Neurotin (Gabapentin) to Topamax

[salamander]

Hello all,

In my continuing quest for a headache free day, I am once again changing medication.  Last summer I was on amitriptyline, which was not a fun experience - but I enjoyed the vast quantities of brownies that I ate.

Now I am on 2700 MG of Gabapentin daily plus 150 mg Ketoprofen with Maxalt as needed.  I still have daily headaches.  Well, maybe I shoud reword that.  Occasionally, I have a couple hours without a headache. . . 

My doctors and I agreed to try Topamax.  Has anyone had experience with moving from Gabapentin to Topamax?  Did you feel a difference?  I dread the period of decreasing one drug enough to start the other.  I hope it is worth it.

To summarize my current headaches, I have given each type a name for entertainment.  I welcome any input about what you think might be from the Gabapentin.

Ice Pick - probably the most common, with the stabbing feeling moving around randomly to different places on my head.
Vice - as the name implies, a large clamplike feeling encompassing my entire head
Shotgun headache - feels like the back of my head is missing.
New this week was the Broken Arrow headache, which felt like an arrow had entered my head and broken as it turned to exit the back of my head. 

Are these similar to everyone else's headaches?  I am at 15 months post surgery.

Still hanging in here. . .

Samanatha

[epc1970]

Samantha
My headaches alternate somewhere between the "Vice" and the "Shotgun" with maybe an "Ice Pick" every now and then. I am currently on 900mgs of Gabapentin and 100 mgs or Tramadol ER that for the most part keeps the situation fairly under control or at least tolerable.  I do not have any firsthand experience with Toapmax but had to let you know how much I enjoyed your headache names. I had only gotten so far as to realize I had different kinds of headaches but had not gotten so far as to name them-I'm sure I would have...it was only a matter if time. I hope the Topamax helps and thanks for the smile. 
Erin

[SML]

Hi Samantha,
It’s been 10 months since my retrosigmoid surgery and I still suffer from daily headaches also. In November, I sought out help for them and I am currently taking Gabapentin. Right now, I’m in an “I don’t know what’s going on” stage. I had a few good days when my dosage was increased to 900 mg, and then it was back to the headaches. My dosage was increased to 1200 mg a day, which I really thought was going to do the trick, but I felt like I took one giant step backwards. When I called the doctor for my weekly update, she reduced the dosage back to 900 mg. I was told to call back in a week again to report how I’m feeling! I wasn’t given anything else to take, so I’m a little confused here. By the way... I have been taking Ibuprofen all during this time. It's the only thing that seems to help me.

I experience the..

“Ice Pick” described as you said with the stabbing feeling moving around randomly to different places on the head, but add that more often than not, the stabbing is in the AN ear, the “Vice” and the “Shotgun” are exactly how you describe (by the way… thank you for helping me put a name to these. Much easier than having to describe the feeling that’s going on).

I have one type that I have named… The “Dream Headache”. As it suggests, it happens during REM stage, and it feels like a stick of dynamite exploded in my head. Everything… every inch of my head HURTS!  On the pain scale used by hospitals, I give it a 9 (a 10 for me is “get me to the hospital…. NOW”). It wakes me instantly, and dissipates to a tolerable level within ½ hour or so.

Wishing you good luck with the Topamax. Please keep us posted.
Scarlett

[Captain Deb]

Hi Samantha--

My experience with Topamax is chronicled here:

http://anausa.org/forum/index.php?topic=3982.0

I continued with the gabapentin 1200-1800 mgs daily, after I started the Topamax.  After two years on it I went off of it in April after I developed some liver issues (large cyst.)  I wanted to see if it was working or if the headaches had decreased on their own. After I weaned of the Topamax, I weaned off the gabapentin and boy did my headaches come back accompanied, as usual, by severe neck pain.  I am now back on 1200 mgs of the gabapentin.  I believe I did get quite a bit of relief from the T, but I also had the side effect of being depressed a lot.  One of the most helpful things I did was get occipital nerve blocks at my local pain clinic.

Last Tuesday I had my first Botox treatment for headache--about 15 shots in my forehead, temple, upper neck and shoulder. The doc said it would take 3-4 weeks to kick in--right now my eyebrows look a little funny--like I'm a bit mad (angry mad, not crazy mad) or something. I have had all of those headaches that you describe. My least favorite is the Red Hot Poker headache, which enters the back of my head and comes out my left eyeball.  That ones always fun!

I posted an article on referred pain here which may explain a lot of the wierd places these suckers manifest themselves:

http://anausa.org/forum/index.php?topic=11161.0

And an article on cervicogenic headaches here:

http://anausa.org/forum/index.php?topic=11161.0

I think most of my headache issues are neck related.  I had a bad neck with occasional occipital headaches before surgery and I think that the head clamp used to hold my head in place, and the position my head was in during my surgery is the main culprit.  At the symposium in Chicago, this issue was discussed at the headache workshops by both Dr Leonetti and Dr Ryzenman.  You can order CD transcripts of both workshops from the ANA.  Giving copies to your docs isn't a bad idea. 

Here's to more headache free "moments" for now--believe me I have been in your shoes.

Capt Deb

[Brendalu]

I am a fan of Topamax.  I started using it three years ago.  I was up to 400 mg. and never a headache.  I was worried about side effects so I was weened down to 50 mgs.  I am back at 250 and only on occasion do I have the "trainwreck" headaches.  For now I am using what works for me.  I hope you find something that works for you.
Captain Deb is our resident headache expert...she is much more daring than I am!
Good luck,
Brenda

[salamander]

Thanks for the feedback.  This whole journey sure is discouraging, and if Topamax makes me MORE depressed then that is scary!!  I am decreasing the Gabapentin and we'll see what happens.  I'm braced for multiple trainwrecks this week while decreasing.  Last night was the first one.

I look forward to hearing how the Botox works, Capt Deb!

Samantha

[bell]

I am 13 months post retro and I have been taking Divalproex (generic for Depakote) 1000 mg and Tizanidine 4mg for 2 months, every night before bed.  Then Imitrex when headache starts.  I take imitrex almost everyday and that is not good.  Headache behind the eye ususally occurs off and on all day,  and is usuaslly tolerable.  The "shot gun, blow off head"  occurs early evening and is 9 in pain.  I get Botox Feb. 10th and can not wait , hopefully insurance pays for it.  I am not sure where the injections will be, the Neorologists  is "fitting me into the schedlue. We really have not discussed the procedure in depth.  Hopefully insurance will pay, but  it does not matter because I need relief. 

Good luck I hope Topomax works,
Bell       

[epc1970]

I think that it is so intersting that we all have the same headache patterns....Bell please let us know how the Botox works-I have found that the Tramadol that I take takes care of most of the "shotgun" headaches.  I do not get too many of the "Vise" haedaches  but I would love to find a remedy for the "Red Hot Poker" behind the eye headaches so if the Botox works Bell please let us know!
Erin

[pjb]

I think that it is so intersting that we all have the same headache patterns....Bell please let us know how the Botox works-I have found that the Tramadol that I take takes care of most of the "shotgun" headaches.  I do not get too many of the "Vise" haedaches  but I would love to find a remedy for the "Red Hot Poker" behind the eye headaches so if the Botox works Bell please let us know!
Erin

I am getting older and since my surgery more forgetful but I remember reading somewhere due to the surgery from the drilling there is alot of dust and the surgeons put the gel foam to collect the dust but not sure if some still remains and this is what they say also causes headaches, along with problems with your neck especially if prior to surgery you had difficulties with neck pain surgery only exacerbates it.

Best Wishes,

Pat

[Larry]

All of the above describes my headaches (basket case inc i reckon).

Topomax - interesting drug. One of the side effects of that drug is POSSIBLE glaucoma. As my eye pressure is rather high, i didn't want to risk it. I now take 1500mg of neurontin. Any more than that and i can't stay functional at work.


Laz

[yardtick]

Any weight gain Laz?  Or blurred vision?  I'm off neurotin and on topomax because if weight gain and blurred vision.  Oh yeah good old memory fog, not pleasant.  This is just my opinion, it seems that these drugs just take a bit of the edge off, but nothing actually prevents the pain or a brain wreck of a headache. 

Anne Marie

[Larry]

Weight gain - mmm, just natural old age weight gain. I don't really monitor that stuff. No blurred vision.

Like the effects of surgery, everyone has a different outcome. That must apply to drugs as well.

I know the feeling where you get to the point of "praying" to have one headache free day, just one. If there is a 'greater power' somewhere, it has bypassed me and implied that I don't matter. Every night when i go on my walk with my two little pooches, i often say to myself, just one day, please, just one day!

Sort of like this sign i saw in the pub. It said free beer tomorrow!


laz

[Captain Deb]

I know what you mean!  I have not had a pain-free day since I woke up from surgery 7 years ago.  It kind of wears on you. The most I'm asking for is more pain-free hours in the day.

Capt Deb

[GeorgiaMei]

Hello Samantha.  I did switch from Neurontin to Topamax.  The Topamax was too sedating for me, but I later tried a "cousin" of Topamax--Zonisamide (also called Zonagran) , that worked better with fewer side effects.  I hope the Topamax helps with few side effects for you, and if not you find something to help soon,  Karen

[Captain Deb]

Just a word of warning if you are on either gabapentin or Topamax--please make sure to take calcium supplements--at least 1500-2000 mg a day.  Take them in several doses as the body can only absorb 500 mg at a time. Anti-seizure meds block calcium absorption to the bones.  Make sure you take Vit D with that as well.

Capt Deb