Bejeeber

Riding that horsey has to just be super FUN, with a capital WOW, and it looks quite pleased at the prospect itself - I bet you go for some full on speed gallops (or whatever it is the real fast horse riding is supposed to be called) out in the open! My enthusiasm is much derived from a personal bucket list item to ride a horse one mo' time - last time I was on a horse was as a 13 year old city/suburb kid, on some poor rent-a-horse that wanted to get back to the stable real bad and decided to race another horse - replete with jumpings over otherwise deadly obstacles - to get back there ASAP. It was a true highlight of my life experiences.

I just looked up and learned something about hydroxyzine thanks to Juss. He's turning us into a bunch of nerds.

Sage. Advice. Whoa - Happy ThanksBirthGivingDay, or however such a dual event is negotiated @BoscoPiko !

YES - an actual ray of hope.

Here's hoping the strangeness is a sign the infusions have Mr. McBeastBerry USA on the run! Contacting the Dallas Cowboys cheerleaders now.

While I know rebounds to be a very real issue, for my personal case of ECH, I've found a different perspective on this - I've experienced a couple not-busted cycles where I've aborted every single attack that broke through the preventative efforts (this could be like 6 attacks a day in high cycle), and I rode the entire 2.5 months duration out that way. Made it to the end, cycle stopped. Very luckily had long remissions afterwards. No particular threat (YET anyway) of going chronic. So for me, "abort 'em all!" has so far proven to be an effective and worthwhile strategy, in the absence of a full on busting-prevents-the-cycle-entirely success.

As your "all of our worst nightmares" level of CH has stubbornly persisted, at least these not as bad attacks following the second infusion do come across as a possible ray of hope. I don't suppose a high school football cheerleading squad in the parking lot outside the clinic chanting "Let's Go K Hole!", "Let's Go K Hole!" and performing inspiring acrobatics while you're getting an infusion would be realistically feasible to arrange, but count me as a member of a virtual squad cheering you on. Rustling up some pom poms now.

That is the impression I have also gotten (especially with their phosphatidyl serine for improved memory).

@Juss for the win! Don't be surprised to see me trying this one out - thanks man.

Hi @shrumsh, I recall discussing this here a little while ago. OK not so much a little while , more like 7+ years ago . Back then I was using the Solgar Vegetarian DHA but I don't think it was long before I reverted back to just taking plain old high lignan flax oil for my Omega 3s. I can't claim to have any particular evidence that flax oil is an effective substitute for fish oil in the D3 regimen though.

@Freud I suppose we've discussed it previously and I've just forgotten, but have you been considering (or reconsidering) DMT for the occasional abort, in order to help conserve O2 while awaiting the arrival of an effective preventive treatment? I figure if I'm aware of the abort effectiveness of DMT, you must be triply aware - sorry, pretty much just grasping at straws here.

I can say that I wouldn't expect magnesium oxide, which last I checked is the most common/cheapest form, to work for me with eye twitches.

Stuff like this is so encouraging to hear - and yep I won't be surprised if both you guys will be able to prevent your next upcoming cycles entirely.

I used to have an eye twitch - don't recall whether it was the cluster side or if it started immediately following a cycle, but I know it was occurring at the same time as a bunch of other CH pharmaceutical after effects. I read about magnesium supplementation possibly being able to fix the twitch, and when I tried it, it did go away (coincidence or no?). Magnesium glycinate seems to be one of the most often favored and advised forms these days. On the down side, when the twitching subsides, people may miss the friendly gesture implying a degree of solidarity or intimacy they've grown accustomed to with you winking at them constantly.

OW. Kudos though for finding such an evocative description. Meantime, just consider me one more from the legions of @spiny worshippers , and I'll say your description doesn't sound like typical cluster to me, though I'm nowhere even close to being a diagnostician. So for all I know, "atypical cluster" might be accurate. One way I could try to categorize what you are describing would be cluster attacks with constant shadows in between. CH'ers are known to deploy ginger for quelling shadows (lower level, lasting cluster symptoms) BTW. You've probably noticed that there are diagnoses out there like cluster migraine, or for constant CH-like pain, Hemicrania Continua? From Googling: Hemicrania continua is a chronic and persistent form of headache marked by continuous pain that varies in severity, always occurs on the same side of the face and head, and is superimposed with additional debilitating symptoms. on the continuous but fluctuating pain are occasional attacks of more severe pain

Augh that's f***ed up man. Not that it's surprising anymore when a switcheroo like that happens, but it doesn't make it any less messed up. Having to strap on that oh shit helmet is such a bad place to be in . Really alarmed and sorry to hear it - thinking about you and concerned about you @Freud.

Good info in that follow up, @Kprice, thank you. My take at this point is that if you're going to continue to use triptans, there is a semi-hidden opportunity to get better results while significantly reducing risk of the bad side effects. It is there in THIS EXTENDING YOUR IMITREX LINK that the venerable @CHfather had also supplied. Reasons: Yep, you'll be greatly extending your supply, with much less risk of running out at end of month You should still get very reliable results with the 2mg doses. I found that pretty much impossible to believe at first, so I went with 3mg, but when I finally tried 2mg, even with very old imitrex, wow, it worked. In my experience injections with plain old syringe are surprisingly way less flinch and cringe inducing than the auto injector! Once you get the muster up to do the first one, you realize "oh this is nuthin". Of course 2 mg injections should present way less side effect risk than 6 mg, right? Syringe pro tip for abdominal area injections: pinch an inch of belly fat if ya got it, skin if you don't, and inject there. Most often it is practically painless. All this said, I would still advocate for use of O2 first whenever possible, triptan to only be considered as emergency back up, and I applaud your resolve to pursue the O2 again.

Hi @Kprice, FWIW it looks like maybe some similar sumatriptan side effects are listed at mayoclinic: Less common changes in patterns and rhythms of speech confusion dizziness fast, slow, irregular, pounding, or racing heartbeat or pulse trouble breathing Rare lightheadedness, dizziness, or fainting severe numbness, especially on one side of the face or body trouble speaking or swallowing twitching weakness of the arms and legs And as @Dallas Denny mentioned, you may wanna revisit preventatives for consideration of something more consistently effective. For many of us that includes busting, as seen at the "New Users - Read Here First" blue bar above^^^^^^

@Maryo52 and @jon019 just dispensed such beautifully accurate, helpful and to the point info packets re: shadows, O2, etc., all I can do is look upon with awe and applaud!

I'll throw the idea out there that it could be a licensing thing or some such that is rendering it unplayable from the UK (it's playing for me here in the US).

I detect a theme here with the reports of consistently successful surgeries of this type. Now a prediction: You'll be dancing a jig out of that OR following your entirely successful version of the procedure, and will be experiencing major, sustained relief, after all these years and this more recent major crisis. The procedure will also be 100% epinephrine free, or everyone involved is going to have @spiny to answer to!

OK so apparently it's not not a preventive.

How about just plopping into a bathtub full of cold water then @Shaun brearley? , Wuh woh now I might not have an excuse not to try this next time I'm in cycle.

OK, so it sounds like maybe the rest of us who aren't currently on verap can just go jump in the (icy) lake. @spiny please let us know your results with this. Actually, if I had a cold pool and needed to abort an attack I think I would totally try this.

Ah! well that would make sense I suppose - I was thinking of how going out in freezing weather with head exposed and breathing deeply through the shnoz used to abort some milder attacks for me.