Taking Pamelor to help wean me off the Tylenol

[yardtick]

Good for you Syl, at least one of us is winning the headache war  

As you all know my beloved dr Louie (not a Dr, just a joke and part of my email address) works in a hospital.  Yesterday a pain clinic nurse was up on his floor and he was talking to her.  He called me to get all the names of the meds I am on.  She said I am on all of the right meds and she explained to Louie what each one does, not that he could remember it all.  She explained to Louie that when operating in such a small area on the cranial nerves these things DO happen, its just unfortunate I suffer from both headaches and facial pain.  She was impressed that my Specialist knows what he's doing.  Imagine that!!

Anne Marie

[Syl]

Thanks for the cheers and the humor you guys and gals.

Ernie:
I'm glad that you find the info on my posts helpful.

Ann Marie:
Isn't it reassuring when another professional backs up what your Dr. is doing? I just wish the meds did more for you.

Syl

[Syl]

Now that i'm off tylenol, the dr wants me to up the dose of pamelor to 50mg/night. We'll keep it at that for a while. When the headaches go away, we can begin weaning me off pamelor. He said I could go on neurotin if i want, but i don't want. The headaches i'm getting, now that i'm off tylenol, are milder and go away with heat applied to the neck. It's only been since last thursday, Feb 26, that i've been off tylenol, but I'm hoping that most of those were rebound headaches. Only time will tell.

Syl

 

[Captain Deb]

YEAH!!!!!  Hoping you only have rebound headaches!!!!  WwoooooooHoooooo!!!!!

Capt Deb P-)

[wendysig]

Hi Syl,
Sorry I haven't checked in in a while but very glad to hear you are winning the headache wars.  I'm crossing my fingers that you'll be completely off meds in time for your one year anniversary in June.

Wishing you continued good healing,
Wendy

[Syl]

I've been tempted a few times to take some Tylenol, but resisted. I haven't had any since Feb. 26. I'm up to 50mg of Pamelor.  It's taking a little longer for my body to get used to the 50mg. So it makes me feel so sedated and groggy and sluggish. It's been about three of four days now that I haven't had a bad headache. I get the brain freeze alot and feel pressure at the top of my head and forehead along with much soarness in my neck. I also get a sharp and short-lasting pain somewhere around my AN surgery site. But it doesn't keep me down.

Looks like I'm making progress.

Syl

[Syl]

Yesterday I finally began to get back some of my energy. I did wake up with a slight headache that stuck around a bit , but I went on with my day. The headache did go away and so did some of the wonky-headedness, dizziness and brain freeze. I was feeling really good--not 100% but I'll take this any day over how I've felt over the past 6 weeks I've been on Pamelor.

Today I woke up with a very soar neck, but no headache. Still feeling better!!

Syl

[Syl]

Feeling even better. Got more energy now. I resumed my daily walk today. I hadn't gone walking for 3 or 4 weeks. The brain freezez, soar neck, and pressure at the top of my head all seem to be fading away. I do, however seem to get slight pain when I'm due to take Pamelor.

Syl

[Jim Scott]

Syl ~

I just wanted to let you know how pleased I am to learn that Pamelor seems to be helping your headaches so much.  May this situation only continue and further improve! 

Jim

[EJTampa]

Hi Syl,
 
Just being able to get out and walk again will probably do wonders for you!  The increased blood flow is supposed to be the helpful culprit.  I'm very glad to hear you have managed to subdue your pains and pressures and get some of your energy back!  I haven't had much in the way of post-op pains, but it sure feels good to hear someone recovering from these issues, knowing that there is hope for those that are still in pain!
 
Ernie

[Syl]

Yesterday I got a bad one. It went away then came back. Then went away and came back once more. My neck was really tight on both sides.

I'm fine today.

Ernie:  I hope your pain free days never end.

Syl

[yardtick]

Syl,

Here's something interesting, I went on prednisone because of an on going sinus infection.  I started off at 60 mg, my facial pain, temple, eye, ear, and tightness in my neck all disappeared.  My sinuses are 100 % better, but of course the drug makes me NUTS and I got a full blow migraine.  After a few days I started to taper off the drug.  I'm down to 20 mgs now.  My sinuses are good but all my facial pain is back, and for me 40 mgs is the magic number.  I felt great, no pain, no craziness just unbelievable hunger.  It is a wonder drug and to be pain free for a few days was worth all the craziness and migraine. 

So glad to hear you are better today.

Anne Marie

[Syl]

Anne Marie:

I wish you could enjoy more than just a few pain free days.

Syl

[Janet]

Anne Marie,


Good work on connecting the dots! I also have noticed a connection between steriods and the head pain.

A number of people on this site reported the start of their headaches around 2 weeks post surgery. This is around the same time they finished taking steroids after surgery. (Me included.) That connection was one of many things that convinced me, I was experiencing an inflammatory problem of a nerve.

If you have surgery on you facial nerve, Anne Marie, are they expected to take a look at your trigeminal nerve as well. Is this thought to be the source of your pain?

Janet

[yardtick]

Hi Janet,

My MRI is scheduled for June 2nd, and I have a follow up with the specialist July 2nd.  I hope this MRI is easier to read.  In 2007 the report read, there is residual tumour extending from the geniculate ganglion posterioly along the tympanic portion to the posterior genu.  There is T1 secretions within the mastoid air cells in keeping with post surgical change.  In June of 2008 the report read, the residual mastoid air cells are fluid filled, which makes evaluation of the petrous temporal bone very difficult.  However it is possible to see that the descending portion of the left facial nerve is larger than the facial nerve on the right.  So who knows what this MRI will reveal.

The neurotologist that I see wants me to see a neurologist in my city.  I was seeing one last year, but I didn't find her to be too helpful.  I've called my family dr for a referral to another neurologist, but he needs to have the notes from the neurotologist first.  I'm going to call the one I was seeing and get in there as soon as I can.  I'm off of the prednisone and all of my pain is back.  My sinuses have remained clear, but I'm on a steroid nasal spray so that is a contributing factor.

I agree with you that this is a definite inflammatory problem.  My neck and shoulder are now bothering me more than ever.  I'm taking toradol but it doesn't seem to be helping.  I'm still on neurontin.  To quote some here on the forum, "I'm in love with my heating pad".  One for my face/head and one for my neck/shoulder.   If I wasn't taking a sleeping pill I would not be sleeping.  Scary to think of all the medication that is floating around my system, but I know if I didn't take it I would be worse off. 

All keep you posted. 
Anne Marie