was hoping for. I do have additional questions (probably more as I absorb all of this), but for the time being:

I read in one of your earlier posts that you were on methadone when you were admitted and they wanted you off of it. I am currently taking lots of percocet and Dr. Mamura said they would help me get off of it, and mentioned methadone as a possibility. What do you know about dependency on pain killers? I was told they would keep me comfortable as I go into withdrawal, but how? How long will I suffer from symptoms of withdrawal? And, I can't imagine that I'll be able to correctly gauge my headache pain level if I am in withdrawal. I certainly don't want to give them any information that is not entirely correct in hopes they can figure out this headache once and for all. (yes, I'm still hoping for a CURE.)

Then, there is the cigarette issue which may have me climbing the walls too. I will certainly mention Wellbutrin as you are correct that it may help.

What type of clothing should I wear? Receptionist at Jeff. Headache Center told me to bring comfortable clothes, not pajamas. Sweat pants, tee shirts?

I live with constant headache and pain meds make it possible to at least participate in conversations with family, look at the monitor (short time frames), and they help me to maintain a personality and a surprisingly good attitude most of the time. I worry about having the pain meds permanently eliminated as an option as NOTHING else has worked for me.

Another concern is the fact that I had a terrible reaction to a sympathetic nerve block (lidocaine). I ended up in the ER with extremely high blood pressure, vomiting, and a screaming head pain that reminded me what 10 really is on the pain charts! I was very ill and had to be kept in ICU overnight. I recovered and then had recurrence of these symptoms a few more times over the following few weeks - twice I was in the ER for Toradol and Dilaudid. I've never had a severe reaction to any drugs (except for an allergy to Demerol), and this scared the heck out of me! Doctors said that for some reason (they don't know why) the nerve block injections caused migraines. I've never been diagnosed with migraines, and thankfully after about 4 weeks the "new" headache stopped recurring. This makes me very gun shy about having any drugs injected into my body, and the trial and error method that has been described makes me nervous.

I am very interested in reading anything else that comes to your mind regarding Jeff, your hospital stays, your general impressions... anything at all, as I am not entirely convinced that I should go through with the admission which is currently scheduled for early January.

Again, thanks so much for your posts (both this one and previous). It's wonderful to have found someone who can help me with this decision by supplying real first-person information.
Spavlich
Posted 12/19/2007 6:34 AM (GMT 0)
I'm glad I can help!

Okay, let's see, withdrawal. I was taking escalating doses of methadone at the time and they felt that it was having a negative effect on my pain and treatment. How long it takes to withdraw from a narcotic depends on a lot of factors including how long you've been taking it, what dose, and person-person considerations. I've taken (somewhat) a lot of vicodin, tramadol and methadone in the past, the vicodin for about two years. I found that, so long as I had other viable pain treatments available, I was able to withdraw fairly easily. Coming cold off of the vicodin made me very sick for about a week but in the hospital they'll slowly decrease your daily dose and keep you on constant IV fluids, helping your body to quickly flush clean and detox. If they give you some methadone to ease the process, it should really help. Methadone is given in drug clinics as a drug to facilitate easier withdrawal from drugs as strong as heroin. When I detoxed in the hospital it only took a few days (but you'll be going to the bathroom quite frequently...).

I understand the reluctance to stop taking the only thing that's worked. I was in the same position. You might go through some tougher times after you come off, but you'll discover whether your headaches improve without the likely rebound effect you're experiencing and you'll be able to pursue a wide variety of treatments more effectively. When I came off the painkillers, I had also had unremitting headaches for about 3 years. I had been seeing an independent neurologist and other various doctors and tried many treatments but nothing worked. In the following two years, I tried many many more drugs and treatments at Jefferson. They have a ton of options available. In the end, none of them worked for me. Consequently, I recently starting taking narcotic painkillers again, prescribed by Jefferson. They're very anti-narcotic because they want to find a better, safe, more effective option for you. And they'll try very very hard and compassionately to do so. But if they can't find a solution, they'll do what they need to to improve your quality of life. I know it sucks to think of things being worse than they are now (and if you continue to be resistant to treatment, things will) but it's better to try things that could drastically improve your life than to settle into a poor but less difficult one. Even after two years of unsuccessful treatment and going back to the opioids, I know I made the right decision to try. And I'll keep looking for things to try.

