Permanent Headache 24/7 problem for about 8 years.

This is my first response to anyone's post. I'm suffering from the same thing and I too have given up on doctors. How are you doing now in comparison to when you wrote this post? I've learned a few things about this condition through my trial and error process of finding ways to ease the pressure. Try this, if you haven't already. Don't try to make it go away on your own. Pray about it and go on with your day. Don't try to lie down to often and expel the sensation because ultimately it makes the feeling worse, although on some occasions it feels as though I get some relief from that. More than anything, taking a nap helps me the most and when I wake I immediately busy myself so not to "look" for the discomfort. I have more to say, but let me know if you read this. You are now in my prayers, my friend. God will see you through. I guarantee!!

I'm going on year 7 of my constant migraine so I really understand why you feel that doctors and medication won't get you anywhere but I really want to urge you to rethink that.

As things stand now the best that my pain gets is 8/10. I've suffered from depression and anxiety too, also AFTER the migraine started. But even though my pain level and frequency of the 10/10's are the worst they've ever been now I'm actually starting to get close to getting back to work after 3 years of being unable to and trying to finish my degree. I'll tell you why in a moment.

I started treatment with a headache specialist only a month or so after the headache started. And I've been having monthly visits at some of the best headache clinics in the world for more than three years. about 18 months ago the Jefferson Headache Center team told me that they had tried every treatment for NDPH (new daily persistent headache, my diagnosis) and that they had nothing new to try. In the years prior I had also seen other specialists like sleep disorder specialists, acupuncturists, massage therapists and physical therapists, pain specialists, eye doctors, dozens of psychiatrists and psychologists and even more. I've tried every class of drug used for headache and then some, had Botox injections, Lidocaine IV treatment, bodine infusions, nerve stimulator implants, three planned hospitalizations adding up to nearly a month and a half and a whole lot more.

This July I was the second person to try the new experimental protocol for Ketamine IV treatment for headache at Jefferson. Like all of the prior treatments it didn't reduce my pain level, even when they went past the highest safe dose. However, due to the nature of the drug, I was in a state of inebriation for a bit less than a week. It was just like being drunk. I could only concentrate on one or two things at a time. So while my pain stayed high, for 4 or 5 days I was much less aware of it. A lot of things about that helped. Having the first period when I could almost ignore my headaches in 5.5 years did wonders for my mental health and gave me some time for some clear thought without severe pain poisoning my perspective. Though temporary, I felt like I had some control over my headache for the first time.

So, thinking about how that helped me, having my pain be just as bad but being actually happy, I really changed perspective about how I need to treat my headaches. As I've said, drugs and medical treatments wouldn't get rid of the pain, but I would be doing a lot worse if I stopped taking them. Some months prior, when I was told that I had run out of options, I started (or restarted rather) taking continual opioid pain medication. This did (and continues to) improve my quality of life, even though it was still quite bad. So, thinking about all of this and having had many discussions with my great neurologist I realized that, even though my pain was still very bad, some help was better than none. I had been told for years that I needed to control the things that I can in my life and not obsess over the truly uncontrollable things. It took me a long time to be able to do that.

