Author Topic: Randomly found headache relief and wanted to share  (Read 3143 times)

Trinityfilled

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Randomly found headache relief and wanted to share
« on: April 03, 2017, 09:59:04 pm »
Hey everyone! Little background: I had retrosig surgery June '16 for a 3.6x3.4cm AN. I had severe surgical headaches since the surgery. I had gotten some improvement by about 4 months out, but then plateaued in my progress. I was getting debilitating headaches at least 3-4 times a day and since I'm only 33, I worked hard to manage them without pain meds. A few weeks ago I woke up nearly deaf in my only working ear (R) and panicked. I rushed to the Dr, who diagnosed me with eustacian tube congestion after my hearing screen came back perfect. She recommended I take Allegra -D for at least 2 weeks so the congestion would go away. Within 24 hours my hearing returned to normal gradually. By the 48 hour mark, it occurred to me that I had not gotten ANY headaches since taking that first dose of Allegra - D. I've been taking the Allegra D for 2 full weeks now and have only had 1 headache and it was extremely mild. It seems the Allegra has significantly improved my headache status! Wanted to share since it seems like a simple and safe thing to try for the headache sufferers.
Diagnosed AN on 4/18/16, 3.6x3.4cm
12hr Retrosigmoid surgery 6/24 removed 85%
Second surgery, 6hrs, with Friedman & Schwartz at UCSD 8/7/18 for regrowth 3.3x1.5cm. Small portion left to preserve facial nerve.
8/15/18 CSF leak from incision after suture removal. Sutures replaced.

ANSydney

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Re: Randomly found headache relief and wanted to share
« Reply #1 on: April 03, 2017, 10:40:12 pm »
Interesting observation. Can Allegra D be taken long term?

It would be interest to see if the headaches can be turned on and off by going off and on the Allegra D.

Trinityfilled

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Re: Randomly found headache relief and wanted to share
« Reply #2 on: April 04, 2017, 06:01:51 am »
Yes! According to my doctor and my sister who is a pharmacist, Allegra D can be taken long term with no side effects. People stay on it for decades with no issues.
Diagnosed AN on 4/18/16, 3.6x3.4cm
12hr Retrosigmoid surgery 6/24 removed 85%
Second surgery, 6hrs, with Friedman & Schwartz at UCSD 8/7/18 for regrowth 3.3x1.5cm. Small portion left to preserve facial nerve.
8/15/18 CSF leak from incision after suture removal. Sutures replaced.

ANSydney

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Re: Randomly found headache relief and wanted to share
« Reply #3 on: April 04, 2017, 10:04:16 pm »
Good to hear that Allegra D works and that it can be used long term. If you ever decide to pause the Allegra D and test that the headaches do come back, we'd be interested.

jimh

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Re: Randomly found headache relief and wanted to share
« Reply #4 on: April 26, 2017, 02:38:53 pm »
Just found this forum! I am now at just over 10 months post-op for retrosig removal of AN, ~3cm. I am SO interested in the Allegra-D results you have had.

My doctor has put me on Indomethacin (Indocin) a NSAID that some people take long-term for arthritis. I take 50mg 3x daily, basically every 8 hours, with food. If I am very late or miss a dose of this the headache is still incredibly bad! I have described it as an ever-present headache that needs the anti-inflam. meds to quiet down. This works for me, but barely, and I am totally reliant on the Indocin. It's also depressing since the dr. keeps telling me it will get better over time and it hasn't. I also find that caffeine helps with this as well.

I might try the Allegra-D, but I can't imagine dealing with these headaches without the Indocin right now.
Diagnosed with AN ~3cm 4/1/2016
Retrosigmoid removal surgery 6/15/2016

gunns

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Re: Randomly found headache relief and wanted to share
« Reply #5 on: August 07, 2017, 03:05:41 pm »
Just found this forum! I am now at just over 10 months post-op for retrosig removal of AN, ~3cm. I am SO interested in the Allegra-D results you have had.

My doctor has put me on Indomethacin (Indocin) a NSAID that some people take long-term for arthritis. I take 50mg 3x daily, basically every 8 hours, with food. If I am very late or miss a dose of this the headache is still incredibly bad! I have described it as an ever-present headache that needs the anti-inflam. meds to quiet down. This works for me, but barely, and I am totally reliant on the Indocin. It's also depressing since the dr. keeps telling me it will get better over time and it hasn't. I also find that caffeine helps with this as well.

I might try the Allegra-D, but I can't imagine dealing with these headaches without the Indocin right now.



Just had a retro sig July 25th.  After surgery I had the standard headaches.  They are daily and they come and go lasting a few hours.  I was a coffee drinker prior to surgery, several cups a day.  The thought drinking a cup of coffee now turns my stoamch.  The thing in your post that I find interesting is that you said that it, coffee, helps with your headaches.  Do you know why?  Have you discussed this with your doctor?  I assume it's the caffeine but.......?

Cityview

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Re: Randomly found headache relief and wanted to share
« Reply #6 on: August 08, 2017, 06:15:58 am »
Gunns

While the headaches are most likely related to the surgery, one thing to consider:

Is it possible that you might be having caffeine withdrawal headaches? Caffeine is addictive and by suddenly not having it one can get headaches. I don't get headaches, but I do drink a lot of coffee. I would hate to think of what might happen if I stopped drinking coffee.

After one of my non AN related surgeries my nurse told me I was probably avoiding headaches by keeping up with my usual caffeine intake.
« Last Edit: August 08, 2017, 04:29:39 pm by Cityview »
5 years ww
small AN

 


anything