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Paroxysmal Hemicrania -> Day 4


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I am unfortunately back in a new attack cycle. 4th day now although I did not have  much problems with it and could function normal as indomethacin did a good job of stopping it.

Yesterday however, I took the last 50 mg in the afternoon so its working must have been finished overnight as around 6 am, I woke up from quite heavy subsequent attacks, hellish pain in my right eye and my nose stuffed I could barely breath. Tried to sleep a bit but could not and 8 am finally got up to have my breakfast with another 100 mg indocin. We are now 9:30 and the stuff starts to work. Pain in the stomach and dizziness is increasing but the headache is proportionally diminishing. No more attacks and the sharp continue pain in my eye is fading away. So all by all it is going to be an OK day but I don't know how many days more. It's getting time this cycle is over. Good we have a holiday tomorrow and Tuesday (Belgian national day)!

I am still trying to find a good trade-off between indomethacin intake and overall health. I take as less as possible but over the last year, my kidney function has diminished a little bit from 90 % to 81%. Doctor say its perfectly OK and no worries to take the indocin but my gut feeling tells me I better be careful. I try to take as less as possible and follow the guidelines from the hospital: Not more than 3 subsequent days and maximum 150 mg.

Oxygen does a terrific job on the migraine (very unusual) and zomig does an OK job but no way as effective as the indomethacin. I tried Imitrex injections lately and was very disappointed. It did not do anything and if I would have injected myself with 6 mg hot water, effect would have been similar.

My vit D levels are around 85 ng/ml so a good range but it does not make any difference on my headache situation.

All the best and courage to all those who struggling with a primary headache condition !

siegfried

 

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Siegfried, would it be worth it to try any of these supplemental or alternative treatments?  

https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf

"There are alternative medications that can replace indomethacin if needed, but unfortunately they are not perfect for treating hemicrania continua. Sometimes they can supplement a lower dose of indomethacin if that is all that is tolerated. Melatonin is a natural hormone with a chemical structure similar to indomethacin. A few people have had a complete response for their HC with melatonin alone, but more often they have been able to get relief with a lower dose of indomethacin while taking the melatonin. Alternative medications that may replace indomethacin, if it cannot be taken at all, include gabapentin, topiramate, verapamil, and cox-2 inhibitors (anti-inflammatories less likely to cause stomach bleeding). Even onabotulinumtoxinA, commercially known as Botox (Allergan, Irvine, CA, USA), has been tried in cases where other options failed or were not tolerated. Nerve blocks, injected at the back of the head on the same side as the pain, can be performed with long-acting anesthetics. Rarely, a nerve stimulator is placed with leads extending over the back of the head or neck, providing continuous low-level stimulation to the area."

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Seigfried, I was just reading this for another reason, and saw this info about an apparent way of treating HC.  Maybe it doesn't fit for PH, but I felt I should mention it.

https://jmedicalcasereports.biomedcentral.com/articles/10.1186/s13256-019-1986-y

"....  Patient 1, an 82-year-old Caucasian woman, presented with hemicrania continua with a partial Horner’s syndrome that was present for 2 years. She was unable to take indomethacin as she was on anticoagulation. After a C2–3 diagnostic facet injection, not only did she become pain free but her ptosis completely resolved. She then underwent a radiofrequency facet neurotomy with complete alleviation of head pain ...."

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17 hours ago, CHfather said:

would it be worth it to try any of these supplemental or alternative treatments?

Hi CH Father !

Thanks a lot for your responses and references !

Yes I read about melatonin before as treatment for HC and PH but haven't paid attention to it. So I think it is really worth trying and I will get melatonin and see what it does. 

I am on day 5 now and I feel it is running to it's end but the migraine is making it's entrance now. I know how to handle that one. So for indomethacin, I got the following:

Day 1 -> 100 mg, Day 2 -> 150 mg, Day 3 -> 150 mg, Day 4 -> 175 mg, Day 5 -> 25 mg. And that should be it for this time. In my experience, coverage from indometacin takes around 6-7 hours and so during the gaps between two doses, the PH tends to reappear.

I also know about GOM nerve block with medrol and lidocaine however it's a bit strange here. From the two major hospitals where I am for follow-up, one is doing it as a standard procedure and the other one not. I asked why and it seems to be a decision to go with a certain procedure or not. They will have their reasons why they don't do it.

What I also experience is that the indometacin becomes more effective the longer I take it. This seems to be in line with most hemicrania patients that can diminish their doses over time. 

Thanks again and all the best !

siegfried

 

 

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  • 3 weeks later...

Hey Siegfried,

A vitamin D3 level of 85 ng/mL only helps a little over 50% of CHers prevent their CH. The rest need higher 25(OH)D3 serum concentrations up to 180 ng/mL as illustrated in the normal distribution chart of 25(OH)D3 labs reported by 257 CHers who reported a favorable response to vitamin D3 in the online survey.

6pCJkDY.jpg

Granted, this data is from cluster headache sufferers not people diagnosed with hemicrania continua (HC).  That said, there is ample evidence that HC shares most of the same pathophysiology as CH which means it should respond to the anti-inflammatory regimen with therapeutic doses of vitamin D3.  I've worked with two HC sufferers who responded to the anti-inflammatory regimen.  Both took the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 at one 50,000 IU capsule/day for at least two weeks before experiencing a significant and lasting reduction in the severity of their HC.  They also took the Methyl Folate + vitamin B complex, which like the Bio-Tech D3-50 has a higher bioequivalence.

As you've already noticed, indomethacin is hard on the stomach and GI tract due to bleeds.  If you do continue taking it, experienced headache specialists familiar with indomethacin side effects suggest acid-suppression medicine due to this gastrointestinal side effect.

Take care and please keep us posted.

V/R, Batch

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  • 2 weeks later...

Hello Batch,

That is weird. After my results came in, I got a call from the doctor my Vit D levels were too high and asked me to stop immediately with supplementing Vit D.

I took my results then with me on my consultation with the headache specialist and there they said the same. Value is OK they say but should not go higher than that. So I did what they asked me and I stopped. I will restart supplementing again after the summer. 

I take indomethacin with pantoprazole most of the time.  

siegfried

 

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Siegfried,

What was your 25(OH)D3 serum concentration?  Here are my labs for serum 25(OH)D3, Calcium and PTH over the last three years.

hVz4sJb.jpg

My PCP understands calcium homeostasis and that I keep my 25(OH)D3 serum concentration this high to prevent my CH during periods of high pollen and mold spore counts.   Accordingly, he has no problems with it being this high as long as my serum calcium remains within its normal reference range and as you can see, it has.  Did your PCP run labs for your serum calcium and PTH?

Take care and please keep us posted.

V/R, Batch

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On 7/19/2020 at 4:53 PM, CHfather said:

Melatonin is a natural hormone with a chemical structure similar to indomethacin. A few people have had a complete response for their HC with melatonin alone, but more often they have been able to get relief with a lower dose of indomethacin while taking the melatonin.

I am taking melatonin now for a month. I don't know if accidental or not but it looks like headaches are gradually getting better. We have now again a period of unstable weather (it normally get bad then) but headaches stay very moderate - easier to handle. Yesterday it was a bit bad again but just 50 mg indomethacin was sufficient to get painfree for the rest of the day. Side effect of melatonin are very vivid dreams. 

So, Thanks for this recommendation !

siegfried

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  • 7 months later...

Hi @Siegfried,

I'm sorry for cross-posting this, but from my response to another person with HC taking indo on another thread, in case it helps you too...

*

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:

*

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

*

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/

*

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!

Edited by trjonas
Correct typo
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