Now I am still on a dozen or so daily meds and continue to look for new options but I accept that they are unlikely to get rid of my headache. Similarly, I know that my concentration and mental acuity won't get back to the level that they were at before the headache. But doing things that improve my quality of life, even if they're small steps and I rarely am able to do some of them, has made my life a lot better than it was a year ago. My philosophy is that, while you shouldn't stop looking for new treatments, you should find the daily protocol that makes things least bad for you and then take every step that you can to have a better life and not obsess over the steps that you're not currently able to take. One of the greatest tools that I've found recently is cognitive-behavioral therapy. I've known of this school of psychology for years but I never gave it a shot. I think that my exposure to therapy in movies and TV instilled an idea in me that therapy isn't real therapy if I'm not sitting on a couch talking about my childhood, feelings and/or dreams. Unlike that sort of therapy (psychoanalysis--which I tried for years), CBT focuses on the present. When I meet with my therapist we come up with strategies to help me achieve my goals. For example, when I moved into a new apartment recently I realized that I was having a lot of trouble loading up our stuff from storage in the morning and then moving it to the apartment. So we figured out that I do much better when I load up the car the day before, spend the night at the new place and do the unloading the next morning. It really helped me have the energy to get our new place together. It's just a small example really but it was important to me. I read a quote in a Saul Bellow book the other day saying, "No! Live or Die--just don't poison everything." That exemplifies my new attitude: if you're not doing everything you can to make your life the best it can be then you're hardly living at all. And you're letting the headache win. For years I was so intimidated by my failures that I just stopped trying. But the reality is that even though the pain does put limitations on your abilities, if you try your hardest your life will at least be better than it is now (or was). For example, I won't be able to go to medical school like I had wanted to before the headache started. But, despite what I've thought in years past, that doesn't mean that I can't have ANY career. So I'm working toward finishing my degree and getting certified to teach Biology. I probably won't be able to go back to school full time but I'll eventually get there even if I can only manage 1 class a semester.

So try not to give up on medicine. unfortunately it can't always cure all ills but that doesn't mean that it can't be helpful. Doing something is a lot better than doing nothing, even if it's not everything that you wanted. As my therapist says, "Activity breeds activity and lethargy breeds lethargy." Start small, control what you can and I know that your life will improve.

Best wishes,
Ben

Thank you Kala! I am so glad to hear that you're making progress too. I'm not sure if I already wrote this but, despite how much I've hated most of the time that I've had CDHs, I somewhat feel like I have gained something from the experience. I can't say that I'd go through these last few years all over again but with that in the past I'm glad to have what I think is a more healthy mindset.

I've made so many changes in my life and learned so many hard lessons. But the thing that has recently stuck out as really important to me is the idea that it took the loss of nearly everything I had (a lot of the things that I had thought were essential parts of my identity but mainly my ego that had developed in the years before the pain) to really develop a healthy lifestyle and identity (which I'm still working on). I remember feeling so much like nothing could stop me in my late teens. I did face some hard times but when I starting having headaches I lost that feeling of having true control of my 'destiny', then thinking that, instead of being able to go anything, I could do indeed do nothing.

In a lot of ways I have to almost totally start over. For years I put all of my effort toward trying to get rid of my headaches so that I could go back to being the person that I was before they started. If that strategy had been successful, either because of the nature of my headaches or my ability to fight them then I suppose that would have validated the person I was or the way I approached life. Not so long ago I would have been very angry with myself if I had turned my back on my old life--turned to face my headaches instead. I felt so strongly that if I tried to learn how to live as a headache sufferer (instead of fighting my way back to being "healthy") then I was "letting the headaches win". I hated that idea. But after six years I'm well past fighting headaches--they're just a part of my life, nearly as much as anything else is. I've met many of you guys who have similar experiences but I know pretty confidently that my headaches are unique, if only because my life is as well.

I still go to the Jefferson Headache Center every month. But instead of talking about a new idea to get rid of my CDH, we talk about ways to make my life better. It would be quite nice to have these headaches go away some time in the future but I know from experience that a life without headaches doesn't necessarily mean a happy life. My life had plenty of problems before that one night when I told my mom that my one night when this headache started. But with my back against the wall and no excuses left to justify lying in bed with a pillow and a box of tissues, I'm just trying to do whatever I can--regardless of whether this is how I envisioned my life in years past.

