Hemicrania continua diagnosis

[Dipper]

I have a recent changed diagnosis from CH to HC by neuro.  I have been prescribed Indomethacin, but find the side effects horrendous, anyone who can help out there? 

[CHfather]

You didn't whether the indomethacin is working.  If it is, are you confident that you're taking the right dose (could be reduced if it's a higher dose than necessary)?  Are you taking it along with something to protect your gut?

There are some treatments aside from indomethacin that sometimes help, but not as reliably. I believe that Batch (xxx) has suggested that the Vitamin D regimen can help with some hemicrania conditions. The literature suggests Celebrex, along with many treatments that are used for CH -- verapamil, Topamax, lithium, gabapentin.  There's at least one study in which vagus nerve stimulation helped -- that's what the Gammacore device does. 

[spiny]

Has it stopped your hits???? I'm thinking that it must have or you would not still be taking it. It is hard on your guts unfortunately.

[kat_92]

@Dipper 

I was on indomethacin for a while too because my doc thought we should give it a try. Absolutely horrible. I found that eating it with a meal (like a decent meal, not a snack) and drinking tons of water helped a LITTLE. But it made me feel drunk for hours. My headaches the day after taking it were worse than the ones I originally had. I mean I couldn’t even move my head. Anyway, it didn’t work for me, leading to my chronic CH diagnosis. It takes a few weeks to kick in so give it a chance if you can tolerate it. Good luck! 

[trjonas]

Hello @Dipper from another newbie... I too thought I had cluster headaches but other kind and knowledgeable people on this forum suggested I might have HC, so who knows... yet. I'm trialing indo now, but I wasn't actually sure if I'd be able to get it, so I looked up alternatives.

I found a really good alternative that medical studies have shown could be as effective as indo, but without the side effects, though it takes longer to take effect. It's boswellia serrata and there's a doctor in Arizona who specializes in HC and who now produces a specific Boswellia serrata extract, Gliacin, that he has verified effective in HC patients (and sometimes migraine and cluster patients, but it works fastest in HC patients). 

Here are a few snippets from what I found:

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Subjects with confirmed (demonstrated an absolute response to therapeutic doses of indomethacin) hemicrania continua (n=37) completed an extensive medical history detailing treatment efficacy, tolerability and safety that occurred while using indomethacin and specialized Boswellia serrata extract (SBSE) independently. 

Once at therapeutic doses, indomethacin took on average 3 days to become effective, whereas SBSE took 13 days. 
Migraine Disability Assessment Scores were 52 (pre-treatment), 20 (while on indomethacin) and 16 while on SBSE. 

Pre-treatment: 7.5 average pain / 30 headache days a month for HC patients
Indo: 3.3 average pain / 13 headache days a month
SBSE: 3.6 average pain score / 16 headache days a month respectively

The overall perceived benefit score (0–10) of indomethacin was 7.7 and 7.8 for SBSE. 

Subjects reported side effects with indomethacin 72% of the time and 15% of the time with SBSE. 

Side effects with indomethacin versus SBSE were nausea (38%/8%), dyspepsia/upper abdominal discomfort (29%/4%), fatigue (25%/15%), insomnia (25%/23%), poor concentration (21%/8%), “spacey” feeling (21%/4%), poor memory (17%/8%), bloating (17%/15%) and dizziness (8%/0%). 

SBSE was void of adverse events whereas indomethacin was associated with easy bleeding/bruising (5%), anemia (5%), anaphylaxis (5%), gastric ulceration (5%), intestinal ulceration (5%), lower gastrointestinal bleeding (5%), hemorrhoidal bleeding (8%) and impaired renal function (8%).

Source: https://n.neurology.org/content/94/15_Supplement/5250

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Boswellia extract may relieve migraine, cluster and indomethacin-responsive headaches. Boswellia serrata (Indian frankincense) has been long reported to relieve migraines

The dose of Boswellia was 350 to 700 mg three times a day. All four patients failed at least three standard preventive medications for cluster headaches, such as verapamil (Calan), topiramate (Topamax), and lithium. It is very surprising that an herbal remedy helps what many consider to be the most painful type of headaches. 