Now, hospital logistics. You'll be in the bed a lot, especially if you're given some of the stronger medications. When you can, try to sit in one of the chairs to get a break from the bed or, better yet, talk a (short and repetitive) walk around the headache treatment floor. The activity/getting out of bed will keep you in better spirits and stop you from getting sore. Definitely bring comfortable clothing since you won't be moving around much, nor do you need to impress anyone. Lots of clean underwear! So long as you aren't on continuous lidocaine they'll detach the IV bag and wrap up your arm in plastic (they'll change the IV about every 2-3 days, but they don't want to take it out in between) to let you shower as often as you feel up to it (which, in some cases can be quite infrequent...). They'll provide you with body wash, shampoo, waterless shampoo (for when you can't shower), and any other toiletries that you need. You'll have your own room with a TV with about 30 decent channels as well as on-demand movies and internet access (a bit awkward to use, but nice if you're bored). There's no telling how lucid you'll be throughout your stay but I'd recommend bring a bunch of books if you like to read or whatever you like to keep occupied.

You'll be served 3 meals a day, probably a bit earlier than you're used to. In the morning you'll be given a menu to pick your meals for the next day with breakfast. Food isn't too bad, but it gets old after a while (the menu options repeat every 4 days or so). There are snacks and beverages available in the patient lounge all day and night. Visiting hours are something like 10AM-8PM. They'll probably put you on a no-caffeine diet also, through there's always decaf tea and coffee available with meals. Because of the inactivity you might have trouble sleeping. So be sure to add a sleep aid to the list of medications that you can request from the nurses (they'll give you Ambien or Lunesta). Also, you'll be awoken once or twice a night for vital signs or a change of IV bags. But, in general, the nurses there are great. I'm kinda reaching here for more information but I'm sure more will come to me later.

In regard to the Lidocaine: Jefferson prescribes Lidocaine in three (or four) forms: oral, nasal, injectable (they often do nerve blocks around your neck and face) and IV. You may have just reacted to the specific circumstances in which the lidocaine was used or you might be allergic, obviously I don't know. But 1)if you tell them you've had a reaction to lidocaine in the past they'll either totally avoid it or determine if it's safe to use--I wouldn't worry too much--and 2)they usually reserve IV lidocaine treatment for a separate hospital admission. They'll probably stick to the other drugs I mentioned. In the worst case, if you have a reaction, you'll already be in the hospital and they'll make you comfortable.

Finally, although it's totally up to whether you're comfortable with the admission, I think it's a good idea. When you have such a debilitating problem, it's important that you try every option open to you--especially the ones that have a high probability of helping. It's obviously not going to be fun being in the hospital but in the end it really comes down to trying anything that might make life better. I don't know if you'll benefit from the admission, but I do hope you try.

Feel free to keep the questions coming,
Ben

P.S. If you have any questions that I might not know the answer to, I have an appointment at the center tomorrow afternoon and I'd be glad to ask anything for you if you reply early.
Posted 12/19/2007 2:37 PM (GMT 0)

Thanks again Ben - you are extremely knowledgable and quite a find!!!

I don't have any other questions at the present, but I'd love to hear from some people who have had success with in-patient therapy.  I looked around at the posts and couldn't find any.  This is part of my reluctance.

I do little other than think about the impending hospitalization, so I'm sure to come up with additional questions.  Again, thank you so very much!

