ANA Discussion Forum

Post-Treatment => Headaches => Topic started by: Captain Deb on May 21, 2010, 01:39:24 pm

Title: A few notes on headache meds....
Post by: Captain Deb 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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-4.gif)

Title: Re: A few notes on headache meds....
Post by: Mei Mei 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
Title: Re: A few notes on headache meds....
Post by: Syl 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
Title: Re: A few notes on headache meds....
Post by: Lizard 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
Title: Re: A few notes on headache meds....
Post by: lifeisgood 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
Title: Re: A few notes on headache meds....
Post by: Captain Deb 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 (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
Title: Re: A few notes on headache meds....
Post by: Mei Mei 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
Title: Re: A few notes on headache meds....
Post by: Soundy 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
Title: Re: A few notes on headache meds....
Post by: moe 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
Title: Re: A few notes on headache meds....
Post by: cin605 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?
Title: Re: A few notes on headache meds....
Post by: moe 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

Title: Re: A few notes on headache meds....
Post by: cin605 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.
Title: Re: A few notes on headache meds....
Post by: moe on May 25, 2010, 08:29:49 pm
Okay, hang in there. Have you tried balance/wii fit/yoga type stuff?
Maureen
Title: Re: A few notes on headache meds....
Post by: Soundy 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
Title: Re: A few notes on headache meds....
Post by: Cheryl R 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
Title: Re: A few notes on headache meds....
Post by: Captain Deb on May 26, 2010, 07:43:39 am
New FDA warning on proton pump inhibitors, which is what I've been taking for 3 years as a result of frying my stomach with ibuprophen.

http://abcnews.go.com/Health/MensHealthGERD/fda-warns-fracture-risk-heartburn-drugs/story?id=10746531 (http://abcnews.go.com/Health/MensHealthGERD/fda-warns-fracture-risk-heartburn-drugs/story?id=10746531)

I encourage anyone who currently taking NSAIDs to research foods and supplements with anti-inflamatory properties as a way to cut down on the meds. I am currently taking tumeric caps (brand name Gaia Herbs Tumeric Supreme)
drinking Nature Blessed Montmorency Tart Cherry Juice Concentrate (Mix 1/2 cup into a 2 qt pitcher of green decaf tea) and pursuing a gluten-free diet.  I'm going to have to stop the PPI's.  My local health food store has a complete holistic pharmacy with a nutritionist on staff.  There is a remedy called Acid-soothe that I'll be trying.  A balance disorder and fracture risk don't mix!

Capt Deb
Title: Re: A few notes on headache meds....
Post by: Soundy on May 27, 2010, 06:51:34 pm
Cheryl  ... the Tylenol is a was taking when it comes to the 6000 + ... that was before Lyrica ...

gonna have to work on finding a drug free or reduced drug way to not have headaches that put me flat on my back ...

have enough lyrica to go through to Tuesday at regular dose but will stretch it out longer doing half doses for next few days , then quarter dose then none for about 3 days ... I know my math here is off ... we counted pills and worked it out and wrote it down ... that is the only day I would remember how many I was to take each day ... after 3 days with none I will  start on neurontin at quarter dose for 3 days , 6 days at half dose then if I am having headaches go to full  ...  he has said that when I get to half that if I am not having headaches we will leave it there and see what happens ... if I start having headaches we will increase it ...

hope the neurontin works out without issues ... but in case it doesn't , I have named two steers that will be sold in about 3 months ... one is Lyr and the other is Ica ... they will pay for about 6 months worth ... who needs a newer truck ... 270,000 is not toooooooooo many miles ...

I was trying to explain to someone about my logic in plan to earmark the calves and shuffle dates on some bills and other details to keep us afloat and me upright ... they think I am nutz but also have a husband that pulled in $105,000 last year and have good insurance ... they just don't get it that I can't just go buy whatever I want when I want and medicine is not always a given ... I told them it was called Creative Financing 101 and I was teaching a course Tuesday night at the Rec Center

I need to get a plan in effect to come off headache meds if I can find something better that will harm me less ... probably wait til Day Camp is behind me and possibly til kids are back in school where I have more time to focus on me and what is going on with my body ...


