Hi Everyone!  Hope you all are doing well.  Been a little while since I've posted, but I still check in to see how everyone is doing.

Here's the story....Had a CH start on Monday of last week around 10 a.m.  Since I haven't had a CH for an extended period of time thanks to D3, I guess I just forgot how bad they can be so I stayed at work.  Wrong answer!  By the time I got home (around 5:30) my CH was full blown.  This one got to about an 8.  Tried the O2 (twice) but it only knocked the edge off.  Did not go to work on Tuesday because I got about 2 hours sleep, my left eye was almost swollen shut and I was still having some pretty intense shadows. By Wednesday, everything was back to normal and I put my contacts back in.  Problem is--my vision in my left eye was cloudy and it continued that way till Friday.

Went to see my eye doctor on Friday, and he basically said he was stumped.  He knows quite a bit about CH, he ran all the tests he could and confirmed that I had a hazy cornea but was unable to tell my why.  He ruled out Optic Neuritis from my MS (so that's good) but he still wanted me to see a cornea specialist to get more answers.  Though my left eye has completely cleared up, I will go see the specialist this Friday.  Can't wear my contacts until I get cleared by the specialist.  (i hate my glasses so this part is killing me!)

So my question is....has anyone had lingering problems with their eye after a CH?  And if so, do you know what caused it?

Lesson learned:  Go home and get on 02 ASAP.  I would've lost 2 hours of work instead of 8 hours.  Also, going to ask my Neuro for an injection Rx to have as a backup.  And you guys know that if I'm considering using an injection, this one was really bad.

Anyway, thanks for your input/insight. I do hope you are all doing well!

PF Wishes,
Payg

Hi Payg,
Sorry to read you are back in cycle. Good that your eye has cleared up and that you are getting medical treatment from doctors who you appear comfortable with. I personally have never experienced vision problems following CH; with exception of swelling, tearing, pain during attack. Keep us posted. PF Wishes ;)

-Gregg

Can't help with the eye problem,  Payg,  but just as a little hint when caught out without an abortive is Red Bull.  A lot of CHeads get quite some relief by guzzling one down at the first hint of a hit.

Not a cure,  for sure,  but every little bit helps.

Thanks guys. 

I keep forgetting about Red Bull and other energy drinks.  In fact, I've never even tried one.  Might have to stash a few in the fridge at work. 

I wouldn't really say that I'm "in cycle" again being that I'm chronic.  I just have some doozies show up every now and then.  (just a sweet little reminder from Ol' CH that it is still there just waiting to disrupt my life)

The D3 regimen has made a HUGE difference!   Here's a cool fact....I had a mild CH in late January and didn't have another one (not even a shadow) till the beginning of April.  Unbelievable but true.    Maybe that's why I "forgot" how horrific they are.  Sometimes being pain free and optimistic can have its downfalls.

I'll keep you guys posted on what the cornea specialist has to say.  Just praying I can put my contacts in again.  Maybe I should start a "go fund me" page for some new, hip, sexier glasses.   8-)

Hope everyone is having a great day!

PF Wishes To All,
Payg

Jumping onto any headache abortive early, seems to be a critical step in stopping the headache get worse which minimizes the impact. So part of this is being prepared in case one happens with something, anything that can help.

The cloudy vision is unusual. It isn't one of the standard symptoms for a CH, so it could be just coincidence. But you're doing the right thing in getting it checked out.

Whilst not being able to wear your contacts at the moment might be a fashion issue, it is much better than risking eye problems, so I'd go with the glasses.

No one likes those injections, but they do work well.  On the left of your screen there is a tab for  "imitrex tip".  It shows you how to split injections to get 2 or even 3 doses from one injection.  The smaller amount works just as well as the full dose.  Even if you want to use the full dose, it's still a good way to take the injection - much gentler than those auto things that go off like nail guns. I do it all the time.

Well....I'm back from the cornea specialist. 

My eye has completely cleared up and all looks good and normal.  I have been cleared to wear my contact again -- OH HAPPY DAY!! 

