Chronic daily headaches

Kassidy,
Are your headaches pulsating at all? My headaches are pressure which at times makes me feel very lighteaded and unsteady. What is wierd for me is that the pressure/lightheaded gets worse with physical activity, and that is usually indicative of migraines. But, my symptoms dont fall into any similar ones that migraine sufferers have.

You said you can remember the exact day and time your headache started. How did the headache start? What was the initial feeling? I ask this because I remember when this crap started again for me, I was watching TV and al of the sudden I felt like I was going to black out. it was only seconds, but from that point on the pressure was back. Periodically, I would experience that same feeling. I dont experience that anymore, but the other symptoms are almost always present.

To Patty - Thanks for the advice about the shot- I'll ask my doctor about it.  I'm glad you have found relief!

To ndb - My headaches haven't been pulsating that I can remember. ( And my family will tell you that I can't remember much!)  Also, you asked how my headache started.  I was sitting in church and all of a sudden I had a headache. I took some Tylenol and I know for a few days I thought I was getting the flu, so I guess it felt like a flu headache.  It got progressively worse and nothing would relieve it and within a couple weeks I was at a neurologist getting all the standard tests done (MRI, etc).  I remember at one point describing it feeling as if I'd been slammed repeatably against a cement wall.   I also had the feeling of my head being in a vise.  There was also a feeling of disconnectedness that's really hard to describe, except that my head came back together when the the first preventative medicine started doing something.

     My first neurologist did all he could for me - it wasn't until I got to a neurologist specializing in headaches that I was put on a preventative medicine and got some relief.

To Mark - It sure does sound like we have the same headache.  This does not encourage me since you said you have had this headache for 18 years.  I am taking all the drugs I wrote about earlier at the same time.  I have gone as long as a month with no pain, and sometimes not even the background pain.  But I'm a long way from rid of it.  By the way, my neurologist is the premier headache specialist in the mid to large city I live near, and does research at a well-known university.

I do think that what we are talking about may fall under "new daily persistent headache",  as you and korbnep wrote earlier.  I've been reading about that this week. 

I'm going to ask my doctor about Fioricet; I don't have anything that stops the headaches once they start to get bad.   

                                                Kassidy

I just found this great article in the NYTimes that describes our headaches perfectly, in a comic manner. Nice to know the larger world (at least those who read the Times) can get a glimpse at what we live through.

http://www.nytimes.com/2007/06/10/magazine/10funny-humor-t.html?ex=1182398400&en=07ec5e285810359a&ei=5070

Hi Kymark and other fellow cdh sufferers:

My 'new daily persistent headache' is about seven years old and the symtoms are very similar as described by Kymark.  Like Kymark, I was also in academic for many years.  After going to several doctors including headace specialists at the University of Chicago and Northwestern University, I still have my daily dull-headache on the left side of my head.  During these seven years I went through a litany of standard tests(MRIs, cat scans, various blood tests...) and various medicines starting with Neurentin, amitriptiline, lamictal, wellbutrin, indomethacin, ...  The only medicine wich helped me 10-20% was amitriptiline. The headache specialist started me at 25mg level but later increased it to 75mg/day.  Continued use of amitriptiline eventually led to urine infection(its side-effects that were not properly taken into account) for which I was hospitalised for five days.  Because of urine infection the headache specialist told me that I could no longer take amitriptiline.  Then he tried some eitht other medicines but without any benefit to me.

For the last six months I have not taken any medicine and the headache level is just about the same.  I am sorry that my experience with my headache is not an inspiring story.  Hopefully, some day we will hear a great story which would help us all.

Additionally, I would like to add that I tried a number of alternative medicines and methods but it didn't chage much.  And I hear about the botox injections.  I am wondering if anybody tried botox injections and can share this information with us.

My best wishes to all.

janix500

Hi Kymark,

I highly appreciate your prompt and very sympathetic reply. After reading it I very much felt that we are on the same page not only because of common headache problems but in terms of our attitudes , feelings, and the way we are trying to deal with this problem. Needless for me to say that constant headache is a very difficult and annoying problem for us and others who have it. When we share our expeiences with those who are in the same boat, it does lighten our burden. And who knows that some day somebody may come up with some happy news for all of us. All we can do is to keep trying.

Kymark, I want to thank you also for sharing your experience with botox in full detail. Too bad, it didn't work for you. I intend to bring this up with my doctor and see what happens.

Thank you, again for you help.

janix

Hi ndb,

In response to your post I suffer from a kind of foggy thinking, lack of concentration, tightness ... but not particularly from light headedness.  Maybe others have something else to share with you.

Hope ZANAFLEX helps you.  I never tried this medicine.

