Migraine

Hello,

My wife found this site as we both have been researching NDPH as an explanation for what has been happening to me all these years. My current diagnosis is chronic daily headache. We had stumbled across the ndph as I researched new treatment facilities to go to as we have hit a limit on what my current neurologists can do, and I have constantly wondered why and how this happened to me. It seemed that one day I was working 70-80 hours a week and the next I was on disability, alhtough not literally. It has been going on now since 2003.

I have been through almost every specialist out there. Been to Mayo, Rochester (total waste) including their Pain Rehab center, had at least three different neurologists and the current one is rated as the best one in Chicago for headaches of the toughest kind, tried both homeopathic, holistic and western treatments and still the pain remains and gets worse.

I have come across the studies on NDPH and much rings very true and would explain alot. The prognosis would not seem good but at least I would understand.

I see that both Jefferson Headache Center in Philadelphia and Michigan Pain and Headache Center in Ann Arbor have done much research in this area so I am going to look at both. My own neurologist has pushed Ann Arbor for some time though I have been hesitant after Mayo.

Because of the quantity of drugs that I am taking, it is clear that I will need to be put into an inpatient program so that they can be withdrawn properly and new ones started. This is where my questions begin, what drugs are useful that I have not already taken, and what programs are best to go to?

This is a great site and I appreciate it.

Thanks

Hi Chefpa, and welcome! You are in the right place for accurate and reliable information about migraine disease and headache disorders. Let me start you off with some information:

Patient Recommended Migraine and Headache Specialists - our list of specialists based on patient feedback. The Jefferson is on here, and quite a number of our members go there.
Chronic Daily Headache - The Basics
New Daily Persistent Headache - The Basics
Migraine Preventive Medications - Too Many Options To Give Up!

Hopefully that doesn't overwhelm you. I'm not sure if you've seen any of that information in your research, but it should be a good start for you. Any of the specialists listed in our directory would be a great place for you to start.

We have a few members on here who have been diagnosed with NDPH, so hopefully they will be around to introduce themselves and share their experiences. I don't suffer from NDPH, but I do have CDH (and now also daily migraines). In the meantime, take a look around our site and feel free to ask any questions you may have.

So glad that you found us - welcome again!

Hello, Chefpa, welcome to the forum. We're glad you found us.

MJ has loaded you up with good information. She did all the work, all I get is the pleasure of welcoming you!

Take care. If you have any specific questions, let us know.

Thanks so much for the greetings and the information. I am compulsive so I never can have enough of that. It turns out that I have an appointment with one of the docs on the list so that is a good start.

I hope that some of the folks that have NDPH can help me figure out if this is the correct diagnosis. I too suffer constant, daily headaches and also daily migraines which certainly does not preclude the diagnosis as I understand it.

In any event, thank you again and I will keep coming back. I have learned much over these years so perhaps I can share this experience with others and help them avoid some of the pitfalls.

Hello and welcome!

People have already given you links to good information.

If you're taking enough medication to need inpatient care to discontinue them, you may well also have a problem with medication overuse headache, aka rebound. With a rebound issue, preventive medications have little chance of working.

NDPH is pretty insidious. It's hard to find a preventive that works. So far, research has shown some success with Neurontin and Topamax.

Welcome again!

Private messaging is disabled on the forum.

How was it and did you find it helpful?

Thanks

Yes, thanks..know all too well about that. My neurologist is concerned on that front about imitrex and the fact that one type of migraine I get has become almost constant...a good sign of rebound. The inpatient care would be for this purpose primarily, and generally to see if starting over would yield better results. My concern is that the process have proper support...raglan/benadyl IV does not cut it for me when the worst of the pain kicks in.

I have been on neurontin for over a year and topomax for several years. It is hard to say if they have helped but if they were discontinued, I would hate to see what would happen.

Thanks

Sorry, don't understand this message...

Hi Nutcracker...

What is my option if email address (such as mu own) is not allowed and the private messaging is off? I would like to get the input about the program at Michigan if possible.

Thanks

The private messaging system on all HealthCentral forums has been disabled because of unscrupulous people who register, then try to use the system for spamming.

