Lyrica and other treatments for pain

[amn70]

Hello,

Have any of you been prescribed Lyrica for pain? I am going crazy trying to find a medication that will eradicate my pain and not leave me feeling like a groggy(pain runs along my crescent-shaped incision from translab surgery back in Jan. 05). This med leaves me feeling like a zombie and I have taken it only at night (difficulty in getting up for work with this drug).

I am sorry to moan again (I have in the past) but I am fed up that 17 months after the surgery, I am still not the same. My head feels abnormal and like it is not a part of my body. I have headaches every day and pain alongside my incision. I have tried at least 8 different types of medications and have also had both cervical medial injections and radiofrequency ablations. I still can't run (I was an avid runner before the surgery who liked to compete in road races).

Thanks for letting me complain to people who may be going through the same thing. I wish those in pain, relief and positive attitude--my positive thinking along with a persistent pain doc who looks for answers are the only things getting me through this. Take care all!

[staypoz]

Lyrica has been mentioned to me, but I haven't asked for a script.  I understand it needs to be taken on a regular basis and is supposed to be for post-shingles pain and neuropathy.  If you try it and it works, please share your experience!   

A caring and persistent doctor does make a difference, I agree!! 

[russ]

 Hello!

  Re pain post 17 mos., You have returned to the neurosurgeon for eval? This ongoing headache and surgical area pain isn't really that common for translab.
  Re running, do you know if they took all the balance also? Many translabs do. If they did, I would understand a problem with that.
  Potential CSF seepage ruled out? I have read of cases for up to 3 years. The incision site also doesn't sound healed.
  Feeling detached could be caused by vestibular loss or the med, or both.
  Seems worthy of being looked at by a surgeon!

  Russ

[Kathleen_Mc]

amn70: The surgical area of my head still feels "detached" in a sense from the rest of me, I am not sure if that's the right way to phrase it but..... anyway for me it's been almost 16 years and nothing much in terms of head sensation has changed since about 1 year post-op (except while I recovered from the second brain surgery). Looking at relaxation and coping mechanisms may be your better bet than medication. (just a suggestion)
Kathleen

[amn70]

Russ--I have had ongoing follow-up with my neurosuregon who recently (within the last two months) referred me to a pain management doctor within the large medical organization where I had my surgery. I don't know what's supposed to be "common" or "uncommon" with my translab post-operative experiences but I can only relay my present reality.

Kathleen--thank you for the suggestions for alternative therapies. I have tried meditation (does relax me) and next will be accupuncture. I do not want to be on meds the rest of my life (I am 36 and before my surgery, never had to be on any medications).

[Larry]

ann70,

I have had constant and at times debilitating headaches since my middle fossa op almost 4 years ago. Like you, I have tried lots of meds including neurontin, which seems to help a bit. I ma now going to try Lyrica (Pregabalin) which is meant to be the new and improved neurontin. With Lyrica, not sure how you are taking it but it is meant to be a slow build up.

Having said all that, different drugs affect different people in a number of ways. Oh and if your incision was high above the ear then I have been told that meds fail to relieve headache pain in 40% of cases.

I sympathise with you coz until I got my AN, I never went to the doctor, now, it's a regular event It seems like meds are not going to be the answer so you may want to try some mind control stuff to try and cope with the pain.

Laz

[staypoz]

Laz, can you elaborate on comment re headaches aren't helped if you had incisions above the ear?  Just curious.  I had a suboccipital and then two days post-op sprung a CSF leak form my ear and had to have a fat pack where they had to cut around the ear.  Headaches are my constant companion.

But have to report to everyone that I now have two weeks of self-hypnosis practice under my belt.  I sure don't know how it works and I can't get myself into the state every time, but I have had some real luck.  I've especially noticed that I have been going longer without my motrin.  I am working with a medical doctor who uses hypnosis for pain management.  I'm pretty excited about this.  Might be worth looking into, ann70.

staypoz

[Larry]

My neurosurgeon advised that the lower the incision (using the ear as a pivot point) the more responsive headaches tend to be with drugs. The converse applies in that the higher the incision, the less responsive.

That's all he told me.

cheers


Laz

[Larry]

Hi all,

Well i have been on Lyrioca for a couple of weeks now and I think I am going to finish with it. It is making me tired, not helping at all with the headaches and I am "apparantly" very moody. Actually, I feel rather lethargic as well.

I will be going back to neurontin which didn't have the same side effects on me and seemed to help the headaches a bit.

Laz

[tc]

I have been on Lyrica for the past 6 months, without any help with the headaches.  I thought I was going crazy because my Neurologist kept telling me that it should be working.  I just weaned myself off of them (don't go off cold turkey, it can cause seizures).  I talked with my Neurosurgeon, about Indocin, and he put me on a two week trial. After 9 months of sleepless nights and intense pain, it is finally under control!!!  Find someone to order it for you.  It is wonderful, I can live with facail paralysis and hearing loss, but the headaches were something else.  Thank you to Capt Deb for putting that info on the site, it was a life saver.

[Janet]

TC,

So happy to hear your headaches are improving. I was curious if anyone else was having any success with the Indocin, so thanks for the info. Indomethacin (Indocin) really works for me too. Make sure you protect your stomach by taking it with food. I think I was getting a little careless and after a year my stomach seems to be reacting to it. I am being more careful to take it with food now.

I get Botox injections in my head and neck as well. (No charge because I am in a study.) The combination of Botox and Indocin is the best I have found.  I've tried 2 kinds of anti-seizure medications and they did not help me at all. I felt like they made me dumb. I have my energy back now.

I am wondering if a Botox and a trigger point injection combination has ever been tried. Botox for the muscle tightening and a steriod at the cause site to replace the Indocin to reduce inflammation. I don't know how long I can take the Indocin, so I wonder if anything as effective is out there.

Janet

[Larry]

Indocin didn't help me. I was on Lyrica for only 2 weeks so can go straight into neurontin (back to the future). My neurologist - suggested I keep going with topomax even after I told him that my eyes were affected immediately I started taking them - geesh!!!

Anyway, I am back to neurontin and have now resolved my self to a life of pain and suffering.

Laz

[staypoz]

Janet, it's my understanding that you can only get a finite number of trigger point injections with steroids because the steroids can degrade the skin.  That's why my trigger points only contain an anesthetic.  I've gotten as many as 16 at a time and was getting them twice a week.  I'm now down to once a week or every 10 days and usually get no more than 6 trigger points zapped.

staypoz

[Janet]

Staypoz,

It is great to know that there is something out there that is getting good results. Do the injections take away all of your headaches or do you still need to take something along with the injections?

Janet

[staypoz]

Janet, I wish they took away the pain entirely!  But they released me from the tyranny of keeping frozen pea packs at home and at the office and I am able to walk virorously and garden without a guaranteed  headache.   They have not had the kind of impact I would like on the most severe headaches, my brainwrecks, but as you know, you take whatever relief you can get, and the relief I have gotten is significant.  My regimen is nerve blocks as needed, the trigger points, motrin, hypnotherapy, and a  great support network.  The hypnotherapy has helped me feel I have some control of the pain -- rather than having the pain control me -- and the nurse practioner who administers the trigger points at the pain clinic I go to said that is important. 

Staypoz