Taking notes Captain Deb ...

 

Title: Re: A few notes on headache meds....
Post by: Captain Deb on May 31, 2010, 01:48:18 pm
Botox injections, nerve blocks, and an anti-inflammatory diet and natural anti-inflammatory supplements like tumeric and sour cherry juice is what I'm doing these days.  Only meds I'm taking are rarely Fioricet or rarely hydrocodone when it gets unbearable. Even gave up on the Imitrex, which I think I have become immune to.  I gave myself almost 200 shots of it over a 3 year period.

Capt Deb
Title: Re: A few notes on headache meds....
Post by: Mei Mei on May 31, 2010, 06:11:32 pm
Me Too.   Imitrix Injections do nothing for me anymore.   Too bad. 

I went to an accupuncturist today near me.   Spent 2 hours there with a $5.00 copay.   Can't believe she accepted my insurance!!!    First she gave an accupuncture treatment on the skull, occipital area and neck with electricity and a hot lamp.   Then in another room a laser treatment and to end the day we moved to another room and had a 45 minute massage that was the most incredible experience for my neck and occipital area and shoulders.   Here is hoping I don't have the two headaches I had last night.   

She wants me to come back twice a week for treatments.

Will let you know what I think of the effectiveness on the headaches.
Mei Mei
Title: Re: A few notes on headache meds....
Post by: Captain Deb on June 01, 2010, 09:57:32 pm
I was having accupuncture for a few months with variable results and no insurance to cover it.$120 a visit.  My last treatment triggered a level 10 2 day brainwreck and I never went back.  We are all different!

Capt Deb
Title: Re: A few notes on headache meds....
Post by: Larry on June 02, 2010, 01:13:47 am
I better go and have a bone density test and a liver test after the qty of neurontin I take.

Thx for the heads up.


laz
Title: Re: A few notes on headache meds....
Post by: Lizard on June 02, 2010, 10:09:30 am
Wish me luck I have an appointment in a little while, with the headache specialist to talk Botox!!!!!
I'm so sick of taking these meds!!!!

Liz
Title: Re: A few notes on headache meds....
Post by: bell on June 03, 2010, 02:03:27 pm
Thank you everyone for sharing their headache medicine stories.
Has anyone taken Depakote or Tizanidine to prevent headaches?  I do not think they really worked. Besides headaches from surgery I think I was also having rebound headaches from Alleve.  I was only taking 1/2 to 1 alleve every other day but my neurologists thinks  they could have been rebound.  I feel half and half.  I am ready to be free of all drugs as I am feeling side effects of drugs in only six months.       Weight gain, muscle and bone soreness, hair loss, tired...
I had 13 injections of Botox 3 weeks ago and I think it is working!!!!!!!!!! I have gone 6 days with no Alleve or Immitrex.  I am still having headaches but I have to sit and wait for the horrible pounding to go away.  Uaually 1/2 to 1 hour but I am getting better, I am toughing it out. YEAH!  I can go off Tizanidine but I am going to wait 1 more week and I will go off Depakote in 2 weeks. Hopefully I will get a good idea then what will happen. 
Also taking Tumeric and Mango juice to help inflammation.  Good luck to everyone and keep posting!!

Bell
Title: Re: A few notes on headache meds....
Post by: Mei Mei on June 03, 2010, 06:38:22 pm
I have good news to report everyone.   The accupuncturist gave me a treatment on Monday with a $5.00 copayment  ... they take my United Healthcare insurance and after the treatment they gave a laser heat treatment and after that a deep massage back and front.   You won't believe this but I haven't had a headache since Monday!!!!   I am going back for my second treatment on Sat. because she want's me twice a week.   I still have some stiffness in my neck but haven't taken any meds since Monday!!!!

I'm so so happy.   She really knows what she's doing.   She has an MD PhD and trained at Einstein in NY.

