thomas jefferson headache center in phila,pa

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givenup
Regular Member


Date Joined Aug 2007
Total Posts : 94
   Posted 10/10/2007 8:54 PM (GMT -7)   
does anyone out there go to thomas jefferson headache center in phila,pa. Who is your doctor? Right now I am at thomas jefferson pain management center.If anyone has gone to either place what was your experience.
 
 
 
 
 
 
 
 
 
                                                                           givenup    
                                                                                         Ashley

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 10/17/2007 8:30 PM (GMT -7)   
I've posted this before, but I do. I saw Dr. Nahas today.
DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Rozerem, Emsam
PRN: Haloperidol, Zyprexa, Lodine, Thorazine, Zofran


givenup
Regular Member


Date Joined Aug 2007
Total Posts : 94
   Posted 10/18/2007 5:07 PM (GMT -7)   

hi its ashley givenup. sorry i forgot you told me who your doctor was at thomas jefferson. well i finally found out that i do not have cervical headaches. since the nerve blocks did not work at all the pain management doctor  dr zhou who is at thomas jefferson also said this proves i do not have these types of headaches. on tuesday the 16th i was admitted to thomas jefferson again by dr young. my doctor is in israel right now. the pain got so bad that my parents drove me down to the er on monday 15th. they did not admit me. we slept over and had to go for the office visit in order to be admitted. i have been taking nothing but percocet for the last 7 months. i know its not good and its not the answer, but when you have pain for 24hrs a day, every day i have to take them. i was up to 12 per day 10mg. dr young made me sign a contract stating that after i get out of the hospital i have to come down to phila for an office visit and urine test. if they find anything they will not treat me anymore. i am so afraid and scared i will never get rid of these headaches. i am 22 yrs old. had to stop working and going to school. one year and a half of having these headaches. now they are telling me i have chronic daily persistent headaches. no kidding. they started me on the dhe-45 drip along with topamax on tuesday. the dhe dosage is only 0.1 and they will increase every day. they also give me the depacon drip every 12 hrs for pain. does not really help. my head feels like its going to explode. they say is from coming off the percocet. the pain gets worse before it gets better.thats if it even will. now today 18th they are also going to give me zyprexa for five days along with everything else. one bad side effect is alot of weight gain. im still trying to loose what i put on from the lyrica i was on before. i just noticed you are on that also? then today they had to tell me that i am a hard case because the meds seem to not work well for me. that my chemistry is difficult. i just sat there and cried and cried. thats all i do. they said that some people just have to learn to live their life with headaches. not me i will you know what to myself. the psyc came in to see me because i keep saying that. he was no help. first the doctors said to me when i checked in to the hosp, dont worry we will get rid of these headaches and then today they tell me that i have a complicated body chemistry which makes it hard to help me. they said that usuallypeople are only admitted once and their headaches are better. but since this is my third time they are not so sure. then then wonder why i want to off myself. maybe i am a weak person. i dont know. all i know is that i cannot live like this anymore. were you ever hospitalized ? how are you doing now? are your meds working, any bad side effects? please let me know.                                                                  

 

                                                                               thanks ashley


missmm
New Member


Date Joined Oct 2007
Total Posts : 10
   Posted 10/19/2007 12:39 PM (GMT -7)   
I see a doc and TJ but I am in the stroke center. I have nothing but good things to say about the care and treamtent I received at Tom. Jeff. I was there for 3 weeks this past summer. Wonderful facility and fine doctors. They saved my life!
Missm

~Liz
Regular Member


Date Joined Oct 2007
Total Posts : 120
   Posted 10/20/2007 2:06 AM (GMT -7)   
Hi Ashley, 
I haven't been to the Thomas Jefferson Headache Center, but I have been to a few similar places.  I think I have been on all of the medications that you listed, except percoset because my doctor wont prescribe narcotics for me to use at home.  I have to go to the ER about once a week for a shot of Demerol or Dilaudid to help manage my migraines.  I've had chronic daily migraines for a little over 4 years now and my doctor has told me that it's something that I'm just going to have to learn to live with.  I've also seen several psychiatrists and psychologists because of the depression that comes with chronic pain.  I know this sounds kind of bad, but I really appreciate the fact that there are other people that know what I'm going through, it helps a little.  So, if you'd like to talk anytime, just give me a shout :)

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 10/23/2007 8:03 PM (GMT -7)   
Hi Ashley,
I've gone through remarkably similar things at Jefferson. Last June I had my second hospital admission at Jefferson. Before Dr. Nahas became an attending doctor, my treatment was supervised by Dr. Young as well. I remember really well being in my hospital room last August (my first visit). I had been taking highish doses of methadone before my admission and they made me detox during my admission as well. I also have been diagnosed with daily persistent headache. It's kind of what they say you have when you have headaches all the time and you don't respond to treatment well.

