Neurostimulation for Occipital Headaches

[Mei Mei]

I went to see the anesthesiologist this morning as a followup for the Occipital Nerve Block I got ten days ago.   I am still getting killer headaches so he suggested Neurostimulation in the Occipital area...a wire implant with the wire extending all the way down to a box that I carry in my pocket...something like a tens unit.   He gave me a DVD to watch and a phone number of another patient that has one implanted to call and talk about.   It is done in the office and takes five minutes to do.   The website on the DVD says PowerOverPain.com .   He said if I were his sister he would tell me to do it.   I still have to think about it.  It also says St Jude Medical Center on it.   I don't know about having a wire coming out of the head and what it'll be like sleeping.   I'll give this patient a call later and see what she says.   I wish there were better alternatives to getting the headaches zapped.   He gave me a shot in the neck and base of the skull today when I asked for Botox.   After he did it I asked if it were Botox and he said no, Botox is too expensive.   What a disappointment.   If Botox is too expensive, then how much is this machine he wants to put in my head?

Mei Mei

[Lizard]

Mei Mei,
I was really hoping you would have relief from the block, I do want to mention that I had a series of 4 blocks and they did build upon eachother...better coverage and relief after each.  I have heard of the implant, I say go for it, what do you have to lose?  Hopefully the patient you talk to has a good report.
Good luck,
Liz

[tenai98]

Mei Mei
I agree with Liz...go for it..(if the other patient loves it)
jo

[staypoz]

Hi, Mei Mei.  Dr. D. also recommended neuromodulation to me several months ago and I am still considering it.  I think Janet, who used to post frequently on this board, had also considered it as a treatment option.

staypoz

[Mei Mei]

I watched the DVD and it wasn't for me.   It said that after you have the permanent implant you can't lift anything over 5 lbs.!   It's just like you were a newly post op patient.   It also never mentions headache patients but repeatedly mentions trunk and limb pain.   It doesn't target headaches at all.   I think he's off base.  It also discusses the possibility of infection and scar tissue.   I already have scar tissue issues and don't need more.   It's more surgery.   I was looking for something less invasive. 

I had another killer headache last night.   That's seven in a row.   The only night I didn't have a headache was when I took Benedryl and Zyrtec from an itchy nose when I cam home from a outdoor cafe.   I wonder if antihistamines are the answer.

Take care,

Mei Mei

[cin605]

Hmm....maybe its all related sinuses ,ear....hope you keep getting the relief you seek maybe a dialey antihistamine is the answer?

[staypoz]

Hi, Mei Mei.  I know what you mean about the DVD.  However, there have been a lot of studies about the use of neurostimulation for intractable headaches -- hemicrania continua, transformed migraine, migraine, etc.  I am going to do a little more investigation before I rule it out or in. 

Hang in there.

staypoz

[Mei Mei]

I wish I knew the answer....


Re: the nerurostim.  I am just worried about anything that warns you that after it's inserted you can't lift anything over 5 lbs.   I won't be the same person again.   I want to be the same person again, not an invalid.   It worries me.   What is the price for no headaches and no tumor?

Mei Mei

[Lizard]

Mei Mei,
I totally understand about the 5lbs thing, but how long does that last?  Is it just in the beginning or throughout the whole treatment.  Keep hanging in there, I know there's a treatment out there for you its just a matter of trial and error.  I wish I could give you a big hug right now...but a cyber hug will have to do XXXXXX.
Liz

[Mei Mei]

Thanks, Liz...It's permanently implanted in surgery like a BAHA so you've got it for the rest of your life...this wire hanging from your spine with a box at the other end.   I didn't know what I bargained for when I signed up for the AN surgery... the list of troubles gets longer and longer.   I just don't want to make this a part of my list just because I have killer headaches.    I'm going the non surgical route for my deafness and so I am for my head aches.   There's got to be a better way than what this doc has to offer.  I don't want to be bionic woman that can't lift 5 lbs.   My granddaughter weighs 12 lbs and I want to hold her.