Wish you could come here and be treated by her.

Mei Mei
Title: Re: A few notes on headache meds....
Post by: moe on June 04, 2010, 08:33:40 am
Mei Mei,
That is excellent news! Acupuncture works for some and not for others, and it also depends on the person's credentials, experience, etc. , etc.
The fact that you have an MD acupuncturist is a bonus. Wow, and only 5 bucks. How many times can you go????? What a God send she is.
I spent a gob of money on acupuncture for the facial paralysis, which helped with some muscle tone, but ended up having my surgery 3 weeks ago on the face (different thread).
I would love to  find an MD acupuncturist who can cure my tinnitus!
Continued well wishes for headache free days. What a relief, and the extra bonus is you received laster heat treatment and a deep massage- sounds like heaven to me :)
Moe
Title: Re: A few notes on headache meds....
Post by: Mei Mei on June 04, 2010, 01:48:58 pm
I can go unlimited.   I'm lucky enough to have good insurance.   Dr. Yao is a very kind person.   She takes no copay from my father's home health aide.   My father's home health aide gave her a check for the copay and she saw her later that day in the hospital across the street and handed the check back as a professional courtesy.   She genuinely cares about her patients.    She called me up the day after my treatment and asked if my headache had come back.   This is definitely a first in my book.  I am going again tomorrow at 1:00 for a second treatment and will continue to go twice a week to maintain my neck and occipital area rehab.

Hope you can find someone as good.

Mei Mei
Title: Re: A few notes on headache meds....
Post by: bell on June 07, 2010, 09:32:54 am
Mei Mei
I sure hope you get some relief, please keep us informed on your sessions.  Sound great so far.
 I would be interested in advice that you can pass along.
Bell
Title: Re: A few notes on headache meds....
Post by: Mei Mei on June 07, 2010, 04:12:38 pm
Hi!   I'm home from my third accupuncture treatment and am feeling good.   I didn't have any headache last night, but did have a headache when I came home because I made the mistake of working for too long on some forms to fill out and after an hour of filling out the forms my neck was stiff again and then I went outside to walk the dog and the headache started.   This was my fault.   I should have come home and rested and relaxed, but I saw these important forms in the mailbox and started working on them.   Well, I took the Motrin and Tylenol and the headache was gone within half an hour.   

At the Accupuncture Clinic they massage the sub Occipital area  after taking out the needles.  The needles are in there for about half an hour and I fell asleep during the session.  It was very relaxing.    I asked my aunt on a phone call to Beijing about it on Sunday.   She is an internist in a hospital there.   She said you have to give accupuncture a long time not just a few sessions.   So I have to commit myself to this.   I am lucky that I have found a clinic that takes my insurance and that I have good insurance.   I don't know what I'd do without it.

Just remember if you ever have accupuncture, to come home home and stay off the computer or sit and write at a table.  You'll strain your neck and undo the wonderful things you just accomplished at the session.

I'd better log off right now.   Catch up with you later...

Mei Mei
Title: Re: A few notes on headache meds....
Post by: Lizard on June 08, 2010, 10:40:20 am
Mei Mei,
We have to remember to make ourselves listen to what our bodies are telling us.  I haven't painted my toes since before the surgery because that is just one of those activities that causes me great pain.  Remember to relax and refresh the body especially after treatment.  It is however good to hear that the meds kicked its butt quickly.

Liz
Title: Re: A few notes on headache meds....
Post by: Mei Mei on June 08, 2010, 02:57:25 pm
Thank you, I am home relaxing and heeding your advice.   It's hard being the head of household and recuperating at the same time.

News to share:   I finally saw the neurologist that I have been waiting to see about the headaches this morning.   The first comment he said after listening at length and examining me was why didn't I have Gamma Knife, they have Gamma Knife at Hopkins.   He sounded rather frustrated because my tumor was only 1 cm.   He moved to say that he was going on a limb to say that he thought it was nerve damage during the surgery and now I have cluster headaches but not in the same place as the usual cluster headaches.   He ended the appointment by prescribing me Verapamil which is a Calcium Channel blocker and will take about three weeks to start taking effect.   He told me to come back in a month and if this doesn't prove effective he would give me a nerve block in his office.   He told me to continue the PT and accupuncture as I am doing.

