Taking Pamelor to help wean me off the Tylenol

[sgerrard]

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

Janet,

I just want to say that I appreciate you making the headache posts that you do. I don't suffer this particular symptom, thank goodness, but I know that some do, and your posts are consistently informative and hopeful. Your post illustrates well the kind of effort and persistence that may be necessary in some cases, whether the specific cause turns out to be the same or a different one.

I confess I also find the concept of a blood vessel piercing through a nerve a little bit fascinating, even though it sounds excruciatingly painful. Yikes. 

Steve

[Janet]

Thanks Steve,

I had migraine type headaches before surgery on my non-AN side but nothing like after my AN surgery.

I believe my occipital nerve and blood vessel were very close together before surgery, causing the migraine type headaches.

It sounds reasonable that pressure from a head clamp or prolonged positioning could have caused the vessel to smash into the nerve when forced against the skull.

This was taken from the operating room report. "There was significant tightness around the trapezial tunnel where the nerve was penetrating the muscle fibers to the occipital area. The nerve at that site had a vessel piercing through the nerve itself and that vessel was released, a branch of the occipital venous plexus."

No blame to anyone. I think my anatomy before surgery put me more at risk for this to happen.

Janet

[Syl]

Janet:

Thank you so much for all the information you are providing. All the time and research and effort you have put into finding a solution to your post-surgery side-effects is very inspirational. It only reinforces what I believe--we need to participate more actively in finding solutions to our AN issues.

Syl

[Syl]

I'm into week 3 of my Palmelor treatment for headaches. I'm supposed to be taking 30mg of Palmelor by now, but since increasing to 20mg last week came with some very unpleasant side-effects, I'm still at 20mg/night. I am definitely seeing progress. I'm down to 325-650mg/day of Tylenol. That's an improvement from 2000mg+/day.

I no longer wake up with the brain freeze that tended to spread upward and to the rest of my head. Now, I get some pain along my surgery scar that tends to stay confined to the AN side of my head, sometimes throbbing at the temple. I first address that pain with a heating pad. Sometimes the heating pad alone gets rid of the pain. Tylenol is now my last resort, not the first.

Syl

[Syl]

I'm into week 4 of my headache treatment with Pamelor. I almost feel like I did at the initial onset of my AN symptoms 1.5 years ago. I'm getting tinnitus in my good ear. The lightheadedness and dizziness have intensified. My energy level is way down.
I'm taking 30mg of Pamelor and am still taking 650mg of Tylenol. So it seems that I'm gonna have to increase the Pamelor dose yet again. On a good note, I am getting relief from my headaches. That's why my Tylenol consumption is down.

I'll continue updating

Syl

[Captain Deb]

Thanks for the update Syl. I know the frustration of the old medication merry-go-round, believe me!  I think I've been on at least 12 for these beastly brainwrecks. I had to give myself a shot of Imitrex and leave the friggin BEACH today and GO HOME and that really pi$$ed me off!  I sure hope the Pamelor gives you some of your life back.  I myself lived in rebound land with OTCs and prescription pain meds for about 3 years before I found a decent neurologist at a headache specialty clinic.

Good luck to you--I'll be sending good thoughts your way.

Capt Deb P-)

[Syl]

Capt Deb:

However bad my headaches get, they usually strike early in the day and I rarely miss work because of them. But with Pamelor, I'm having such a hard time getting through the day. I have no energy, especially when I increase the dosage. Just when I'm feeling a bit energized, it's time to increase the dosage again. Hopefully I'll find the dosage that works, that ends my dependence on Tylenol. But I'm sticking with the neurologists plan. It sure is hard.

I'll keep and eye out for your good thoughts.
Thanks
Syl

[Syl]

Woo Hoo!!!!

I'm still taking 650mg of Tylenol daily, but today I went for hours without taking my first 325mg for the day. It was about 2 or 3pm before I needed one.

Syl

[sgerrard]

Woo Hoo Syl! I'll celebrate any small milestone with you. This headache war does not sound like something I would sign up for.

Steve

[Syl]

Thanks, Steve.

The Headache War is a nasty one. Once I've won this one, I will then be ready to accept the new me.

I've gone to physical therapy to help fight the Balance War--I'm still fighting that one, but do feel I'm winning.

I got a hearing aid after 3 professionals told me it wouldn't help. Though it doesn't do much with word recognition, I found it helps a great deal with directionality. That certainly makes me feel like a winner in that war.

I'm hoping I can win the Headache War by June 16, 2009, which marks 1 year since my AN surgery.

Syl

[EJTampa]

I got a hearing aid after 3 professionals told me it wouldn't help. Though it doesn't do much with word recognition, I found it helps a great deal with directionality. That certainly makes me feel like a winner in that war.

Hi Syl,
 
If I have any hearing at all left after surgery, I will be INSISTING on a hearing aid.  For me, directionality is VERY important.  Word recognition would be great, but being able to tell where some sound is coming from is certainly important too!  I'm so glad you posted about the usefulness despite the doctors concerns that you wouldn't see (hear?) much benefit!
 
Ernie

[Syl]

Ernie:

My word recognition is around 20%. I'm not sure if that's considered severe or profound hearing loss. It put me in a bad place regarding hearing aids. I'm not a candidate for a BAHA because I've got too much hearing, and a BTE hearing aid has limited use for word recognition. Like you, I find that directionality is very important. That's why I decided to keep the hearing aid. I did find another benefit to wearing a hearing aid--it helps tone down my tinnitus sometimes. I thought that the amplification of noise would make my tinnitus worse in that ear, but it turned out to be quite the contrary.

Syl

[Syl]

 

I'm now taking 40mg of Pamelor, and I have not had any Tylenol since Thursday afternoon. Yesterday throughout the day I felt a brain freeze. Each time it went away on its own. This morning I did get a headache, but it was a mild one. I was tempted to take a Tylenol, but I resisted and used only my heating pad. The headache lasted only about 20 mins, then I went back to sleep.

I think I found my dosage of Pamelor. I might just make that June 16 deadline to win the Headache War.

My kidneys and liver are smiling now.

Syl

 

[sgerrard]

Syl, that is great news! I hope there are enough smiley faces left for the rest of us! 

Steve

[EJTampa]

That is awesome!  Something for me to consider as I come out of surgery and head into recovery mode next week!  Got to go easy on the meds and watch out for the rebound headaches.  Check.  That is my biggest concern really, the post op headaches.
 
Hang in there and here's hoping for headache free days ahead!  <smiley face not displayed due to currently being out of stock>
 
Ernie