Good luck.

janix500

Hi babe,

I am so happy to learn that the two medicines are working like a charm for you.  Hope it continues this way.  By the way did you have high blood pressure problem along with your DAILY HEADACHE?  Also, was your headache 'dull' or some other type?

Thank you and good luck.

janix500

hi guys
interesting forum - im just new stumbled on this site as Ive been suffering headaches for since nov 06(yes i remember exactly when it happened)
Sounds like some of u guys have similar stories. Ive mostly gone the natural med route (relief for a while but alas..) as i dont have too much trust in M.Ds but I am planned to see a neurologist next week since the M.Ds and natural therapists cant work out what Ive got - is there any particular questions I should ask?

Ive had to postpone college studies b/c of headaches-its interesting some of u guys are in acadamia as well? These h/aches certainly affect ones life eh! Mine are all occipital though - not temples.....Im looking forward to reading future posts and hopefully some sucess stories!
cheers from down under

First - I just wanted to thank everyone that has posted for being so open with information about what treatments and medications that they've tried. Reading this post has helped already, I agree that it's nice to know you are not alone.

I've had migraines for about 20 years, diagnosed as a teenager. In 2003, I was in a car assident that started the daily headaches that I still have. I've been on almost all of the medications mentioned here, done accupunture, chiropractic, massage and everything else. I've seen a neurologist, that had pescribed Neurontin, but it made me groggy all day, so I had to stop. (his only response was that it shouldn't be doing that, and as long as the headache was better, it was helping, wasn't it?)

I currently take Diclofenac Sodium as my daily medication, it's an anagesic that my doctor hoped wouldn 't cause the bouncebacks. And my emergency pain med is Panlor. I will ask about the Fiorcet(?) that several of you have seen some relief with.

I wanted to ask about the testing - you all mention MRI's, cat scans and the like, which no one has ever recommeded for me. I've felt that as this cronic pain is always on the right side of my head, between my ear and my temple, getting worse until it is my entire head, that an MRI might be helpful, but no doctor will order one. Does anyone have any advice, or are the MD's right that there isn't anything to check. Thanks!

Hi NDB.
Light-headedness has been my main complaint these past 5 years!! Nov 1st, 2002 I woke up w/a weird headache and it soon morphed into light-headedness. This was/is constant 24/7. Motion did seem to make it worse. It definately affected my everyday life, but there was no real pain to speak of. After 10 months of this, it gradually got better and better until it almost went away entirely! I lived almost HA free for 3 1/2 years until October 2006 it came back again, totally unannounced (although a virus I had for a few days may have triggered it). This time it is unfortunately NOT acting like it did the first time I dealt with it...there's pain now, and for the last 5 months it's gotten slowly worse. I have yet to take any medication prescribed from a Dr as I've been trying to combat this holistically with diet, chiropractic, acupuncture, changing the toiletries I use (eliminating chemicals on my body), etc.
I finally saw a Nuero in San Fran and he said I have Chronic Migraine--NOT NDPH! He said a lot of Dr's are to hasty in diagnosing their patients with NDPH. He gave me Acetazolamide and I have yet to take it (it's been 2 months since I've had the meds). Have you taken this med yet?
I belong to another NDPH support group but I think you're the first person that seems to have what I've got. I've got/had so many "weird" symptoms in conjunction with this it's pretty crazy...Can you describe your symptoms a little more?
Thanks.
Dave

 

Dave, I have editied your post to remove your email address for your own security as this is a public board.  Please put your email address to show in your profile to enable members to contact you.  Ann

Post Edited By Moderator (Annuk) : 9/18/2007 6:24:01 AM (GMT-6)

Waynet,

I'd suggest pushing your doctor for aggressive treatment. Given the stiff neck and shoulders, physical therapy may be a good idea. Possibly nerve blocks or some other meds to disrupt the pain cycle. What you want to do is keep these from becoming chronic headaches, which are very tough to treat. Doctors have the tendency to dismiss head pain as something that will pass on its own, which it may, but we on this board are the examples of what happens when it doesn't! You need to be a strong advocate for aggressive treatment of your condition. I often wonder what would have happened if I had gotten more aggressive treatment to stop the pain cycle 18+ years ago.

Good luck!

The neck/head connection is a tough one to figure out. I initially thought my headaches were caused by something in my neck, and maybe they were at first, but the tension in my neck and shoulders now seems more a symptom than a cause. It may be that the neck/shoulders caused the headache cycle to start, and then the pain started to be self reinforcing. So I urge you to pursue the PT, massage therapy, etc. so you don't get trapped in the pain cycle. Xrays are unlikely to show much, but you never know.

Keep us posted. We need to hear from some success stories!