Lyrica withdrawal

[dmulley]

I've been taking Lyrica, 75 mg three times a day, since October.  After my second surgery to clean out the scar tissue, I've been working with the pain center to get off of it.  I'm coming to the end of my third week, taking only one pill a day through Wednesday. The effects of withdrawal are almost worse than than the problems I was taking it to cure!!  The worst has been insomnia.  I went for four days sleeping only 1-2 hours a night.  I've read that neurontin can be worse.  Fortunately I tapered off of that when I switched to the Lyrica, so I didn't have to go through that withdrawal.  Hope this information will prepare someone who might have to go through it in the future.

The pain in the left side of my face doesn't seem to be getting any better or worse without the Lyrica.  Not sure what that means.  But, I haven't had any pain from my ear back since the surgery so maybe it did the trick.  Dr. Leonetti called me today to follow-up, saying that the locations of the pain leads him to believe that it could be coming from the 5th cranial nerve.  Anyone with familiarity?

I'm going to try to go back to work on Wednesday.  Hoping the pain will stay manageable and the headaches will not come back.  I know that others have suffered for years with these headaches and I have only done so for eight months, but I really hope this is over.  I respect the personal courage of everyone on this site that perseveres and provides encouragement to so many.

[jerseygirl]

Dmulley,

So sorry you experience the pain but you have a great doctor if he even admits that you have post-surgical pain!

Cranial nerve 5 is trigeminal and is responsible for sensation, pain and the muscles of chewing. It is also the largest cranial nerve and very difficult to sever but easy to damage if AN is pressing on it. Trigeminal neuralgia is one type of pain that stems from this nerve. It is short and stabbing but it occurs pretty randomly during the day. Some people on this forum have it post micro- or radio- surgically. I bumped into it on www.skullbaseinstitute.com website when I did the  research for my AN. Most ANers have either early morning pain (you wake up and either you have it or you don't) or exertional one (brought about by any exertion for any purpose, including the one you have done pre-op). Occipital pain happens, too, but you seem to have it taken care of. When is your pain? What is its duration? Where is it? Does it resemble trigeminal neuralgia?

I had headaches for 10 years after my first AN surgery and none thereafter, including the second surgery. Every day without pain is worthy and joyful. I sincerely hope that you don't experience it for too long! Your doctor seems to want to work with you and that is a big plus! I wish you the fastest resolution of your pain. Just one day with it is too much.

                        Eve

[dmulley]

Eve,

Interesting you should mention TN; I was just doing some reading and was investigating it specifically.

To answer your questions about my pain:
 - it doesn't seem to occur at any specific time of day but is definitely brought on by exertion and bending over;
 - sometimes the pain will last a few minutes, other times it can last for as much as 20 to 30 minutes;
 - the pain is along the jawbone, in front of my ear, and over my eye (this seems to be consistent with the innervation of the V1 and V3, but I don't seem to have pain along V2);
 - I'm just starting to read about TN, but it seems it may be a possibility.

When this pain comes on, it is excruciating.

I can't say enough good things about Dr. Leonetti.  He and his nurses have been very good resources and active in trying to help me find some resolution.

Doug

[cecile k]

Hi Eve:

You mention that you struggled with headaches for 10 years before they went away.... Would you please let me know what helped to make these headaches disappear - or did they just disappear over time? I had the suboccipital approach to my AN surgery six years ago and am still dealing with headaches, although not nearly as severe.

Cecile

[Janet]

dmulley,

So sorry you are going through this ordeal. I am so impressed that you have had the occipital part of your pain resolved in 8 months. Your doctor sounds very committed to his patients. You seem to have the resolve to pursue help and treatment and not let the pain defeat you. If you do have TM, there are procedures that can help with this, as you have probably discovered. I read an article in the newspaper about a woman who went to Dr. Shanihan at the Skull Base Institute. She had severe TM for 15 years and is now pain free. Anyway, there is hope out there if the TM pain stays. Hopefully, it will go away before too long.

Best Wishes,
Janet

[jerseygirl]

Doug,

I did not have TN specifically but had a combination of scar pain, cluster headaches, and AN-sided pain where everything, including my face, hurt. Maybe, some of this pain actually came from the trigeminal nerve but I will never know. Your pain reallly sounds like it is TN. I wonder what the doctor will say any further! I also have to correct myself: most ANers do not have headaches nowadays, that is a huge improvement since 1988 when I had my surgery #1 that caused my headaches!

Cecile,

I had a terrible time with drugs because nothing over the counter worked but prescription ones really knocked me out. Either way I could not make it to work. My doctors ignored the pain making me feel like it is a minor problem. Since I was lucky enough to be alive (lucky, I know) and on top of that my facial nerve was fine (REALLY lucky in 1988!), I was supposed to grin and bear it. How?!!

