Author Topic: Headaches with no help  (Read 4841 times)

ritasewell

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Headaches with no help
« on: February 02, 2014, 11:49:23 am »
My husband is 53 and suffers daily from migraines. He is not able to work. He is in bed all the time. The only thing that helps in pain shots and that just allows him to sleep. He tried to work some until he started passing out with no warning about one month ago. He has tried all preventative and rescue meds. He has had surgery to clip the occipital nerve and Botox. The dr thinks it is Occipital Neuralgia. Absolutely nothing has helped except for about one month after the surgery he had no pain but then it started again. We are at our and and do not know where to turn.

Gloria Nailor

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Re: Headaches with no help
« Reply #1 on: April 28, 2014, 07:01:00 pm »
I am hoping your husband is doing better.  I have suffered headaches and migraines all of my life.  they resolved after my surgery but then I needed Gamma Knife treatment and they have returned 10 months after the radiation.  My heart goes out to your husband, daily headaches/migraines must be horrible. here's hope that we find a way to treat our pain.
4/2011 diagnosed with 3 cm AN on right side
6/15/2011 retrosigmoid craniotomy which resulted in SSD, severe facial paralysis
7/2011 gold weight placed right eye lid
5/2012 tarsorrpapny right eye
6/2012 woke up with a smile
1/2013 cranioplasty because a screw came out of my head!
6-7/13 regrowth, GK

leapyrtwins

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Re: Headaches with no help
« Reply #2 on: May 02, 2014, 10:20:18 am »
Search the Forum for posts by Capt Deb related to headaches.  I think you'll find them very helpful.

Deb has had a long history of AN headaches and has gone through numerous "fixes".  If I remember correctly, she finally found something to help.  Unfortunately, I don't recall what it was.

Hope your husband finds relief soon.

Best,

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

BellaHamilton

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Re: Headaches with no help
« Reply #3 on: December 26, 2017, 09:14:51 am »
Hi,
Hope that your husband feels much better.
I decided to share my experience, maybe it will work too for somebody.
My father suffered from everyday headaches and no treatment didn`t help, the dr concluded different diagnosis, but no one suited.
Then we tried non-traditional treatment such as acupuncture. It has taken few months, but the result was really fantastic and father`s headaches passed.
Maybe, it will be helpful for somebody.


sparrow

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Re: Headaches with no help
« Reply #4 on: February 03, 2018, 05:36:01 pm »
I hope your husband has gotten some relief.  I have had severe headaches for 1 1/2 years after retro surgery and they've recently gotten better.  I attribute it to several things.  Maybe he can test some of these to see if they help him.

1.  There is something about the position of our couch: if I sit there I will have headaches later.  I've heard reclining backward is not good.
2.  If I am on the computer for too long, I will get a headache.
3.  Sleep position - try to avoid sleeping on your stomach - it bends your neck.  Ideally, sleep on your back if possible.
4.  Diet - This is the hard one but if you are desperate enough like me, you will try anything.  For just ONE WEEK, try eating no dairy, meat, or oil and see how you feel.  For the first time in 1 1/2 years, I haven't needed Tylenol and Aleve around the clock.  This is the 3rd day without medicine and I am really amazed.  My head is still sensitive and I still need to be careful not to move too quickly and trigger it, but this is amazing.  Some cookbooks with recipes are by Alan Goldhamer, Caldwell Esselstyn and John McDougal.
5.  Sometimes fruit gives me a headache if I eat it on an empty stomach - so try eating it after something more substantial.

I hope he may be able to glean something helpful from this. 
Take care!



sparrow

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Re: Headaches with no help
« Reply #5 on: February 06, 2018, 06:24:16 am »
Someone else suggested Claritin-D and that helps.  They say it is safe to take it long term.

addisonsophia

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Re: Headaches with no help
« Reply #6 on: April 05, 2018, 11:46:16 pm »
It is great to come across all these suggestions. My brother works in front of the computer for almost the entire day and he gets headaches perpetually.
I will share these comments with him. I trust at least some of these will help him.
Thanks all of you!

