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Any help and ideas for treatment ? Hemicrania continua + hEDS


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Hi all, I wrote here in 2018 on behalf of a young girl in our finnish Cluster headache Facebook group (my post in this link). She was treated as a cluster patient but the diagnosis was not set. Now she has finally received a headache diagnosis for hemicrania continua but her situation has not improved at all. I will attach her post translated to english below if anyone has any ideas or suggestions what to do or try.

 

---translated message begins---

Howdy!

It’s been quite a while since I have last posted anything here, but I really am now at my wits’ end and do not know how much longer I will survive like this.

For background: my worst problem is 24/7 headache and more severe headache attacks that happen daily. And the vertigo and nausea that follow my constant headache.

I also very likely have hEDS that affects my overall health with symptoms it presents. My father has hEDS but I have not yet managed to get a diagnose although I fill all the criteria.

All my treatments have completely stopped at this moment regarding my headaches. I have visited a neurologist in january and I received my first diagnosis (hemicrania continua). The doctor was very appropriate and listened to me, and prescribed indomethacin. This medication was not suitable for me though causing nausea and vomiting. After this all the contacts have stopped. I am under the impression that I am waiting for a neurostimulation surgery but the situation is very unclear.

At the moment I have nothing that would help me with my pain so I am taking any suggestions for self treatments as well.

As years go by to me it feels I am getting worse, I have not even graduated from high school and I feel I am just a burden to this society, living with other people’s hard earned money.

I don’t want to be a parasite, I want to study and work. I want to earn my own money I can spend without feeling guilty. This idea just seems impossible with my deteriorating health.

I have been regularly fighting with public healthcare for over 8 years now and there is no end in sight. Generally I feel that no one wants to help me and my life is meaningless, when even doctors may treat me like an animal for slaughter.

So how do I pass this phase, how to carry on and not to feel like being a complete loser ?

What am I even looking for with posting this, I don’t even know myself, to release some bad mood and anger I have inside and to find support I guess. And I am sorry for my confusing text, it is hard for me to concentrate due to my aches.

I hope all of you are doing better in the limits of our pandemic and you are looking forward to nice and sunny summer !

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Hello Tony,

I know this is though... She said she tried indometachin, but did she go far enough to see if it actually works ? For hemicrania continua and paroxysmal hemicrania, indocin response is an absolute must otherwise the conditions are ruled out. So I would say, as long as there is no confirmed indo test, the hemicrania continua diagnoses is still unsure.

When I did mine, I was also very bad the first day I took it. I was very ill, and vomit the entire day and my stomach hurt terribly. But because it was so important to has this test done, I did a second attempt one week later, and what ? ... no side effects ! Just a bit dizzy and quite some stomach pain the first days. So there is a possibility if she try it a second time, the side effects will be less... it's worth a try. Another option is have indocin as an injection (if that is available in Finland, I don't know) but this way you bypass all the stomach and digestion problems it brings and with an injection, the patient is already painfree within 1 or 2 hours, while with pills, it takes a few days up to two weeks if you do it the first time. If I would be her, I would really try to get that indocin in my system somehow to see what it does.

Otherwise, for hemicrania continua and paroxysmal hemicrania there are unfortunately not so many options I am afraid. Topamax can work... but I don't know about anything else. I have been so bad myself for 8 long years and it is only since I got indomethacin that my situation has improved a lot ! But it is still a trade-off between the disease and this medication and try to find the best balance. 

I think she must also to find a good headache expert. Some are really good (try to look up some names from published papers) and if she documents her case really well, she can be surprised how fast she will be able to get a consultation.

Best Regards !

siegfried

 

 

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Indo is very hard on the stomach and many who take it take a medicine to protect their stomach. They should prescribe something to protect your stomach lining.

I am not surprised regarding your feelings. Any of the diseases we see here - different Headaches, can cause you to become depressed when you see no end in site for the pain that you are experiencing. Living with 'Life on Hold' is not easy. However, most of us find relief and figure out what, if any adaptations we can make to get our lives moving ahead again. It can and often does take time and can be terribly dis-heartening. 

By joining the community, you have found a whole new group of friends who 'get' your pain and frustration. They understand the mental burden that comes with feeling isolated and alone. They are the people who can help you with suggestions for pain relief and who truly feel your pain, anger and frustration. Use this resource by reaching out like you already did. It is there for that purpose too - so that you need not feel distressed or negative about reaching out. There is hope and there is life out there. We want you to have hope and live a full life. 

Just think, we all came together due to a terrible disease that most will never understand, feeling alone and pretty well ignored or deserted by the doctors who are supposed to help us. I truly feel that we have all been in that hole. And Clusterbusters and Tonys' Finnish site are both working to put people in contact and present data and personal information to help others get out of physical and mental pain too. They tend to go hand in hand with TAC's.

Hang in there!

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  • 9 months later...

Hi, I know I'm late to this thread but if it helps I just wrote an answer to a post by @Dipperabout Gliacin, a specialized extract of boswellia serrata. I believe they will ship it internationally from the US. It is an alternative to indo that does much the same thing as indo, but takes a bit longer to work, and most importantly has FAR fewer side effects. Here's my post:

 

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!

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P.S. I also wrote this in response to @Dipper, in case it helps your friend:

 

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.

 

I hope your friend gets better! I so relate to the part about not know how much longer she can survive. SO much.

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Hi @Tony Only,

Also, I just came across this today:

Oral glutamine attenuates indomethacin-induced small intestinal damage
https://pubmed.ncbi.nlm.nih.gov/15128285/

This study was done on rats, not humans, but it still might be worth a try. Here's an L-glutamine supplement from a brand I like (generally less fillers than others) on Amazon: https://smile.amazon.com/Pure-Encapsulations-l-Glutamine-Hypoallergenic-Gastrointestinal/dp/B000VYZG0O

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Thanks to everyone who have replied !

And thanks @trjonas - I have known Boswellia serrata to be used for CH but this is the first time I heard it's this much beneficial compared to indomethacin for treating hemicrania continua. I sent a link to this discussion to the patient in question and also shared this on Facebook, I think many may benefit of this !

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@Tony Only I'm very glad you found it helpful! I also greatly hope this will be helpful for many. I so want to help anyone (including me!) with HC, clusters, and anything like them. They are so hellish and disabling. 

One note / update: on another forum it was mentioned that Gliacin is taking an extra long time to arrive due to COVID. These folks (they have HC) said to expect this and if it works for you, to make sure to order your next bottle(s) far ahead of time. They didn't give a time frame but I have the impression from the way they wrote it that it was a matter of extra weeks, not just days. 

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