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Posted By : deathbymigraine - 5/2/2016 12:37 PM
23 y/o F in LA. Constant 24/7 headache for exactly 3 years now. Tried everything.. except IV ketamine which is my latest and pretty much last option. I would be going to the K Clinic in West LA, where I would be given an IV of K for several hours straight, for 5 days in a row. My mom and I spoke to the head doctor there who was knowledgeable & reassuring (although he doesn't know my exact situation, how debilitated and how sensitive I am). He has seen lots of success with IV K and intractable pain, like headaches.

There are some blogs about peoples experiences but very few and little info. Who has had this done? This seems to be different from the Jefferson Clinic Protocol where it is inpatient for 24/7 for a week. I am so sensitive to anything and tripping out on a crazy drug with my anxiety, and having an IV in my nearly invisible veins is a scary thought. But desperate

Posted By : BnotAfraid - 5/3/2016 12:52 PM
I did this at Jefferson Univ in Phila PA in 3days my pain was gone.

It was good with only a few days of level 2 for about a month/

Then it started to rise again.

They tweeked my combo of meds and gave me home shots for break thru pain. However, the Imitrex nasal, works better for me.

I do not have normal magraines see my signature.

Peace and best of luck
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

Posted By : deathbymigraine - 5/5/2016 12:32 PM
Thanks so much for the response. Although we have different headache/pain, its not so different. And so far I have heard of almost everyone getting at least temporary relief (few days or weeks), and i Haven't had that since I was 20, and I'm about 23 now. I spoke to a girl my age who had a more similar condition and was in tears saying it was the best thing she ever did in her life, that she is completely back to normal. SHe's done it 3 times now since 2012 because each time gives her a full (more or less) two years of zero headache. She had it done where I would do it, which actually isn't the West LA ketamine clinic, but through my neurologist who is a top neuro in CA, who tried TMS on me. It sounds very promising. Especially considering I have dysautonomia/constant fight or flight.

Posted By : Urthona - 5/22/2016 7:45 PM
I have read that psilocybin can end cluster headaches.

Posted By : OnTheRocks - 5/30/2016 4:33 PM
I felt significantly better after undergoing IV ketamine infusions for trigeminal neuralgia. The effects are not permanent, but the procedure can be repeated if pain/headache worsen again. Between periodic ketamine infusions and nerve blocks I was able to stop taking opioid medication and resume a functional life (i.e resume college). I would highly recommend anyone with persistent and severe headache and/or nerve pain to look into ketamine.

Posted By : Tommys Mom - 3/9/2017 4:45 PM
wondering if anyone had success with tms for ndph?

my son has had ndph for 11 months, and depression or 10 years. they want to try tms on him, but I am nervous his headache may get worse, as there is some banging associated with the procedure. any advice onthat or ketamine would be appreciated. he did inpatient at Jefferson and he was fine for 2 weeks until the headache returned and he was so upset he took himself off the depression meds.

Posted By : Brian S. - 3/17/2017 11:45 AM
I am also interested in learning about this, or any other, treatment as nothing I have tried decreases the frequency or the level of headaches for me.

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