Posted 12/20/2007 5:23 PM (GMT 0)
Wondering how Ben made out at appointment yesterday. I hope that you are getting some relief and that there are additional ideas to sustain you.
Also, I'd like to note that I am not "resisting treatment," I am hesitant due mostly to the horrible reaction I had from the sympathetic nerve block. I have steeled my nerves and have had 30 to 40 trigger point injections at a time, in two week intervals for several months and have endured every single thing that has been recommended throughout my nearly 3 year ordeal. For some reason that I cannot figure out, I have a bad feeling about the in-patient plan - but since there is nothing else on the horizon to even consider I'll be enduring that too, as like all of us, I must find the answer to this, get back to work and get back to running my life without pain. I still believe there is an answer for me, hopefully for all of us!
Merry Christmas to all,
Spavlich
Posted 12/21/2007 12:42 AM (GMT 0)
Hi again Spavilich,
Wednesday's appointment went okay, though it was a bit disappointing. We talked about how Dilaudid hasn't been working very well for me and ended up switching to oxymorphone (aka Opana). So far it has not been terribly effective either. I have another appointment scheduled for next week to evaluate the new drug. If it remains ineffective then my last resort will be fentanyl (though I'd like to give the oxycodone another spin).

I asked if there were any further treatments that we could pursue there. Essentially the answer was no. We discussed the possibility that other headache centers might have options that I haven't tried. I'm in the process of contacting the Michigan Headache and Neurological Institute to find out. Also, Drexel is doing Ketamine infusions for RSD (which I've had in the past). The treatment also shows promise for intractable headache so I'd like to explore that option as well (though I don't think they're allowing the treatment to be used for this purpose yet). I hope something gives soon.

Ben
Posted 12/21/2007 5:05 PM (GMT 0)
So sorry to hear comfort is eluding you. I wish you well, and again thank you for all of the help and ifo you have provided to me. I will be sure to post what happens when/if (still just a little iffy) I head to Jeff in January for in-patient treatment.
Happy Holidays,
Spavlich
Posted 12/22/2007 9:34 AM (GMT 0)

Hello,

I just wanted to throw my two cents in here really quickly if you don't mind. I have had terrible migraines for years...and several time I have been referred to Jeff and the Diamond Headache Clinic and on multiple occasions my insurance will not pay and that is the ONLY REASON I have not been to either.

I really (opinion only) think it is a good idea to go, with an open mind and try to see what they can do to improve your quality of life. Now, if the big hesitation is for example nerve blocks, I would just explain the situation and strongly suggest that not be approached again (at least immediately- since it left such a "bad taste")

If you were happy and totally healthy you wouldn't be here, and you would even be having this conversation...so handle your affairs at home so that you can focus on having a better, healthier and happier you when you get home!

Good Luck and please keep us Posted!

Ben-Awesome posts! Thanks for the info...for all of us!

Posted 12/22/2007 5:58 PM (GMT 0)
You're welcome Sara; thank you for the additional information as well.

A note on the insurance problems: Jefferson's within my regional network so I typically do not have problems getting approval for office visits or treatments. However, for either my first hospital stay or both, I had a little bit of trouble getting authorization from Independence Blue Cross (Keystone Health Plan East). Their typical procedure is that, after you schedule the inpatient stay, they'll call you the night before to tell you what time to come in, according to the availability of beds, etc. I remember getting the call and being told that my insurance did not approve the stay but that the Jefferson office was in constant communication with them. It took until about 3:00 PM the day of my admission before they got full approval, but they fought very hard with my insurance to get it. The front office staff at the headache center is incredible in that regard. Several times I've had difficulties like the one I described with my insurance and, although I've sometimes had to wait several hours or longer, Jefferson has always very strong asserted to my insurance that I needed the care and, in the end, convinced them to pay for it. So, though there might be some obstacles, there is definitely help to be found.

Good luck and happy holidays!
Ben
Posted 12/30/2007 10:52 PM (GMT 0)
Hello Ben and Sara (interested others as well),
I appreciate all of the input from both of you - and totally "get" what you're trying to say, Sara. I do not wish to appear ungrateful for the opportunity to be helped by those at Jeferson Headache Center. My concerns, however, are very real and I am down-right frightened to enter the hospital. That said, I have decided that it is my only option at this point, and thus I will be doing so in early January, 08.

