Permanent Headache 24/7 problem for about 8 years.

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Diego 88
New Member


Date Joined Aug 2008
Total Posts : 1
   Posted 8/17/2008 10:34 PM (GMT -6)   
Hi everyone :) .
I've had a headache for about 8 or 9 years now and no doctor has found anything 'wrong' with me up until now.
It's a permanent pain on my forehead, or frontal lobe (it's also expanded a little bit to the top and temples).
I suffered from migraines occasionally when I was younger. I've also had rinitis and sinus problems all my life.
One of those awful nights when I was about 9, I had one of these migraines that usually gave me pain on both sides of the brain. But this particular day after that particular night I felt like I still had a little piece of it left, and it was the first and last time that happened, because it was usually completely over the next day but this time it stayed with me and its with me this very moment. I've had sinus treatments, migraine treatments, I've even been sent to the psychiatrist. I've been treated also with anti-depressants. I've also been diagnosed with OCD, but no medication makes a difference on my headache hence making no difference in my life. I had chronic depression for about 2 or 3 years, but my headache problem started before that.
So, any tips would be helpful, thanks in advance! God Bless!
Oh I'm 17 by the way!

Diego de la Vega

notalone
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/10/2009 9:26 PM (GMT -6)   
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!!

tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 2/11/2009 7:02 AM (GMT -6)   

Diego,

Welcome! I am sorry to hear you are going through this! I started out with "regular" migraines when I was about 11 and it has turned into full blown head pain that never stops! I have seen doctors, physical therapists, chiropractors etc.

Tell me about your previous treatment plans and what kind of doctors you have seen. You definately need to be working with a headache specialist, I have found that most other doctors dont have a clue when it comes to head pain beyong the everyday headache!

There are lots of options and things that work for other people (that arent "hokey") hang in there and we will do our best to help out!

 


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korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 2/11/2009 6:43 PM (GMT -6)   
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
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


Kala UK
Regular Member


Date Joined Oct 2006
Total Posts : 54
   Posted 2/13/2009 2:50 PM (GMT -6)   
I have just reached the 11th anniversary of my chronic daily migraines as well as suffering from hemiplegic migraines since the age of 7. I have an excellent relationship with my headache specialist in London and am actually going back into hospital in a few days for 5 days for my 2nd DHE treatment. Whilst I am in I am also being seen by another headache specialist for an ONSI assessment. I am also taking four preventative medications, as well as acute treatments and others medications to manage side-effects.

Despite all this there has been no improvement in my pain and this is why I am following a similar path to Ben. After a discussion last summer with my local neurologist who said that I needed to improve my quality of life otherwise I was heading for the depths of depression, something thankfully I have been able to escape despite suffering from chronic pain for so long. I have been seeing a clinical psychologist and with his help I have been making tiny steps to improve my quality of life. The pain doesn't go away but I so want my life back. I too so want to go to medical school and I hold on to the hope that one day I will be able to achieve my dream.

From last September I started by attending two evening classes a week to study French and Spanish in an attempt to restart my brain and to get myself socializing again. It hasn't been easy as my attendance hasn't been too consistent but I am working on it. I have also now been offered a part-time job. I am trying to build myself up very slowly. I am DETERMINED that this illness will not control my life...my future is in my hands.

So I just want to say congratulations Ben, and I wish you every success.

Kala UK

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 2/13/2009 6:32 PM (GMT -6)   
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.
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


Kala UK
Regular Member


Date Joined Oct 2006
Total Posts : 54
   Posted 2/14/2009 3:53 PM (GMT -6)   
Hi Ben,

Like you I too feel that I have learned something from this experience and in the long run will hopefully make me a better person. It certainly isn't easy living day in day out in pain but there is more to life. I had a place at two medical schools for three consecutive years but due to my migraines I was unable to complete my degree in time to take up my place at either. It took my eleven years in the end to complete my degree. What I have realized though is that if I had of gone to medical school then it is highly likely that I would have ended up dropping out due to the amount of studying involved and the way I used to study. Since these headaches have took over my life, I now have a very short concentration span, my short-term memory is virtually non-existent, and I am unable to read the material I used to and absorb the information. So like you have said I am having to start offer. Studying has always been a major part of my life and I am now in the process of trying to rebuild my academic abilities by trying to do a little every day, maybe just for 10-15 minutes at a time, also by limiting the things I want to do each day. I am focusing on my French and Spanish as this something completely different to what I am used to studying so thought that this would help to challenge me and hopefully restart my brain!! I am also learning to touch type and trying to read for a period of time. So this equates to four things to help my academic abilities. I know this is going to be a long process but I am working on it and again shifts the focus from my pain.

