Got an appt at Jeff - suggestions?

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kandjmomy
Regular Member


Date Joined Mar 2009
Total Posts : 40
   Posted 4/8/2009 9:52 AM (GMT -6)   
After a constant, horrible headache for 5 weeks, I decided to call Jefferson Headache Clinic and was surprised to get an appt for next week! I'm so happy I got in, but I'm not quite sure what to expect. My doc will be Silberstein. Any advice/suggestions/experiences you would like to share?

Also, they said to bring all records with you but is it necessary? I can bring my reports and films from my MRI, but my neuro is not a fan of Silberstein's, and I'm hesitant to request records from him for it. I've only been seeing him for the past few weeks, and I can report on my visits, meds, etc. well. What do you think?

Thanks!

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 4/9/2009 2:59 PM (GMT -6)   
Silberstein doesn't have the best reputation as a clinician but there are few people in the world who know headache disorders better than he does. He's a consultant to several dozen pharmaceutical companies not to mention the President of the International Headache Society. He's not my favorite doctor at Jeff (he's known to have a bit of an ego, as you might expect) but you can hardly see anyone better than him. I think a few other Jeff doctors are better with patient relationships but he's THE expert.

As for records, YES, bring everything you can get your hands on. The center is HUGE and runs like a machine as it must to help so many people. Without the documents they asked you to bring they may not see you. Again, don't look at this as unfeeling but simply the way things have to be done to manage such a huge volume of patients.

You are indeed incredibly lucky to get an appointment with an attending physician there on such short notice. I imagine there was a cancellation. Let me give you an idea of what to expect however.

1) Bring something to do. Most new patients are in the office for 4-6 hours or more.

2) They'll have you fill out a several hundred question questionnaire about your headaches to gather initial standardized information. It'll take a long time to complete but you'll probably still have time to spare.

3) You'll first be seen by a psychologist who specializes in headache disorders. This is standard protocol, all new patients do it. So know that it's nothing personal. It IS worth the visit, though it'll be short. Again, it helps them help you better.

4) You will likely see a nurse practitioner next who will take your vitals and ask you a set of standardized questions (I've been going there monthly for 3 years and it hasn't changed much) like do you experience heart palpitations, congestion, constipation, nausea, numbness/tingling, problems sleeping, etc. You'll be asked to described the severity of your pain, its nature (stabbing, throbbing, pressure, pulsating, etc), it's frequency and any side effects. Then back to the waiting room.

5) You'll meet with your neurologist who will, as all doctors do with new patients, spend most of the appointment in survey mode. He'll be trying to get a feel for your specific problem and diagnose it. Most likely any drug regiment that you're on will be changed and tests may be ordered. Depending on the prognosis you may be asked to come in again in a week or in 6 months.

I know that sounds intimidating but I want you to be prepared--it's easier that way at least. No one enjoys their first visit to the center but it's a necessary evil. They have the resources there to treat your headaches with the highest possible rate of success. If you are able to remain patient and understanding concerning the wait and the red tape I doubt you'll regret going there.

Oh, also, there's a fair chance that you'll only see Silberstein for your first visit. Depending on their evaluation you may be assigned to anyone between a nurse practitioner and an attending physician. Don't worry if you end up seeing a nurse or a fellow--most of them are excellent. Personally, I very much recommend Rachel Seligman if you're seeing a nurse and Dr. Stephanie Nahas or Dr. William Young if you're seeing an attending. They're my three favorite.

Best of luck and please respond if you have any other questions. I'll set up email notifications for this thread.

Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


kandjmomy
Regular Member


Date Joined Mar 2009
Total Posts : 40
   Posted 4/9/2009 5:52 PM (GMT -6)   
Thanks so much, Ben. That's great information and it helps me know what to expect. I think I got into see Silberstein because my step-mother put in a call (she knows him), so I'm definitely lucky. However, I know his reputation and don't expect anyone warm and fuzzy. I just need a place with the knowledge to treat this difficult headache.

I heard they give an MMPI - I'm a psychologist myself so I know the test well. It's a bit silly for me to take it and spend the additional money on it, since I know what my profile will be, but I'll do it anyway if it's part of their protocol. I know I've been depressed because of the pain, so I think it's a good idea to see someone.

