Jefferson Headache Center

rate your feedback
0
very helpful - 0.0%
0
somewhat helpful - 0.0%
0
not good at all - 0.0%
0
bad experience - 0.0%

 
New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

bibi04
New Member


Date Joined Mar 2016
Total Posts : 6
   Posted 3/14/2016 7:35 PM (GMT -7)   
Looking for feedback good/bad about JHC...have first appt on May 6 2016....
Thanks!

eaty93
New Member


Date Joined Nov 2013
Total Posts : 7
   Posted 3/18/2016 8:29 PM (GMT -7)   
Hey,

I first went to JHC July of 2014, and I've been a patient since. I'm technically a patient of Dr. Young, but I actually see one of the Nurse Practitioners there now.

I personally highly recommend JHC to anyone with headache/migraine issues, at least as a place to try. I've had an amazing experience with them so for, everyone there has been really friendly and knows what they are talking about. And honestly, it really helped to go see a doctor who specializes in headaches and migraines. I can't say that enough.

I honestly was really nervous about going, and pretty skeptical about it. I didn't think it would help at all, and it would be a waste of time and money. And its been worth it, and they are really good, at least they have been in my experience.

If you have any questions, please let me know, I would be willing to chat about my experiences with them.

bibi04
New Member


Date Joined Mar 2016
Total Posts : 6
   Posted 3/21/2016 8:11 PM (GMT -7)   
Hi,

Thank you so much for responding :)

My appointment has been postponed to June 6. I'll be seeing Dr. Spare, she was just the one available. JHC had a couple of cancellations before June but I was not able to make it work since I am traveling from Northern Virginia to Philadelphia.

I have been under the care of a Neurologist practice that specializes in Headaches since 2005, suffering from headaches since my teens....last three years on Botox, which at first helped with daily headaches but still experienced about a Migraine a week. In recent months, daily headaches are back, Migraine still easily triggered by smells, weather, sounds, poor sleep, etc......I think my body is no longer benefiting from the Botox... :(

Like you, both skeptical and scared... but hoping for an intervention that can help me break the cycle.

I am currently out of town because of my son's Spring Break....but would really appreciate the opportunity to talk with you at some point before my June appt. Please let me know when it would be convenient for you....

Thanks again :)

Best,
Belinda

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7179
   Posted 3/22/2016 11:24 AM (GMT -7)   
I go to JHC been there for 6mos.

Went into the hospital to break the pain cycle and it worked. I good for about a month.

Then the pain came back worse, this however is in line with my diagnosis's. I see J. Maramura. Nice Doc. Nurse Practioner Elise.

I don't find them as warm as I would like, though the are nice. I am use to smaller practices. My previous Neuro passed away last year.
So I must get use to the large practice environment, try not to feel like a number and know that the care team does their best for us.

I am currently adjusting my medication and am seeing a decline in severity.

If you are in dire pain, you can keep calling to see if there have been cancellation. Terry or Theresa, I think her name is, is a little abrupt, but she will look for you to get an earlier appt.

I wish you best for your pain journey
Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

bibi04
New Member


Date Joined Mar 2016
Total Posts : 6
   Posted 3/24/2016 9:03 PM (GMT -7)   
Thank you so much for your reply....I have been under the care of a Neurologist practice that specializes in Headaches for over 10 years. Three years ago I qualified for Botox and that helped with the daily headaches...no to much with the Migraines. Last 9 months, I've experienced a decline, don't think the Botox is helping any longer....If you don't mind sharing...I'm curious about the medications they use to help you? are they Triptans? I have been prescribed most of them through the years.

My appointment got moved to June 6 with Dr. Spare....I will keep your suggestion in mind if I need to go sooner...my biggest problem is that I'm traveling from Northern Virginia to Philadelphia so I have to consider work schedule, staying in a hotel etc....for now June it's okay...

Again, thanks for sharing your experience...

Belinda

eaty93
New Member


Date Joined Nov 2013
Total Posts : 7
   Posted 3/26/2016 10:19 PM (GMT -7)   
I understand the travel, and having to find an appointment that fits your schedule. I travel from upstate NY, its about a 5 hour drive each way for me, and its exhausting. I've tried 3 hotels in the area, found one that I like so far, though its outside the city, by the airport actually. But it has a full kitchen, which is nice. But there are some nice things to do in Philadelphia.

I personally was hospitalized to try and break my migraine cycle, and it was what changed my life. I was given DHE to break the cycle, and that is actually also the medication I use during a bad migraine. Compazine is the middle ground as needed medication I use for like middle migraine attacks. Both were medications I had never heard of before, I had always heard of Imitrex for migraine attacks, and I had assumed if I had migraines I would get that. Nope I get DHE and Compazine, and I was give both in the hospital and they both work wonders for me. I was in the hospital for 2 and half days, they told me to expect 5 days.

As for preventive medications, I'm on Topamax. I was on Nortriptyline right out of the hospital, but it was not working for me. So I was switched to Topamax, and other that two break throughs where we just upped my dose, I've been doing well with it. I'm also on a couple supplements to help as well. I now just go to JHC about every 6 months just to check in and make sure I continue to do well, though I am just told I can just push my appointment farther away if I continue to do well. I'm actually scheduled to go in April. I have a back up plan in place incase I need it, a second medication for my Primary doctor where I live to add that JHC suggested, I have it written down, with their suggested dose for me.