I remember when I was first admitted that they told me the same thing that they told you. That most patients only need one admission to breakthrough their headaches and that it typically takes 3-5 days. Well, I was there for almost two weeks and would've been there longer if I didn't have school starting 2 days after they let me out. Like you, however, it's been about 2 years since I've been able to work or take classes. I've been told that I'm a very difficult patient to treat, that my biochemistry doesn't respond well also. During my first visit I was given DHE, phenergan, klonapin, benedryl, thorazine, maybe zyprexa and many other medications. The thing with zyprexa, haldol, and thorazine (all medications that I have sitting in the other room) atypical antipsychotics. They can cause anxiety, shaking, weight gain, drowsiness and a whole host of other things. Sometimes they're effective though, as abortive medications. Haldol, if I take enough, will take the edge off of a very bad headache for me. Zyprexa, sometimes also.

As you've probably noticed about the Jefferson headache center, they're very rigid with their policies. For example, you had to be admitted after your office visit, they won't allow narcotics and they have a very formulaic way of trying to stop your headache. When I first started seeing them, they told me all of the treatment options that they had to offer and I was willing to come off my narcotic painkillers to try something that might be more effective/curative. As with many other headache facilities, their go to med is DHE, whether it be through an IV, nasally administered, or injected IM. They're also keen on nerve blocks (injection around the nerves of local anesthetic), botox injections, and a ton of other meds to try. We did (daily) the antiseizure medications: topamax, zonegran, lamictal; bipolar type drugs: lamictal, depacon/depakote/divalproex, abilify, thorazine (abortive), zyprexa (abortive), haloperidol (abortive) and droperidol (abortive); antiinflammatory: too many to count honestly but very strong, both daily and abortive; antidepressant: zoloft, neurontin, lexapro, effexor, Wellbutrin, Emsam, cymbalta; odd assortments: mexilitine (oral lidocaine), nasal lidocaine spray, methergine, namenda, provigil, klonapin, reglan, zofran, phenergan, verapamil and more. I also have tried ever triptan (imitrex, axert, maxalt, zomig, etc.) with no success. They also had me try biofeedback training with the headache center psychologist.

During my first few office visits with them, when they told me they wanted me to stop taking narcotic medications (which were the only things that had ever worked for me), I asked them "in what situation would we use these medications again?" they told me that they'd consider it only after they had exhausted all of their other options. I don't know what you've tried before other than the percocet, but Jefferson does have a lot to offer. Coming off narcotics that you've been reliant on for a long time can indeed be very painful, mentally and physically. If you find that you're getting anxious, ask for some Klonapin. Don't get too upset that their impatient remedies aren't working on you because they're just the tip of the iceberg. If they can find another medication that will calm your headaches to replace the narcotic then believe me you will be better off. But I know what it feels like to feel like there's no hope. Being in the hospital for a prolonged time is hard enough, but when nothing's working it drives you up the wall. I assume that the psychiatrist you saw was Dr. Tramuta. I never really liked the guy personally. So if you're really depressed or suicidal, talk to Dr. Young about it. He's a lot more likely to be helpful. As I said, I know how you feel, having gone through every weapon in the clinic's arsenal. Now that they feel like they've been through everything, they agreed to prescribe narcotic pain medication under very controlled circumstances. My life has been really tough trying everything else and not having anything work, but it was worth trying. Even though my head is a lot better than it was before they prescribed these meds recently, I do wish they had found something that would've worked better.

I'm now 23 and I've had headaches for five years now, constantly. A year and a half is a long time though too. But don't forget that there's still a lot left that could help you, could manage or eliminate your pain. Try to look on at the positive side, considering how many options you now have and the really high likelihood that something will work. Don't worry about your weight, with the zyprexa or anything else. I've put on a lot of weight with all the drugs I've been on (god, I used to be thin?!). You really just need to focus on finding something that'll help your head and worry about the rest some other day. Although Jefferson wasn't able to cure my migraines, they're a very good clinic with a lot of caring and intelligent doctors. It won't happen overnight, but they WILL find something to make your life better.