Do they come up with a treatment plan right away? I'm hoping that I can get on a different regimen of meds the sooner the better since what I'm on isn't working. I'm also wondering the likelihood of an inpatient stay at any point. I have kids and need to plan in advance if this occurs.
Thanks again!
Amanda

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 4/10/2009 11:46 AM (GMT -6)   
Yes, hospitalization is indeed part of their protocol but they typically don't plan one until they've tried some less aggressive treatments. Though it depends on your history and diagnosis. And you will have several weeks to plan if you do have one.

A somewhat less time-consuming treatment is their bodine infusion. You are sent to the bodine infusion unit (which is also where they do chemo) and asked to arrive around 8 AM. They set up an IV and administer IV medications (typically you'll get a cocktail of fluids, diphenhydramine, a strong anti-inflammatory, DHE, and an antiemetic to combat te commonly induced nausea--from my experience if you have bad nausea, ask for Zofran). It's an outpatient treatment. You'll be put in a room with comfortable reclining chairs, sometimes with other patients who are receiving the same treatment. The whole process is 4 or 5 hours I think. They employ this treatment quite often and it's a nice low-stress alternative to an inpatient visit (those typically last from 5 days to more than two weeks--I've even checked myself out AMA once or twice because I couldn't stand the length but there's more to that story).

Please let me know if you have any additional questions and certainly let me know when you've had your visit.

You can contact me directly at (my user name here) AT gmail dot com [I write it this way to avoid spam].

Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Methylphenidate, Clonazepam, Wellbutrin XL, Namenda, Oxycontin, Oxycodone, Magnesium sup.
PRN: Ketamine nasal spray, Celebrex, Migranal, Haloperidol, Zyprexa, Lodine, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Toradol, Reglan, Ambien CR, Provigil, and all triptans


kandjmomy
Regular Member


Date Joined Mar 2009
Total Posts : 40
   Posted 4/10/2009 2:32 PM (GMT -6)   
Hey Ben,
I've actually received that IV cocktail when I was first hospitalized for my headache and it didn't work. It also made me very nauseous and I generally felt horrible (which I suspect was the DHE because I've had everything else before). Are there any other infusions that they do on that unit?

How is your headache now? Have they helped you at Jeff?

Thanks so much for the info - it helps alleviate my anxiety to know what I'm in store for.
Amanda

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2023
   Posted 4/10/2009 3:21 PM (GMT -6)   

What is the bodine infusion? What does it do?

I have constant temporal headaches from a tmj disorder. Started in 2000.

Suzane


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 4/13/2009 11:12 AM (GMT -6)   
Hi again Amanda,

I can very much sympathize concerning the reaction to that cocktail. I don't want to scare you (I know, great way to start a sentence...) but the first time that I went in for a bodine infusion I was utterly miserable--I was sedated from the benedryl and some of the other meds plus I kept having to get up and use the bathroom because of either the IV fluids or to dry heave from the DHE or voltaren. The typical protocol calls for 3 days of infusion--I don't remember how or if they're spaced out. After number 1 I initially refused to do it again.

But let me qualify that account. First, around that time I was feeling extremely nauseous nearly all of the time and I felt worse during the treatment. But, of course it's natural that I would feel somewhat worse--they do give you an antiemetic for a reason. That leads me to the second point, which is why I recommend the treatment even after my bad start. The fact is, I really didn't know what to expect, what my medication options were nor did I really know the differences between the different antiemetics and the different antinflammatory meds that they can use. Because I was so reluctant to go back I ended up getting a really good explanation of everything from my neurologist (and I've been administered all of the drugs that they use there many times now).

So here's what I think you ought to know: Because the bodine infusion center is not part of the headache center the staff there get very explicit orders that they follow. There are several 'standardized' cocktails that are frequently used and they mostly just set up the IVs. However, the headache center is very good at trying to make sure that the same nurses that work with their patients in other parts of the hospital end up fairly experiences with their treatments. In practical terms this means that, should you have any problems or requests, they'll likely be able to be helpful.