With the exception of the Special Support Issues folder, any message here can be read by anyone, even if they're not a member. Therefore, also because of spammers and privacy, we do not permit email addresses in forum posts.

If you would like to share an experience in the Special Support Issues, where only trusted and established members who ask for access can read, please email me for access to that folder.

I can understand why you might want to address certain issues more privately than the open forum, but the forum is here for group discussion, and for privacy issues, it's not used to facilitate private conversations. Please know that we have weighted all of these issues very carefully in determining these forum policies.

quote:

Originally posted by Chefpa:
Hi Nutcracker...

What is my option if email address (such as mu own) is not allowed and the private messaging is off? I would like to get the input about the program at Michigan if possible.

Thanks

The private messaging system on all HealthCentral forums has been disabled because of unscrupulous people who register, then try to use the system for spamming.

With the exception of the Special Support Issues folder, any message here can be read by anyone, even if they're not a member. Therefore, also because of spammers and privacy, we do not permit email addresses in forum posts.

If you would like to share an experience in the Special Support Issues, where only trusted and established members who ask for access can read, please email me for access to that folder.

I can understand why you might want to address certain issues more privately than the open forum, but the forum is here for group discussion, and for privacy issues, it's not used to facilitate private conversations. Please know that we have weighted all of these issues very carefully in determining these forum policies.

quote:

Originally posted by millsy:
I was admonished for offering my email addy. I wanted to give you the option of contacting me if you would like more info about Michigan but I don't want to address this issue publicly.

I tried to use the private messaging system once and I couldn't get into it. Sorry, I would like to be helpful. I guess you can contact me with a private message if you can figure out how to use it.

Millsy,

Thanks for sharing that info! Is this the protocol no matter what type of headache disorder -- Migraine, NDPH, CDH, etc.? Also, is that the protocol no matter which doctor is in charge of your case? Sorry if I'm asking something you've already said somewhere else. I'm just trying to wrap my head around this protocol.

Thanks!

quote:

Originally posted by millsy:
Chef, I have reread your posts. Here is some info for you. Benedryl and magnesium Iv is a mainstay at Michigan for what is know as "protocol treatment" which is medicine that is given no matter what the degree of pain. DHE is also given IV and there are other protocols (all IV). An antidepressant may also be prescribed.

When the headache flares, you can request certain oral meds, usually limited to antihistamines, anti nausea drugs, and muscle relaxants.

Triptans are absolutely forbidden. Narcotics are also forbidden. Generally treatments you were taking for migraine upon admission will be stopped and Treatments chosen by the doctors at MHNI are substituted. If you are taking narcotics upon admission, they will be withdrawn somewhat more gradually than other medication and you will probably be given meds to ease opioid withdrawal.
There seems to be a basic assumption that most patients are suffering from MOH.

A major logistical problem is that if admission is recommended at your appointment, you can wait over a week before there is a bed. If you don't live nearby, this can be difficult. The length of stay is indefinite but frequently 2 to 3 weeks.

Dr. K (ask the clinician at this website) offers a 4 day treatment for out of towners. I haven't tried it but others here have. Check it out and see what you think.

Chefpa,

One other thing I failed to mention. IMO, it's far better to choose a doctor than a clinic. The best facility in the world won't help unless you have a really good specialist taking care of you, and there can be a big difference in specialists, even when they're at the same facility.

There's also some real disagreement about inpatient treatment. Dr. Krusz almost never does inpatient treatment. He feels that patients are more comfortable and do better with treatments on a less stressful outpatient basis. He has many patients who book rooms at a hotel close to his office, then spend the days in the office receiving IV therapies. The hotel has a shuttle that will take patients back and forth at no charge, and they have a discount rate for his patients.

Who is this Dr. Krusz and where is he located? Did I miss that? Thanks for all the good info.

BTW. I don't know if anyone else feels this way, but I cannot imagine a situation where all of the meds would be withdrawn and the "possibility" of a narcotic would not at least be an option during a difficult period. I only say this because my experience upon various, and multiple, visits to the ER's has been that the ragaln/benadryly or similar concoctions do not work well for me when it gets really bad, especially a thunderclap headache.

Thanks again...no sense sleeping or attempting anyway.