Taking Pamelor to help wean me off the Tylenol

[Syl]

Janet:

I'm not sure where the trigeminal nerve is, but the headaches usually originate at the back of my neck.

Syl

[Syl]

Today is the first time in a looooooong time that I don't head straight for the Tylenol. The Palmelor is kicking in. However, it does come with some unpleasant side-effects (vomiting, fainting). This happened yesterday, but I do feel better today, and I got my appetite back.

Syl

[ppearl214]

syl,

those are some pretty tough side affects.  Please keep your PCP or prescribing physician updated on these side affects... not to be brushed aside.

Hang in there!
Phyl

[Syl]

Phyl:

I did inform my neurologist about these side-effects. He said to discontinue the rx as long as I feel unwell.

Syl

[ppearl214]

Hi syl,

sounds good... I'm glad to hear that they are on top of things with this and here's hoping you feel better soon. I know many of the meds I'm on cause me nasty side affects (dr's know I am kinda hypersensitive to meds and they watch me like a hawk) and hoping these will subside for you quickly.

Hang in there and pls feel better.

Phyl

[Janet]

Syl,

The trigeminal nerve is inside your skull and can be a source of intense facial pain when the nerve is irritated. The pain is usually on one side, especially around the jaw and teeth. Some of the AN patients on this site have been diagnosed with Trigeminal Neuralgia. This sounds different than what you are describing.

Is your back of the head pain mostly on one side radiating to the neck and sometimes behind the eye? Does it sometimes kick into a full migraine type headache?

Janet

[Captain Deb]

Syl, since your headache originates in the back of your neck have you ever had an occipital nerve block?  I go to a pain clinic about every 2 months and have one of these done and WHAT a difference in my pain level.  I am convinced my headaches have multiple components so my plan of attack is multi-faceted. Check out the nerve block thread here in the headache section for more details.

Capt Deb

[Syl]

Janet:

My headaches usually originate in the form of a brain freeze feeling at the back of the neck. If not addressed w/ meds and heat, they spread upward to the top of my head. Nausea, vomiting, and sweating sometimes are part of these headaches, but not the light sensitivity. Usually, the headaches involve both sides of my head--not just the AN side.

Capt Deb:

Seeing the neurologist I am currently working with to address my headaches is my first step in dealing with the headaches. Despite the unpleasant side-effects (which have subsided by now), Palmelor may just be working. My neurologist says he's had alot of success with this drug in dealing with headaches. Yesterday, I only needed 325mg of Tylenol, and I made it just fine through the night without any headaches. I did wake up with soar neck muscles, but not a headache. I began to get a headache a little while ago, but it originated from the part of my head that hit the concrete first the other day that I passed out on my porch from the side-effects of Palmelor. This is sounding like some vicious cycle. Weren't the dizziness and passing out part of the symptoms that made me go to the Dr. in the first place 1.5 yrs ago?

Amazingly enough, I do see a light at the end of the headache tunnel.

Syl

[Janet]

Syl,

The back of the head has a lot of nerves outside the skull. The nerves when irritated start firing (brain freeze) and cause the muscles to contract, spreading the pain to different areas. (Heat helps to stop the muscle contractions.) If your doctor can figure out what nerve(s) is being irritated and what is the cause of the irritation, you might be able to get it fixed.

It took me 4 years before I finally found what was causing my headaches and get it fixed. After I did, it seemed so obvious.  In my opinion a good portion of these headaches are not from the tumor but from simple nerve damage outside the skull, as a result of the surgery or head frames.  (If you mention this to your neurosurgeon they might think you are blaming them and get a little defensive.)

I am happy to hear you are getting some relief from the Palmelor. Pain is so exhausting.  I hope you are painfree and back to yourself soon. 

Janet

[Syl]

Janet:

How did your Drs. figure out what was causing your headaches? What kind of tests were done? And how did they eliminate your pain?

I do believe that as a result of the surgery, we end up with a head injury that causes the headaches. Dr. O'dell did say that my headaches are like those of others who undergo brain surgery and like those suffered by people who experience head injuries.

Syl

[yardtick]

Syl,

Great questions.  I'm following this topic with great interest.  Hope you are feeling better. 

Anne Marie

[staypoz]

If you start researching the kinds of head pain people who have had other kinds of brain surgery or who have sustained head injury experience, you'll have some aha! moments.  You'll recognize many of the descriptions.  I think that one of the international headache societies has even suggested including post AN-surgery head pain as a specific sub-category of post-op pain. 

staypoz

[yardtick]

Staypoz,

Do you have that website?

Anne Marie

[Captain Deb]

Syl, Janet's surgical fix is chronicled in "Occipital Nerve Surgery" topic further down in this section.

Capt Deb

[Janet]

Hi all,

I decided I had to systematically eliminated possible causes of my post-surgical AN headaches on my own. My doctors were helpful in giving me what I requested.

I went to my neurosurgeon and asked for a MRI of my neck to eliminate neck problems as the cause.  Results: negative

I thought maybe it was a loose screw in my titanium plate. We taped a bebe over a tender spot near my incision and did an X-ray. Results: Tender spot not over a screw.

I thought I might be allergic to the titanium plate. I researched this topic and found that it is highly unlikely to be allergic to titanium.

I knew that if I held my chin down or turned to the side for too long the pain would start. I knew that Indocin (strong anti-inflamatory) lessened the brain freezes.  I knew that Botox injections helped lessen the muscle contractions that followed. I knew that my pain felt like a "raw nerve".  My conclusion: Irritated nerve from head movement resulting in severe pain and muscle contraction. I was becoming convinced this was a mechanical problem.

I started looking up nerves and nerve pathways. I found that an irritated occipital nerve was where I was feeling the most severe pain on the opposite side. The more I read, the more I was convinced that this nerve was part of the problem. It even explained the pain behind my eye, neck and shoulder.

I asked my headache neurolgist to refer me to a pain clinic for a diagnostic nerve block of my occipital nerve. Conclusion: Instant relief. The occipital nerve seemed to be a causitive factor.

Someone posted information about a scar neuroma. I had 2 tender spots on my incision. One radiated towards my ear when pressed. This made sense to me.

Someone on this site wrote they were referred to a peripheral nerve surgeon at Georgetown University. He specialized in nerve pain, including the occipital nerve.
I sent him my all my records and he agreed to see me. I flew out and he gave me the first explaination from a doctor as to what the problems were likely to be and how it could be fixed.  Finally, someone who was making sense and had a unique skill to fix it! He said 80% chance I would feel better. He said that he would not make me feel worse.

Regarding the surgery, my headache neurologist and internist were encouraging. My neurosurgeon wouldn't commit to an opinion. The pain doctor said "don't get your hopes up". I felt I was grasping at straws but knew I couldn't keep taking such high doses of Indocin for much longer without damaging my liver and kidneys. My stomach was starting to give me trouble. I knew I had to try something. I did have my doubts.

I later had outpatient surgery. He fixed a scar neuroma of the lessor occiptial nerve and the aricular nerve that was embedded in the titanium plate. I have zero pain on the AN side of my head now. The most severe pain was from a blood vessel that was piercing through the occipital nerve. This has improved dramatically and I have not had an Indocin since surgery. I still have a spot on that side that fires up but Tylenol takes care of it. It is slightly farther up than the spot he fixed. I plan to have that fixed in April. I am not doubtful this time.

Whew.... that was long. Hope this helps someone in search of relief from these horrible headaches.

Janet