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10/23/2011 10:52 AM

Has anyone ever recovered?

Jess23
Jess23Posts: 78
Member

I have had NDPH since January 2011, so at present I have only had this condition for ten months. I've read a lot of people, on various forums, who have had this condition for years; I think the longest was 37 years. Although I've only had this for ten months, it is destroying my life. I no longer socialise, I have taken time off from university and I have been unable to get a job as feeling terrible all the time makes it difficult to work. I don't have a life at the moment, I am currently staying with my parents and I rarely leave the house, and sleep is the only relief I get. The thought of having to live with this for years absolutely terrifies me. It may seem extreme, but I've had suicidal thoughts over this. I want to live, but this isn't living. Has anyone here recovered, or heard about anyone who has? I need something to give me hope so I don't give up.

Post edited by: Jess23, at: 10/23/2011 10:56 AM

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10/23/2011 12:01 PM
tortoisegirl
tortoisegirlPosts: 3237
Group Leader

Welcome! Yes we have heard of some folks on this board who spontaneously recovered, recovered with treatment, or had drastic improvement (0 to 1/10 pain). I imagine this is grossly underrepresented as folks who aren't as bad off don't tend to post on forums, same with those who recover from the headache quickly. There is a lack of data on NDPH, but some suggests that spontaneous recovery is more likely in the first year. The headache is also easier to be broken in that time, such as with steroids, antibiotics, DHE, etc. As heartbreaking as having chronic pain for the indefinite future sounds, there is a lot of hope that you will find a treatment that helps and you will learn to cope.

There are many who can continue to lead a functional life (I'm one). Others do go the disability route but they tend to have lower pain due to this, so that has its pluses as well. Everyone has different pain/symptoms and it affects them differently though, so you can't really compare yourself to anyone else. Because of that, I know how lonely having a chronic pain condition can be. As well meaning as family and friends are, they just don't get it. I am 25 and got mine at 19 so if you ever want to message with me, I'd be happy to. I strongly encourage you to seek out a therapist who sees chronic pain/illness patients as it can be very helpful to talk about your feelings, and they can help you learn some coping skills. An anti depressant could also be helpful...and many have pain properties so you could get a two for one effect.

I would also encourage you to do something. Whether its a couple hours of volunteer work one day a week, or out to coffee with a friend...you need to have some sort of outlet. Start small and work your way up. Even going for a walk around the neighborhood. I know at this point going to work or school sounds impossible, but you won't know what you can do until you try and work your way up to it. Sitting around the house and sleeping too much won't make you feel better. Do you have a good neurologist who specializes in headaches? What have you tried in terms of diagnostics (to rule out treatable causes) and treatments? Hang in there! I promise it gets better. Best wishes.


10/23/2011 07:16 PM
MaryR
MaryR  
Posts: 4120
Group Leader

Hi and welcome, As Kate said there have been a few people here who have completely recovered from NDPH and are back to living pretty much normal lives (though I expect they are more paranoid than usual if they get a "regular" headache).

There are a lot more of us who still have our headache, but often not at the severity that we did at the beginning. In my case it is still there, but I now have found meds that help bring the pain down. Originally it was around 8/10 most of the time, I slept a lot and hid in dark quiet rooms pretty much all the time in the early days so I get where you are coming from. I wasn't able to keep my job and things were pretty grim for a while, but I gradually started attempting to do something useful, even if it was very small just around the house so that I was at least doing SOMETHING. On really bad days I occasionally counted brushing my teeth as useful, but most days I managed a little more than that.

Eventually I started to find out what my triggers were and ways to work around them (like my hat and sunglasses, I also have earplugs). I learned to pace myself better and finally a med helped. I have a couple meds that help now that I take everyday and between all the things I have found I can usually keep the pain level under a 4/10 unless I overdo (which I sometimes do deliberately if I think the activity is worth the pain...I like to be social sometimes).

I still can't work a regular job but I have a small business making jewelry that my family helps me sell at craft shows and recently (due to finding another helpful med) I can sometimes come and work short shifts at the craft shows too, though I don't last all day. I also dogsit (but not for yappers).

So while some of us have had our headaches a scary length of time it doesn't mean it will always be like it is now or that your life will always feel so restricted. I remember the feeling when I first saw that someone had had their headache over 30 years. I was still at the barely coming out of my room stage and I about freaked out. In my case at least most of my 5 years have not been like the beginning. I have a headache, but I have a life again...different than the one I had before, but a life, with friends and things to do and stuff to look forward to and overall it really isn't a bad life (though I still would love to get rid of the headache...that part I don't like at all).


