|
||
|
Title: Anyone Been To the Thomas Jefferson HA CL Phila? Post by M8895 on Mar 10th, 2004, 10:14am I am a Chronic Migraine & Chronic Cluster Sufferer and had and am being taking seriously. My first stay was a week in the Reading hospital in Pennsylvania under the care of Dr. Gary Kolva who is excellent. He realized that he could not stop my cycle after trying for a week and sent me to the Thomas Jefferson HA Clinic In Philadelphia. I was under the care of Steven D Silberstein and Dr. Joshua Khoury. I did have a three-week stay there too as you can imagine all doctors are frustrated and SO AM I. They are serious about finding a permanent solution and do understand Migraines and CH. I can’t speak Highly enough about both hospitals and the doctors. Both doctors could not stop my headache cycle. I am now going back to Phili as an outpatient to have Botox Inj. At present my meds are Topomax 100 mg daily, Clonazepam 1 mg 6 daily, Zyprexa 5mg 1 at bed time, Prochlorpher 10 mg INJ every 6 hrs as needed for HA. I am still getting Clusters and Migraines daily. The meds are not working. Wish me luck with the Botox. With both stays in the hospital they tried every med possible. DHE did help but only with the Migraine. At least it did help with the Migraine. I’m going to ask for that as a drug to take home at my next appt tomorrow. I did have an E\R visit last week. Toradol seems to be the Magic drug for me. It kills both the Cluster and the Migraine. I wish that I could have it in pill form and at home. It’s too bad that the drug is so bad for your body. I want every one of you to know that these doctors are out there and that there is help! Don’t give up! Wish me luck with the Botox Injections. Has anyone had any luck with the Botox? Connie |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by no-one on Mar 10th, 2004, 2:11pm Hi Connie, I also go to Jeff, I see Dr. Young. I have CDH, Clusters and migraines. I have been going there for about 9 months now. We haven't been able to find the magic pill or pills that will work yet, but at least he hasn't given up on me yet. I use DHE at home, they work great on my migraines and help some with the clusters it will bring the pain level down some, but won't make them go away. The only problem with DHE is that you can only use it 2 times a day and only 2 times a week. I hope that botox works. Please let me know if it helps. |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by M8895 on Mar 10th, 2004, 2:45pm It sounds like DHE effects you like it does me. I didn't know how the dosage worked either so thank you for the information. I'm glad that it works for the pain level. will post here again and let you know how the Botox works. I don't expect that they will give up on you... I really feel comfortable there. Are you taking Topamax? Connie |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by no-one on Mar 10th, 2004, 4:40pm HI, NO, I did try it but had a very strange reaction to it, my hands cruled in, he told me he had only seen it one other time, I WILL MEVER TRY IT AGAIN. I hope it works for you. I also tried verapimill, but because my bp is so low to start with I kept passing out. Right now I am on neurontin again at a higher dose then I tried years ago I am up to 2,700 mg right now. I've been on it for 2 1/2 months, I really don't think its working though, since I still have daily clusters. I also take 150 mg of efferxor and 9 mg of melatonin. Right now I would be happy if I could sleep though the night. When are you going to Jeff for botox? Becky |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by Lizzie2 on Mar 10th, 2004, 8:42pm I have to say this...Dr. Young pissed me off so much that I left Jefferson, and I'm now going to University of Medicine and Dentistry of New Jersey's University Headache Center. I went to Jefferson for just about 3 years, but I was under the care of Dr. Charles Siow. Last fall, he moved to Singapore, and I got switched to Dr. Young. He has made my life an absolute living hell. So I left. I won't get into all the details except that I never felt as hopeless and depressed about my headache situation as I did with him. I'm not usually so open about my experiences there, but I think I am scarred and kinda bitter about it too!!!! I'm sure it is a great place for some people...I've been hospitalized 6 times with them...and I've had it. If Dr. Siow was still there, things would be fine for me...but I canNOT work with Dr. Young. So I'm done with them for now. Ahhh sorry to vent and state it all so bluntly. I just have a lot of built up anger about them! Lizzie :) |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by M8895 on Mar 10th, 2004, 9:50pm Hi Becky, I’m sorry to hear about your response to Topomax. I took it before but am back on it. I am also getting daily both MIG and CH but am hoping that after they increase the dose higher and slowly that they may be relieved. I had the same reaction to verapimill! I mean scary low… Neurontin turned me into a zombie so, I’m curious about your response to it. Your not sleeping… I could have slept through a freight train. Isn’t it strange how we all react so differently. I have a follow up appt tomorrow and will find out about the Botox tomorrow. I’ll keep you posted on this post. Okay? Hang in there Becky! It’s nice to meet you.. |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by M8895 on Mar 10th, 2004, 9:55pm Hi Lizzie, PLEASE share your experience with Dr Young. And Lizzie is this you? I think that we have spoken before. I was asking you about DHE… Well now I know what the heck it is. Would you be willing to go into more detail with your experience with Dr Young? Dr Young is my Doc and he has pissed me off once. I do find that he is difficult to get a hold of which is no diff from any other doc but please tell me what made you so desperate that you went to another hospital in Jersey…. How are you Lizzie? |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by Lizzie2 on Mar 10th, 2004, 10:04pm Hey there...yeah it's me. My SN on here used to be chronic_chic. Anyways....I've had it really rough