With that in mind, if you do try this treatment it's very important to review with your neurologist exactly what medications he (or she more generally) has ordered for your infusions. DHE is typically a constant (though I believe they do have other options like [possibly, it's been a long time] triptans or maybe even fioricet) but they pick from many anti-inflammatories, antiemetics and additional medications. For example, I think that the first that that I went in I had an order for IV DHE, Voltaren and Benedryl and oral Compazine for nausea. I think I was offered Phenergan later when I remained ill. However, at the physician's discretion (with your input) you can be prescribed anti-inflammatory meds from voltaren, ketorolac, toradol and other NSAIDs to steroids like dexomethasone. Benedryl is mostly use as a sedative and to counteract some of the side effects of the other meds but I think that stronger anxiolytics are available like klonapin or ativan. I think that Compazine and Reglan are the most commonly use antiemetics in the cocktail but you can also receive phenergan (which helps many people and can even relieve head pain) or zofran (which is in my opinion, and nearly factually, the most effective at combating nausea--I take it to this day and it's the go to antiemetic for chemotherapy patients...it works like magic).

The main point that I'm trying to get across is that there are many different combinations that they use in these infusions. So the most important part is talking to your doctor about what you have experiences, what you want, and most importantly what medications will be approved for use for you to potentially choose from as needed during the treatment. Make sure that you have your pick of antiemetics and discuss the choice of anti-inflammatory drugs. As for poor tolerance for DHE, I feel you there. Though it can sometimes quell a roaring migraine attack it always takes a hard toll on my body, leaving me exhausted, sore and uncomfortable all over and many times quite nauseous. Even the nasal spray can do a number on me and I have no trouble handling high doses of ketamine. But you should know that JHC puts a lot of stock in DHE as a treatment option. I didn't favorable respond to it in bodine infusion, in at-home administration and in my many hospitalizations yet they still wanted me to give it another shot in my third planned hospitalization this last summer. This isn't because they're thick or that they don't listen--DHE is just one of the most widely effective drugs in their arsenal and they want to try it under a variety of circumstances to give it every opportunity to help you. I mention this because, when you start going to the headache center, you'll notice a fairly clear pattern in that they "stick to their guns". They handle a massive patient load which familiarizes them with the most effective techniques but also leads to the near necessity that they frequently apply their tried and true methods because they are trying to hope the most patients that they can. And they do a fine job of it, realy. Their success rate is fantastic. But, as with all things, there is always a group of outlying cases that end up responding quite differently to their treatments. Because their standard ladder of treatments is so successful they justifiably use it to treat even these patients because it's proven to be the best hope over time. But there will always be atypical patients.

So you'll likely find that Jefferson will want to start your treatment in a fairly standardized way and they'll probably want to retry some treatments that you may have tried with other doctors, attempting to stick to their proven methods. So, this is a long winded way to say that they'll probably want you to try DHE even if it has not helped you in the past. This does NOT mean that they won't take your input into consideration. But they want to help you so they'll want to try doing things the way they've fared well with. So this might mean a tough day or two of bodine infusions (or it might help, you've got to remain open to that possibility) but if it doesn't help then they'll cross it off their "checklist" and try one of the many many many other good treatments that they have available. Even though every doctor there is different in their way of interacting with patients none of them will intentionally leave you out of the loop. But it's important that you're proactive about staying in it so that you do have control of the situations that you'll end up in--even if that simply means having an extra medication available at your request during bodine infusions.