10/24/2011 05:27 AM
daisy19
daisy19  
Posts: 92
Member

That's my biggest fear to..to have this headache for the rest of my life. I have mine now for 2 years and 3 months. I'm still in a 7-10 pain level everyday and pretty much can't do a lot at this moment. I did had better times, not really had a big relief from the pain, but I was able to do a lot more than I can now. Because of that I see that it changes, so it can get better. I really really know how you feel..i feel like giving up a lot. But i agree with Kate, these forums are not reality. Most people who found relief or don't have headaches anymore don't tend to go or stay on forums like these.

And you have to believe it gets better. I've read a lot of bad stories bud also tons of positive ones, so if they can achieve it why can't you? Just keep looking and keep going no matter how hard it is. Keep searching and chances are big you will find something that works.


10/25/2011 01:38 AM
Enbee
EnbeePosts: 1556
Senior Member

I think it was at least 2.5 years before my pain was much below an 8, aside from a few short times when I was having infusion treatments. It can take awhile before you get the right combo of treatments so it is still possible you can make great improvements! I know how scary it is to think you'll have this for the rest of your life. I try to just deal with it one day at a time and not think about next week or next year. A lot can change so try to just focus on getting through the day and having the best life you can. I know it's easy to say and hard to do but it does help to think of it this way. As Mary has said there are many who have recovered (and probably even more we don't know about) so don't give up hope it can happen and if not there is a good chance you will at least improve from the position you are in now.

10/25/2011 04:43 AM
Ramilin
Ramilin  
Posts: 442
Member

I have..with 15 months of antibotics. Don't give up hope. There is a cause to your pain, it's finding that cause. Most likely, you will be left to find it out on your own without doctors help.

10/25/2011 03:20 PM
Jess23
Jess23Posts: 78
Member

Thanks guys, truly. I'm sure you all appreciate how reassuring it is to know that you're not alone. I've been given hope of a possible recovery, but at the least an improvement on my current situation, which is all honesty, is quite dire. I was having an awful day when I posted before, but I'm trying to keep my chin up despite all.

@Ramilin - I was intrigued by your recovery with antibiotics and learnt of your Lyme disease. Based on that, though it's probably a long shot, I have insisted to my doctor on having blood work to test for it. My doctor is certain that is not what it is, but it's got to be worth looking in to.

Post edited by: Jess23, at: 10/25/2011 03:21 PM


10/25/2011 08:10 PM
tortoisegirl
tortoisegirlPosts: 3237
Group Leader

Jess-Be aware a typical doctor will likely use the standard test which is basically worthless. Its a rare Lyme Literate doctor who will use a lab who uses the more accurate non-standard test, and also looks for co-infections and such. I'm not one to ask on the details, but its something to be aware of. What has stopped me from doing this is cost (insurance doesn't cover the test and the doctors don't take insurance), and the low likelihood from my area, symptoms, onset, progression, etc. If you look into it and feel its a stronger possibility, or just want to take out the what if, I'd look into getting the test done through a lab like Igenex. I hear you can send away for a kit and get blood drawn and have them send it in per the instructions. Best wishes.

10/26/2011 09:28 PM
HeadHurts
HeadHurts  
Posts: 186
Member

I feel your pain, being a sufferer myself for 15+ months now. Sometimes I wonder why this is called living? I don't fit in anywhere, I don't LOOK sick, so people can't understand how a headache can bring my life to a standstill, lose my job, have to stop driving(due to the narcotic meds I'm on) and turn me into a hermit that lives my days inside my house, usually in my bed. There are the days that I cry and rant at the unfairness of it all. I am a mom to 4 kids who have lost the mom they used to know. Then there are the days that I feel a tiny bit better, and can forsee this not being my life forever. I guess it has a lot to do with ATTITUDE. Our situation isn't going to change today, tomorrow, or maybe even next year, but our attitude can change, the way we perceive ourselves can certainly change for the positive, albeit with a lot of hard work, but I think that it beats wallowing in my painful situation, which just gets me even more depressed and will definitely not contribute to a meaningful recovery. Surround yourself with positive friends, Try to do one positive thing every day. As bad as it sounds, and as bad as you feel, you just might find yourself becoming a better person because of your challenges. I hope I do!

11/08/2011 10:45 AM
Ramilin
Ramilin  
Posts: 442
Member

@Jess23.. I am just now seeing your response.

The lyme testing ordered by your doctor is NOT RELIABLE..and intentionally designed to be inaccurate.

Please PM for more info and what testing you need and where to get it from.

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