Chronic Daily Headaches for 12 years

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Regular Member

Date Joined Jul 2014
Total Posts : 473
   Posted 10/16/2014 2:57 PM (GMT -6)   
Hi Everyone:

I was looking at an older thread about Chronic Headaches.

I have had 2 MRIs of my head done. The first was looking for a reason for the headaches which first presented itself as pressure in my head. I went to Buffalo to get MRI done as the wait, at that time, in Canada was long. I so knew something was terribly wrong.

At first when I would lay down the pain would stop. When I got up the pain reappeared. A Neurologist wanted to rule out intercranial hypotension. At the time I was also getting tingling in my hands and numbness. He ruled out Carpel Tunnel but I do have it. I would encourage anyone who gets an MRI done to ask for a copy of the Technicians findings. I was told by my Doctors that they cannot see anything. I actually have the X-Rays as I had to pay for them. I of course needed to see the notes.

Years later I decided to try to obtain a copy of the report. The Neurolgist who requisitioned it passed away. I got a copy from the firm in Buffalo. The findings of the first and second MRI see hyperintense foci within white matter. There are about 8 of them. They ruled out infarct, hemorrhage and extra-axial collection. No evidence of ischemia. No mass lesion. They ruled out intracranial hypotension. I do have a small focally dialated perivascular space in the basal ganglia. They saw trace fluids within the mastoid air cells and slight mucosal thickening within the ethmoid sinuses.

The Technician suggested that foci such as these are often seen in patients with migraine headaches. It was not thought to be the same type of foci as seen in MS patients. Nothing was suggesting an inflammatory process.

My second MRI was requisitioned to try to see if there is a reason from my hearing loss. It sees several tiny foci of abnormal white matter mostly in subcortical regions of the frontal lobes. They measure less than 1 cm in size and there is no edema or mass effect. It stated that the nonspecific white matter changes. It may be related to small vessel ischemia or demyelination. A follow up was recommended but the Doctor did proceed with a follow up.

My Headache Doctor said to not worry about the foci. If the headaches stop they will go away. They must be there still.

I also have had thorough investigation with my sinuses. I have a slight deviated septum.

I am sitting typing while in horrible pain. I caught a virus. I am coughing like crazy all day and night. My head is in so much pain. I have been prescribed Omnaris nasal spray that will take some time to work and a cough syrup. Drinking lots. The plan is to get things moving better. When I blow my nose I start coughing.

You feel a bit better if you know that even something small, not really meaningful to Doctors, is found that might contribute to pain.

I had 2 migraines with aura many years ago. I was on the pill. These headaches are not the same. They are more of a cervicogenic headache. Also, OA in my neck may be contributing to the pain.

I get nerve blocks every four weeks. Tried Lyrica. I thought for the Fibromyalgia but saw that it is used for migraines also. It didn't stop all the pain. Once off, I realized that it had helped some. Off due to weight gain. Topamax did not help. Had to stop Tylenol due to rebound headaches.


Osteoarthritis in Multiple joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...

Post Edited (Loring) : 10/16/2014 2:01:39 PM (GMT-6)

Regular Member

Date Joined Dec 2006
Total Posts : 53
   Posted 10/16/2014 11:14 PM (GMT -6)   
Hi Loring,

I’ve had my headache for 8 years and 3 weeks. I understand your pain.
I have a couple of suggestions for you that you should look into. Have you tried a headache clinic like Diamond Headache Clinic in Chicago or Jefferson Headache Center in Philadelphia. They are both top-notch places.

Have you ever had a lumbar puncture to test for high spinal fluid? I had two done at Mayo. While they didn’t really help for me, I know a lot of people that this is their key issue.

Have you’ve done Botox, especially if you are getting trigger point injections? I have found that they are helpful in improving my clarity instead of lowering my pain levels. There is a very interesting side effect that Botox works like having a good caffeine drink, and most doctors don’t even know that this effect is around. I found out through my wife after she looked up the Botox in a journal article.

Lastly, I have nerve decompression surgery on my optic nerves in July 2013 and it changed my life. I unfortunately didn’t go aggressively enough, so I have to go in and cut it all out. But the week of the surgery, I ended up having the ability to writing a final paper for a master’s class of mine. I could get up and do chores that I haven’t been able to do in years. I felt my depression lift off of me that has been weighing me down for years. I actually got up 3 days later and did dishes! I live in the Washington DC Metro Area and saw Dr. Ducic in Mclean, VA. (He used to be part of Georgetown). His website is

Please feel free to ask me anything. I wish you the best. Take Care!



Forum Moderator

Date Joined Apr 2012
Total Posts : 7471
   Posted 10/18/2014 12:46 PM (GMT -6)   

see my diagnosis at the bottom/

I went to John Hopkins in MD to get the complete diagnosis on my head in 2009. I now see a neurologist at Thomas Jefferson, in Phila.
He has me on a Pain management combo that keeps my daily pain down to a 3-4 most days. I use imitrex for the days that break through pain comes on.

I wish you the best of luck.

Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

Regular Member

Date Joined Jul 2014
Total Posts : 473
   Posted 10/18/2014 4:59 PM (GMT -6)   
Thanks for the responses. I am not in the U.S. and can't really afford to get medical care in the U.S. Our health care is paid for by the Government. We see our Family Physician first and the FP sends you to Specialists if and when needed.

In my Province, people with Osteoarthritis are treated in Pain Management Clinics, not by Rheumatologists. There may be some that take on OA patients but the only one I was assessed by did not. Referrals to Specialists do not necessarily mean you become a patient, they may just be consulting for you FP.

I was at first being cared for by a Pain Management Clinic in a Hospital. I was being treated by Neurologists. There were no Rheumatologists on board. They thought that some of my head pain was caused by Osteoarthritis. The meds they put me on were NSAIDs. I did try Topamax. It caused brutal additional pain. They were going to try Botox but it did not transpire. I tried Fentanyl Patch and Oxycontin. In the end I was told that I needed long term Physiotherapy in a Community Setting.

I got a referral to my present Doctor who runs a Headache and Pain Relief Centre through a Physiotherapist. He is very knowledgeable. He did previously work in a Hospital and was in charge of deciding what pain medications patients required. I will ask him whether a Neurosurgeon could help. I have been told no to surgery so far.

Today I know that my sinuses are having much trouble. I have a bad virus that is making me cough like crazy. This is not helping my head any. I am using a nasal spray with a possible side effect of causing headaches. I need to get my sinuses working better so I will have to bear it. We had a car accident in August and that has been quite a setback for me. My Headache Doctor told me I can still get better. Well, perhaps when the virus goes away.

I have learned much from the Fibromyalgia boards. I know I will never be totally pain free.

I really just wanted to tell people to ask for a copy of diagnostics. Sometimes Doctors don't tell you everything and I helps to know what is wrong. I do appreciate the suggestions.


Osteoarthritis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...

Post Edited (Loring) : 10/18/2014 4:02:24 PM (GMT-6)

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