Finally, regarding my own case...I'll keep this short. I have had New Daily Persistent Headache that exhibits classical migraine symptoms during particularly strong attacks. This means that I have severe head pain every minute of every day for the last six years and three months now (give or take a day). Like many patients with NDPH my headaches are refractory and, personally, no treatment, drug or otherwise, has significantly reduced my pain level, let alone give me some pain-free time. The lowest my pain goes is about an eight or an eight and one half out of ten and it frequently reaches ten. I hesitate to discuss this in much depth in this thread because I don't want you to think negatively of Jefferson. For years I've received compassionate care and I know that my doctors have done everything in their power to help me (my neurologist has pushed hard for permission to try nearly untested experimental treatments) and I can even see how upset they are that they haven't been able to do more to help. But they have indeed helped. Even though I was told a year or two ago that I had exhausted all of the treatment options available, they've continued to try just as hard to make things the best that they can be. If not for the finely tuned daily medication regime that I'm on as well as my rescue meds and the inpatient experimental treatment that I received this summer I would be totally disabled. Now, as it is, I am about to start receiving social security disability and I haven't been able to work in more than three years but things could be so much worse. At times in the past I wouldn't leave my apartment for weeks or more and I'd only spend a few hours a day out of bed. I lost nearly all ties with my friends. But now, I get out of the apartment several times a week, see my friends regularly and have a normal sleep routine. And while my pain level is very high, with JHC's help, I've learned to be able to live my life despite the disability. I'm still very limited but without the help I've received I doubt very much whether I'd be alive right now.

I do know of others who suffer similarly but that's only because our cases are so extreme that we're easy to find. Generally speaking, of the many people that I've kept in touch with that go to JHC or similar centers, the overwhelming majority fare extremely well. So, despite my difficulties, and maybe even because of them, I recommend JHC to you because they've helped so very many people and because of how much they've been able to help even me.

Blargh, I need to relearn how to write concisely. But I hope this helps. My thoughts are with you.

Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Methylphenidate, Clonazepam, Wellbutrin XL, Namenda, Oxycontin, Oxycodone, Magnesium sup.
PRN: Ketamine nasal spray, Celebrex, Migranal, Haloperidol, Zyprexa, Lodine, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Toradol, Reglan, Ambien CR, Provigil, and all triptans


kandjmomy
Regular Member


Date Joined Mar 2009
Total Posts : 40
   Posted 4/15/2009 4:37 PM (GMT -6)   
So for anyone interested, I had my Jeff appt today. It was a great deal of waiting to see medical professionals, and not a lot of time actually seeing them. But Silberstein seemed committed to helping me figure this out. I was shocked when he called my headache "bizarre", since I thought he's seen every kind of headache. But I think since it was a sudden onset and has been constant since (with no history of this type of thing), it's more rare than other headaches/migraines. He wants me to get more tests done, see a facial pain doc at Jeff, and get more records from a previous hospital stay, then I'll see him again in 3 weeks. He switched a few meds but wants me to stay on the Lortab until he can figure out what's going on.

There was also a blaring fire alarm in the building, which didn't help anyone's headaches. And the wait was ridiculous - they seemed to have double and triple booked. But I really liked the medical professionals themselves, so it seemed to be somewhat worth the wait.

I'll let you know what happens next. thanks again for everyone's help.

Post Edited (kandjmomy) : 4/21/2009 5:25:06 PM (GMT-6)


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 4/16/2009 8:16 PM (GMT -6)   
Yeah I've run into the fire alarm problem a few times--once during biofeedback training.

And I do relate concerning Dr. Silberstein's reaction. Fact is, they are very good at treating traditional migraines, secondary headache disorders, and others but across the whole headache-treatment-board neurologists don't have very much luck with New Daily Persistent Headaches. One of the main characteristics of the disorder is that it don't respond to treatment. Though Gabapentin and (I think) Topamax are considered good treatments. With most primary headache disorders the patient has overexcitable neurons that are easily triggered to rapid waves of spreading depolarization across the brain. Persistent headache sufferers face the challenge of this already little-understood condition but our brains just don't stop with the continuous harmonic neuronal firing waves from hyperexcitability that just doesn't stop. If you look into the mechanisms for the actions of common headache medications like Topamax and Zonegran you'll see that they attempt to inhibit rapid neuron firing. But the essential problem for us with unremitting pain is not preventing headaches but mainly stopping the one that keeps on going.

The doctors there are very interested in persistent headache coditions because they're particularly challenging and usually require a team effort. I've only had clinical visits with two or three of the neurologists at Jeff in more than three years there but I'm pretty sure that everyone in the center is quite familiar with my case--even the front office staff (yes they can be irritating but that makes it that much more important to get in good with them--Paulette in particular is a very nice person. She typical does checkout and often will leave you waiting but she's also spent hours on the phone with my insurance company to get approval for special treatments on more than one occasion).