I am still trying to find relief from my chronic pain but I am now not letting this be the focus of my life, and like I have said I'm trying to find ways round it to improve my quality of life. I am also trying to improve my general health by eating a healthy diet, exercising every day and drinking plenty of water, so thinking of my whole body not just my head!

I started this new year as a new beginning and thankfully I continue to feel positive.

Kala

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 2/14/2009 7:11 PM (GMT -6)   
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 :)
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


Kala UK
Regular Member


Date Joined Oct 2006
Total Posts : 54
   Posted 2/15/2009 7:48 AM (GMT -6)   
Thanks Ben.

I am desperate to return to studying all the aspects of biomedical science (this is what my degree is in),e.g. biochemistry, immunology, human physiology, medical microbiology etc. I am so afraid that I will lose my knowledge but I know that I have to wait for the right time otherwise I think I will feel swamped by it all and unable to take anything in, thus adding stress to the situation. It is remembering that I need to do things very slowly and hopefully with time my abilities will improve and limitations become less limiting.

I totally know what you mean with the metaphor you mention, and this is why I know I have to build sturdy foundations on which to rebuild my academic abilities and future achievements. Like you I was a high achiever and always strived to be the best, an expectation in my life and became very competitive. And so now you have said that about not always appreciating or valuing your work on its own merits, I can relate to that too as I feel I was very much the same.

I can assure you that you are coming across very clearly as like I keep saying I can relate my own experiences very much to your own. I think it is quite amazing that we have both come to the same conclusion of having to find a way round our very similar situations and not letting our headaches be the main focus of our lives anymore. I wish you every success and look forward to hearing how things go for you. If you would prefer please feel free to email me.

Take care,

Kala

Rooster427
Regular Member


Date Joined Feb 2009
Total Posts : 56
   Posted 2/20/2009 8:29 AM (GMT -6)   
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

Rooster427
Regular Member


Date Joined Feb 2009
Total Posts : 56
   Posted 2/20/2009 8:30 AM (GMT -6)   
I meant csf leak, cerebrospinal fluid leak, its treatable.

Kala UK
Regular Member


Date Joined Oct 2006
Total Posts : 54
   Posted 2/20/2009 10:11 AM (GMT -6)   
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

Rooster427
Regular Member


Date Joined Feb 2009
Total Posts : 56
   Posted 2/20/2009 11:37 AM (GMT -6)   
Sometimes it wont show up anywhere if the leak is small enough. Blood patch is the only way to treat it. Sometimes multiple blood patches. People will have a wide array of symptoms caused by csf leaks.. I was diagnosed with a leak and in my case it causes pressure at the base of my skull and a stiff neck with weird sounds coming from it. That probably means its a leak in my neck. From the research i have done a leak in the dura surrounding your brain causes much worse symptoms like a constant migraine and possibly leaking fluid out of your nose. George Clooney had one of these. I have been on all types of meds for it but the only thing that makes a bit of difference is caffeine. I would rather have a cup of coffee than a morphine injection.

Kala UK
Regular Member


Date Joined Oct 2006
Total Posts : 54
   Posted 2/20/2009 3:24 PM (GMT -6)   
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.

Rooster427
Regular Member


Date Joined Feb 2009
Total Posts : 56
   Posted 2/20/2009 8:34 PM (GMT -6)   
Kala, I have also heard of this readjustment period. The brain overproduces spinal fluid to compensate for the leak and once it heals you have an increase in pressure rather than decrease. Have you gotten your eyes checked by a good opthamologist? ask them to check for an inflammed optic nerve as this could be a symptom of increased pressure. Though that probably would have shown up when they did a lumbar puncture to check your pressure. The good news is most of us prob don't have anything life threatening. The bad news is that since it isn't life threatening doctors just call it a migraine and send us on our way. All this stuff is new to me I am very lucky in that I have excellent health care and live in The Washington, DC metro area where many of the top doctors practice. While in may not be life threatening it most certainly is life altering and we shouldn't have to live like this.

DiegoDLV
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/23/2009 8:55 PM (GMT -6)   
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!!!

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 3/11/2009 4:14 PM (GMT -6)   
I've never had a lumbar puncture to check for a CSF leak. In the past I've insisted on having it done because I couldn't find any other cause. But I don't exhibit any symptoms that are associated with a CSF pressure or leakage problem. Handfuls of headache specialists have agreed that a lumbar puncture is unnecessary. You're right that some chronic headache disorders are overlooked manifestations of a CS problem but there are a few characteristic symptoms that almost always present themselves in these cases.
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


25BECCA13
New Member


Date Joined Apr 2009
Total Posts : 11
   Posted 4/1/2009 5:53 AM (GMT -6)   

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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