In the nearly three year saga of my head/eye pain I have undergone every single thing that has ever been offered in an attempt to solve my chronic pain. Approx. 30 medications tried and failed along with accupuncture, nerve blocks, trigger point injections galore (20 or 30 injections each time!), etc. My husband and grown daughter have seen me through all of it and with the grace of God I know that I can get through this as well. My hope and dream is that a solution to living relatively pain-free will be found.

I met with my family doc last week to discuss the in-patient plan with him and he agrees that I am likely extremely physically dependent on my pain meds (percocet currently, but vicodin for a long while previously). I take large quantities daily and they do dull the pain but as you know I need to ingest more and more - and more and more frequently to get any results. As these meds may very well be creating some of the pain (rebound or withdrawal initiated - or probably both) it is high time I get my system clean of them. My trusted family doc also told me that he would find it extremely odd if I didn't have real concerns and trepidation about the in-patient plan, which helped put it into perspective a bit. It's normal to be afraid of the unknown and somehow I forgot about that perfectly human trait. Thanks again to Ben for providing me with so much information, enabling me to have some understanding of what will happen! Such excellent specific information that has helped emensely!!

Again, I am sorry if I portrayed myself as being ungrateful for my opportunity to obtain the services of such a respected group of physicians. This was not my intent at all. I'm truthfully scared of the treatments, the drug withdrawal and very uncomfortable being away from home for an extended period of time - BUT I am putting my all into this and praying for success. I will post when I get home to let you know how it went.

Happy New Year to all - and I wish for each of you a year of less pain and more joy!
Shirl
Posted 2/2/2008 4:26 AM (GMT 0)

dear spavlich     just wondering how your stay at thomas jefferson was. i have been admitted there 3 times, with no results. i was with dr avi a-s-h-k-e-n-e-z-i for 9 months. i have cervical headaches. constant headaches from morning till i go to sleep. feels like a vice grip around my head, my face and nose feel freezing cold. the top of my head hurts so much that i cant even touch my scalp or hair. i have had headaches for almost 2 years now. i live in lyndhurst,new jersey. they tried everything on me. nothing helped. my last time in the hosp they told me that if i go back to taking pain meds, that they would not treat me any longer. i never went back to thomas jefferson because i did have to go back to taking pain meds. got them from my primary doctor. i am in columbia pres headache center in nyc for about 2 months now. we are waiting for botox to get approved. thats one thing we havent tried. i am just praying this might help. i am 22 yrs old and i do not want to live anymore. i am out of work and had to put school on hold. i feel like i am going insane. if i dont get anywhere with columbia, i know there are 2 more headaches by me. they are montifiore in the bronx, and lenox hill in nyc.

                        let me know how you made out   hope you are feeling better

                                                                                  ashley

Posted 2/2/2008 4:27 AM (GMT 0)

hey ben  its ashley  i know you left thomas jefferson. where have you gone now?

                                      

                                                                 ashley

Posted 2/2/2008 1:44 PM (GMT 0)
Hi Ashley,

I entered the hospital on a Monday and by Wednesday evening I was pain free!  I continued to stay until Friday afternoon and had no head pain so they sent me home.  Alas, I was home 3 days when it returned with a vengence.  Drs told me to expect that.  Since then I have been to the Center twice for medicine changes.  I get minimal or no relief from that has been prescribed thus far. (Indocin, Depakote, and most recently Minocycline and others)  I was also sent for an IV infusion.  Nothing helps and I feel as you do ... pain meds are bad, but they allowed me to have some quality of life.  The current meds don't work at all - I haven't been told they won't see me if I go back to pain meds, but I suppose that is in my future.

Hi Ben!

Any changes for you?

All the best,

Spavlich

Posted 2/10/2008 7:37 PM (GMT 0)
An Update of my condition and Doc at Jefferson trying to help me.

Have had uncontrolled pain since Jan. 12, 2008 after the 5 days of blessed pain free existence.  Doc has tried many medications, including ridiculously expensive nasal spray (doesn't help at all! - and I'm hoping to meet someone who can use the nearly full box of it I have).  Most recently I was put on Zyprexa (anti-psychotic).  Taking one tablet doesn't do much, taking two usually puts me out like a light - no pain when in that state!!

