Migraine

Here's the link to Dr. Krusz's profile off of the Patient-Recommended Specialists list from this site:

John Claude Krusz, PhD, MD

Click HERE for the full list, which is organized by state.

Good luck!

Chefpa,

I'm a bit late but I wanted to make sure I welcomed you to the forum

All my best!

Thank you for the warm welcome...I never knew these sites existed...what a help!!!!

Chef

Hi Chefpa!

Welcome! I'm a little late to finding this thread, but I wanted to join in.

I'm sorry to hear your journey to find the right doctor has been a difficult road so far.

I see that you are in the Chicago and I noticed you did not list Diamond Headache Clinic as one of the facilities you've been to. Have you heard of it? DHC is in downtown Chicago and also has an inpatient program.

I've been going to DHC since Feb '06. My headache specialist there is the one who diagnosed me with NDPH.

I am diagnosed with NDPH as well as migraine without aura. Do you have any specific questions for me? I'd love to share anything I can.

As a quick summary, my onset of my daily headache was on Oct. 26, 2005. I went from a "normally" functioning individual keeping up with a stressful job to now "disabled" and cannot work--starting from that day. I also have migraines which started at the same time. At first, I wasn't sure which "headache" was which, but as I became more informed on the two, I was able to tell the difference.

I know that a diagnosis of NDPH does have a sour prognosis. However, there are some individuals, such as myself who have found successful treatments with daily preventatives. So there is hope. With the help of my current med, my daily headache is not completely gone, but the intensity of the pain has significantly diminished. (Now, if only I could get my migraines in order!)

I do understand your feeling that you want to figure out what is going on!

Again, let me know if you have any questions! Glad you've found us.

Kelly

Hello Kelly and thanks for the welcome.

I had discarded Diamond early as Rush docs and Mayo were not in favor of them, but I am now reconsidering. Who was your doc there? I have found that the right doc is more important than the place.

Were you inpatient at first? How was it? The hospital, etc?

My biggest concern about the process of getting off the current meds is to make sure that the proper support exist to make sure that I not be overwhelmed by pain in the process. I like the idea of working to find the right balance of different meds.

Any input about this and the meds as well as the process is appreciated.

I agree. The right doc is important and their treatment styles vary. I have found this to be true within DHC as well.

Jefferson Headache Cntr vs Diamond Headache Clinic is a link to my experience with DHC as well as some other's views. You have to scroll down a bit to find mine.

I see Dr. Nissan. I've also made calls in on the weekend to the on-call Dr. and both times got Dr. Merle Diamond. She was extremely caring and one time gave me the option of going to her ER and she would treat me there through giving the ER dr. orders. (I did, in fact, do this.)

In my experience, both docs seem willing to go the distance to relieve pain and Dr. Nissan has been good about working to manage the daily pain I have. Perhaps this is from a 2 yr doc/pt relationship with Dr. Nissan, but through my phone calls with him and visits, whenever I have called in with pain I couldn't handle from the NDPH or a migraine that wasn't aborting, or even a question about a side-effect I was having, he has responded by providing necessary support and/or prescribing meds. I have found him to be easy to work with and open to my suggestions/requests. He has also challenged me and not let me slack on doing my part to help myself (i.e exercise), which I appreciate.

Yes, I was an inpatient first-thing. I had an initial-eval in the office and then he decided to hospitalize me that day. I wrote about my experience in the link above.

I understand your concern about wanting the proper support when changing your medications. When I went into the hospital, I was in Medication Overuse Headache also known as rebound headache. I had to be taken off the culprit medications and started on new meds. During my stay, to stop my status migraine, I was given DHE-IV for several days. I can't remember how many. MOH was very difficult to get through, but I felt I got great support as an inpatient and through subsequent phone calls when I got home.

As an aside, I've found their nursing line can be hit-and-miss as far as their consistency in getting back with me in a timely manner.

Of course, any dr./patient experience is unique. But, there's my experience & input.