My email address is bnh4@pitt.edu. My AIM screen name is korbnep14. If you shoot me an email, I'd be happy to even send you my cell phone number if you need someone to talk to (though I'd prefer to not post it publicly). Best of luck :-) I'm sorry that my post is so long and that it took me so long to get back to you.
DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Rozerem, Emsam
PRN: Haloperidol, Zyprexa, Lodine, Thorazine, Zofran


givenup
Regular Member


Date Joined Aug 2007
Total Posts : 94
   Posted 10/24/2007 4:22 PM (GMT -7)   

hi korbnep thank you so much for writing back. i am still in the hosp. got down to a pain level of 4 and one hour later up to an 8 again. now i am only on the lidocaine and depacon and topamax. had to get off the dhe. my dr, dr ashke****,( dont know why his name doesnt come out after spelling it, said i will be here for awhile. wants me to tell him when my pain level is a 0 or even a 1 (right). then he says they will put me on whatever they would send me home with, but keep me in the hospital for about another 2 days to see what happens.  what narcotics did they give you and what other meds are you currently taking now? i did see dr young when my doctor was away. he was nice. aslo saw the psyc dr kaiser and dr tramutra. where do you live. did your headaches just start one day. thank you so much for writing me back. what narcotic were you taking besides methodone? 

 

 

 

                                                                         talk to you soon   ashley


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 10/24/2007 5:01 PM (GMT -7)   
I'm currently taking 200 mg Lamictal, 15 mg Namenda, 9 mg Emsam, 2 mg Abilify, 240 mg Verapamil, 300 mg Provigil, 4 mg Clonazepam (Klonapin), 8 mg Rozerem, 12.5 mg Ambien and varying amounts of Oxycodone (Percocet without the tylenol)...this is all daily.

As needed, I take (in order of preference/efficacy): 200 mg Lodine + 100 mg/hr (up to 500 mg/day, 2-3 times a week max), 2 mg haloperidol (Haldol) per hour (up to 10 mg/day, 2x /wk max), 10 mg Zyprexa (up to 20 mg/day, 2x/wk max), migranal nasal spray, IM injection of toradol (1x/wk max), IM injection of DHE (2x/wk), IM injection of Droperidol (2x/wk).

Other things I have include Relafen, Voltaren, Phenergen, Zofran, Reglan, Thorazine, every type of triptan on the market (these don't work for me though), lidocaine nasal spray (doesn't work), and probably a couple of other things. But the only one I take regularly is zofran, for nausea.

At the time that I came off of narcotics for jefferson, I was only taking methadone. But before that I had taken ultram (tramadol) and vicodin (hydrocodone + ibuprofen) before that.

Even though it didn't last, I'm happy to hear that they got your pain down to a four. Do you have any idea what triggered that? Anyway, as much as it really sucks to be in the hospital, they can do more for you there than anywhere else. Oh and the reason that you can't write a-s-h-k-e-n-a-z-i is because it has the word n-a-z-i in it, which gets filtered by the forum. Keep me updated! I'm still more than willing to talk if you need someone to talk to beyond the occasional forum post. I've been there before.
DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Rozerem, Emsam
PRN: Haloperidol, Zyprexa, Lodine, Thorazine, Zofran, Oxycodone


Sugar9486
Regular Member


Date Joined Aug 2007
Total Posts : 31
   Posted 10/24/2007 5:06 PM (GMT -7)   
I went to Thomas Jefferson headache center and I have absolutely nothing good to say about them. The first plan that they had for me didn't work for me so they gave up. I have heard this from many many people who went there, if they get it right the first time they can do really great things, but if it doesn't work out the first time they treat you badly until you go somewhere else or back where you came from. I take tylenol maybe 1 time a month, it was written in my chart that I take AT LEAST once a day and that all my headaches are rebounds and that I'm an abuser of other the counter medications. I'm still 5 months later trying to get that expundged from my records even though my old doctor knows that I'm not an abuser. What a mess. Good luck to you though!