I found they are very open to working with my local doctor, because of my distance. At least my Nurse Practitioner is, which is nice. Sometimes because the place is big, there are a lot of people. It can feel like you are lost in the system, but at the same time, they are doing the best for you. I've been getting really good care there, they have been doing a good job of working with my local doctor to help me. My only issue with them so far has been a little bit of issues with getting in contact when needing them, and I only have like twice so it hasn't been a big deal. But it can be a bit of a pain. You call and leave a message and they call back. So don't expect a answer right away. That has been my only issue with them all along.

One thing I found was that the first about 6 months after I started, I was better but not perfect. I had less migraines (I was having daily migraines, and then I wasn't, but still having them weekly) but it was very up and down till they found a good medication for me. But after time, and things settling, it got a lot better. Just keep hanging in there, and know you aren't alone in this.

bibi04
New Member


Date Joined Mar 2016
Total Posts : 6
   Posted 3/27/2016 11:11 AM (GMT -7)   
Thanks for the detailed info....reading your note brought tears to my eyes...maybe they can really help me break this exhausting cycle..
I'm encouraged.... Looking forward to my visit in June :-)

Best,
Belinda

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7179
   Posted 3/29/2016 10:08 AM (GMT -7)   
I am on the following meds.

I have been dealing with chronic daily migraines since 2006. Theory is I have slow process nerve damage in the back of my head from child abuse.

Topamax 250mg
Neurotin 600mg
Mexitil 300mg (my side effect is shaky hands, random muscle spasms; the spasms are small and tolerable)
Lisinoprol 10mg


indomethacin 50mg for break through pain
Compazine 10mg for neausea

If I have a cluster headache along the TN pain, I have Tylenol 3 to take. these is rare.

I have no idea if these are Triptans, sorry.

Hope this helps.
Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 4/12/2016 7:25 PM (GMT -7)   
Hi there!

First, I live in Northern VA (Arlington). If you’re in the area, I can give you a good recommendation for a neurologist located in DC. I’ve been seeing him for almost 10 years. (I woke up on 9/22/06 with a headache that is still here today).

I’ve been to JHC as well as Diamond in Chicago. (I’ve also seen doctors at Hopkins, Mayo and Georgetown). I am not currently a patient at JHC, but I respect their programs. I saw Dr. Nahas on and off for several years. I tried their IV lidocaine protocol as well as was the 6th patient to try their ketamine treatment, which I have tried twice now. I think they have some good ideas and do good work, it just wasn’t a good fit for me.
If you’re looking for a more inpatient treatment option, I would call Diamond. They also have a long waitlist for new patient appointments, but they have an entire floor for treatments. They also have more treatment options that I am aware of, but it’s been awhile since I’ve been to either place.
The travel was hard for all of them. I would see them once every 1-3 months and then I would see my local neurologist to help with maintenance.

If you have any questions, I’ll do my best to answer them.

Good luck to you!
Michelle

bibi04
New Member


Date Joined Mar 2016
Total Posts : 6
   Posted 4/15/2016 7:41 PM (GMT -7)   
Hi Michelle...Thank you for your response....very helpful since you have been to different places. I have never heard of Diamond but will look into it. I live in Reston, VA, being in the DC area for 36 years. I have suffered from headaches since puberty...and I'm now 53 :(

The Migraines started about 10 years ago....after my son was born, Botox (last three years) helped with the daily headaches until about 6 months ago. I have tried most Triptans and they only give relief for hours. Looking for some relieve...my neurologist in Tysons "Neurology & Headache Center" will not offer any other treatments (ketamine, lidocaine, etc) only heard about these meds by reading the blogs, etc.

Will definitely look into Diamond....coincidentally I'm going to Chicago because of work at the end of April....but it sounds like getting an appt there is tough...but you never know, will research it and contact them o Monday...Thanks for all the good info...will keep you posted!

Regards,
Belinda

LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 4/15/2016 8:02 PM (GMT -7)   
My neurologist actually does out-patient lidocaine at an infusion center in friendship heights. I know that is out of the way, but the option is available in the area. If you ever need to talk or run ideas by someone, just drop me a line. Also, I would be glad to give you the name of my neurologist.

Good luck with everything!

bibi04
New Member


Date Joined Mar 2016
Total Posts : 6
   Posted 4/16/2016 7:01 PM (GMT -7)   
I looked into Diamond and plan to call first thing Monday morning and see what the wait is for a first appt. I'll be in Chicago April 24th through 27...you never know I could get lucky.

I love to have your doctor's name...you can use my email bmassa@hotmail .com if you rather communicate his information that way. My question to you realizing you may not have an answer for this...would it make sense to try those meds with your doctor before gng to one of these places???... it would definitely save the travel time....

Thanks again and enjoy the beautiful weekend!

Belinda
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 17, 2017 7:01 AM (GMT -7)
There are a total of 2,906,404 posts in 318,953 threads.
View Active Threads


Who's Online
This forum has 158294 registered members. Please welcome our newest member, Archer16.
285 Guest(s), 3 Registered Member(s) are currently online.  Details
randrball1, Mergirl, Stormy77