New Daily Persistent Headache Support Group

Post edited by: ayoungman, at: 12/12/2009 02:49 PM

Post edited by: ayoungman, at: 12/12/2009 02:51 PM

Hello,

Welcome to the forum. Your headache could be caused by any number of things. Did you share with your doctor the details of what happened that night in the dorm? I think it would be very important to review exactly happened with the doctor. Some of your symptoms could be from a more serious issue and you would need additional tests to properly diagnose and rule other things out.

Hemicrania continua is a reasonable suspicion, although I think the pain from that is usually more moderate in nature (as opposed to mild.) It could be post-trauma from what happened or NDPH or something completely different.

I hope you are able to find a doctor who will pursue finding out a reason for your pain. Just telling you to get your mind off of it is competely unacceptable.

Take care and feel free to ask any additional questions you may have.

Hi ayoungman,

I wanted to welcome you to this forum as well. You're case is unique to this group, as far as I know so it'll be interesting to see what they're (your neuro's) are able to figure out about your headache.

I wonder if you could get rid of the headache by smoking more pot. Now I am not suggesting you do this, but it just occured to me that if you repeated the same trigger, if it would undo it.

On another note, I hope you are able to have the MRI and also find a good doctor to manage your treatment.

Hi ayoungman,

I am sorry to hear about your case. The good news is that you are doig the right by trying to get yourself educated about NDPH. I wish I did the same when I got mine. Anyways..it is not that you need to go to Dr Todd only..mine was diagnosed and brought under control by Diamond Headache clinic in Chicago. Now I see a neuro in NY. Just make sure you see a neuro who specializes in headaches. If possible, go to a headache clinic. DO NOT take narcs as they would put you in rebound cycle. That is what my first neuro did.

I disagree about the narcotics. If you have explored other options and get to that point (it took me a few years), they do not give everyone rebound. The pure narcotics vs. a combination of narcotic with Tylenol have a lower potential of rebound. They have given me some quality of life back and have been the only thing to work. So, after going through neurological care and trying dozens of preventatives and treatments, if someone runs out of options, I wouldn't totally eliminate the opiate option for down the road. They do not give me rebound. Worst case you'd try some and have a rebound headache, you'd have increased pain for a couple weeks until you stop the medication and go back to where you were previously.

Opiates could also be used 2-3 days a week with little risk of rebound if you get worse pain some days than other. I did this for a few years. But, I also get migraines that aren't consistently treatable with Triptans, so that is why I was given that option. Having those on hand made me feel more comfortable because I knew when my pain spiked I could take something and have a little control over it.

Shrishti1775-Care to share what type of narcotic you tried and gave you rebound?

I also agree that although a lot of doctors (even neuros) don't know about NDPH, but once you find one that does, it doesn't need to be a top specialist at all. I would go to a neuro who specializes in headaches, talk with them and see what they think, and then if needed keep seeing other doctors until you find one that has ideas for you and a realistic diagnosis. Some doctors only believe in Chronic Daily Headache, which is different than NDPH, although the treatments are generally the same with preventative medications to reduce the severity of the pain. Something to keep in mind.

Hello and welcome to the group.

If your dr. is not listening to you, I would suggest finding another dr. Most Neurologists and specialists need a referral from your physician to see you. If your dr is dismissing this as nothing, then he probably won't give you a referral. Try talking to the dr. again and if you still get nowhere, find a new dr.

tortoisegirl: I also get migraines and Triptans don't work for me. I've tried so many preventatives and suffered so many side effects that I asked my dr. for a break. I use Ibuprofen and Darvocet for daily headaches. For bad migraines, unfortunately, I haven't found anything to break the pain. I end up having to see my dr. What type of pain meds work for you?

Post edited by: Lazy1, at: 07/26/2009 09:21 PM

Hey,

Sorry because I'm not going to read everyone else posts so I may be a bit repetitive here. First of all, It is probably important to talk more about the event that led up to the headache. What did you do? Precisely what were the problems you had when you did it? Did you also hit your head or anything else like that this night?

Do you have a history of headaches personally or in your family?

From what I can see this does sound like NDPH, but you would want to rule out any secondary causes first. You should see your doctor regrading this. It would be useful to get an MRI.

If this headache is sidelocked I suppose it is possible you are talking about a case of Hemicrania Continua. Fortunately, you could try a relatively strong trial of indomethacin for that. If you have HC it will go away and if it does not you don't have HC.

NDPH can oftentimes be mimicked by dural venous thrombosis (DVT) or low pressure headaches caused by a spontaneous CSF leak.

The DVT would be easier to diagnos because all you really need is an MRV. The low pressure headache might show some classic signs on the MRI (meningeal enhancement, crowding of the posterior fossa, chiaria malformation-oh and they could also check out your pituitary which is a hotspot for headache patients); however, the low pressure headache would be harder to diagnos. Is your headache better or worse laying down?

Is it severe? Do you have photophobia/phonophobia/osmophobia? Has it ever made you nauseous? Has it made you throw up? Is it worsened by physical activity? Have any medications had an effect on it? Do you have any of the following-fortification specta, scintillaitng scotomas, paresis, paraesthesias, dysarthria, aphasia, loss of coordination?

What I'm getting at is you should see a neurologist or headache specialist to rule out anything serious and you should have an aresnal of information in case the doctor isn't up to date on these problems. I've spent alot of time learning about these headaches and just about everything related to them-BUT I AM NOT A DOCTOR and even if I was it is only appropriate to get a formal evaluation.

I think your history will be key in going about this and it could help you avoid needless testing and costly procedures.

Feel free to ask me any questios because I would enjoy answering them if I can-best of luck with your headache

Tim

Oh and I'll just quickly say that the jury is still out on narcotic usage. I believe Dr. Saper is of the persuasion that they should never be used-but they are used acorss the nation to treat headpain with some success. I've seen a patient twice now that constantly wears a narcotic patch and loves it. It has made a huge difference in his problems and he has no rebound issues. I'm not sure if they difference is seen because of personal differences or the nature of the headache we all suffer from. Either way I think trying narcotics is a choice that should be explored by the patient/doctor/ and hopefully supporters and family members of the patient because narcotics are clearly not without their downside-when those downsides become less problematic than the headache do you want to start trying them? I think its also an issue of personal trust-could you have those drugs and trust yourself to use them appropriately? If you have any questions it might be best to not give yourself the option.

To rule out hemicrania continua, you simply take indocin, if it works, you have it, if it doesn't, it is something else. Unfortunatley I have had a really bad reaction to indocin so there is no way of knowing if it would have helped me or not. It was given to me by Dr. Rozen in hospital. There are many other doctors that helps people with all types of headaches all over the world.