Last phone conversation with my doctor he suggested that I may benefit from another hospital stay.  I have a strong family history of heart disease, am overweight, slightly high BP and am a smoker, so treatment like Ben has undergone (IV DHE, phenergan) is a concern for me.  This treatment was mentioned during my stay in early Jan. but was always accompanied with concerns about possible heart issues.  So... as they say, we'll see.  I sure don't want to add another serious problem - heart attack, stroke, who knows!

I'm still very interested in anyone's story regarding Jefferson Headache Center and would be glad to share any info that I have from my stay.  I would certainly recommend them, they certainly do know headaches, but my "cure" has yet to be found.  Next appointment is tomorrow afternoon.

Wishing you WELL,

Spavlich

Posted 2/10/2008 8:46 PM (GMT 0)

hi spavlich its ashley i was admitted to thomas jefferson three times. first time thorizine drip for three. went home did nothing. second time for two weeks lidocaine drip benedryl, and depacon drip. has to get off percocet also. pain level got down to a 3. went home next day back again. third stay same drips. evengave dhe. got down to a level of 3 again.  went home same outcome. i have what you call cervical headaches. they are 24 hrs a day. i no longer go to tj. i am now in columbia in nyc. waiting for botex to be approved. now on morphine and percocet. but getting used to the dosage already. if i get no where with columbia i will be off to montifiore headache in the bronx. i live in n.j. where do you live. look at the montifiore web site. dr grosberg is the one i would see. look at what is interest are. but then again they all look great.

                                                                            ashley

Posted 2/10/2008 10:02 PM (GMT 0)
I also have headaches 24 hours a day, but mine is localized (about the size of a dime or nickel) at the left corner of my left eye. I've been diagnosed with everything from migraine, cluster, tic deloux, and have undergone lots of trigger point injections from one neurologist who thought the pain was nerve related. Alas, no one knows. There was one doc at Jeff who mentioned a "coin headache," whcich sounded so right, because that's how I always describe it to people, but I can find little on the internet about that. I believe my Jeff doc (Marmura, who is very pleasant and caring), is now diagnosing me with NDPH or Cluster. No matter what it is, it seems unsolvable. So many doctors, drugs galore, and side effects too. We live northwest of Phila. It takes 45 min. to 2 hours to get to Jefferson dependent on traffic. Columbia would be a bit of a trip for us, especially since if they want to see me every 2 or 3 weeks like Jeff! I've been unemployed and on disability from this for over a year (headache began 3 years ago, but for a while I could function) - We need my husband to be able to work as much as possible and keep the Oh So Needed Health Insurance. I will keep it in mind though, as well as Montifore. As bad as I feel it's comforting that others are out in the world with similar circumstances.
I wish you WELL!
Spavlich
Posted 2/10/2008 10:02 PM (GMT 0)

dear spavlich its ashley again. i forgot to ask you, you didn't say what thomas jefferson gove you while you were in the hospital for that week.

                                                              ashley

Posted 2/10/2008 10:21 PM (GMT 0)
Prochlorbenzaprine. And Depakote and Verapamil, both of which I now take daily along with a bunch of other stuff in tablet/capsule form. Also I asked for sleeping ambian (didn't really help), and they gave me minimal methadone. My take was that the docs thought some of my problem was due to overuse of hydrocodone and/or percoset, but now that I haven't had any opiod drug for more than a month, that is apparently not the case. If it were only that simple!
Spavlich
Posted 2/11/2008 7:00 PM (GMT 0)

hi spavlich thomas jefferson always say its rebound headaches because of pain meds. like you said even when they take you off it the headaches come back. i really dont know what they expect you to do when the pain gets that bad. i wish they would  get these headaches 24/7 and i would like to see how they deal with it. they really piss me off . hope you feel better. they never did the lidocaine drip when you were in the hospital? let me know   

