treatment options for NDPH

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New Member

Date Joined Jun 2012
Total Posts : 1
   Posted 6/20/2012 3:30 PM (GMT -6)   
I was diagnosed as having NDPH, in May of this year after suffering nearly constant severe headaches since the end of November 2011. I have been admitted a total of 5 times, and I have tried a number of treatments including: DHE, Zofran, Reglan, Phenergan, Dilaudid, Benadryl, Toradol, oral prednisone and most recently I was on a cocktail of DHE, MG, Valporic Acid, and Solumedrol. I have tried Topamax with no relief and which caused an increase in numbness and tingling sensations. I am now on Elavil 80mg, DHE IM at home, and Naproxen. I am seeing a headache specialist, who has suggested that I look into possibly trying Botox injections. I am trying to avoid them as well as being placed on narcotics. Is there anything else that has worked for anyone that I can suggest to my neurologist to try?
As far as testing goes, I have had 2 CT without contrast, 1 MRI without contrast, 2 MRAs without contrast, and an LP which had to be done with the assistance of flouroscopy and was followed 2 days later with a blood patch due to the massive increase in pain. My opening pressure at that time was 17 which is within normal limits, but they had to tip the flouroscopy table nearly vertical so I am wondering if the "normal" reading was a false one, because of the positioning of the table at the time they did the puncture.
As for the pain I am constantly sitting around 4-5 on a daily basis, and when I am having an 'attack' my pain spikes between an 8-10. During my most recent 'attack' (which has still not broken) I have had the range from a low of 7 to a high of 10 which has been going for 14 days, which is my second longest stretch of bad days since it all started. I dont want to go back to the ER for fear of being seen as either a seeker, or being admitted with little help. I would descibe my pain as if someone is taking a fire hot poker and stabbing me repeatedly in the left temple. I also have a total head pressure that feels as though my head is in a vice. Some of my other symptoms include severe dizziness and lightheaded, nausea, vomiting, numbness and tingling sensations on my right side, and eye 'twitches'.

Regular Member

Date Joined May 2007
Total Posts : 328
   Posted 6/22/2012 6:10 PM (GMT -6)   
Hi dea_lynn,

I'm a fellow NDPH'er and I'll try to explain some potential options. Obviously there are tons of things to try--even after my headache clinic told me that they had exhausted their available treatments several years ago I continue to try new things. I'd be able to temper this list much better if I knew how you've responded specifically to each of the medications you're on now and the ones that were administered to you in the hospital, but I'll post some suggestions that come to mind.

Preventative medications
  • While Topamax didn't work for you, other anti-seizure meds might, in particular Zonegran and Valproic Acid (you mentioned having it in the hospital but not at home, I believe).
  • Anti-inflammatory medications can help keep the pain in check and there are plenty available that are a lot more potent than Naproxen. Some you'd take as needed, like the Toradol you were administered in the hospital, while others are sometimes prescribed to take daily. One of the most common is Indomethacin though there are a ton of others.
  • Antidepressant medications often are useful in treating headaches as well as being helpful in maintaining mental health. Elavil can be helpful, though it's a member of an older class of antidepressant medications. The newer SSRIs like Prozac, Zoloft, Lexapro, etc. might be worth trying if you've been on Elavil for a month or two and don't feel like it's helping.
  • Beta blockers and Calcium channel blockers can sometimes be effective in headache treatment. Verapamil and Propranolol are examples, respectively.
  • Other medications don't fit into these usual categories. Neurontin (Gabapentin) and oral Lidocaine come to mind.

Other treatments:
I understand why you want to avoid narcotic medications. Ideally they should only be used when your treatment options have been exhausted--a circumstance that I hope you never experience but, if you do, it won't be for at least several more years (because there are a lto of treatment options).

I'm a little uncertain why you don't want to try Botox injections. They're a part of standard headache treatment plans these days and are truly not much of an ordeal. Another injectable treatment is nerve blocks. A local anaesthetic is injected into areas around nerves in your head, neck or face. If your headaches have any origin in neuralgia (nerve pain) this can be particularly helpful. Further, if this is particularly helpful, nerve stimulators can be implanted under your skin in the area(s) around the affected nerves which can keep the pain in check (I tried this is two areas, though it wasn't helpful for me).

Other things to consider are biofeedback training, non-prescription supplements like Magnesium, certain B-vitamins, feverfew, and butterbur, amongst dozens of others, making dietary and/or lifestyle changes (particularly in maintaining regular, good sleep), trying alternative treatments like acupuncture or hypnosis, TMS (Transcranial Magnetic Stimulation, a relatively new treatment that I'm quite interested in), and good mental health (consider seeing a therapist if you aren't already--constant pain takes a heavy toll on the body and mind and it's never too early to look after that).

Anyhow, I hope that you know that you have a lot of potentially helpful treatment options ahead of you. The ones that I mentioned are only a part of what's available.

Best wishes,

DX: NDPH (2003-present), CRPS (1998-?) possible Abdominal Migraine (2010-present)
RX: Lamictal, Indomethacin, Propranolol, Provigil, Viibyrd, Oxycontin, Clonazepam, Zyprexa, Melatonin, Magnesium, Boswellia Serrata extract (Boswellic acid)

CPAP for mild sleep apnea
PRN: Ketamine nasal spray, Oxycodone
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