Dr. Eric Eross reported that Boswellia extract was also reported to help another very severe headache type – indomethacin responsive headache syndrome. Of the 27 patients with this type of headaches who were given Boswellia, 21 responded. The starting dose was 250 mg three times a day and then the dose was increased as needed, although it is not clear what the highest dose was. Indomethacin is a very strong non-steroidal anti-inflammatory medication, but it also tends to have strong gastro-intestinal side effects.

The mechanism of action of Boswellia is not entirely clear, but it seems to have anti-inflammatory properties similar to aspirin. Obviously, it does more than that since aspirin is usually ineffective for cluster or indomethacin-responsive headaches.

Source: Written by Dr. Alexander Mauskop, http://www.nyheadache.com/blog/boswellia-an-herbal-remedy-for-headaches/

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This is more about cluster patients but just in case someone happens upon my post later and doesn't have HC:

 

Extracts of Boswellia serrata have been clinically studied for the treatment of many inflammatory conditions such as osteoarthritis and rheumatoid arthritis (3). The resin from Boswellia Serrata contains a number of biological actives called pentacyclic triterpene acids, which give the extract its anti-inflammatory and analgesic properties, with boswellic acid the major active ingredient (4). These acids have been demonstrated to interfere with the body’s natural inflammatory response by inhibiting cytokines and leukocyte activity. 

The present study aims to evaluate the long-term efficacy of oral Boswellia Serrata (Sallaki H15) on headaches and disturbed sleep in (4) patients with CCH.

The effects were long-lasting in 3 patients (mean 15 months) and transient (6 months) in one patient. The rapid improvement of nocturnal pain within weeks is similar to the analgetic effect observed in recent trials using Boswellia Serrata in cancer pain.

The mechanisms of how Boswellia Serrata reduces pain in CCH remain unclear. Boswellic acids, constituents of Boswellia extract, have subsequently been identified as selective redox independent noncompetitive inhibitors of both 5-lipoxygenase, the key enzyme in leukotriene biosynthesis and human leukocyte elastase. Proinflammatory cytokines, such as leukotrienes, are known to play a role in the pathophysiology of CH. This study provides Class IV evidence that oral Boswellia Serrata (Sallaki H15) reduces the intensity and frequency of headaches in patients with CCH.

Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3620238/ 

*

The doctor's name is Dr. Eric Eross (the one who specializes in HC and developed a specific boswellia serrata for it). You can see much more info on his website at https://store.gliacin.com including recent research and testimonials by patients. (Sorry, I didn't save the home page link, just the store part of it) It takes a while for the Gliacin to arrive, though, so I ordered a 683 mg tincture and 500 mg capsules of boswellia serrata via Amazon in the meantime. Also, Dr. Eross will take emails from people wanting to ask questions about the Gliacin they ordered, how to take it, etc. The contact info is on his website but briefly, the phone number is 855.999.4542 and at least one of the email addresses is gliacin@live.com. 

I hope this helps you!

[trjonas]

@Dipper Also in the meantime via Amazon... you may be able to alleviate some of indo's side effects by using herb / spice extracts. I know that might sound silly but I'm taking indo now and ginger has actually done the trick, at least at low doses.

Turmerin is another I'm going to try, and I'm waiting for Marshmallow Root (coats and soothes the GI tract, guards against heartburn), plantago major / Greater Plaintain (counters irritation and inflammation in the stomach and bowels, combats gastritis, #3 :O, and can repair damaged mucosal tissue like the gut wall - I purchased a kind not made with Greater Plantain seeds, since its seeds can be a laxative which is not my intent), and Artmeisia (wormwood) which is said to prevent ulcers induced by indomethacin and has gastroprotective properties. 

I know the idea of herbs might seem kind of weak compared to formidable indo side effects, but I haven't found ginger to be so, and I had to detox off pharmaceuticals in order to bust (which I had just started doing when HC was suggested), and after the trouble of the detox from those, I didn't want to get back on another Rx to combat indo's side effects. Also, boswellia serrata (see my above post) is an herb, and it doesn't seem weak at all. 

Another person with HC on these forums was able to become pain free by busting, so that's another option, though he/she said it takes a pretty aggressive busting regimen to do it, as with CH.

Again, I hope this helps!