Botulinum injections, treatment of new persistent daily headache

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dmncf
New Member


Date Joined Feb 2010
Total Posts : 3
   Posted 2/5/2010 11:59 AM (GMT -6)   
I've been suffering from NPDH for over two years now.  This has dramatically affected my life due to me being a college student.  Has anyone been able to find a therapy that sucessufully inhibits the progression of this disorder.  I've been through approx. 12 plus drugs, but have been unsuccessful with any of the therapies.  Recently I've been reading articles on the use of botulinum injections at potnetial points of origins of the pain mechanism.  Has anyone had success with these injections?  What other treatments have you used?  I've used several drugs classified to inhibit symptoms associated to migraines but nothing has been successful.

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 2/5/2010 7:04 PM (GMT -6)   
Welcome,

Botox injections are considered one of the most promising new headache treatments. Due to the toxin's method of action--essentially inhibiting nerve excitation in neuromuscular junctions--it's much more likely to be an effective treatment if your headaches are the result of neuralgia or similar extracranial stimuli.

If you don't know whether your headaches may be the result of neuralgia, rather than just finding out if Botox helps you may want to give nerve block injections a shot. If they end up helping then there's good reason to suspect that neuralgia is playing a role. If it is, in addition to nerve blocks and botox injections, you have many good treatment options. At the more extreme end you might end up trying having a nerve stimulator implant. Several of us on this board, myself included, have tried this. There are also more conventional drug treatments.

More broadly speaking in terms of NDPS, in most cases you just need to keep trying treatments. In general, interventional acute treatments can be very helpful (IV DHE or Lidocaine infusion, for example) in addition to the right daily medication regiment. When it comes to preventative medications Neurontin is known as one of the most effective options for NDPH. There's another one that is considered particularly useful for NDPH--it's either topirimate or methylsergide, I can't remember.

Personally I've suffered through NDPH for more than seven years now and I've tried just about everything. I'd be happy to try to answer any further questions that you might have. One very important consideration when it comes to NDPH is remembering to be patient, especially when it comes to trying new treatments. Particularly when trying a new medication it's important to give it time--in the case of a new daily med, sometimes several months. While it is discouraging when nothing seems to be working and you don't want to waste time on something that isn't helping, it's much better to take your time now than to be wondering whether you gave something a fair shot in the future. You probably already know this but it's a very common difficulty--one that I've certainly had problems with.

Best wishes for better health,

Ben
DX: NDPH, Recovered(?) CRPS
RX: Lamictal, Namenda, Nardil, Piroxicam, Oxycontin, Clonazepam, Rozerem, Ambien CR, Magnesium (800 mg/d), Riboflavin (400 mg/d), Fish Oil (2000 mg/d)

PRN: Ketamine nasal spray, Toradol IM, Celebrex, Lodine, Zofran, Phenergan,
rarely: Migranal, DHE IM, Reglan, Provigil, Maxalt, Zomig

I can be contacted personally via email at korbnep@gmail.com.


InfiniteHope
New Member


Date Joined Feb 2010
Total Posts : 1
   Posted 2/24/2010 9:34 PM (GMT -6)   
Hey Ben!
I found your reply very useful and I was wondering if you had any further feedback for my particular situation.

I find myself in a very similar situation to dmncf. I am a college student who has been suffering NPDH for almost a year now and have experienced many changes to my lifestyle over the last 10 months(

Before I get into the specifics of my condition I want to give you some background.

The biggest mistake of my life: I was drinking at a party and decided to take a puff of a random joint, after coughing up the bitter smoke I asked what that taste was, they informed me it was mixed with peganum harmala. After a few minutes I noticed that I was something other that 'high' and began to notice my heart rate increase. As my heart continued to increase I decided to leave the party any walk home. By the time I got home I was scared that I was going to have a heart attack before passing out on my couch five minutes later.

Waking up the next morning! with a headache( I began to do research, and discovered that I had mixed peganum harmala, which is a MAOI, with beer, which is high in tyrosine, leading to a hypertensive reaction. I have had a headache ever since.