I'm not quite sure whether it's easier thinking that our headache disorder is fairly unique or taking a look and seeing the many people even on this forum who go through the same. It doesn't really seem that important to me after 6+ years I guess but that doesn't mean that I've fully been able to come to terms with the nonstop pain. Every day is a struggle. But I know others who've been through this for years more than I have. But anyway, from what you've described your experience is very similar to what I went through when my first neurologist referred me to Jeff. So if I can help in any way, well, I've been there before so hopefully I can help.

Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Methylphenidate, Clonazepam, Wellbutrin XL, Namenda, Oxycontin, Oxycodone, Magnesium sup.
PRN: Ketamine nasal spray, Celebrex, Migranal, Haloperidol, Zyprexa, Lodine, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Toradol, Reglan, Ambien CR, Provigil, and all triptans


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 5/10/2009 12:49 PM (GMT -6)   
Any update?
DX: NDPH, Recovered CRPS
RX: Lamictal, Methylphenidate, Clonazepam, Wellbutrin XL, Namenda, Oxycontin, Oxycodone, Magnesium sup.
PRN: Ketamine nasal spray, Celebrex, Migranal, Haloperidol, Zyprexa, Lodine, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Toradol, Reglan, Ambien CR, Provigil, and all triptans


kandjmomy
Regular Member


Date Joined Mar 2009
Total Posts : 40
   Posted 5/10/2009 6:08 PM (GMT -6)   
Sorry for not posting sooner, but I still feel like I'm in the thick of it. If you saw my new post, you'll see that last week Dr. S. found stenosis in a blood vessel on the right side of my head (where my headache is). The radiologist reading the films didn't see it, so luckily the doc did. He even called Dr. Marmura in immediately to get another opinion. He saw it too. He wants me to get a spinal tap this week, but I'm not sure of the correlation. Dr. S. didn't explain anything else to me, so I don't know of the possible causes or treatments. I guess we'll wait and see what the LP shows. Any ideas?

My headache is still bad, and I'm starting to have some visual disturbances as well, which is new. Not sure what that means. He's tried some more meds, but nothing is helping except painkillers.

Also, Paulette was supposed to schedule my LP for this week, but I haven't heard from her. Will it just upset her to get a call from me tomorrow or should I call?
THANKS!

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 5/11/2009 10:01 AM (GMT -6)   
Well, I'm inclined to tentatively say that it may be good news to a possible physical cause pinned down. That makes the direction of your treatment easier to decide and, knowing what they should be treating, it sounds like this could be a big step. Here's hoping at least.

I'm going in for an MRV/MRA this week (my fourth or fifth magnetic resonance type imaging test). We'll see a clearer picture of the blood vessels in my head. I hope to god we'll find something.

Keep me posted.

Oh, and, yeah, give the office a call about your LP. As long as you say that you just wanted to double check that everything;s moving forward she won't take offense. She's spent hours on the phone with my insurance company several times--she's there to help.

Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Methylphenidate, Clonazepam, Wellbutrin XL, Namenda, Oxycontin, Oxycodone, Magnesium sup.
PRN: Ketamine nasal spray, Celebrex, Migranal, Haloperidol, Zyprexa, Lodine, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Toradol, Reglan, Ambien CR, Provigil, and all triptans


kandjmomy
Regular Member


Date Joined Mar 2009
Total Posts : 40
   Posted 5/11/2009 6:02 PM (GMT -6)   
I agree, Ben, that it is a good sign that they found something in order to find a cause and possible treatment. I just don't know how serious it is or what they do about it. The "what ifs" are difficult right now. I hope they find something for you as well. Make sure that the doc looks at the films and doesn't just trust the radiologist's report. I was very disappointed that he/she didn't catch the stenosis.

I called and spoke with a nurse today just to tell her about my new visual symptoms. She checked about my LP, but it hasn't been "firmly" scheduled yet. It's one of two days this week though. If I don't hear anything tomorrow AM, I'll have to call the front desk. I need to arrange work and childcare, so I need to know soon. It's frustrating.

