Lifetime of Headaches

[NuttyNicole]

I am 33 years old and have been getting headaches since childhood. I get the typical migraines with aura in the front of my head, which I am able to treat successfully and do not happen often.  However, I get excruciating pressure headaches in the back of my head and in my neck. They seem to be deep under my skull and feel like my spinal cord is being smashed and every step I take makes it worse.  The more I move during the day, the worse they get and very little seems to relieve them, other than hours of sleep and not moving.  It makes life miserable and sadly, the world thinks I am crazy!  Is there anyone who has this type of problem or am I the only one who has these headaches?  All I am told is that I need to relax and exercise, but movement makes them worse.

[tomsant]

33 yo M, having 'migraine with aural' from childhood.

Now, 'excruciating pressure headache in the back of head and neck': How long? What do you think caused it? Is it after a fall, or such trauma? Since movement makes it worse, and 'immobility' relieves it, the least one considers 'cervicogenic headache' (Headache caused by problems in the backbone of the neck, its various constituents)

(What constitutes your 'world' who thinks you are crazy?)

You have to meet a neuro.

Best rgds,

Thomas Antony

[hava]

You cannot exercise, but you should be able to these breathing exercises.Do it gently and come back to post your progress in 3 weeks.It be beneficial.Build up your timing gradually.If you feel tired or dizzy, stop and resume later.
Anulom Vilom -  Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day(maximum 60 minutes in one day).
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep breaths into the lungs.

Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 15 times

[NuttyNicole]

Thank you for the information.  I have seen many neurologists in my lifetime and none of them want to focus on the structure of my neck.  I had 3 severe neck and head trauma aaccidents as a child, but the doctors don't like to be told what to investigate.  I get little help from any of them.

NuttyNicole

[tomsant]

Yeah, what to do! We are touchy most of the time :-) Especially when we are told what to do ! ;-)

Try suggesting politely; that you found something called 'cervicogenic headache' in the net and could yours be this?

In fact, the entity of 'cervicogenic headache' is a 'comparatively' new one and there is still some debate going on about the same. You will find that many neurologists are not enchanted by anything that happens outside the skull.

You may be able to google the term, or 'cervicogenic headache society' and find out if there are any specialists on it in your area. Sometimes it is not easy to diagnose too.

In the meanwhile, try to hold your head steady in the position there is no pain, while sitting, walking or lying down.

Best of luck!

Rgds,

Thomas Antony

[NuttyNicole]

I went to the doctor yesterday. I started with just a general practitioner hoping that they could point me in the right direction.  I had a diary of my headaches, as well as a written history of my past.  I had all of my diagnosed problems, complete with researched information and how they affect my life, I also had information as to what I think could possibly be wrong with me with hopes of someone wanting to look into it.

I went in and spoke with the doctor and when he asked why I was there, I told him I was simply there for advice. I explained my history, the doctors I have seen, the tests that have been run, and how it is affecting my life.  He then looked at me and said, "You have been to other doctors so what am I supposed to do?" I responded very calmly that I was hoping that maybe he could lead me in the right direction.  I showed him the research that I had found concerning the headaches you had mentioned.  I told him that it had never been investigated and I wasn't sure what type of doctor I should go to for something like that.  He then said, "well, you have been to a headache doctor and if she couldn't help you, then there isn't much that can be done."  I then prodeded to explain that this same doctor found a hemangioma on my vertebrate and told me not to worry about it, but after doing research, found it is something that should be looked at more closely.  He looked at me like I was a fool.

He finally agreed to set me up with an orthopedic specialist, but I was so upset by his demeanor and the treatment that I get, that I am about to give up.  I have always lived in very rural areas, so good healthcare is hard to find.  To get to major health centers, I have to travel, and I can't afford to miss work and stay close to health centers for the help that I need. I wish I  could just check myself into a hospital and refuse to leave until they find me some help because I am at the end of my rope.

These headaches get more severe all of the time.  Medications are working less and less. It has destroyed my marriage, friendships, and my job is suffering. I honestly don't know what else to do.

