Hemicrania Continua; ONS & Occipital Nerve Block

[Jess]

Hi,

I am a 19 year old female who was dx with Hemicrania Continua about a year and a half ago. Since then I have been on Indomethacin with complete relief from my headaches. I take Indomethacin 50mg three times a day with meals. I also take Omeprazole 20mg 1x a day and Zantac 150mg 3x a day to try and protect my stomach from the Indomethacin (I have a hard time tolerating NSAIDs).

My neuro is trying to get me off the Indomethacin, and we have tried slowly lowering the dose but it hasn't worked. Everytime I try to step down to taking it twice a day my headaches come back.

All of the other medications that can sometimes work for Hemicrania Continua (at least the ones my neuro knows of) I have already been on before the Indomethacin and they did not work.

I decided to do some research on my own and did a pubmed search. I found a study done with Occipital Nerve Stimulators, that seemed to be promising (however, the study was hard to understand and perhaps I misunderstood it). The study was done with people with other types of headaches as well, and it didn't say which types of headaches had relief with the ONS.

This made me wonder if I would be a candiate for something like this, afterall I am young and who knows how long I will be able to put up with the Indomethacin.

However, I did have a Occipital Nerve Block done and experience no relief with it. Are the nerve block and ONS similar, or are they different things? Does the fact that I had no relief with the nerve block mean that the ONS wouldn't work either?

Is there anything else that you know of to work for Hemicrania Contiua?

Thanks so much!!

Jess

[Dr_prakesh]

There are a number of meds used as prohpylaxis other than indomethacin.
Which ones have you tried and in which doses / for how long?

[Jess]

I these are the meds I have been on in the order that I took them:

Amitriptyline 25mg (2 weeks) 50mg (3 weeks)
Nortriptyline 3 1/2 months largest does was 75mg
Carbmazepine (I don't remember what the dose was but I couldn't tolerate this drug I was sleeping all the time and couldn't keep anything down)
Lamictal (switched to this after I couldn't tolerate the Carbmazepine) I don't remember the highest dose I got to but I got to the end of the orange starter kit and then they had my stay at whatever that last dose was (4 months)
Lithium (I was taken off of this one pretty quick because it started to affect my thyroid) Don't remember the dose
Then the Indomethacin (I was placed on all of the other ones before I was dx with Hemicrania Continua) I have been on Indomethacin for 1 1/2 years.
Melatonin 2 weeks (don't remember the dosage, but it was a higer dosage for melantonin because I had more than one pill to take) I only tried this for two weeks because I couldn't take it any longer and had to go back on the Indomethacin.

These are meds that I was prescribed to use as needed for pain (for most of these I don't know the dosage and only tried them a few times):
Naproxen
Vicodin
Oxycodone
Darvocet
Soma
Baclofen

These are other treatments that have been tried:
Lidocaine patches
Botox
Wisdom teeth removed
Occipital Nerve Block

I think I got everything! It's hard to remember all of the things I have tried!

So far the only thing that has offered relief is the Indomethacin and if I try and lower the dose my headaches come back after a few days.

[Dr_prakesh]

How many pills do you take a month?

This is sometimes hard to answer precisely so I recommend you fill-out a good headache diaryover one month. The goal is to get you off pain meds and on to preventative treatment. Have you tried calcium channel blockers such as verapamil?

[Jess]

The only medicine I take for my headaches now is the Indomethacin I take 50mg three times a day. I think I would be able to get it down to 25mg once a day and 50mg twice a day but I am unable to get the indomethacin in 25mg.

My neuro has me using the Indomethacin as a preventive medicine.

So long as I am on the Indomethacin I have no headaches, so a headache diary would be empty.

Verapamil works for Hemicrania Continua?

[Dr_prakesh]

I have had good experience with verapamil in HC


An extract of a paper dealing with this is below and a link to the abstract is below that.

Hemicrania continua responsive to verapamil.Rajabally YA, Jacob S.
Department of Neurology, University Hospitals of Leicester Royal Infirmary, United Kingdom.

Hemicrania continua (HC) is a rare headache syndrome, typically responsive to indomethacin, although patients resistant to this drug have been described. Few treatment alternatives have been proposed in the literature. We here report a patient with HC whose initial excellent response to indomethacin faded but then responded remarkably to verapamil.

PMID: 16109126 [PubMed - indexed for MEDLINE]


http://www.ncbi.nlm.nih.gov/pubmed/1610 ... d_RVDocSum

[MG (Admin)]

Did you ever try the verapamil?

[eadsj2]

While I'm not the former interested party, I too have HC, just got diagnosed on Friday, 11/11/11 , after 4 months of constant h I had a hemiplegic migraine in July from a severe drug reaction, butalbital, and my doctor thinks that this hemicrania might be a result from that. I am allergic to many medications, so we haven't been able to try much, other than Vicodin for pain, which really doesn't work, and makes.me itch. I started Verapamil, 240 mgs., with Lisinopril, 20 mgs., right away, in early August, it hasn't helped my headaches at all. We added Topamax, and I'm up to 50 mgs in the am and 50 at night, but no change, I did a round of prednisone, for 9 days, 280 mgs. total, IV Depacon, on Friday, which left me in more pain than when I started, but helped to confirm my diagnosis, and then I started Indomethacin on Sunday, 25 mgs. 3xs a day. I feel all sorts of tingly, numby waves all over the right side of my brain, face, neck, ear... But my head is still killing me. I have horrid photophobia, phonophobia, motion sickness. I wake up grabbing my head in pain. I sleep under an ice pack, with a weight blanket on my head... I hope these sensations are from the Indomethacin, but I don't know. Will my pain, and all the other symptoms subside as the dose increases? I go up to 50 mgs. 3xs. daily next week. Oh, I'm also talking prescription strength prilosec, 20mgs, each am & pm, and 8 mgs of Zofran for my terrible nausea, I'm forever vomiting.

[MG (Admin)]

have you had a neurological examination or any other testss?
If so what did they show?

[richlewis50]

You can take up to 100 mg of topiramate twice a day. This has been proven helpful in some patients with Hemicrania continua. Tricyclic antidepressants at low dose are useful as adjunctive treatments for the type of pain that hemicrania continua is (neurpoathic). A particularly good one, with a low side effect profile, is Nortriptylline. One of the very useful medications which is becoming much more commonly used for neuropathic pain is pregabalin (also called 'lyrica'). I was recently started on this by a neurologist in Southampton, and take all three of these medications in combination. The effect of taking both the pregabalin and topiramate together has been very useful for me, so much that I have been able to cut down my indometacin from 150mg a day to 50mg a day. Maybe you should try the pregabalin?

[hjs]

Hi All,

I have information to share - for me a cure!

I am a 68 year old male and was diagnosed with HC 6 years ago. I suffered intense, unremitting headaches over my right eye almost 24/7. My specialist recommend the usual course of action, indomethacin. For me it worked, confirming the diagnosis, but unfortunately my stomach could not tolerate it. I was switched to Celebrex, it worked, but I could not tolerate it either so I was back to square one.

About 4 months ago I discovered a post on line recommending 3 mg of melatonin nightly. I figured it was worth a try, at least I would sleep well. Not only did my sleep improve, the headaches are about 95% GONE! The other 5% is either a) alcohol induced - I still can't resist the occasional cocktail or glass of wine or b) normal tension related headache. However, the unremitting throb over my right eye is gone - and this is the only thing I am using except for an occasional Excedrin to deal with the 5% remaining.

Bottom line is that I highly recommend melatonin to anyone suffering from HC - it is at least worth a try.

PS. I can directly predict that I WILL get a headache 2-3 hours after having a drink.