On a positive not,  my father was in Out Patient PT last Spring to straighten out his legs that would go straight from sitting in the wheelchair for so many years.   Then in April one day he suddenly couldn't walk in the walker which he previously had done and couldn't walk the length of the parallel bars.  This regression was horrible and they couldn't identify why.  We went to a neurologist and he couldn't figure it out and back to NRH PT and continued through June when they discharged him because he plateaued.

When we got back from Asia, we got him admitted into the Adventist Rehab. Hospital here and after 5 days of 3 hours a day of PT, OT he used the walker across the room and walked the length of the parallel bars.   It was a miracle!   Everyone was SO happy.   They are such wonderful therapists.  Even though he's almost 96 they didn't give up on him and put him on every machine they had to get him going.   

My test of my bladder is on Wed. morning.  I hear it's painful.   Wish me luck.
Then if I have energy, off to NY while my father is out of the house.  There are great buses that leave from near my house and go to mid=town.

Thanks for the Hugs...I need them and a headache free night...hope it comes,
Hugs,
Mei Mei

[Antigone]

Mei Mei,

Alas I know well of what you speak.  And finally, after seven (lean) years because of a doctor I was sent to just over a year ago through national health in Italy, where I am also a citizen, I am  off tramadol and take only a very low dose of an antihistamine (10 mg) and 5 mg. of Flexeril  (generic= cyclobenzaprine) every evening.  So you may have hit on something with the antihistamines.  Also the nerve blocks.  I had been receiving them for ten months before they really kicked in.  Everyone is different, so perhaps you will need less long.
Good luck to you.  I aim to give you hope!
Antigone

[Lizard]

Mei Mei,
So happy for your father!  And enjoy the city, hopefully you won't wreck while you are there.  I've heard of the buses that go back and forth to the city and for cheap.  The earlier you go the better, and way cheaper than the train.  I could use a day in NYC myself...
Have fun,
Liz

[Captain Deb]

I've done a bit of research on the neurostim thing and I think the lifting 5 lbs thing is only for the first few weeks.  Also most of them will give you a "test drive" which is a temporary implant or attachment which will let you know if it will work for you.  Also, anything that can be implanted can be unimplanted.  Believe it or not, these headaches do ease up with time.  Have you tried a TENS unit?  I got one for my back, but I have been using it on my neck for pain that is almost always a precursor to a major meltdown. Hang in  there Mei mei!

Capt Deb

[Mei Mei]

I asked my PT about getting a TENS unit a few weeks ago and she said she never brought it up because of my Titanium plate and that we couldn't use it for the headaches when there is metal involved.

I just am gun shy of this neurostim and walking around with a wire sticking out of my back.   It's hard enough recovering with a loss of hearing and the skull being lumpy and numb and having headaches all the time, but adding something else to the list will just make me feel like less of a person.   I want to be brought to whole again.   Check out my thread on Vocal Cord Paralysis from a few days ago:   I can't walk up hills with friends or keep a steady pace at cross country skiing or jogging anymore.   My singing really stinks now.   Listen to me sing Happy Birthday to my grandson as my voice quivers on the Facebook page: SerounMeiMeiWang   Click Videos   Before the vocal cord surgery I couldn't sing so I am happy for that.  With each surgery we are chipped away at.   You take away a tumor but you also take away something else.

Thanks for the comments on antihistamines.  They really give me some sort of comfort and maybe take down the swelling, Antigone.

Great news, my cystoscopy showed a healthy bladder and a possible kidney stone so he sent me down the hall for a CT scan which showed no Kidney stone just some old irritation that healed.   Thank goodness.   That past two weeks of worry put to rest.  Thank ALL for your support.

Well, that's my post for tonight.

Nighty Night.
Mei Mei

[Lizard]

I asked my PT about getting a TENS unit a few weeks ago and she said she never brought it up because of my Titanium plate and that we couldn't use it for the headaches when there is metal involved.

Weird that the PT said this about the TENs unit.  I used one a lot and I know that other people here have as well...I have a titanium plate as well and have not had any issues.
That might be better for you than the implant, at least give it a try, it was my favorite part of PT...Heat and stim!  I can fell it now.
Liz