A New Hope

Yesterday I had an appointment at OHSU with a Dr. who specializes in Occipital Nerve Stimulation. Going to the appointment my wife and I were afraid the Dr. would say I was not a candidate for such a device, we were wrong. Much to my surprise we learned that I was a candidate for a nerve stimulator and as we have been feeling and fearing it is pretty much my last hope.

You may ask why pursue this when the Botox works well? The answer is simple Botox lasts for me around 2- 1/2 months followed by six weeks of complete agony if not heck. For instance the last five days prior to the Botox treatments I was taking no pain meds but two anti nausea meds, muscle relaxer, and for good measure blood pressure medication (the last two did not do any thing at all) and still I vomited 16 times (once 5 different episodes in one day). So when the Botox works life is good but when it wheres off  the headaches are completely unmanageable.   

So that leaves us with the occipital nerve stimulator. I still have lots of questions about it, but feel at-least there is hope in front of us to improve the overall quality of life and not just 60% of the year with the other 40% in a complete meltdown. But for now it is a waiting game as we can not pursue the stimulator until the Botox wheres off. If past history is an indicator of future results my prediction is sometime between May 8th - May 15th. I never thought I would anxiously await the return of my personal beast and in reality I am not, I just have hope for the future.

I will update the blog as I find answers to my questions and have results from our latest adventure. -SG

10:30 am and not going well

The last two weeks have been steadily getting worse for my husband.  The hard part about headaches for him is not only the the persistent vice-like pain in his head and the pain in his left eye, but the nausea that comes with it.  He is holding less and less food down.   In the past, it was common for him  to vomit daily, but now 2-4 times a day is his new norm.  He went to his Headache neurologist on Thursday.  After waiting two hours to see her, she pretty much said there is nothing more she can do.  She did  put him back on zofran, so he can take it at work to hopefully reduce some of the nausea.  He will now use pheragan at home and the zofran at work.  She changed his muscle relaxer back to one that did not work before.   Hmmm, REALLY?   Not that any of them really work any way. They only help a little or knock him out.   She also gave him vicodin, which the botox/ pain management dr doesn't want him to take due to increased chance of dependency and rebound headaches.  Additionally,  it doesn't make the headache go away,  just lowers the pain until it wears off and then he is back to full grown migraine.

The funny thing is she is his medicine prescribing doctor and has given up.  So now we need to figure out who can manage his meds.  One good thing she did was give him the name of the dr who does nerve stimulation implants.  Now, can we get the insurance to pay for it?  We will see on that one.

Today even on nausea meds, he is now thrown up 3 times in the 2 1/2 hours he has been awake. Lovely day already.    Good news is the Botox appointment is Thursday morning.  Bad news is that it is supposed to snow Wednesday night and Thursday morning and we live  over an our away.   If we have to reschedule it could be another couple of weeks to get in.  That would be mean more vomiting and I am not sure he can handle that. 

Pray for the storm to not come in until Thursday night, please.  

Note to Dr

This post is so I remember to tell the DR when  my first major headache returned after out last Botox treatment on Nov 11th.  I woke up about 5:45 with 7.5 level headache.  I was able to go back to sleep, but it remained upon waking up at 7 am.  It will be a phenergan day, as I am already feeling nauseous.

Tuesday 1/25, went to someones house to home teach them.  She is a smoker, while there headache went from mild/ almost non-existent to a level 8.  Came home and took phenergan  to control nausea.  Headache remained until Thursday when it went away.

Friday, no headache, but could feel base of skull was hurting quite a bit, so at  my wife's suggestion I used Flexal 54.  Within 20 minutes, went from no headache to a pain level 7, with lots of pain behind left eye.  Saturday was a moderate  headache, improving as the day went on.  Averaged about a pain level 4.

Sunday woke up, in severe pain, level 9,  but surprisingly without nausea  in the beginning. Was light sensitive most of the day.  Used muscle relaxers  3 times throughout the day.  By end of day pain level only decreased to a level 7. 

Since then this week it has bounced between a 2 and 6.  Often intensity varying within minutes from previous pain levels  .  Little pain, lots pain and back and forth throughout the day.  This not the norm for me, and may be due to Botox wearing off.

November Brings Round Two

Since the end of September my headaches started to come back. At first it was a day or two a week, and progressed by the end of October into a full on assault with migraines everyday. As stated in previous posts the Dr. I am seeing does not want me to take pain meds and I haven't taken them for my headache since June. Anyway because of this I was left with only a few tools to combat the headaches with, namely ice, biofeedback breathing and relaxation and lots of anti-nausea medications, which I sorely needed. I spent a good three weeks vomiting everyday if not multiple times a day  before I was able to get in and have another round of Botox treatments.  (Phenergan is great but you can't take it and work as it knocks you out.) Surprisingly I managed to only miss a half day of work because of the headaches what a miracle that was.

I am now just over 2 weeks post Botox treatment, and things are looking better. The headaches have decreased in intensity from about a 8-10 on a scale of 1-10 to a range 2-5. While they are not completely gone at this point, I feel I can breathe again and function, what a relief. I am grateful this treatment is working and pray it will continue to do so. If you are struggling with headaches like I do look into Botox it is certainly a viable option ( if you can stand the 20 or so shots in the face, temples, head and neck.) and is certainly a lot cheaper and less traumatic then the RF procedures I have undergone in the past. -SG

BOTOX: Clearly Not Just For Wrinkles Anymore

This article just came out from NPR.  It is nice to see the FDA back up something that is working for my husband.  Rather surprising the insurance company paid for it, because they hold a strict NO on any thing not FDA Approved.  Even the DR's office person was shocked it was approved and approved so quickly too.  All I know is it was a heaven sent blessing.  