with Dr. Young...and I just never ever want to see him again. Right from the start back in November, I had started getting cluster headaches, and I described to him what was going on, and he just blew it off saying, "there is no need to treat or abort those headaches." I was like...WTF?!?!?! Sooooooooo angry and upset...I cried for 3 days because I had been going through a living hell with them. He put me back on neurontin even though I told him that I had had horrible side effects with it before. He told me it was for Restless Leg Syndrome, which I don't have! grrr..... So then he decides I'm going into the hospital again in December to January. So I emailed him a question about which date is best, and I said that I have no phone during their office hours for them to contact me at. He wrote back saying he wasn't allowed to answer questions over email and to call the office. I was like WHAT part of I DO NOT have access to a phone don't you GET a-hole?! So anyways...it continues....the hospital stay was alright...had its moments that's for sure! I temporarily got a tiny bit better...but mostly no. So then 2 weeks later I go back for the check-up appt, and just kindly I say to him, "how are you?" and he responds with, "Better than you!" I was like...nice...nice bedside manner...way to make me feel like crap right from the start! So then he tells me that he's putting me on thorazine every night...well that drug...I'd have dropped out of school if I had listened to that, so I didn't listen. Then came the verapamil crisis. First I wound up in the ER on 960mg a day because my blood pressure was too low. Then it happened again and I was throwing up so he lowered it to 720mg. Then 2 weeks after that fiasco, I woke up with a blood pressure of 60/40, heart rate in the 40s and throwing up nonstop. Know what his response was??? Since it is helping the clusters a little bit, I should stay on that dose and just "deal with the side effects." That was it...the last straw. I'm tired of being treated like I am a moron who knows nothing about my own condition. I'm tired of him blowing me off. I'm tired of being told to do things which aren't healthy for me. I'm just tired of all the shit! So...I don't go there anymore. However, tomorrow I have to go there because the office manager is writing me a recommendation for my nursing scholarship because I helped out in their research department over the summer. Should be interesting...I hope I don't run into Dr. Young. I'm sorry if I'm throwing a really negative light on all this. I seriously sometimes think I need to just let it all out or I will explode. I often feel like it is MY fault that things got so screwed up, but I got along fine with my previous doc and with my new one....so??? I don't know. It just makes me feel really awful and upset when I think about it. That's why I'm venting and ranting so much about it here. I'm sorry!!!!! Lizzie :) |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by M8895 on Mar 10th, 2004, 10:27pm Lil Liz I’m sorry that he dismissed your CH so quickly. He has not done that to me. He is difficult to contact but has tried to call me that is the part that I was irritated with. I couldn’t reach him. I also went through the rough spots with verapamil. My BP was VERY low. I found Thorazine to be helpful for relaxing and it also helped my nausea but we all react differently. I am trying not to sound condescending but I applaud you for going to nursing school through all of this lil liz! This is difficult stuff to deal with to say the very least. I am going to stay with Dr young and see what pans out. I hope to get relief from the Botox. I have heard that some folks do benefit from it. What time are you going there tomorrow? I’m going tomorrow too! My appt is at 10:00 and I would be honored to meet you. I am here if you want to vent and please don’t apologize lil liz. (hope you don’t mind me giving you a nick name) I am here… Period. Thank you so much for sharing. My experience has been a good one so far. Please wish me vibes and a good experience with Dr. Young. Connie |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by Lizzie2 on Mar 10th, 2004, 11:53pm Hey...I'm glad it's going good so far. I do wish you the best of luck. I probably won't be there till the afternoon sometime tomorrow...have some things I have to get done first. I am getting a tetanus shot at 10am here at my primary care doc. Sorry I haven't written more...thinking about all this has just made me feel really upset again...and like it is all my fault that it turned into the mess that it did. Take care, Lizzie |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by M8895 on Mar 11th, 2004, 6:21am Lizzie, My appt is at 10:00 am so I am sorry that I will miss you and please stop going down the memory spiral. You WILL have better days ahead of you! Sending a ton of Vibes to you! Connie |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by Lizzie2 on Mar 11th, 2004, 8:05am Hiya Connie :) Good luck at the appointment!! If by some chance I make it down there before noon, maybe I will see you! I don't know if it'll happen though! I know I usually sit for 2 hours waiting for my appointments there. If you get this message...I'll be wearing jeans and a pinstriped shirt with a leather jacket, and my hair (today!) will be straight and it is blonde highlighted. I'll be the one who looks like I know everyone because I used to work there last summer. ;) Anyhow...really, best of luck discussing the botox and all! I had it 3 times. The first time it did me some good, but after the second time I got into a nasty figure skating accident and it never had a chance to work. The third time..nada for me. Sorry I was being so negative and depressed yesterday about it all! Really...when I start thinking about it, it makes me depressed. But on the whole, it was a learning experience. Isn't everything? :) There are some people who work there that I care a whole lot about! I honestly thought it was a really great place until I had the problems that I had, but I'll just chalk it up to bad chemistry and walk away from