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02/23/2012 01:24 PM

omg I'm actually trying a new treatment(page 4)

leitheij
leitheij  
Posts: 115
Member

Tortoisegirl, How is the NUCCA working for you? While I was at my massage therapist, she recommended it. I had never heard of it before you mentioned it in your post. Is it helping the pain at all? How is the verapamil working?
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02/23/2012 08:45 PM
tortoisegirl
tortoisegirlPosts: 3245
Group Leader

Thanks for the input!

MattKay-I switched form sleeping on my tummy/side to my back awhile after my headache started as it hurts my neck now. The snoring and fatigue started sometime after that. So I don't have a sleep apnea diagnosis or anywhere near that as I had only 5 apneas the whole night (it would need to be per hour). But, with everything together (such as little rem sleep, snoring, mouth breathing, leg movements, and a few apneas), no wonder I feel tired. Are you on a CPAP machine for the apnea? Sleep apnea can cause headaches, but usually morning ones, not daily or 24/7.

Lisa-Yes side sleeping is supposed to be the best for all sorts of stuff. Just can't do it though unfortunately. I have however done the next best thing. I bought a 10 inch wedge pillow (it goes from your low back to your head to put you at an incline). Hubby sleeps better when I sleep like that so it must be doing something! Also trying methods to minimize mouth breathing such as Breathe Right strips and a chin strap (to keep my mouth closed). The ENT dr is for the purpose of ruling out something structurally with my airway though (wouldn't be surprised if there was something there that my change in sleep position and health have turned into a problem).

leitheij-No change with the NUCCA or Verapamil. Actually I've only gone to the chiro twice because the last two visits he had to cancel (sick). Sure hope that won't mess with any potential progress. If it works, you typically see some sort of result within the first few visits and are cured after 6-10. I am the type that is pretty apathetic about treatments until I see relief (very rare...I've never had any lasting at least!). I'm going to try the full 8 visits or whatever with the NUCCA and two months with the Verapamil. I'm much more optimistic about my new pain doctor as he is willing to tweak my narcotics to try to get me more relief on those (dropped from 50% to 20% relief in the last year or so due to tolerance and my doctor won't change them). Best wishes.

Post edited by: tortoisegirl, at: 02/23/2012 08:48 PM


02/24/2012 01:29 PM
mxgo
Posts: 176
Member

I went to a NUCCA chiro for about 16 to 20 sessions. It did not help me at all. After each session there was an increase in dizzyiness/nausea, and an increase in headache pain levels for about three days. After the three days, the headache was back to it's regular pain level.

The NUCCA chiro's x-rays did show that the Atlas vertebrae was out of line. Before each session, he did a themperature scan of my spine. The scan did indicate that my upper part of my spine was being aligned. However, when he repeated the x-rays after about 8 sessions, they indicated there was no change in the alignment of the atlas vertebrae.

The dizziness/nausea also occurs if any therapist touchs the area where the SCM muscle connects to the back of the ear.

That was my NUCCA experience, but as we all know every body is different.

Martin


02/24/2012 06:32 PM
tortoisegirl
tortoisegirlPosts: 3245
Group Leader

Wow I'm surprised you tried more than a few sessions if it made you worse. Back in the day I was pretty desperate and I kept going to a regular chiro who exacerbated my pain because he claimed he could cure me. lol. I'm definitely past the point of trying treatments which hurt me. I have felt absolutely nothing from the two adjustments. He did very very little...literally touched my jaw with something that made cracking noises. I bet he makes a crazy amount of money...his follow up visits are less than 10 minutes. Should be interesting to see how much he bills my insurance!

He seemed surprised when I said I had no change after the first visit. This dr doesn't do a temperature scan (that I know), but did do x-rays and works a lot off of your hip alignment. He also had me stand with each foot on a scale to see if I leaned one way? Seems kinda hokey but I have heard of some getting relief. I have some really tender spots at the base of my scull but have found I can have them worked on by a massage therapist if I first have my upper back worked on for about 45 minutes (ie. only the very end of the massage after my muscles are loosened up and only for a short while). No use making ourselves have more pain in our quest for less pain. Thanks for sharing. Best wishes.


02/24/2012 08:46 PM
mxgo
Posts: 176
Member

Kate, as you said "............ I was pretty desperate and I kept going to a regular chiro who exacerbated my pain because he claimed he could cure me."

Your statement says it all. I was desperate.

Martin


03/06/2012 07:13 PM
tortoisegirl
tortoisegirlPosts: 3245
Group Leader

A few updates. I've now had three visits with the upper cervical chiro and have been on the Verapamil. No significant change. I'l give the Verapamil a full two months though.

The bigger news is that I'm considering a trial with an occipital nerve stimulator with the front leads. Found a doctor in Seattle who works with Dr. Reed (in Dallas). Two problems (besides the obvious insurance, cost, time off work, etc).

(1) I have to get off the daily narcotics first. Could take months to do without too much discomfort since I'm on a decent amount of Methadone (which can be tough...might want to switch to something else when I get down some). I was kinda thinking of doing this already as I'm at the point they aren't helping much. I was leaning towards changing the meds or upping the dose though (and actually found a doctor willing to do so). Now I might choose to use that doctor to help me get off the meds, onto something short acting in a larger amount, and know I have the option to go back. I could be on the as needed meds which may work well if I actually have enough to take at work.

(2) Although there is a doctor in Seattle who works with Dr. Reed, and will do the trial, he strongly suggested I see Dr. Reed for the surgery. This Seattle doctor has only done about 10, and none of them included the frontal leads (he said he was most concerned about the cosmetic look of the forehead). At least he was honest...but, he didn't offer any of this up until I asked how many he had done. Hadn't considered travelling until now, but if I only have to go for the surgery (not a consult and trial as well), I guess that is better. And, its considering insurance covers it and I respond well to the trial.

So, we're going to consider everything, but I'm leaning towards trying to get off the pain meds (first step). If I can't do it within a couple months this will have to put off until next year as we have a big family & friends vacation planned in Sept and I don't want the surgery to get anywhere near there in case of complications. Hubby is scared but I think he'll be game for flying out to Dallas with me if it comes to it. I need to look into how long after surgery I would be ok to travel. I guessed 2-7 days. Lots of unknowns and looks like this is the beginning of a long and frustrating process. Best wishes.


03/06/2012 09:39 PM
Enbee
EnbeePosts: 1556
Senior Member

Kate, that is exciting news. I think it's probably a good option to try the stimulator trial given the meds aren't working that well for you at the moment. You can always go back to them later. It is a long process though to get off everything to do the trial, so definitely a big decision. It's encouraging that there have been a few people on this board lately that have had success with stimulators.

03/07/2012 07:42 AM
MaryR
MaryR  
Posts: 4122
Group Leader

That is really exciting. A lot to get done beforehand of course, but still the whole idea is exciting. I hope that the trial goes well and that insurance doesn't present any major problems.

03/07/2012 10:47 AM
ACsmom
ACsmomPosts: 400
Member

Yay Kate! I'm really excited for you! I hope all goes well for you.

03/07/2012 01:58 PM
leitheij
leitheij  
Posts: 115
Member

Good luck, as well!
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