Any questions I didn't answer let me know. Or if you've got others, I'll be happy to answer them.

Kelly

I really thank you for sharing your honest experience. It really helps put things into perspective. I said in another forum just this evening that I am finding this process of deciding on my next move to be excruciatingly painful and exhausting, perhaps because I have done so much and am so jaded. But I don't want to be let down a second time either or have a horrible experience and I trust no one now. So, the chance of anyone putting me into the hospital on the first visit is basically 0. I will first go, see, talk and let them do their questions and then decide...no matter how bad the pain.

I really feel your pain. I know because my experience at Mayo was the same, except I did it all outpatient in a hotel for 4 weeks. My wife visited once but the weekends there was no activity and Rochester downtown closes early and is basically closed during the weekend....it was horrible..plus the entire city is built around sick people visiting.

I am not a pill taker by nature and am really hesitant to do it. But I must say that if the pain is bad enough I do not see why a narcotic is not an acceptable method. For me, they always try the non-narcotic approaches in the er...if this does not work, they use morphine and I am ok with this approach...I realize the pain clinics are not and this causes me some real concern about the process of getting off the current meds and trying new ones. I have had such bad attacks and pain that I just can't see doing it indefinitely while they try stuff without success. perhaps this is due to the fact that most of what I have been given has not been successful?

So..thanks again for your really honest comments. BTW, I had kind of the same reaction out of Mayo...I got better for about 8-9 weeks, returned to work part time but boy, it came back and when it did....I wished that I had never been there at all. Which was one of the many reasons that I give to the docs to prove that my headaches are not MOH...the pain was identidal or worse, unremitting and I was off virtually everything except the prophylaxis.

Chef, I'm not sure anyone's asked you this or linked you - have you tried keeping a headache diary? It may seem a little silly since you have daily headaches, but it's helpful at the very least for keeping track of how often you take medication. A big reason I take mine is to keep track of how often and when I've taken my triptans, so I know if today is a day I'll have to suffer through the pain or if I can take something for it. (I have daily migraines now so I can understand your frustration with daily pain. )

Anyway, it may be helpful for you, especially to see if there are any triggers that make your headaches worse. It's also very helpful to show your doctors and will help them determine that you're not dealing with MOH. You can find the link to our diary HERE.

Thanks, Millsy! I appreciate the additional detail. I'll see Dr. Saper at a conference in a couple of months. Maybe I can talk to him about this in more detail.

Thanks again!

quote:

Originally posted by millsy:
Teri, I am not sure if you are referring to protocol in the narrow sense that MHNI uses or more generally. In terms of what MHNI calls protocal (infusions administered on a regular basis, similar to what we would refer to as preventative meds), I had benadryl and magnesium first and later dhe. There must be other options but I don't know what they are.

I am not sure that all headache meds taken before admission are withdrawn in all cases.

Treatment may be different for other kinds of headaches. Everyone I met had migraines except one person who had cluster and I don't know what treatment he received.

There is a team of doctors which meets every morning and the entire team visits the patients Monday thru Friday. On the weekends, one member of the team conducts rounds. During the week only one doc actually speaks to the patients, usually Joel Saper. The rest just stand there and listen.

Research done by MHNI indicates that only a very small number of headache patients benefit from narcotics. I have no idea how they identify the small subgroup but as a practical matter they do not treat with narcotics. My guess is the triptans are out because of fear of overuse although that would be difficult in the hospital since access to medicine is tightly controlled.

I suppose it would be interesting to know the percentage of patients achieving long term success. I guess that would be worth knowing about any program but then of course, the statistic could be manipulated depending on how long term success is defined.

I wouldn't be surprised if you could manage to interview Dr. Saper directly but i don't know how specific his answers would be.

Thanks MJ, No one has and I should begin. There is now a MOH component vis IMITREX, no doubt. I take it 3-4 X day, near constant migrain left side now, sounds like rebound to me...