                                                                          ashley

Posted 2/12/2008 3:48 AM (GMT 0)
Hi Ashley,
No, I don't think I had lidocaine drip while in the hospital. I did have 2 injections of lidocaine (right around my eye where my pain is. No fun, also no results.
Today I was back for an appointment, and since I seem to be having some good results from Zyprexa he's iinstructed me to keep taking it. Also he added Topamax (which I have taken a long time ago, and I don't remember the result). In addition to that I take Minocyline, Ultram, Nortriptyline, clonazepam, and a few others. I am beginning to taper off Depakote which apparently didn't work and has caused tremors and I've gained 15 lbs while on it! Also beginning to taper off Verapamil, for lack of response in pain and because the doc decided my rather sudden swollen ankles and calves are being caused by that. I hope he's right, pamplet from RiteAid says swelling of ankles and legs is a serious adverse even and should be reported to your doctor immediately. I brought it along to show him... still he thinks it's the Verapamil. My only choice is to agree and do as I'm told.
I was told today that rebound has nothing to do with my headache - YIPPEE, and no kidding! Several previous neurologists thought that too. Anyway, overall my appointment was good today, my pain level has been pretty low for the past 3 days and the doctor didn't mention putting me back in the hospital for more "guinea pig" infusions.
Midren was prescribed, I've not taken it to the drug store yet to get filled - Have you ever been on that? I'm hoping it may provide some relief in addition to or instead of Zyprexa (also a weight gain adverse event drug).
I don't know what they expect us to do either - and I feel your pain, your anxiety and your anger.
I feel good about my appointment today,and hopeful that the new meds and the tapering off of some of the others will help me gain some predictable control. Fingers crossed for you and me too!
All the best!
Spavlich
Posted 2/14/2008 2:33 AM (GMT 0)
Wow--sorry, I've been MIA for a while. I haven't had a chance to read all of this yet but I'll try to do so soon and edit this post with something useful. I hope I read some good news :)

Ben
Posted 2/22/2008 3:20 PM (GMT 0)

Spavlich have you tried Massage Therapy? I know how simple that sounds, but hear me out. I recently went to Massage and you made me think of it when you said ou have a dime size localized pain in your eye. I also had pain similar to what your explaining and it was probably one of the worst types of pain I have delt with when it gets bad. There is a muscle in your neck (sternocliedomastoid). This mucle is responsible for "keeping your head on your shoulders" especially if there is some kind of trauma like a car accident. This muscle unlike some of the other muscles of the neck does not hurt in the neck but directly behind the eye. Now, I have since stopped going to Massage therapy because it wasn't helping me much, but the therapist showed me a way to massage that muscle (It runs from near the clavicle up towards your ear) by pinching it (It hurts A LOT) but when I get that pain in my eye which to me feels very localized, if I pinch that muscle on both sides of my neck for a while, the pain behind my eye goes away.... its amazing, it doesn't help all of my pain, but it does help that. I know how simple it sounds, and I'm sure you've probably seen a massage therapist with the history that you have, but when you said that I had to tell you about this because it sounded so similar to me! Good luck, any little bit helps! :)

 

Jenn

Posted 2/22/2008 9:40 PM (GMT 0)
Yes, Jenn, I have had Massage Therapy, but not specifically what you're recommending.  I will look into it, and really appreciate your post!

Everyone... I  have been continually feeling worse and Dr. Marmura has been tweaking my meds (8 or 9 different ones) since I got out of the hospital on Jan. 10.  Yesterday I reached the end of my rope and called him and left a message regarding the complete inability to control my pain and he returned my call and ultimately called in some vicodin for me in hopes that it will help.  It's lower dose than I was dependant on and has already helped considerably.  I am continuing the "plan" of all of the other meds and will see him again in early March.

I wish relief to all,

Spavlich

 

Posted 2/22/2008 11:30 PM (GMT 0)

Sorry to hear your having such a rough time! Oh and if it helps, the massage therapist I saw said that normally that muscle is one of the easiest ones to "make happy" again and normally stops bugging you.. unless your me of course because my neck is relentless...Good Luck! and hey if it even helps a small amount, it's worth it!

Jenn

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