The link is below to the article, but I also copied the whole thing below too. 

 BOTOX: Clearly Not Just For Wrinkles Anymore

Douglas Allen/iStockphoto.com Ready for your BOTOX shot?

Even old products can learn new tricks. Just ask BOTOX.
Late on Friday, the FDA announced it had approved BOTOX to treat chronic migraines in adults. That's defined as debilitating headaches for more than 14 days per month.
But this isn't the first time the anti-wrinkle cosmetic is steering its image away from a parlor game involving aging Hollywood beauties, pols, and wannabe "real" housewives from New Jersey.
  The therapeutic uses from this formerly controversial cosmetic derived from a deadly neurotoxin continue to grow.
Multiple injections around the head and neck are expected to help minimize migraines for up to three months, and there are an estimated 3.2 million migraine sufferers in America, says Allergan, makers of BOTOX.
Back in March, BOTOX was approved for muscle spasm of the elbow, wrist and fingers. It's now being studied for treatments of excessive sweating and overactive bladder, reports Aesthetic Medicine News.
And WAMU radio talk show host Diane Rehm has famously used BOTOX for a decade to control spasms in her vocal chords, even though the FDA has not approved this use.
BOTOX's new approval for migraines doesn't come cheap. It came fresh off the heels of a $600 million case Allergan settled with the feds over promotion of the product for uses not on the approved label — like migraines. But, the company's profits are expected to grow.
Allergan is also looking at more medical uses for the drug, Allergan Executive Vice President for Research and Development Scott Whitcup tells the New York Times. "We call it our pipeline in a vial," he says.

http://www.npr.org/blogs/health/2010/10/18/130644594/botox-clearly-not-just-for-wrinkles-anymore?ft=1&f=1001

Botox for reduction of daily headaches

I have been waiting for my husband to post an update on his headache blog. He really just does not like to deal with it.  I don't blame him, but I feel strongly that it is important to provide hope for others who are suffering.  There have been so many days I have felt like crying when we reach another dead end to solving this headache phenomena.  It came on just suddenly and has not gone away long term without some major medical intervention.

 We were so hopeful when we had cervical radio-frequency ablation. However, recovery time is long and the benefits for him decreased with each procedure.  The first two procedures lasted 3-4 months.  The last two were 30-33 days.   He had his last procedure in December.  It wore off in January.  It was not until the end of July and three new doctors later that Botox was introduced into the picture.  The goal is to use the botox  to paralysis the nerve endings where it was injected. He was told not to expect any cosmetic benefits.  (I didn't notice any either.)  The DR injected his forehead along his eyebrows all the way into his hairline every few centimenter.  Then she did the same thing at the top and  base of his neck and into his shoulders. 

The first few days he seemed fine.  The recovery from this procedure was quick and the lido-cane in the injection provided some immediate relief. It was about 5 days afterward that his headaches returned to pre-procedure levels.  They stayed there for 5 days and we thought the procedure did not work, but then it began to get better and better.  The Botox did not make the headaches go away, but they are much more livable. He went from having them be at a pain level of 7-9 daily for the last several months to 1-3 post Botox.  When they would rise higher than a 3 they came down pretty quickly. 

We were told to expect this to last 2-6 months.  We are almost to three months and he is having bad days every week now for the last 3 weeks.  So we know the party is coming to an end, but at least we finally have a new option.

Meanwhile,  the pain management doctor, requires that he not take any pain meds at all.  His old doctor told him not more than twice a week on his really bad days, but the new one says use of any pain meds at all, may be too much and cause the headache to be stronger.This is really hard on those hard days.  Thankfully there is anti-nausea meds to help when the pain is really bad. She also sent him to a pain psychologist, who worked on controlling pain through breathing and relaxing. He only had three visits with this DR, because it was more to satisfy the insurance companies requirements that we have done everything, should we need to proceed with  even more less traditional treatments.

Well that is it in a nutshell.  Hope anyone out there suffering gets the help they need.  Everyone deserves hope.  And when one doctor is out of suggestions, have them refer you one to another, then to another.  Some one out there has your answer.

Where we are today.

Rather than start from the beginning of the story I will start with where we are today and fill in the gaps as I go along. Today (meaning the current period in time and not today specifically) I still have a headache. It ranges in intensity from 4 out of 10 through 10 out of 10, and my vary in intensity through out the day. I have just received the results of an extension/flexation MRI and it came back completely normal just like all the other MRI's. This is frustrating for many reasons. It is widely believed by my doctors, myself and my family that the headaches originate in my cervical neck, some might call them cerviogenic headaches. While the neck appears to be the cause of the headaches, imaging of the neck shows little to no abnormalities. Over the course of the last 2+ years I have been prescribed 50+ medications many of which are to treat symptomatic problems such as nausea while the rest having little effect at permanently or in most cases even temporarily alleviating the headache.   Perhaps one of the most complicating problems with the medication approach to treatment is the most common medication used to treat migraines are triptans (Imitrex, Zomig, etc...) which I happen to be allergic to. I have posted the complete list and all of the things I have tried in earlier posts. Alas I must go to bed for tomorrow at 7am I have surgery scheduled for an unrelated tooth problem or is it?? One can always hope...