BTW, how do you get thru those periods of not using triptans? Sounds like you've developed a good sense and ability to do so? For me, with layering of pain (first the constant headahce at 7.5, then the migraine wratching to 8 or 9) it seems almost inconceivable.

quote:

Originally posted by MaxJerz:
Chef, I'm not sure anyone's asked you this or linked you - have you tried keeping a headache diary? It may seem a little silly since you have daily headaches, but it's helpful at the very least for keeping track of how often you take medication. A big reason I take mine is to keep track of how often and when I've taken my triptans, so I know if today is a day I'll have to suffer through the pain or if I can take something for it. (I have daily migraines now so I can understand your frustration with daily pain. )

Anyway, it may be helpful for you, especially to see if there are any triggers that make your headaches worse. It's also very helpful to show your doctors and will help them determine that you're not dealing with MOH. You can find the link to our diary HERE.

Chef,

When I read this I thought you might appreciate the link to our toolbox discussion. Lots and lots of helpful suggestions for what some of us do to help get through the pain.

I hope this helps

quote:

BTW, how do you get thru those periods of not using triptans? Sounds like you've developed a good sense and ability to do so? For me, with layering of pain (first the constant headahce at 7.5, then the migraine wratching to 8 or 9) it seems almost inconceivable.

Yep....

I forgot to mention, it is also very expensive since Medco only covers 9 pills a month. The rest is out of pocket.

Darned if you do, darned if you don't.

Long ago, my first (and best) neurologist, wrote the insurance company a letter and was able to tell them to stop playing doctor and get their payment increased for the imitrex. But then they started asking for the letters more frequently, started making it harder at the pharmacy and I just gave up....I needed that like I needed another headache.

I think I will go to each of the clinics that I eventually chose and have them work me up for the day, ask my questions and then go home and decide. Then return and go inpatient on a basis that I control.

There's not really a good answer to this. I am somewhat fortunate in that my daily pain usually follows this sort of pattern: 4-5 when I wake up, 2-3 most of the morning, gradually increasing and maxing out at 5-6. I average a worse/severe migraine about 1-2 times a week, which is a 7-8. Very rarely have I had worse pain than that, and it never goes below a 2 anymore. I also have very frequent nausea and migraine-associated vertigo, which, when added to the pain, become quite debilitating at times.

As for how I get through not using triptans? A lot of it is that I never even had triptans available to me to use as abortives until January when I first saw my headache specialist. Before that, I only used Frova as a short-term preventive for when I fly. Otherwise I just suffered through the pain. OTC painkillers don't touch my migraines (haven't for years) so I don't even bother. My whole family has a strong sensitivity to narcotics and sedatives so I tend to avoid those like the plague. In January I finally began pushing for better answers and my new specialist had me try Imitrex + ibuprofen, which is usually enough to knock my severe migraines (7-8) down to my more normal level of pain (2-4).

Laura gave you a link to an excellent discussion we had about our "toolboxes". Really a lot of how I deal is just learning different non-medication strategies. Finally getting a script for a nausea med was a big help, too, since that doesn't contribute to MOH. I have had difficulty with MOH in the past as I am extremely sensitive to it, so I can definitely empathize with your situation. If I take a triptan 3 days in a row I will end up in MOH on the fourth.

There's no real definitive way to know when and how to treat. Really, the best thing I've found to do is keep pushing for answers and better treatments until you can find an effective treatment regimen. And, on the days I really can't cope with the pain, I come to this forum and post in the Gripes folder. Everyone here is really wonderful, especially on the bad days.

quote:

Originally posted by Chefpa:
Thanks MJ, No one has and I should begin. There is now a MOH component vis IMITREX, no doubt. I take it 3-4 X day, near constant migrain left side now, sounds like rebound to me...

BTW, how do you get thru those periods of not using triptans? Sounds like you've developed a good sense and ability to do so? For me, with layering of pain (first the constant headahce at 7.5, then the migraine wratching to 8 or 9) it seems almost inconceivable.