That's all I have to report right now.   Will let you know how Verapamil works for me.   I haven't read of anyone else on the forum using this.

Mei Mei
Title: Re: A few notes on headache meds....
Post by: moe on June 08, 2010, 03:10:28 pm
 
 The first comment he said after listening at length and examining me was why didn't I have Gamma Knife, they have Gamma Knife at Hopkins


Really! What's the point in saying that, and ruminating about what COULD have been done? It's not like you can go back and change your mind! Each treatment rather it be GK, surgery, CK has it's risks. I hope you weren't offended. I would have been miffed. >:(
Anyway, I hope he helps you with your headaches, and at least you have the acupuncture! It's a goon nap time. That's what I do during my treatment, so you kill two birds with one stone!
Maureen
Title: Re: A few notes on headache meds....
Post by: Mei Mei on June 08, 2010, 04:16:46 pm
I know.   I felt badly.   There was a long silence in the room.  Now I have these headaches to deal with.  I sure hope the Verapamil helps.   The naps in the accupuncture sure are great!!!   I will post Verapamil on a separate thread to make sure people notice it.   I've never heard of it as a headache med before.
Mei Mei
Title: Re: A few notes on headache meds....
Post by: Denise S on June 08, 2010, 05:33:18 pm
Thank you, I am home relaxing and heeding your advice.   It's hard being the head of household and recuperating at the same time.

News to share:   I finally saw the neurologist that I have been waiting to see about the headaches this morning.   The first comment he said after listening at length and examining me was why didn't I have Gamma Knife, they have Gamma Knife at Hopkins.   He sounded rather frustrated because my tumor was only 1 cm.   He moved to say that he was going on a limb to say that he thought it was nerve damage during the surgery and now I have cluster headaches but not in the same place as the usual cluster headaches.   He ended the appointment by prescribing me Verapamil which is a Calcium Channel blocker and will take about three weeks to start taking effect.   He told me to come back in a month and if this doesn't prove effective he would give me a nerve block in his office.   He told me to continue the PT and accupuncture as I am doing.

That's all I have to report right now.   Will let you know how Verapamil works for me.   I haven't read of anyone else on the forum using this.

Mei Mei

Mei Mei,  I am glad that dr. is trying something new.  BUT, one thing with doctors and trials is HOW will you (or anyone in that position) really know which thing is helping?   Since you just recently started the accupuncture and now a new medicine, it will be hard to tell which is working best.   hmmm    And as for his "why" question.....NO one should be able to ask a stupid question like that unless they have been told they have a tumor growing in their brain and have to be worrying about it, etc.  (my opinion anyways)
Title: Re: A few notes on headache meds....
Post by: Mei Mei on June 08, 2010, 06:34:36 pm
I know, good question Denise,   I was just thinking the same question myself.   I am now trying several things:  PT, accupuncture and now Verapamil.  How do I now which one is working?   I won't, but I am trying to zap this awful this from all directions.   I just got off the phone with a friend that is a nurse in Boston.  She said that she thought Verapamil was a good choice so I am hoping that I'll do well on this.   I only wish that I didn't have to depend on a drug and could go it alone with the accupuncture.

About the comment on my choice of surgery over Gamma Knife I guess he couldn't help but insert his opinion, now that I've lost my hearing and am having these headaches and increased tinnitus.   It was the risk that I took.  I wanted it out of my head.  How was I to know that the headaches would last this long?   I'm trying my darndest to get rid of them and move on to a normal life.  I spent half an hour filling out some forms for Social Security this afternoon and just looking down at the table to write for that long put me into another headache that took two hours to get rid of.   I feel like such a delicate flower.  It's ridiculous.

Well, talk to you all later.

Mei Mei