That's wonderful. I can't make a really long reply right now but I'm happy that you're being smart about things. I can relate very much, in terms of reintroducing academics into my life one small step at a time. Your idea about studying something a lot different than what you've done in the past is a great idea! I've been trying working a bit on getting the basics of biochemistry back into my head but I sometimes find myself starting to feel a little like I did when i was trying to force myself to complete my degree even though I wasn't at all equipped to deal with the stresses that I had at the time. I also felt the same way about med school. I had been used to getting the highest marks in across the academic board. But I really think that even though I would've had it in me to excel in med school in all of the educational aspects, I know that I was not very good at dealing with the stress that would've com along with all of that. The most salient metaphor that keeps coming into my mind is one of a really impressive house built on rotting foundation. I'm sure you know what I mean.

It really does feel nice to be proud of my small accomplishments now, if only for having put the work in. I'm not sure if you had the same prior experiences that I did but, having high achievement being the expectation in my life I know that I evaluated my accomplishments in, I suppose, a competitive way, and not at all appreciating or valuing my work on its own merits. Heh, I'm not sure how much it shows but I have a very difficult time finding the right words and phrases for the thoughts in my mind so I hope that I'm coming across clearly. At the very least it's something that I'm progressively working on :)

Have u guys ever looked into the possibility of a scf leak. Many doctors don't know exactly how to treat these. Does your pain get better when you lie down. Let me know if u need more info

I have had an indium scan with pressure measurements to see if I had a CSF leak but I was told that that wasn't the case and meaning everything else has been ruled out then I was given the diagnosis of chronic migraine.

Thanks for the thought.

Kala

I was first given caffeine infusions to see if that made any difference. The first time I had one my pain was scoring a 9/10 when the infusion started but after the four infusion my pain dropped to a 2/10. This reduction in pain last for 10 hours. A few months later I had another caffeine infusion and the pain dropped again and this lasted for a week, although I had the occasional aura symptoms but no major headache. The third time the pain reduction last for 10 days but this was less consistent. However I then had a fourth one 31/01/08 and it sent my pain through the roof!! And I have not been the same since. In July 2008 was when I then had my indium scan.

To be honest although I have finally been diagnosed with chronic migraine I still have my doubts. I am going back into hospital on Monday for DHE and for an ONSI assessment. There is a possibility that I may also see the neurosurgeon and if I do I may ask about an Intracranial Pressure Monitor, just to finally satisfy my doubts.

Also, the Headache Specialist Nurse mentioned that if you have had a leak in the past and it has finally healed the brain can fail to readjust and so you still have a headache. What truth there is in this I don't know but this was something she thought may be what I am experiencing.

notalone said...
This is my first response to anyone's post. I'm suffering from the same thing and I too have given up on doctors. How are you doing now in comparison to when you wrote this post? I've learned a few things about this condition through my trial and error process of finding ways to ease the pressure. Try this, if you haven't already. Don't try to make it go away on your own. Pray about it and go on with your day. Don't try to lie down to often and expel the sensation because ultimately it makes the feeling worse, although on some occasions it feels as though I get some relief from that. More than anything, taking a nap helps me the most and when I wake I immediately busy myself so not to "look" for the discomfort. I have more to say, but let me know if you read this. You are now in my prayers, my friend. God will see you through. I guarantee!!

Hey! Thank you so much for posting. I would definitely like to talk to you about all this. Please let me know how we can talk more easily-> via email or chat would be great. Thanks!!!

Hello there,

 

I suffer from chronic tension headaches / daily headaches I to feel life my life is on hold - the pain is so bad I miss days off work. Mainly the pain is on my left side and especially in my eye - I have had a headache everyday - some bad some not to pain full for 7 years im now 24. I have tried every single tablet known the nhs - recently I went private and saw a neurologist who has mri scanned me - everything was ok as I thought. I have seen an osteopath with is a REAL BAD THING! I have a straight spine instead of a natural curve with little fluid in the discs which could contribute to the headaches. Recently I saw a doctor who specialises in BOTOX which I have now had done - it takes 4 to 10 days to kick in and has a very high success rate of about 70 - 80 %. The first few days I still had a headache but now 1 week on I have a clearer head than I have done in years. I would highly recommend this - I also see a phycio which really help.

Hope this helps you all

Becca

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