[tomsant]

This is so sad. I am at a loss how to advise you. You approached him politely but he was arrogant? (You may have to ask a psychologist! Do you have a 'villain's face? Or your body language was not right?? :-)

I imagine you are in the western hemisphere, or some place where there are doctors at least.  I can assure you that no doctor knows everything. A GP is supposed to know something about everything, and the specialist is expected to know everything in his field; and with the present knowledge explosion, I wonder how many can live up to these expectations.  The human brain is not adequate enough.

I don't believe major health centers will make any difference. It is the attitude and the dedication of the concerned doctor who can, to say the least, guide you. While you may consider the doctor as rude, he may have a different story to tell. How a patient already evaluated in detail by a specialist could come back to him when he was already tired and with enough work at hand, with exaggerated complaints and tons of nonsense from the net :-)

Anyway, you go to the ortho, and let us see what he finds out. If you feel you're back to square one, why don't you upload your 'dairy' to some site and leave the link here. I will try to read at leisure and get back to you.

Let us try if we can attempt to sort it out.

Best,

TA

[NuttyNicole]

Thank you so much for your encouragement.  I don't think I have a villian's face and I am considered very approachable and personable.  Being a teacher though, I know that there are times when we dont' always handle situations correctly because it is "one of those days."  I will continue to follow up with anyone that I can find.  I just hate the way my life is being led....being in bed, or at least laying immobile by early evening every night is not the way I want to spend my life!

[lolorenee]

This post may very well be the cure to a lot of my problems. I'm 19 years old and I can count on at least a moderate headache every day and what I thought was a migraine (although some reading last night revealed to me that my symptoms fall under migraine, two types of cluster and maybe some others) about once a week.
I've been prescribed Imitrex and Treximet, the sumatriptan makes me sick (although I sometimes still take it because I have no other options). I used to take so many Excedrin that I ended up with 2 ulcers. I take 3 Topamax nightly and I have 100mg of Darvacet in case I get a headache.
Let's just say my doctor doesn't understand my pain and my tolerance for medicine very well. I took 4 extra strength Excedrin, a Darvacet and an Imitrex last night and woke up this morning with a headache.
I thought to myself last night that all hope was lost. And today, I saw tomsant mention these 'cervicogenic' headaches and I looked them up. OH MY GOSH! This may be the answer. When I was 14, I was in an accident and as a result, I have whiplash and that age is also when my headaches started getting worse. The pain behind the eye, the base of skull, it all fits.
I am so thankful that you two posted this. I am just now trying to figure out what to do. My doctor told me at my last appointment that these are just migraines and that I just need to take pain pills since my CT scan was normal. She told me that maybe my daily headaches were because of my ADHD medicine and maybe we should look into that.
I really don't think I can approach her with this information, and if you guys think that I should, how do you think I should bring it up? And if not, where should I turn? I'm at my desperation point at only 19. These headaches are destroying me and I want to do whatever I can to fix this.
Any help is appreciated.

[NuttyNicole]

I really hope that this is the solution to your headaches.  I know how awful it is to live this way and I am praying for you! Let me know how it turns out!  It is amazing how we can learn from others, but the key is getting the professionals to understand.

[tomsant]

May be you know that teachers always have questions and doubts; can be because of their academic background, stimulated by the inquisitive students! And maybe he knew you have many questions up your sleeve for which we don't have answers ;-)

Best rgds,

TA

[tomsant]

If this helps, well and good. Hope you will remember that you may be just jumping to conclusions. Many headaches mimic each other, and it is only the expert (if there is one)  who can make one out of the other. Cervicogenic headache fall into the purview of neuro or spine specialists. Some orthos may understand this.

The existence of Cervicogenic headache is debated by some. Try searching the net for this and to find if there is any specialist interested in 'cervicogenic headache' near your locality.

If nothing works, come back to the forum.

