Embolization Treatment at the Headache Clinic

[Lazarus]

Hi People,

I have suffered for 17 years, from the age of 18 until February this year 2014.

I visited Dr Elliot Shevel in Jo berg South Africa, and he performed a four day treatment on my including cauterizing 6 arteries around the facial area and embolizing 6 points inside the cranium, to reduce blood flow to the head.

He maps out the required blood flow to service your head and then reduces total potential flow while maintaining required flow. I still experienced some "weird headaches" for a month after the treatment, but have now headache free for 5 months and have been able to have a few alcohol based beverages It has been the worst phase for me to get headaches in also, being the winter months, and I haven't had one. I have gone from having 8 a day, with 4 odd imigran tabs and a couple of imigran injections, to being pain free, spending time with my kids, making up for lost time. If you haven't spoken to the doctor, you should look into it... the headache clinic.. South Africa. I am from Australia..

[ThatHurtsMyHead]

Lazarus,

I appreciate your comments if you're a real person, but honestly I for one am getting tired of reading about the TWO people with CH that have been treated at that clinic.  There are much better treatments than cutting and burning muscle and nerves on someone's face, head and brain!. 

That clinic is trying to drum up business at real peoples expense...

I don't mean to sound like a hypocrite, as I love hearing about people having pain free time, but it's VERY odd that the two people with CH that have success stories from that clinic are popping up in every forum all over the internet all of a sudden....  Looks like a sick-o's marketing from that clinic to me. 

If either of the two of you had been involved in the community BEFORE going to that clinic and getting REAL advice from those of us that are nearly pain free WITHOUT having someone cut on us...  You'd be preaching a different tune...

I don't mean to sound like a jerk, because I'm not...  But please stop bringing this subject up.  Your friend and someone from the clinic drops in here every few weeks and starts a new thread and it's really getting abusive of the people on this site, IMHO.  We're here because we DON'T want people cutting on us!!!  PERIOD....

J

[ThatHurtsMyHead]

Just so it's out there.  I looked at the posters profile.  He created a profile and a few minutes later made this posting.  He NEVER bothered to even read anything on the site. 

It's pretty clear to me that he's just an advertising campaign from this place in SA...

Admin,  I'd rarely make this request, but I'd plead the request to have this post removed as advertising spam that's being done incognito.

J

[didgens]

theres a lot of that on the menopause website I go to also ,,, sad ,,    

[didgens]

well ,, I came to this site seeking ANY kind of relief for my son.  If this procedure is real and it ever gets perfected and does in fact work someday I cant believe it wouldn't be instantly brought here to the US as an option ?  Im not opposed to surgery (I had so many myself, 2 hip replacements, gall bladder, etc etc etc)  I think its an individual choice.  I have been reading on this site for some time  and as of yet there is no one here that is permantly without pain ,, and isnt that the end game ?  just sayin,, I  also don't like someone who just joins a blog "anonomously" to make an add ,, but I just want a cure for my son too.   anyway ,, my 2 cents.

[CHfather]

didg,

my own two cents is that even if this works as described (for some people, certainly not all), there's no proof at all that they will be "permanently without pain."  permanent is a long time.  there are plenty of people at this site who have been basically without pain for long periods (and i think you can assume that there are others who do not hang around here after having achieved excellent results); and there are others who found lasting relief that didn't turn out to be permanent from one strategy or another.

if i've been following your son's case correctly, it seems to me that he has tried practically nothing that has helped people here achieve successful long-term results. busting, preventive busting, D3 . . .  maybe i'm wrong about that. but there are people here (and people here only rarely, such as brew and tingeling), who credit very long stretches of being pain-free or nearly pain-free to those three elements.

[Bejeeber]

(.....brew and tingeling), who credit very long stretches of being pain-free or nearly pain-free to those three elements.

And might I add they were experiencing some walloping chronic CH, which is that much more difficult to treat, but they're now enjoying very long remissions (just how long only time will tell).

So IMO at least they are now solidly in the category of former chronics.

[alleyoop]

(.....brew and tingeling), who credit very long stretches of being pain-free or nearly pain-free to those three elements.

And might I add they were experiencing some walloping chronic CH, which is so difficult to treat, but they're now enjoying very long remissions (just how long only time will tell).

So IMO at least they are now solidly in the category of former chronics. 

You can add me to that list of former chronics.

After being initially diagnosed as Primary Chronic CH, I spent seven years in chronic CH hell.  I was diagnosed as refractory CCH, and told that the only option (at that time) was a trigeminal rhizotomy.  That's when I began researching and advocating for myself.   

I have now been episodic for seven years, with my longest remission being 18 mos.  My current remission period is 12 mos and counting. 

I credit the turnaround to becoming my own best advocate, and trying a number of "tactics", if you will, to finally go from chronic to episodic.  These included busting with LSA, LSD and psilocybin.  But I also took clomiphene citrate for 4 yrs, and even spent 4 weeks in southern Mexico (thanks Stu), and got my first long respite of 6 mos toward the end of that stay.

If I had to try and nail down what worked best for me, I would have to credit busting and D-3.