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 10/24/2007 5:14 PM (GMT -7)   
Sugar,
I believe that you had a bad experience, but I can attest to the fact that that is not typical coming from Jefferson. I have been treated by them for nearly 2 years and we've tried treatment after treatment after treatment. My only problem with them was that they REFUSED to ever give up and say that they couldn't find a solution. It's a big clinic so you may have gotten a doctor that was a bad egg, but, as I said, after going there for two years, they work very hard for you and they're very caring. This especially includes the doctors that have higher position in the clinic, who I have come to know well. And I know many people who have gone there and continue to go there that will collaborate this.

Also, this is a thread started by a girl who is in the hospital being treated by this clinic who is also scared. This is not the place or time to post negative opinions about that treatment center that frankly are not justified or helpful.
DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Rozerem, Emsam
PRN: Haloperidol, Zyprexa, Lodine, Thorazine, Zofran, Oxycodone


Sugar9486
Regular Member


Date Joined Aug 2007
Total Posts : 31
   Posted 10/25/2007 8:39 AM (GMT -7)   
Korbnep- I'm so glad that you had a positive experience at Thomas Jefferson and I am by no means saying that they do no help anyone. The person who started this thread was asking for opinions and that was mine. I know that I am not the only person that feels the way that I do, in fact I have spoken with 3-4 other doctors who will also attest to what I am saying. I feel however that other people should know that if TJ does not work out for them that there are other places you can go. When I was treated badly at Thomas Jefferson I almost gave up hope thinking to myself that this is suppose to be the number one headache clinic in the area and some would say in the US and they can not help me what am I suppose to do now? Well I did figure out that there are other things that you can do. I to saw some of the doctors that are higher up in the clinic and yeah they were very nice, however when my "doctor" who was probably as low as you can get in the clinic made a suggestion they agreed with him 100% even if I didn't. The last straw for me was when I saw this doctor after being in horrible pain for two weeks, when he could finally fit me into his schedule (This doctor answer all his phone questions himself and set up the "emergecy" appointments himself) gave me something to try (which I had already done) so I did and he told me if the problem does not resolve to give him a call back and we would talk about doing infusions. I called him three days later crying in pain and he told me there was nothing more he could do for me. I'm sorry if this is not what you want to hear, if it isn't then don't read it, but it's my story and I think that people should know they have other options.

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 10/25/2007 12:58 PM (GMT -7)   
Well, as bad as your story sounds, it doesn't sound like the way that Ashley is being treated, as she's been put on numerous medications in the hospital and they're determined to help her head before discharge. So I just want to be careful regarding the context in which these horror stories are presented.

If I may ask, who was your doctor when you went to TJ and how long ago was it? It seems like you were treated very poorly and I can't imagine that any respected medical treatment facility would allow that to happen if they were aware of the real circumstances. I'm certain that if you had spoken with any of the attending doctors about what you were put through it would have been made right.

As another story about JHC, I was able to schedule my bodine infusions during an office visit and get them done within a few days of scheduling. I was typically having office visits every 4-6 weeks but I've scheduled visits within a weeks time or less in the past. A difficult thing to understand about Jefferson, and really any headache clinic, however, is that they see an enormous number of patients. When I was seeing a private practice neurologist before I went to Jefferson, I was able to get appointments very quickly when I was doing particularly poorly. Neurologists at Jefferson however, are typically booked many weeks or months in advance (and often a lot of those bookings are double scheduled). A two week turn around is really not that terrible--for any large headache clinic. As they say on the phone system, "if you are having a medical emergency please go to the nearest emergency room or dial 9-1-1". Similarly, you can leave a message for a nurse at any time the office is open (when it's closed you can ask for a call back from the doctor on call when you speak to the answering service) and more often than not they'll call back the same day. They can prescribe medications and even arrange for an office visit with a nurse with very little delay (and the nurses are sometimes more qualified than many of the younger doctors, in dealing with migraines).
DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Rozerem, Emsam
PRN: Haloperidol, Zyprexa, Lodine, Thorazine, Zofran, Oxycodone