analyzing and thinking about it! It's just not worth it... Good luck!!! Lizzie :) |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by Karla on Mar 11th, 2004, 2:03pm I go to a local ha clinic. I was on topamax at 200mg by my reg neuro but the ha clinic dr upped it to 600mg because I was having no luck at 200mg. 600mg didn't help either. I do take botox injections. They help my migraines but do not touch my clusters. I have heard about zyprexa also and your dose sounds a little low for that medicine as well. It suprises me your dr has you on so many different meds before running the full course for the one medicine. Good luck and hope you find some relief soon. |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by M8895 on Mar 11th, 2004, 7:35pm My visit to the clinic today was a check up. I didn't get Botox yet. Dr Young did increased my dosage of topamax. Gave me DHE 1mg IM PRN 1 hr as needed Max 2 shots per day Max 2 days per week. Thorazine 24 mg tablets for severe CH. It did help while I was in the hospital. I can repeat in 1hour max 5 per day 2 das per week. He also gave me Toradol IM only to be used when the CH attack is so serious that an E\R trip is needed which does happen a few times a month. I do hear you loud and clear. Have you heard of Botox helping anyone with CH? I'm Praying on my hands and knees! Are you taking a med that is bringing you releif now? |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by Lizzie2 on Mar 11th, 2004, 7:49pm I was there today. The trip wasn't too bad. Dr. Young did say hello and remembered me... I spent most of my time in with the office manager who was writing me a lovely letter of recommendation! I told him that I'm taking a break for now from the headache center. He said he wasn't going to say anything. I just said I was having problems and I needed to take some time to let all the bad feelings get out. I had to fight to get my toradol. Wound up getting 6 vials/month. I can't use it now though because I'm on coumadin. I also have DHE injections, but I can't use them now because I'm on methergine. I'll be off my methergine in 9 days and then I'm going to be on amerge for 1-2 weeks. Are you sure it is thorazine 24 mg? Mine are 25 mgs. I have to take 50 before it touches my headaches though, and even then it doesn't usually stop them...it just knocks me out for 12-14 hours! Right now I'm on Skelaxin as an abortive for the time being. Ahhhh it sure is a long road sometimes! I might go back to Jefferson once I'm a student there this summer, but my mom would rather me stay at the new place because they have a lot of plans in place. I just have to be patient and wait for it all to help! We'll see! Take care! Lizzie :) |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by M8895 on Mar 11th, 2004, 8:01pm Hi Lil Liz, Yes, you are right it is 25 that was a typo. I'm glad that you are feeling better about Jefferson and that you got what you needed a definite step in the right direction! An even better step was mending the fence so to speak. Dr. Young is really trying to help me. He did spend quite a bit of time with me going over different preventatives and explained side effects and so on. I really feel as if we are on the right road. If this one doesn't work I know after speaking with him that there are other roads to take and that he will hold my hand through while going through them. I sure wish that I could have met you. I was there from 10:00am until around 2pm. I am blond and was the one wearing the sun glasses... lol Connie |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by Lizzie2 on Mar 12th, 2004, 8:18am You were there till 2? I got there around 1:30 or 1:45 or so. Then I was there for a bit, then came back at 2:45 and then left again and went back at around 4. I was there a whole heck of a lot yesterday!! If Dr. Young had been like that with me, I probably wouldn't have left. Most of the time he blew off my questions. At my last appointment, Dr. Silberstein came in and told him he needed him right now. Know what they wound up doing as I was rushed out the door? Ordered lunch! grrr.... Well that time, I caught that he forgot to sign 2 of my prescriptions. So he did, and that was fine. It was all just a very frustrating experience. I knew I would be fine with my old doc there. He helped me every step of the way including listening when I was in tears over how things were going...or not going! But once I switched over to Dr. Young, I just felt like he really blew me off a lot. Then by telling me to stay on a dose of verapamil that was literally killing me, I got rather upset! I don't know. I may go back there at some point, but it is hard because I just really felt like things were a complete mess by the time I left there. I'll just have to see! Glad that it went well though! Lizzie :) |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by M8895 on Mar 12th, 2004, 7:15pm Were you there with a freind or were you by your self? There were only a few people in the waiting room lil liz. Please forgive me for being so nosey! I just wanted to meet you. We've told one another our stories and all ya know? Con |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by Lizzie2 on Mar 12th, 2004, 7:20pm Hey Connie, I was there by myself. Were you there with anyone? There were two people setting up an appointment at the front desk when I came in. Miriam said to them...your next appointment won't be so long. Something like that! Anyhow...I came alone and I was waiting for Steve Swider. It was a fun day :) Lizzie :) |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by M8895 on Mar 12th, 2004, 10:26pm Sounds like we missed each other... |
||
|
Title: Re: Anyone Been To the Thomas Jefferson HA CL Phil Post by Lizzie2 on Mar 12th, 2004, 10:53pm Awww another time for sure! I'm moving to Philly in May because I start nursing school at Jefferson. Some people become obsessed with Penn State (where I currently go to school...), I became obsessed with Jefferson! I will be patient, employee, volunteer, and student.. haha |
||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |