Author Topic: A few notes on headache meds....  (Read 19896 times)

Captain Deb

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A few notes on headache meds....
« on: May 21, 2010, 01:39:24 pm »
Just wanted to share a few things I have learned, and some of my experience, in the past 7 years regarding medication for headaches.  I now have some pretty serious health issues which, I believe, are a domino effect of having severe post-op headaches and being uninformed about the side effects of some of the meds I have been prescribed.

If you are taking NSAIDs--Aleve, (naproxen sodium) Advil (ibuprophen) for post-op headaches--never, ever, ever take it on an empty stomach. I used to have to take 4 ibuprophen before I could get out of bed, my morning headaches were so bad.  I was taking 8 to 10 a day until I took 2 of them once--and ended up in the emergency room with a severe stomach ache.  They referred me to a gastroenterologist who did an endoscope (camera down the gullet) and he diagnosed me with a severe and irreversable stomach lining irritation--I had absolutely fried my stomach.  I have been back twice to the ER with severe gastritis and am now on a proton pump inhibitor which I will probably have to take for the rest of my life.

 I also have severe acid reflux which causes me to have a permanent "lump" in my throat and puts me at risk for esophageal cancer.  No doctor ever told me not to take that huge bottle of Advil I went through my first year post-op on an empty stomach, so I am telling you now--I hope this saves you a lifetime of GI issues, which I am now dealing with.

At about year 3 I finally found a headache specialist who put me on Neurontin (gabapentin is its generic equivalent), an anti-seizure medication. A few months later I was put on Topamax, another anti-seizure medication.  I did get some relief from this cocktail.  Last year I was diagnosed with osteoporosis.  Another thing no doctor told me was that both these meds leach calcium out of the bones and a calcium supplement is essential--at least 2000 mg a day.  No doctor ever told me to get  a liver function test every 6 months either and I ended up with a 6 cm cyst on my liver.  I had to have it drained and the bozos at my little local hospital did it with no sedative and punctured my lung in the process and almost killed me. At first it reinflated and they sent me home and then it collapsed while my husband was at work and I couldn't get in touch with him right away.  When he finally got home he rushed me to the ER and I had to have a chest tube put in and stay in the hospital for 5 days.  Absolutely the most painful thing I have ever been through.  I ended up with nerve damage in my chest which still bothers me.

Right now I am dealing with the side effects of the osteoporosis, which I am convinced came from not taking enough calcium while I was on the anti-seizure meds.  Before I had my surgery, when I had dental X-rays, my dentist told me I had really great strong bones and would probably never have to worry about it.  I also worked out at the gym 3-4 days a week.  Right now I am dealing with severe sacroiliitis, which probably has to do with having thinned out bones. The stomach meds I have to take also cause bone-thinning. I am treating the osteoporosis with (more friggin) medication and calcium, magnesium and vitamin D.

Can anyone see a pattern here? Domino effect.

So, folks, please pay attention when you are taking medication.  These days I am not on any headache preventive meds and cannot take NSAIDs (which is making my sacroiliitis very difficult to treat)--I just wanted to give my poor old body a rest from the toxicity.  They do work, however you must pay attention to your nutrition while you are on them. Do your research on every medication you are prescribed!

Hugs and no more friggin headaches for any of us! (Yeah, right)

Capt Deb

"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Mei Mei

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Re: A few notes on headache meds....
« Reply #1 on: May 21, 2010, 04:41:56 pm »
This is just what I've been worrying about and warning people on this site and at my doctor's office.  I feel like nobody's listening to me and I keep taking the Motrin Topamax and Tylenol every night for these damn Post Op Head aches.   I am sorry I had this damn operation but I did and now I have to live with it. 
I feel for you and every one of us on this site.  What are we going to be doing about our liver, kidneys, bladder, GIs etc.   Already I am going to the bathroom every 15 mins.   It worries me and I am only 3 mos post op, not like you.   What's going to happen to me when I am years post op?   I have to solve this before too much damage is done.   

I am sorry, Capt. Deb that damage has been done to your system.   Yes, it is a domino effect and we see it happening before our eyes, yet what can we do about it without real help, I mean not Pharmaceutical help but an end to the headaches.   We don't want to be taking cocktails for the rest of our lives just because we had to have a surgery for an AN.  There's got to be a solution to this dilemna.   I feel for you and all of us
Sincerely,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Syl

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Re: A few notes on headache meds....
« Reply #2 on: May 21, 2010, 07:44:37 pm »
Capt Deb:

Great advice! This is why I chose to stop taking Pamelor. The neurologist warned me that the bad headaches could return. He also asked if I wanted to try different meds. I said no meds, please. I limit my tylenol consumption to no more than two doses/wk. I fear what the long-term effects of meds can be. I took a chance by quitting Pamelor, but even without the meds, I continue to see improvement in the frequency and intesity of my headaches.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Lizard

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Re: A few notes on headache meds....
« Reply #3 on: May 21, 2010, 09:55:17 pm »
Capt Deb,
I'm so sorry that you have experienced all these problems as a result of medication.  I totally understand how you feel about treating one issue, causing another and then taking meds for all.  Its insane, I only have one kidney and know that I would be in a whole different world of hurt if I damaged it.  I am taking indocin (indomethecin) which helps the headaches for the most part, but also destroys your stomach lining.  Therefore I take Prilosec so I don't get an ulcer and also have to have kidney and liver function tested every 3 months.  Its so scary to know that I can be doing permanent damage to my systems while trying to make myself feel better.  I am looking for other alternatives because I don't want "the toxins" in my system anymore!!!!  I've had the occipital nerve blocks done which have helped with morning headaches and the ones that start at the base of my neck, but its only part of the headaches....I still have other types so unfortunately I'm still on the meds.  I have cut way down on the Tylenol and only take it when I absolutely have to, but I'm waiting for the day when I can be free...IT WILL COME!!!

Well thank you so much for the advice and I really should take extra calcium and its partner magnesium....I think they even come in the chewable kind  :)  I love my chewable vitamins...would never take them if it wasn't for them!!!

As always you are the headache expert and I take your advice and concern for your fellow ANer's seriously...nothing better than experience.

Take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

lifeisgood

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Re: A few notes on headache meds....
« Reply #4 on: May 21, 2010, 11:30:32 pm »
WOW!!
THx for posting this.
Do you think Imitrex also has these effects/
I really appreciate you posting this.
I was on effexor, topamax, and a myriud of other thngs.
Only imitrex now as needed.

My son is on Topomax for seizures. He is 5 and does take many supplements . He is on 25MG twice per day.

Yes, I still get the face pain. I get it twice per month. It lasts 2-3 days each time. It sucks!!!!!
But, I just try to have faith it will get better. I am 6 years post op now. THe face pain started to get severe about 1.5 years or 2 years post op. It happens on each side. It baffles all.
I even had a mri of my trigeminal nerve. Nothing... I believe stress is a trigger. I've got lots of that. Started going to an accupuncturist who I love but still get them.
Went on the pill (another risky thing) to try to minimize them.

Prayers to you Deb.
Mary
Take care,
Mary
3.4cm AN surgically removed 3/04
by Dr. Wiet and Kazan at Hinsdale Hospital in Illinois.
Translab approach

Captain Deb

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Re: A few notes on headache meds....
« Reply #5 on: May 22, 2010, 09:19:03 am »
Mary,

You should really try to get cleared for Botox for your trigem pain and you can have a trigem nerve block.  Also Tylenol does not cause nearly the tummy damage that NSAIDs can.

A word about Imitrex.  I was giving myself Imitrex injections for about 3 years. It was costing me about $500 a month, which used up my deductible by April, and then I was paying full price.  (Add the $300 a month Topamax to that) I still take it but have backed off to the pill form because it went generic.  It is very hard to take it early enough to be effective, especially for the headaches that I wake up with.  Imitrex is fairly harmless UNLESS you are on an SSRI antidepressant like Prozac, Celexa, Zoloft, Cymbalta, etc.  You can get what is known as seratonin syndrome.

http://www.mayoclinic.com/health/serotonin-syndrome/ds00860

I suffer from depression (you here would never know that one considering what a jokester I can be!) and I take Imipramine for it, which is not an SSRI.  Amytriptaline (Elavil) is another non SSRI anti-depressant which is safe for Imitrex users to take. My neurologist said it was perfectly fine to take SSRIs with Imitrex, but HEY! It's MY BODY!!!

I, too, wish I had never had this operation and chosen Cyberknife, but what's done is done and maybe my life's mission is to help others.  I remember a woman on the forum (in its previous for as a listserve)
posting to me and saying "why are you having surgery for such a small tumor" and that really pissed me off.
Any newbies reading this--well I am just sharing my gut honesty.

All those meds I was on did help in the short term.  I believe that our bodies seek homeostasis and the nerves that fire that cause brainwrecks early on eventually quit attacking us so severely. Do your research on foods and sumplements that have anti-imflammatory properties.  Also consider the use of icepacks--they help more than you know.

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Mei Mei

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Re: A few notes on headache meds....
« Reply #6 on: May 22, 2010, 03:55:28 pm »
I agree with you for what I've gone through I think Cyber Knife is the way to go.   I only had a 1 cm tumor and I could have gone to Pittsburgh.   There are pros and cons.   Do you get headaches with CyberKnife?   Someone was desperately trying to convince me not to have surgery and I didn't listen.   He was sending so many emails to get me to go to Pittsburgh and I didn't go.   I was afraid of the radiation.   What a predicatment we were in.
On top of that I lost my hearing.   Such is life.   We have to move on and find a solution to this headache dilemma.

It can't go on forever!!!!!

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Soundy

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Re: A few notes on headache meds....
« Reply #7 on: May 24, 2010, 08:18:39 pm »
I have been on lyrica and it has been a life saver ... but my doctor has kept me in it with samples ... the company has not been sending him or other doctors in town samples lately and he is out and I will be in a week ...tih insurance that won't pay on it I can not afford lyrica ... next in line is neurontin but the calcium issues bother me ... I already have problems with calcium levels ... mom and both grandmothers have osteoporosis ... I have an upper plate and have had since I was 35 due to calcium absorption issues ... feel like I am playing with dynamite ... but 3 months of neurontin is only $60 where a month of lyrica is a bit over $200 per month ... insurance company will pay a little bringing it down to $175 a month if I buy it three months at a time by mail ...

went off everything a few months ago and gradually added back BP meds allergy pills ,  water pill  and then lyrica as I had the return of brain wreck headaches and was taking too many Tylenol (10-12 a day) and a few hyrdrocodone to knock them out ... with lyrica I use maybe 3 tylonal a day and 2 hydrocodone a month ... with lyrica I get up 5 out of 7 days with no headache ...with out lyrica I have morning headaches 8 days out of 7 (I know that doesn't add up , but that is my point ) ... not sure aht it may be doing to me but I am better with it ...

I don't think I have a question ...just wondering out loud
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

moe

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Re: A few notes on headache meds....
« Reply #8 on: May 24, 2010, 08:53:02 pm »
Thanks Capt Deb for this very informative post!
There are a couple of websites:
medscape and epocrates which we use in  home health. I think medscape is the better of the two.
Just register, and you can type in all your meds, get the contraindications and also just learn about the meds.
Just a tidbit for you.

My heart goes out to all you headache sufferers.
You can safely take up to 4000mg of tylenol/day without injuring the liver(according to recent study anyway). People don't even like that amount, so 3000 mg is a good bet too.
Yes, and ALWYAYS take motrin/ibuprofen/Advil/naproxen/naprosyn with milk or food. They all act the same.
Wishing you headache less days ;)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

cin605

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Re: A few notes on headache meds....
« Reply #9 on: May 25, 2010, 09:59:23 am »
I am currently taking 4 tylenol athritis and a tramadol,a flexiril and a lorazepam through out the day just to function.
How bad is the tramadol and flexiril for your interior?
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

moe

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Re: A few notes on headache meds....
« Reply #10 on: May 25, 2010, 01:02:23 pm »
Hi cin605,
I checked the epocrates web site, and these were the only contraindictions. So apparently okay for the interior. May increase seizure risk (don't think you have those!)