Sugar9486
Regular Member


Date Joined Aug 2007
Total Posts : 31
   Posted 10/25/2007 2:31 PM (GMT -7)   
I saw Dr. Gregg-- he was my "normal" doc my attending was silberstien and I spoke with him many many time and everytime it was the same thing, "I agree with the plan Dr. Gregg has put in place." It was very frustrating. I have extensive background in migraine problems and had tried many of the drugs that they are using for preventatives before I even got to TJ. When I started there I was on Amatriptyline and Topamax which wasn't working at all. The only thing they changed was the Amatriptyline which they switched to Noritriptyline which is almost (but not quite) the same thing. When I went back for the follow up after that and said my headaches were still getting worse they said we could do injections in my neck again (they didn't work the frist time) I opted at that time not to do this because it had actually made my headache worse the time before that. So I went home and was told to take migranol 3xday for 3 days and did, by the 3rd day I was in more pain then I had started with so I called him back because he said if it didn't help he'd schedule me for the infusions. When I called back he said there was nothing more that he could do for me. I said okay, then I'm going to end up back in the ER. He told me that and I quote "we do not recommend that our patients go to the ER" I said okay then what do you recommend. I was told that he recommend that I quite taking tylenol everyday. I'm pretty sure the problem revolved around him because he had everyone convinced I was taking tylenol 1 or more times a day when what I had told him was I'm taking it a lot if I take it 1 time a month. I was not trying to scare anyone with what I said, but the truth is every person has a different experience with different doctors and I'm from what I have seen in this forum the first one to challange the amazing Jefferson Headache Center. I have read a lot of their write ups and for some people it's a great place, but it was not for me. So I'm sorry if this offended some of you, but it's my story and I'm going to continue to tell it because I think people should realize that just because Jefferson couldn't help them other places still can. Like I said before I was very worried about who was ever going to be able to help me if Jefferson wasn't able to. I did find help though and I am doing much better now without Thomas Jefferson.

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 10/25/2007 2:56 PM (GMT -7)   
This could be incorrect, but I searched the staff for the JHC and came up with no results when searching for a Dr. Gregg. So I assume he's no longer working there. I haven't heard of him. Unfortunately, Dr. Silberstein is in charge of the center. I have to admit that if JHC has a weak point, that is it. While Dr. Silberstein is a leader in migraine research and advocacy, he's not very good at working with patients or other doctors, from my personal experiences and what I understand of his reputation. Again, I don't doubt that you were treated the way you were, so you need not repeat your woes experienced there, but I stand by my statement that that sort of treatment is abnormal with Jefferson; in the time I've been treated there I've worked with nearly every neurologist and nurse on staff.
DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Rozerem, Emsam
PRN: Haloperidol, Zyprexa, Lodine, Thorazine, Zofran, Oxycodone


Sugar9486
Regular Member


Date Joined Aug 2007
Total Posts : 31
   Posted 10/25/2007 4:41 PM (GMT -7)   
I'm pretty sure that Gregg is still there, I think he might be a resident.. which could be the reason he wasn't the smartest guy in the world, but when I was refered there thats who was given to me. I totally agree about Silberstien. I'm glad that TJ is helping a lot of people, but I have also heard from a lot of people that have had an experience similar to mine with a lot of the other doctors, so I'm not saying that you aren't being treated well, in fact I hope you are, and that Ashley is also, but it's not totally off base to not have great experiences there and it isn't always a cureall. Again sorry if I upset you, that wasn't what I was going for, we're all fighting this thing together.

Sugar9486
Regular Member


Date Joined Aug 2007
Total Posts : 31
   Posted 10/25/2007 4:43 PM (GMT -7)   
Oh I forgot to add, I had looked up Dr. Gregg myself on their website and never found him, I thought for a while that maybe it was just a bad dream and really they were going to help me, until I got a phone call from Patrice the office manager when I wanted my records expundged and I realized he really did exsist. :-P

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 10/25/2007 5:45 PM (GMT -7)   
Of course it's not a cure-all. If you've read some of my other posts, you'll see that they were unable to help me. But the entire team: Dr. Young, Dr. nahas, Dr. Tramuta and Dr. kaiser and at times Dr. Rosen (and I dealt with Silberstein a few times too) always kept trying again and again and again to find something that would help my headaches. I too have read complaints about Jefferson, but most of them have been from people that either don't understand how a big clinic works ("I had to wait so long for an appointment" or "They wouldn't give me strong narcotics when I asked for them") to people that just don't understand proper headache treatment (like why they're being asked to try topamax or imitrex before they're prescribed tramadol). Still, I feel terrible that you were treated that way and I'm glad you found relief in the end. I've extensively searched the Jefferson site and the rest of the internet for Dr. Gregg and haven't found anything. Hopefully he's gone.
DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Rozerem, Emsam
PRN: Haloperidol, Zyprexa, Lodine, Thorazine, Zofran, Oxycodone


Sugar9486
Regular Member


Date Joined Aug 2007
Total Posts : 31
   Posted 10/25/2007 7:33 PM (GMT -7)   

 

 

I hope he's gone too, and that no one ever has to deal with him again.. I was thinking about it and I think he was in training which I guess is what a resident is., but I'm not sure what his actual title was. He was pretty pathetic (I was totally turned off to him when he had to pump up the blood pressure cuff like 3 times to take my blood pressure) but hopefully he is gone, but like I said I could never find him on there anyways. They may have threw me at him because my doctors office was very insistant that I get an appointment very quickly because they honestly did feel horrible that there was nothing more they could do for me. In the end I ended up going back to them and they worked with me, actually the physicians assistant that I saw after I was hospitalized (From the headache that I complained to Dr. Gregg about) found the winning combination. I was having headaches 3-4 times a week, and now I'm down to once a month.

Yeah I've read a few complaints on here about the whole I had to wait so long (Although I feel that is sometimes as much torture as the headache, its the way it is) and the "they won't give me narcotics". That was totally not what I was after at all. I would much rather not take drugs period. I know that I have to, I'm the idiot who starts to feel better and quits taking everything.. yeah I'm finally realizing that that doesn't work and sometimes even makes it worse, but I don't like taking drugs at all. Thats what bothered me so much, that doctor accused me of taking tylenol more then once a day, it was more like once a month was a lot. I know I'm repeating myself, but that really upset me... not to mention pissed me off. The worst was on the paper he sent home with me he crossed off over the counter medication overuser, but yet left it on my chart. Thank God my doctor knew better and that didn't haunt me. In fact my doctor said really it doesn't matter if your over using OTCs anyways, your not getting rebounds and we're going to make them better before it destroys your liver. I was like um thanks but yeah I'm still not taking tylenol. Pretty much he's just a smart ass. Now I'm going to a new clinic and my records have been expundged so that helps, but I can't imagine what I would be going through without that.  Well good luck to all and I hope all of you TJHC patients are getting treated right.. and don't have Dr. Gregg :-P

 

Jenn


mistyblu
Regular Member


Date Joined Oct 2007
Total Posts : 22
   Posted 10/26/2007 9:55 PM (GMT -7)   
I am 27yrs old and have been dealing with this for a while. It started off with chest pain and then that feeling of something being stuck in my throat. I'm tired and feel like my head is in a cload, that spacey feeling. I don't have this symptoms all the time they come and go. I had this feeling in my throat all day long some days. Eating never had anything to do with it. It would come even on an empty stomach. I have had Drs. tell me it is acid relux. I seen a GI Dr. and he did a EGD with a bravo placement to check my bodys PH level. Like I already knew I didn't have acid reflux. I didn't think I had all the symptoms. I didn't have the burning feeling in my chest and the acid taste in my mouth. My Dr. sent me in to have an MRI done. To make sure everything was ok in that area. I seen a Neurologist to get the results and found out that I have Chiari Malformation Type 1. Only an MRI can tell f you have this. Not an X-ray or Ct scan Basically Chiari Malformation is where your brain is to big for your skull or your skull is miss shaped and it pushes you brain back. It causes the brain tonsils in the back of your head to be pushed out of the bottom of your skull. Causing a hernia. They call it herniated tonsils. It restrict the spinal fluid to your brain. It can cause alot of problems.

mistyblu
Regular Member


Date Joined Oct 2007
Total Posts : 22
   Posted 10/26/2007 9:56 PM (GMT -7)   
really bad headaches a the main symptom.

givenup
Regular Member


Date Joined Aug 2007
Total Posts : 94
   Posted 10/28/2007 7:30 PM (GMT -7)   