Best of luck !
Thomas Antony

[NuttyNicole]

I went to a pain management specialist yesterday and he diagnosed me with Occiptal Neuralgia.  His plan is to try and do some injections at the pain sites at the back of my head and then in a couple of weeks, do some other injections in my neck and back.  Does this sound reasonable?  I also had a lady mention MS to me.  Should this be something that I should look into? I have thought about requesting a lumbar punch to check the CFS fluid, in the past. Maybe it would be a good thing to do, just to rule out other problems.

Any ideas?

[tomsant]

Occipital nerve is from the upper three cervical nerve to the back of skull. His management plan appear reasonable. This will work as a therapeutic test too.

Have you been able to see a spine specialist? (May be an ortho) That opinion also will be worthy.

Glad to know you have found help.

Pls feel free to write.

Best,

TA

[NuttyNicole]

I went and had an injection into the nerve yesterday and first, it hurt like hell! Yikes!  Today, I am not feeling so hot.  My head hurts everywhere else except in the place where it was hurting. I guess that is a good thing, however, removing one pain and replacing it with others (or probably just noticing the others more now) was not the plan I wanted.  There is also pain when I move my head in certain areas and it seems to be right above where the injection was.  Is any of this normal?

Nicole

[tomsant]

Did you share your experience with the doctor who administered the injection? He will be the best person to comment as he does this regularly, and will be aware about the feedbacks.

What I think is, in case you had severe pain during the injection, it may mean the needle went straight into the nerve. I am unable to find why it should hurt in the neighbourhood.

Please let us know what your doctor thinks.

Best rgds,

TA

[AltoBaker]

I have chronic daily headaches for about 17 years, Migraines for about 27 years and Occipital Neuralgia was diagnosed back in July 2005.  I have a pain management Dr, neurologists and I go to Diamond Headache clinic.  When I first went to my pain management Dr he did nerve blocks (injections to the back of my head) the pain stinks. The injection site will hurt for about two Days then the pain should start to go away.  When I did the procedure it helped me decrease my pain by 70% for 4 weeks at first.  After doing this so many times the effect wore down to about a 25% decrease in pain for 2 weeks.  He has since done rhizotomy's on both sides of my neck. This has decreased my pain by 75% for 5 months however again since I have been getting these for about 2 1/2 years the effect has worn down to 50% for 4-5 months.  I normally wait for 1 year until I get the procedure done again, so I live with the pain for 6 months or more.  I have tried almost every preventive medicine out there for my head pain.  Nothing works for me but I have hopes that it will some day.  I guess what I really want to say is don't ever give up.  It took my years for my Dr's to realize I was not yanking there chain and I was really in a lot of pain.  I keep fighting for help and that is what you have to do also.  If I do not like what my Dr says to me I always get a second opinion and sometimes even a third.  Good Luck!!!!

[NuttyNicole]

Thank you so much for sharing with me.  It has helped so much knowing that I am not alone. It has been so hard not to give up because I have lost so much in life due to these issues.  I also have tried so many medications, but due to another condition, there are many that I am unable to take.  The pain at the injections site is finally wearing off, but I have a horrible pain in my left temple.  I also still have pretty severe neck pain, but I am just taking it one day at a time.

I would love to be updated if you find new things that help you.  I want a life and hate the fact that days and years are slipping away.

Nicole

[mqrcie]

I too have had the occipital blocks given by my pain management doc.  Yes, they hurt like **** but hopefully you might get relief after the injection pain is gone, it takes awhile.  I sure hope they help you.
Have you ever had a cervical spine MRI?  Just curious since I didn't notice any mention.  Have you consulted with a spine doc (not just an ortho doc  but one that specialized only in the spine)?    I have C 2-3 to C 6-7 herniations with C 5-6 fused and plated since 1995 and have a lot of pain issues from these and just went through a 3 level facet ablation and it has helped a lot.  
Also, they can implant spinal cord stimulators for occipital headaches and you would go through a trial implant first to see if it works.  Let us know how you are doing, God bless you.