Abetpds

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POST SURGERY HEADACHES
« Reply #7 on: July 23, 2018, 07:57:28 am »
Hi everyone
I completed my surgery -translab for removal of approx 4cm tumor on my left side.  Surgery was done in San Diego with Drs. Friedman and Schwartz.  Surgery took place on June 26th and lasted 9 hours. A sliver of tumor was left around the facial nerve to avoid facial paralysis. I also had the BAHA (Cochlear) abutment inserted at the same time.
I stayed in San Diego --Embassy Suites -  for a total of 24 days - just to make sure that I'd be near the doctors if any complications developed.  Came home (Augusta GA) on 17th July.  The plane trip was hard on me - head seemed to have  a lot of pressure causing my left ear to feel like it would pop any minute.
Soon after surgery I had a slight droop of the left lip and my left eye did not close completely causing it to become dry and it felt like I had sand in my eye.  So I was visited by an opthalmologist who prescribed drops and ointment and  a patch for the "cornea abrasion"  It's much better now and the  eye closes completely.
For the next week after surgery, the pain was managed with Oxycodone and Tylenol and Advil, but after the Oxycodone ran out - the pain was pretty severe.
For some reason I thought that the pain would last for about 3 weeks and then I will be able to resume all previous activities.  WRONG!!!  My headaches are really bad -- all the way from the left neck where the skull meets the neck and radiates up over my head and under my left eye.  Also the top of the ear feels like someone boxed me. The place where the ear meets the skull is completely numb to the touch - but the worst is the sharp pain from the neck that shoots up into the head.
  For someone who has never had headaches before -- this is almost unbearable.  How long will this last?? 
The doctors are hesitant to prescribe any more Oxycodone and have asked me to manage with the Tylenol and Advil.  Is there something else that will help with the headaches?  Can you share your experience with me -- I am hoping that this pain will not become a part of my life from now on.  Thanks so much  Regina

kestes

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Re: Headaches with no help
« Reply #8 on: July 23, 2018, 10:49:04 am »
Hi Regina, I am sorry to hear of your struggles.  I live an hour from you Columbia, SC and diagnosed with AN as well.  I have been going to MUSC in Charleston and Duke and am watch and wait as of this point - 12mm AN so on the small side.

If you are on Facebook, join the sites there as well, sooooo many people post about headaches and between this forum and Facebook you might be able to find a solution to help you!

The sites are Acoustic Neuroma and then Acoustic Neuroma/Vestibular Schwannoma. 

Hope it gets better for you!!! 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
Next MRI May 2018
Columbia, South Carolina

ANSydney

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Re: POST SURGERY HEADACHES
« Reply #9 on: July 23, 2018, 05:47:31 pm »
Hi everyone
I completed my surgery -translab for removal of approx 4cm tumor on my left side.  Surgery was done in San Diego with Drs. Friedman and Schwartz.  Surgery took place on June 26th and lasted 9 hours. A sliver of tumor was left around the facial nerve to avoid facial paralysis. I also had the BAHA (Cochlear) abutment inserted at the same time.
I stayed in San Diego --Embassy Suites -  for a total of 24 days - just to make sure that I'd be near the doctors if any complications developed.  Came home (Augusta GA) on 17th July.  The plane trip was hard on me - head seemed to have  a lot of pressure causing my left ear to feel like it would pop any minute.
Soon after surgery I had a slight droop of the left lip and my left eye did not close completely causing it to become dry and it felt like I had sand in my eye.  So I was visited by an opthalmologist who prescribed drops and ointment and  a patch for the "cornea abrasion"  It's much better now and the  eye closes completely.
For the next week after surgery, the pain was managed with Oxycodone and Tylenol and Advil, but after the Oxycodone ran out - the pain was pretty severe.
For some reason I thought that the pain would last for about 3 weeks and then I will be able to resume all previous activities.  WRONG!!!  My headaches are really bad -- all the way from the left neck where the skull meets the neck and radiates up over my head and under my left eye.  Also the top of the ear feels like someone boxed me. The place where the ear meets the skull is completely numb to the touch - but the worst is the sharp pain from the neck that shoots up into the head.
  For someone who has never had headaches before -- this is almost unbearable.  How long will this last?? 
The doctors are hesitant to prescribe any more Oxycodone and have asked me to manage with the Tylenol and Advil.  Is there something else that will help with the headaches?  Can you share your experience with me -- I am hoping that this pain will not become a part of my life from now on.  Thanks so much  Regina

Regina, I'm curios. I hope you don't mind me asking but back on May 6 of this year you stated that your tumor was i am 70 years old with a tumor 29.1 mm x 28.1 mm x 29.1 mm. In the above post you say it is approx 4 cm. What happened in those 2 ~ 3 months?

Patti

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Re: Headaches with no help
« Reply #10 on: July 24, 2018, 06:13:52 am »
Regina  -  Find a cranio-sacral doctor.  Look up their procedure. It took a long time but it really helped.  Patti
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

buzneg

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Re: Headaches with no help
« Reply #11 on: August 13, 2018, 05:12:25 am »
They just switched me back from Indomethicin to a larger dosage of Dexamethosone and it seems to be helping.

Certainly less headache and dizzyness ... both less often and quite a bit less severe.  This is approx. 6 weeks after GK.
March 1, 2018 - Hearing loss left side, acute vertigo
March 2, 2018 - MRI show 13 x 7 mm AN (probably growing)
May 2018 - ENT/audiologist indicate 100% hearing loss on left side is permanent**
June 29, 2018 -  GK at Wake Forest in NC
**may still be able hear tones from 800hz - 1600hz (?)

 


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