I became expert on my types of headaches, distinguishing one from another and understanding what triggers each one. I was attempting either to prevent it or abort it ASAP before it became unmanageable. Here is what I did:

              - slept at 45 degree angle
              - slept no more than 7 hours a night; alarm clock went off even on weekends
              - emphasized stretching during exercise, especially stretching after the weight-lifting so that the neck is not tense
              - followed a routine with sleep and exercise to let the body adapt the fastest
              - ACUPUNCTURE to abort a headache that lasts more than a day; excellent for pain
              - avoided lying down on the AN side; God forbid I awoke up on the AN side - guaranteed pain
              - most of my headaches, even minor, were accompanied by nausea and vomiting, so I used Indocin suppositories
                (learned pretty late from one of the GPs I went to)

My longest headache lasted for 5 months straight when I was pregnant with my first child. The only reason I showed up for work is so that I would not be home alone and do something to myself and the baby.

I do believe that the pain diminishes as the years pass and the surgery site integrates with the rest of the body. However, I found that if I do nothing, the pain controls my life and I would lose my job if I could not make it to work. Hope anything at all works for you! If I remember anything else, I will post. 

                 Eve








             

[Janet]

My neurotologist has mentioned a few times that these post AN headaches do eventually go away. The tern nerve burn out has been used on this forum.  I've also noticed that Indocin has been mentioned recently on the forum  It is the brand name for Indomethacin which I find to be helpful.  Janet

[jerseygirl]

Janet,

Have yours improved at all? I can see that you are over 3 years post-op. I found that as the years progressed, I had more and more pain-free days but the first three years or so I had almost one continuous headache.
        Eve

[Janet]

Eve,

It is hard to say if my headaches have improved because I have become better at treating them.  After a year of being overwhelmed by them, I took charge and decided to be more aggressive in seeking and trying treatments.  With treatment, I do fine.

Three weeks ago, I had an occipital nerve block which totally took the pain away for a couple of days and I could stop the Indomethacin.  Although the pain has returned, as expected, I was surprised that I am able to get away with longer spacing between Indomethacin and the pain has lessened. I usually need Indomethacin every 12 hours but have been going 28-38 hours between pills. I think the steroids in the injection did help and that the diagnosis of an inflammed occipital nerve is stronger, based on the response. I also have Botox injections which last 3 months to help the muscles to relax. I can tell the difference when it starts to wear off.

The end of February, I will have surgery to free up the 2 greater occipital nerves and create more space to reduce irritation. He doesn't touch the nerves, only the tissues around it. I am also having my scar revised, as there is an obvious scar neuroma of the lesser occipital nerve. This is approached differently and the nerve will be revised. He said that he won't make it worse.

The goal is a cure and stop the treatments.

Janet

[jerseygirl]

Janet,

Good luck with the surgery; I hope it works for you! I was so scared of headaches that it affected my decision on the approach during the second surgery. I did not want the original scar touched because it finally after so many years does not give me any problems.

          Eve

[dmulley]

Janet,
I hope that all goes well with your surgery.  The work being done on your lesser occipital nerve is similar to what I had done; for me, it provided a great deal of relief in that area and my scar looks much better. 

Did you ever have pain in your jaw and/or forehead?  Your experience sounds very similar to mine with regard to the affected nerves.

Nerve blocks are great...once they're done.  That's a painful procedure, huh?


Eve,
I'm going to have to wait until I see Dr Leonetti on Feb 13 to get his opinion on trigeminal neuralgia.  From what I'm reading, the location and type of pain is consistent with it, but my attacks are generally shorter than what I've read is typical of TN.  I'll let you know what I hear so that it.

Doug

[Janet]

Doug,

I do not have any jaw pain. Sometimes, I will get a dull pain that goes over the top of my head and stops at the eyebrows. This is not the sharp nerve pain that starts from the back of the head. I know there are different branches of the occipital nerve that send pain to different areas. Could they do a diagnostic nerve block to see if another part of the occipital nerve is causing the pain?

I received a general occipital nerve block that was not done under fluroscopy. The injection was behind the ear, directed towards the midline and fanned out. The greater and lesser nerves were tagerted. The doctor said this will be uncomortable. I laughed and said it would be nothing compared to what pain I have experienced. I barely felt it.  I had it done to see if it would be effective in treating the pain prior to surgery, when I couldn't take Indomethacin for 2 weeks.  What I didn't know was that it wouldn't be a good idea so close to surgery because it would increase the chance of infection. The doctor doing the surgery requires that you have certain procedures prior to surgery to evaluate the problem. (The greater occipital nerves, not the scar neuroma.) One is an occipital block or the other is an effective response to Botox. I already get Botox in the occipital region that works, so I didn't need the block to qualify me.  Patients having this surgery are usually followed by a headache specialist or a pain clinic for a year before having the surgery.

Please keep us informed. Best Wishes,
Janet

[dmulley]

Janet,

Glad to hear your nerve blocks weren't painful for you; I tore the foam pad on the table when they stuck the needle into my greater auricular.

My understanding is that each of the injections that were done into my occipital were specific to certain branches to relieve pain in the areas that they innervated.  These were diagnostic procedures that helped to determine how my second surgery was done.  None of my blocks were done under fluoroscopy.  I assume that improves the accuracy of the injections?

That's crazy that you have to go without your NSAID for weeks.  I had to stop on Monday and had my surgery on Thursday.  Because that time span was less than a week, though, I had to go home with a drain.  They took it out about 48 hours after the surgery.

Doug