Let me know how your new tests go.

tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 5/19/2009 8:42 AM (GMT -6)   

I have been following behind the scenes, any updates from you guys? Have you been back to Jeff?!

Hope you all are well!


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SmurfyShadow
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Date Joined Dec 2008
Total Posts : 2386
   Posted 5/19/2009 1:26 PM (GMT -6)   
Make a diary (sp?). NOt a girl one, but list all found and drinks. Take it your ur appt. YOu could have triggers. TOo much chocolate, pop, coffee trigger mine. I'm still trying to sound sane, its a week in a half migraine for me so far. Its been low grade, so I havent been worried.
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days


kandjmomy
Regular Member


Date Joined Mar 2009
Total Posts : 40
   Posted 5/19/2009 5:39 PM (GMT -6)   
My migraine has been constant for almost 2 and a half months, so I doubt there would be any triggers.

I have my LP in a few days, so hopefully that will give us more info. once he sees the pressure. I'm assuming he'll decide the appropriate treatment from there. I'm still not sure what the treatment would be for stenosis of a blood vessel in the brain, and I can't seem to find any info on it, so I think it's pretty rare. It would explain why no traditional migraine meds have worked.

Luckily Dr. S. will be there to get the results of the LP, and we'll take it from there. Thanks for your concern. I'll let you know.

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 5/21/2009 3:20 PM (GMT -6)   
Sounds good Amanda,

Of course you should keep an eye out for triggers that might exacerbate the headache that you're having continuously, including dietary ones. But don't obsess over it for now. However I do strongly support the general idea of a headache diary. I've been told for pretty much all of the 6+ years of my headache that I should keep a log but I only started to recently. It may not help diagnostically but it's just good practice to keep track of the relative intensity of your headaches a few times a day as well as any known triggers that may have exacerbated your pain, what treatments that you try and how much they end up helping. Sometimes you can notice trends (like having worse pain at certain times of day, during certain seasons, associated with some weather changes or other stressors in your life, etc.) but regardless it's very likely to come in useful for your doctors and to have good records of your history. If you happen to continue getting your headache for a long period of time it can be very difficult to remember how things were at specific times.

Personally, I'm still seeing Dr. Nahas monthly and we're mostly sticking to the same plan with a few changes. I recently switched from Provigil (which I had been taking for a year or two for daytime sleepiness) to Ritalin and more recently to Concerta (essentially extended release Ritalin). In the last week I had my 4th or 5th MR imaging test. Even though all of the previous ones have not shown anything abnormal, Dr. Nahas has told me that they've been finding some MRI variants quite useful, specifically the MRA and MRV scans that I got last week. An MRA is a Magnetic Resonance Angiography scan, which shows blood vessels much more clearly as opposed to the softer tissue that traditional MRI shows. the MRV is Magnetic resonance venography, a variant of an MRA. Both are used to look for for stenosis, occlusion or aneurysms (among other blood vessel problems) in the brain arteries (arteries in the MRA) and veins (MRV). I don't particularly expect to find anything but I have some hope that we might. It'd be so wonderful to have a tangible cause of the horrible headache that I've had for so long, even if that tangible cause is something scary. In my experience it's been plenty scary having NO explanation.

Aside from that I've started using one of my rescue medications more, as it's been working much better. In fact, the ketamine nasal spray (which is specially formulated by a specific pharmacy) is the most helpful treatment I've yet found for the worst of the worst headaches.

I'll keep you posted.

Good luck all of you!
DX: NDPH, Recovered CRPS
RX: Lamictal, Methylphenidate, Clonazepam, Wellbutrin XL, Namenda, Oxycontin, Oxycodone, Magnesium sup.
PRN: Ketamine nasal spray, Celebrex, Migranal, Haloperidol, Zyprexa, Lodine, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Toradol, Reglan, Ambien CR, Provigil, and all triptans