1. Flexeril <-> tramadol

caution advised: combo may incr. risk of CNS depression, psychomotor impairment, some combos may incr. seizure risk (additive effects)-----

2. lorazepam <-> tramadol

caution advised, consider lower tramadol dose: combo may incr. risk of CNS and resp. depression, psychomotor impairment (additive effects)----

How  is the combination of these drugs affecting your ability to get around and just do your normal thing? Is your balance/equilibrium any worse?
Hope this helps.

No worries about the liver or stomach. Check the bottle to see how many milligrams of tylenol are in ONE of the tylenol arthritis (I think it is 500 mg). So that would be only 2000 mg of tylenol a day, which is fine.

Hang in there :)
Maureen

06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

cin605

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Re: A few notes on headache meds....
« Reply #11 on: May 25, 2010, 05:42:01 pm »
Thanks Maureen.
I take the flexiril for muscle spasms in my head and neck,Tramadol and Tylenol for the pain in my head and neck.lorazepam for sleep and anxiety.
I have tried going a couple weeks w/o the Tramadol and flexiril and my balance did not seem any better..i was just miserable and off balance.Feels like my head constantly shaking w/o Flexiril.
i have tried a whole bunch of other meds for muscle spasms and none have worked.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

moe

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Re: A few notes on headache meds....
« Reply #12 on: May 25, 2010, 08:29:49 pm »
Okay, hang in there. Have you tried balance/wii fit/yoga type stuff?
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Soundy

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Re: A few notes on headache meds....
« Reply #13 on: May 26, 2010, 06:12:39 am »
I was taking 6000+ of Tylenol a day plus what Tylenol is in hydrocodone ... also have flexirol for muscle spasms in neck that are a post surgery thing ... don't have as many spasms but neck is always tight ... go through a set of stretches every morning and as needed several times a day and that keeps spasms at bay ...

was on Prozac for odd OCD symptoms that were cropping up but came off because it made me jittery and would rather worry about little nit picky things than be jumpy and nervous ...

I do run through Wii Fit and Fit Plus and something else I have on Wii to work on balance … at first I saw a lot of improvement but for a while it has got to a level and is just there… so I keep at it to help maintain that level and go about my life … most days balance is good … others not … on bad days I stagger and bump things so avoid china shops …

been reading and don't think I need to take the neurontin ... looking into black masks and banks that look easy to pick off so I can afford to keep taking lyrica ...

Moe ... gonna check the sites you listed when I can get to the library ... they are super slow loading here at home ... I have pills for blood pressure and to regulate heart rate , pills to keep kidney function up to par and then the lyrica for headaches with Tylenol for breakthroughs …

Some days I wish I had never had the surgery ... but when a tumor goes from between 3 and 4 mm to 3 cm in 6 months it is time to do something ... doctors felt that any radiation type treatment might cause the tumor to swell enough to put pressure on brain stem and stop my breathing just like the tumor growth would have ... glad to be here and breathing because my kids need a mom but hate the aftermath


slogging on in Tennessee
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Cheryl R

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Re: A few notes on headache meds....
« Reply #14 on: May 26, 2010, 06:59:52 am »
Soundy, Is there any way to lessen your Tylenol?      No more than 4000 in 24 hours.        Got to save the liver  too!
 Prozac made me jittery too.      GI problems with Celexa and Lexapro.       Did Effexor and went off as questioning weird dreams.   Dreams still there and wake me up every night.       So on none now too for the moment.         
   I wish I had better answers for you for the pain control!      Or wish for the best ins coverage which is the hardest part!
    Hope being able to talk to us helps a little!                                Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care