hi korbnep its ashley well im still in thomas jefferson. its sunday 28th. i have to say that this is the first day , also last night that my pain level was a 3 to 4 and has stayed like that so far. im still on lidocaine and now that give me dhe again only if i need it. on friday night i had a really bad night and finally i got a shot of toradol. guess who was on call for the weekend. it was dr nahas. she was the one that said i could have it only once. she came on duty at midnight. the house neuro would not give me anything. thank god she was there the whole weekend. dr young came in with her today sunday. my dr , dr ashkenaz, you know who i mean has started me on something brand new which they have had some great results with. it something new that they have done a study on. it has been around a long time, but for some reason it seems to help some people with headaches. i started it thursday the 25th. its called minocycline.its actually an antibiotic. for some reason it could help. i am taking 200 mlgs a day. plus they upped the lidocaine. i asked my doctor nahas if it helped everyone they tried it on and she said some yes, some no. when i see my doctor tomorrow monday 29th, i have to ask him of the peolple that it helped how long did it take to kick in. he said he wont let me out of here until i am down to a 0 pain level, then take me off all the drips,and put me on what ever they deceided to send me home with and keep me for 2 more days, like i already mentioned to you and see what happens. my mom told him that he better. my parents just came down from new jersey and stayed down here for 4 days. i was glad to see them. you should meet my mom. she never gives up. its the italian in her. ha-ha.  sometimes she gets my doctor annoyed, but she says too bad. i hope that i am on my way to an answer. thank you so much for keeping in touch. i hope you are feeling ok also. i will talk to you soon.

 

                                                                              ashley


givenup
Regular Member


Date Joined Aug 2007
Total Posts : 94
   Posted 10/28/2007 7:33 PM (GMT -7)   
by the way where do you live?






ashley

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 10/28/2007 8:36 PM (GMT -7)   
Ashley,
I'm trilled to hear that you're down to a 3-4! If they can just find one more thing you might be pain free soon :) I'm glad that you liked Dr. Nahas; she's a very caring doctor and will do everything she can for your welfare. Earlier this year I also tried minocycline. Although it did not help me, I've also heard that it has worked for many people (I just seem to be the exception to everything :P ) It's also nice to think that, even if the minocycline doesn't work, you still have a lot of options that are considered very effective (and you're down to a 3-4 so far!).
I go to school at the University of Pittsburgh but I travel back and forth between my apartment here and my parents' house in Montgomery County (Montgomeryville specifically) for medical treatment. In fact I'll be at Jefferson Tuesday afternoon for an appointment with Dr. Nahas. So I'll be right there if you need someone to talk to face-to-face or want me to pick something up for you :) Anyway, I hope very much that you continue to improve. Keep me updated.

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


Sugar9486
Regular Member


Date Joined Aug 2007
Total Posts : 31
   Posted 10/29/2007 8:16 AM (GMT -7)   
Ashley, it's soo exciting that your pain level is down that low! I'm really sorry if I scared you before, I'm so glad that they are able to help you a TJ and that they doctors you are seeing are very caring! When I had originally read your post my dumbness had kicked in and I really did not realize that you were actually at TJ. Obviously I did not have a great experience and as soon as I read your question I let my emotions get a hold of me.. which tends to happen a lot with my long headaches (I'm on day 8 of a pretty bad) So I really am sorry
 
Korbnep-- I'd be very interested to know who you see in Montgomeryville, I only live about a half hour from there.
 
Jenn
Diagnosis-- Chronic Severe Migraine with daily headache usually caused by tension
Medications-- Daily: Topamax 100mg & Welbutrin 100mg
                    PRN: D.H.E. 45 Injection or Migranol, Phenergan, Ultram, Fioricet 


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 10/29/2007 11:10 AM (GMT -7)   
Jenn,
I understand how upset I can get when the medical care I receive disappoints me so I definitely understand your previous reaction.

As I said, although I live in Pittsburgh, I receive all of my medical care in Philadelphia or its suburbs (with the exception of a psychologist here). I gone to Philly for my primary migraine care for about two years now at JHC. Before that, I was treated by Dr. James Burke, a neurologist with Abington Neurological Associates (he's received many of the "best in CIty" awards that are given out; he's an amazing guy but he doesn't treat only headache patients so he referred me to JHC). I saw him for about 3 years. I've also seen Dr. Shimon Waldfogel, a psychiatrist at Abington Memorial Hospital (not recommended, though that may be just because I in general do not like psychiatrists...all meds, no talk--though he did prescribe me synthesized THC which was interesting). Another psychiatrist that I've seen more recently is Dr. Gregory Tramuta at the JHC....he's okay. I've been seen multiple times by multiple doctors in the Abington Hospital sleep center. I also saw a great social worker (best talk therapy I've ever had) named Jean Bird in Abington. Umm, that's all I can think of right now, though I'm sure there are others. If you ever need a recommendation for anything medical in the area there's a good chance that I can give you one :) (also my parents are medical professionals so they know a ton of doctors).

Take care, both of you,

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

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