[didgens]

I seem to have touched a nerve here.  Alley whats in mexico  ? Chfather ,, acutally we havnt tried much because my son really doesn't suffer like everyone here.  He did try the nasal imitrex but that did not work.  His first doc would not prescribe o's so I found dr kudrow who is familiar with CH's and we did get oxygen.  That is all we use. Since He hasn't had a CH since last January (over 6 months) I really am not planning on doing anything other than having him use oxygen only right now ? for someone who is an anomaly like my son, I just watch and wait for this condition to either leave, stay the same, or get worse.  Until there is some change then there is nothing for us to try really. 

[didgens]

take today for instance ,, not a headache ??? 2 the day before ... I know most of you here would be happy with his pattern,, but I think everyone regardless of how often they come wants them gone forever.

[alleyoop]

didgens, there is a theory (and that is all it is) that the closer you are to the equator, the less incidence of CH. 

alley

[didgens]

I was looking into that at one point ,, I started to look at all the members here on this site and note the state they are located in.  I was compiling a list to see if there was a pattern. 

SO did you go to mexico for sun-ray's or is there some place there like the Bomba Shack  ?

[CHfather]

Until there is some change then there is nothing for us to try really. 

didg, i can't see any reason why he shouldn't be doing the D3.  he has CH.  D3 helps.  for that matter, i can't see how preventive busting would hurt, unless you/he object to it for some reason (legal, moral, medical, whatever). 

i guess the "nerve" is the suggestion that a surgery, with potential severe side effects (and no promise of a "permanent" remission) is a preferable alternative to a strategy that works very well for many people, with no significant side effects (none that are known, in any event).

[alleyoop]

One of the original CB'ers who worked in D.C. retired in a little town on Lake Chapala, south of Guadalahara.  After being there for 4 wks, he went PF.  He was convinced that it had something to do with the climate.  National Geographic said that the area enjoys the second best climate in the world.  He convinced me to come down and see if it would work for me. 

I made the trip and stayed for 4 wks.  The day before my flight back to GA, I went PF after being hammered for my entire stay.  I was astounded that it lasted for 6 mos, and my friend came to the Second Annual CB Conference in Austin, and gave a presentation titled, "Changes in Latitude, Changes in Attitude", with Buffet playing in the background.  ;D 

Without going into detail, the CH did come back for him on several occasions, but he has been able to successfully bust each time, and go back into remission.   

So while this is an interesting angle and maybe worth looking into further, it is no magic bullet.

[didgens]

wow .. that's interesting .. so maybe a tanning booth ?? does that sound ridiculous ??? you know there are so many of them in my town I may just think about that ,, I used to go .. hmmm

My son never does see the light of day ,, he's glued to his X-Box 360. 

CHfather - no I have no objections ,, I even ordered the RC seeds and have a plant growning in my backyard (actually mostly in my neighbors backyard cuz it grew up and over the wall) but with no seeds or flowers.. its just that I bought the seeds .. was afraid ( and I think that's probably whats stopping me more than anything) to give them to him ,, then boom they were gone ??? they are so infrequent with him ,, Im sure the seeds I bought aren't any good anymore cuz I got them over a year ago

[CHfather]

My son never does see the light of day ,, he's glued to his X-Box 360.

All the more reason that, if only just for his general health, he should be doing the D3 regimen.

I bought the seeds .. was afraid ( and I think that's probably whats stopping me more than anything) to give them to him

I'd say that 95% of people who come here have some level of fear about taking RC/LSA. I would say that 99% of them have found their fears to be groundless once they took the seeds. This is not telling you to get more (since, yes, your current ones are too old to be reliable) and get him to take them.  Maybe the nature of his CH (Kudrow called it "atypical," if I'm remembering correctly(?)) is such that preventive busting (or busting during a cycle) might not help, or you might never know if it helped. But if you/he wanted to, since he's not desperate, you could start with a small dose, maybe something like 20 seeds (which not long ago was not considered a particularly small dose) or even fewer, see what happens, and gradually work up until you reached a substantial dose that still caused him no effects. If 30 cause no effects, which it most probably won't, you could confidently go up to 40.  40 is probably enough to do the job in (guessing here) 75% of cases. If he has no effects (or no undesirable effects) at 40, you could stop there, or you could try higher.  At these levels, increments of 10 seeds are not going to cause significant differences in "psychedelic" effects. (I put psychedelic in quotes because he's more likely to feel a little high, like a couple of beers, than to experience anything trippy.)

With surgery, of course, you can't really do that.  You're all in from the get-go.

I hope your husband is doing okay or better than okay (whatever that might mean in his circumstance).

(Maybe you're onto something. Maybe alley's remission was a result (or partly a result) of lots of sunshine boosting his D levels. And, yes, tanning beds also boost D levels.)

[ThatHurtsMyHead]

didgens,

++ CHFathers post on D3.  D3 is created in the human body by photons from sunlight.  So it stands to reason that if your son got more sunlight and/or was on the D3 regimen, he might do better.

Obviously those of us closer to the equator also get more sun.

J

[didgens]

thanks ,, i do encourage him to go outside ,, we have a pool for goodness sakes ..  He is Very a-typical ,, he has not had another CH since the 2 last week ?? and has even had some beers since then.  as much as all your patterns don't make sense at least theres a non-pattern pattern  (if that makes any sense at all) but with him there is compleately NO pattern at all ,, so will continue to work with the O's and watch all your posts here and learn from the masters.

CHfather ,,, thank you for the kind wishes.. husband has round 3 of chemo today.. only hope is to hold off progression for an indefinite time.