He commented that it was probably one of two things:
1.  It might have been a minor bacterial infection.  Start with new contacts, new case, new solution, new eyeliner, etc., etc.  No more sleeping in the contacts.  (I know, I know, shouldn't have been doing that to begin with)

2.  It's very possible that it was caused by the amount of swelling I had from my CH.  (I showed him pictures)  He said that there is really no way to gauge the amount of blood flow in the eye during a CH but there could be some major variations during a CH that could have caused the problems with the cornea.  And based upon the amount of pain in the eye during a CH, he doubted we would ever be able find out. (He's got a point there!)

I was very pleased with my appointment today.  This makes eye doctor #2 that seems well versed in CH.  Plus, he was very nice and even got my joke about my hazy cornea not being the "purple haze".   ;D

So....all's well that ends well I suppose.  Thanks everyone for your input and suggestions.  As always you guys are the best!!

PF Wishes, Payg 

Hi
My husband has been in a CH cycle since Easter. He's been relatively PF on verapamil for about 2 weeks and started the D3 regimen about a week ago.
Last night he had a migraine (don't think CH) and has woken with a droopy eyelid and mild headache. He experienced the exact same symptoms pre cluster around Feb . I wonder if the two are related and before the GP puts him on high doses of antibiotics as before, has anyone experienced a similar thing and what did you do?

thanks
S

G'day,  Supporting Role,  and there is such a thing as a Phantom Cluster where you get all the symptoms of a full-on attack  -  except for the pain.  A weird feeling,  to be sure.

Those who've never had one suggest you can't have a painless headache so we must all be mad,  and perhaps they're right,  but I can promise they exist.

AussieBrian wrote on Jun 3^rd, 2018 at 10:38pm:

G'day,  Supporting Role,  and there is such a thing as a Phantom Cluster where you get all the symptoms of a full-on attack  -  except for the pain.  A weird feeling,  to be sure. Those who've never had one suggest you can't have a painless headache so we must all be mad,  and perhaps they're right,  but I can promise they exist.

Like Brian, I 2nd this "Phantom Cluster" hypothesis. Like Brian, i've also experienced these symptoms but no pain aka Phantoms, and they are commonly reported happening before/after cycle. Hopefully the phantom symptoms indicate "supporting role's husband is ending cycle.

A knowledgeable CH doctor would recommend he stay on the Verap for at least 2 or 3 weeks after ALL of his CH activity ends before tapering off of it.

Another recommendation is to stay on the D3 regimen year round. It can add up in cost, but no doubt very healthy for your body and mind regardless of CH's and the beauty of staying on D3 year round is when cycle time is predictable, the beast will (hopefully and commonly reported likely) stay away.

PF Wishes to your husband, and also applause to you, Supporting Role.  [smiley=applause.gif] Very admirable of your chosen screen name and your devotion to him during this incredibly stressful time for everybody in your household. Keep us posted on his progress. ;)

-Gregg

As others have said, you can get "silent" migraines / CHs, where you get all the symptoms of the CH / migraine, but with no pain. I've experienced both and until you realise that is what is happening, it is very hard to understand that it is just a normal CH / migraine but without the pain.

To abort a silent headache, you just do so as if it was one with the pain. So oxygen / imitrex for a CH, rizatriptan or similar for a migraine (or whatever you normally use).

Hi Guys

Thanks very much for that information re phantoms.

He will absolutely carry on with the D3 (even though we've had resistance from medical people here re the dosage) Going to retest for his D3 levels in 3 months.

This forum rocks, you are all so kind.
S

Hi again

Ok that felt trite, what I mean to say is - it's truly amazing how much useful info is shared via this forum, a bloody lifesaver a hundred times over, literally, I'm sure!

I reckon that if our kids end up with CH, their experience of it will be so different to my husband's. Before we found this forum, we felt traumatised, misunderstood and alone, now we feel supported, informed and confident we'll cope with this.

So thanks everyone who contributes large and small, it's just so meaningful and supportive.

S

supporting role wrote on Jun 4^th, 2018 at 11:22pm:

He will absolutely carry on with the D3 (even though we've had resistance from medical people here re the dosage) Going to retest for his D3 levels in 3 months.

Many medical people are clueless about D3 doses and the biochemistry, so not at all some are resistant. But this is changing, slowly.