I have seen two different neurologist, had two MRI's, a lumbar puncture(pressure:21), and a CT scan, nothing remarkable. I have tried quite a few different meds with no success. I have had two nerve block treatments, which seem to take the pain away for about 24 hours by numbing the whole back side of my head but no positive lasting effects. the last treatment (a week ago) seems to have left my headaches worse than before(5/10------>6.5/10). I have tried acupuncture, which I heard is similar to botox injections, acting on the same pressure points, with no success but i only went to to 4 sessions.

I am currently very discouraged with my situation, I feel like my life is suffocating and there is nothing I can do about it. I am hesitant to try new meds because I cant sacrifice the side effects of drowsiness in my current demanding school curriculum. I have a healthy diet, I get plenty of sleep and I am always hydrated.

It seems as though botox injections, nerve stimulator implant, or neuralgia would be my next course of action.

My doctor recommended that I try taking a beta-blocker, what to you think?

I also plan to start physical therapy

Any advice or input would be greatly appreciate.

Thank you for your time

Sincerely,
Mike

dmncf
New Member


Date Joined Feb 2010
Total Posts : 3
   Posted 2/25/2010 12:19 PM (GMT -6)   

I am finding this to be phenomenal.  To have somebody in the similar situation that I am experiencing is thought provoking to say the least.  I have gone through chiropractic treatments, acupuncture, many medications, and several physicians to finally come to the conclusion that it is going to take months and possibly year(s), unfortunately, to find an intervention or proper therapeutic treatment. To be honest this, F-ING sucks, because school is much more difficult when you have memory relapses and other cognitive problems. We are in a similar situation.  I refused to take medications the physicians have recommended for me d/t the possible cognitive side effects r/t nerve impulse impedance, ex. Topamax. My undergraduate background is in nursing/biology which I find highly ironic anymore.  I have done research on Medline, a medical database, and the defining factor for finding a therapeutic treatment is each individual’s habitus.  I am on Amytriptyline, 50 mg at bedtime, and Verpamil 80 mg twice daily.  The amytriptyline allows me to have a sound and consistent sleep cycle which seems to help with the severity of my headaches but nothing past this point.  The Verapmil, is a beta-blocker, similar to Propranolol, which is used for many cardiac conditions.  I am on very strict diet; meats, fresh vegetables, and fruits… no alcohol in any amount at all.  I am looking into botox treatments, but have to wait for possibly approval for insurance.  I have a couple of questions if you don’t mind answering them.  Where does your pain originate does it radiate towards any direction?  Describe your pain? Is it consistent, and what is the consistency?  When you flex, extend, and rotate your neck describe to me what your feel?  When you previously mentioned that you are planning PT treatments did the physical therapist find anything related to the mobility of the cervical spine?   I am asking these questions to try and find a solution.  No physician can find a cause of my headaches so I am taking it into my own hands. Personally I went through a time that I thought I was highly delusional, and that I was manifesting thoughts of pain that weren’t actually there.  Obviously I am not and the headaches are for real.  If you wish to contact me via my universal e-mail feel free. dmncfree@yahoo.com  


Holly b
New Member


Date Joined Mar 2010
Total Posts : 1
   Posted 3/9/2010 3:35 PM (GMT -6)   
My son who is fifteen woke up on Nov. 4th 2009 with an ear infection and a headache. They have successfully cleared up the ear infection but the headache continues none stop. He is a freshman in high school and has been able to attend classes since before Thanksgiving. They have tried him on over 20 different medicines with no relief. He is a kid that has a high threshold for pain but is in constant pain and is sleeping only 4 or 5 hours at night. Right now he is on 2000 mg of neurotin and 75 mg. of nortripytline a day. Along with 10mg. of Ambien CR at bedtime. He also takes Multiple Vit. Vit D, Vit. B-2, and Magnesium. It is so hard to see your child in constant pain. We have also tried Acupuncture, Sacral cranial massage, Biofeedback, Chiropractors, you name it, we have tried it. We have an appointment in the next couple of weeks with Dr. Todd Rozen who is the leading person in the country on these types of headaches. My husband has done hundreds of hours of research on NDPH and this is how he found Dr. Rozen. I just pray that he can help him. Has anyone else been to see Dr. Rozen?
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