kandjmomy
Regular Member


Date Joined Mar 2009
Total Posts : 40
   Posted 5/24/2009 8:04 PM (GMT -6)   
Here's my update:
For those that didn't know, I had a spinal tap on Thursday to check for a cause for my migraine, and I had bad complications. The Dr. S. sent me home way too early and gave me no warnings about what could go wrong, so I got up from the table and had horrendous pain in my head and back. The pain continued the whole night and next day, so I called his office 3 times, and finally the nurse called and said "stay flat, take 600 mg of Motrin, and if it's worse tomorrow go to the ER". So I called a friend of mine at the ER and he said to come in right away. Long, painful story short, they found a CSF leak (the hole didn't close) and a bleed in my brain (which could have bled out if I had taken all of that Motrin), along with a low-grade fever. They immediately transferred me to Jeff and admitted me to the neuro-ICU. They ran tests all night, but could not give me ANY pain meds because they didn't want to "alter my mental status" (as if horrible pain wasn't doing that anyway). So I cried in pain for the next 20 hours until the tests results came back, and they did a blood patch procedure that closed the hole. My bleed in my brain was contained, so they finally gave me drugs and stabilized me. I got discharged at 1pm and am exhausted. Hopefully I'll feel better soon, but there's still no answers about the original migraine (original pressure from the LP was fine until the subsequent leak). I'm feeling pretty down right now.
sad

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 6/4/2009 11:46 AM (GMT -6)   
I'm real sorry to hear that Amanda. That really supports the reservations that I've had about Dr. Silberstein's clinical work. He should have informed you of what to expect. And it is terrible to think of lying there for so long in terrible pain--I'm sorry you had to go through that. Regarding their explanation of not wanting to change your mental status, I can somewhat understand that. Of course all headache specialists are very hesitant to prescribe pain meds but aside from that I think that in the wake of the information that they were receiving about your CSF problems, for your own safety they needed to monitor your body's reaction to the trauma. The pain meds would have lessened your pain but it would also have masked your specific reactions that they probably needed to keep up with what they were learning about what was going on and how you were responding to treatment. But you never should have ended up in that situation, I'm so sorry.

It somewhat reminds me of several years ago when I enrolled in a Botox for headache study. I was required to come off of all of my daily medications prior to starting the study so that they could evaluate the effects of their treatment without the possibility of falsely attributing some reaction to their treatment when it may have been caused by those many other factors. I just hoped that whatever they learned at the hospital was worth the suffering you went through.

I hope you're feeling better.
DX: NDPH, Recovered CRPS
RX: Lamictal, Concerta (Methylphenidate), Clonazepam, Wellbutrin XL, Namenda, Oxycontin, Oxycodone, Melatonin, Magnesium supplements.
PRN: Ketamine nasal spray, Celebrex, Migranal, Haloperidol, Zyprexa, Lodine, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Toradol, Reglan, Ambien CR, Provigil, and all triptans


kandjmomy
Regular Member


Date Joined Mar 2009
Total Posts : 40
   Posted 6/4/2009 1:23 PM (GMT -6)   
Another update: I had to go in the next day after I posted because the blood patch failed, causing another horrendous spinal headache. I went to the original hospital who were on the fence about giving me another blood patch because of the brain bleed (still contained). Long story short, Dr. S. got involved and sent me to the Jeff Pain clinic where they did another blood patch that was successful. I've now recovered from that but still have my original headache.

I saw Dr. S. today. My spinal tap results came back "slightly abnormal", with blood and elevated white cells in the CSF analyzed. He didn't seem too concerned by that, but I'm worried what that means. Any ideas? He put me on an antibiotic for a month to see if that helps, but at this point I think he doesn't have a clue what is causing this 3 month long headache. His attitude in combination with what I've been through the past few weeks makes me want to give up. I know he knows the most about headaches and that's the only reason I stay, but nothing has helped so far. I don't know what to do anymore.

Amanda

tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 6/4/2009 10:56 PM (GMT -6)   

oh Amanda! (((hugs))

I am so sorry to hear that you have been going through all this. I'm not sure what your "slightly abnormal" results could mean, but I would take the antibiotics and CALL if anything seems "off."

Please keep us updated and try not to give up! (I'll be back tomorrow-I can barely see straight with the head pain I have tonight)

I'll be thinking about you!


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DBurg
New Member


Date Joined Oct 2010
Total Posts : 1
   Posted 10/21/2010 12:42 PM (GMT -6)   
So....what ever happened???
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