Morning all,

Question: Has anyone ever heard of the iris on the CH side changing colors?

Regular Eye Dr is worried and sending me to a specialist.

Nurse at Duke Medical wants to book with onocologist first to rule out a tumor. That means two trips and at least two days lost and two bills. >:(

Never mind that I told her it is a 3 hour trip - 2000ft descent/assent - each way. BUT, she has heard of the effect and CH. She knows that I will pay for the altitude change too!

My iris on the CH side has changed color rather dramatically over the last 6 months.

Anyone else seen this or had this themselves?

With support from my Eye Doc, I will get this changed to one visit, not two as Duke wants. Or, I will go to a different Medical Facility. With so many MRI's and an MRA done in the last 5 years, I doubt that I have cancer!

thanks!
spiny

If it changed from blue to brown you might................never mind.

         Potter

Well, if I am right, it went from hazel to very green.
If others are right, the other went from green to hazel.
..........never mind. :-[


Sherry

Never heard of this, but I did hear there's a doctor in Kollyfornya who's working on a 20-second laser procedure that will change your eye color. Not kiddin'.

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This article says that Horner syndrome can cause eye color change.   Hopefully that is all it is.

My eyes are so bloodshot from 13 weeks of torture by the DRAGON that I don't think my eyes are blue anymore.

Jeannie,
Thanks for the thread. I tried telling my Dr that and he claimed not to know of such a symptom from Horners.
But, he is not very knowledgeable.
LasVegas,
Right there with ya.



spiny

My eyes are hazel...which is, of course, why I have ch!
Never experienced color change...but the pupil on affected side is permanently constricted. Eye doc says..."no big deal". Still worries me, but no apparent visual effects.

Best,

Jon

Have you checked the OUCH list for a HA specialist in your area?  If you're going to have to take off work and travel to see a doc, a HA specialist would be first on my list, if I were you. 

Jon,
Well, I had green/hazel according to my eye Doc. Now, I have one green on the cluster side. Also, that pupil has been constricted for 4 years.
I had the Horner droop for almost two years. Now, I have the spiny wrinkle/super muscle on that side!!! The forehead has a special wrinkle all its own above the left eye and the muscle is much more prominent just above the brow. All this hikes the brow up 1/4 -3/8" depending on the pain situation.
Neuro can't get past the lack of major droop fo the upper lid. I do get some pull-down on the lower lid. I have requested that he call the eye Doc for verification, since I requested surgery or anything to fix the permanent droop for about 2 years!!!! No go. Won't do it.
Eye Doc didn't want to do surgery till I was cluster free for 2 years, as the droop might lessen when I went into remission. That would leave me with a weird looking eyelid. So, now I just have a slightly weird looking forehead! Wonder of wonders, the affected side is MORE wide open than the unaffected side.
PCP said to get Botox to my brow to prove the point to the Neuro.
Botox Dr refused and worked on the other side instead! Yep, I looked great for Christmas last year, but did not get the needed evidence to prove my point and my wallet was a lot thinner.
Hmmm...call that a bit of a loss.
thanks,
spiny

The closest Dr listed on OUCH is 1 1/2 hours away - downhill of course.

Right now, I am using the 123 vitamin regime and O2.

Ran out of O2 night before last and that really sucked (or didn't! :() for the last two of the night.

Last night, I just had one to endure. Not as severe, but 2 hours long none the less.

I received my mask from the store yesterday. THANKS P J! 8-)

The valve should be in tomorrow. I am off to get new tanks to be ready to set it up in the house. The dog loves my nightly jaunts to the basement and will be disappointed when I just go to the spare bedroom. :(

To see a specialist in this area takes about 3 months, unless you get a referral from another Dr. And right now, all the energy I can muster needs to be directed elsewhere. My plate is full till Jan 15th!

In the interim, I plan on Prednisone, O2, vitamins, Verapamil, and pain meds. Changing Drs in the middle might be a BIG mistake.

I am working on alternatives and hope to eliminate the drugs as much as possible.

The altitude induced headaches will just have to be endured. They are isolated to when I go up the mountain and usually last 1-3 days.

The eye thing bugs me, because of the lack of knowledge of so many Drs. and because they all want me to go for tests and scans and lots of money out the door just to find out what I suspected all along!!!!! >:(

thanks again,
spiny

Spiny,
Great you are getting the high flow regulator tomorrow.  Make sure you have a wrench handy and a VERY strong arm to tighten the connection to the tank. ;)

Relying on the "123" vitamin regimen alone, I unfortunately found to be a TRAGIC mistake!  The anti-inflammatory regimen MAY prove helpful for you, but to GAMBLE on this working while in cycle without transitional or preventative meds could very well prove sheer misery.  This is certainly something that should be tested secondary to the Prednisone and Verapamil you mentioned. 

You also mentioned pain meds.  Pain meds are a BAD idea for CH's!  Lots to read and learn about this subject!

Have you started a Prednisone taper with Verapamil?

Back to your eye inquiry, i've looked at my iris in the mirror every attack, 8x/daily since you started this thread curious if there is any eye color change, nope-not once, but still bloodshot from sleep deprivation.

I did notice on my CH side, my eyelid is noticeably wrinkled and droopy compared to my unaffected eye/side, even when not attacked.

Sure hope this goes back to normal once I am out of cycle, or I too will get Botox or some treatment.  Good looking guy here and want to stay that way as long as age will permit ;)

We understand your pain moreso than anybody and you have the best CH knowledge here available compared to any other resource in the world. 

You are not alone!  ;) Hang in there!

Morning LasVegas,

Yep. Started on Prednisone 3 times so far.

Doc thought that if I had them return when I was down to two pills a day (or three), then all I needed was two a day! Of course, that was no help.

I finally told his office that the 30 day supply at one a day was going to be taken at a taper rate from 5 first day and then down to when the headache returned.

When I got down to three, they returned. I called and gave them the scoop and pleaded for a LONG TERM taper - like drop one pill a day each week - not day. I got a month supply for a decent taper.

Currently, that is what I am doing. Four a day last week and down to three starting today.

Also, had to push really hard to go back on Verapamil. Currently at 180mg/day. Too low, but a starter. After a month, I guess I will ask for an increase. I used to take 540mg/day, but I will be happy to go for 360 for a while!

My pulse is still running about 85-100 p/pm and bp is 110/68. Low bp and high pulse I don't understand - except I suspect PAIN might have an affect.  >:(

Got the O2 set up yesterday. Yeah!!!! ;D Used it once last night and had a great sleep of 8 hours!

My eye changed over the course of several months. At first I doubted what I saw. My husband is color blind, so he can't see it really. But, my hair-stylist noticed right away during a shampoo. That meant I could not longer ignore it.

Eye Doc freaked, Neuro said "Nope, Horners does not cause that" and eye specialist wants me to make three trips to an office that is downhill and 3 hours each way to see three different eye doctors! I don't think so. >:(

Yeah, that eyelid thing can really get to you. At your age, I would do whatever made me feel better looking in the mirror! :) When this cycle is over, you might see a change for the better. I did for a long time.

I used to read a lot more and with the droop, I could not read. So, I held the book low and worked up over about 18 months or more. The lid responded by lifting rather too forcefully and now it is permanently elevated - all the time!  Hey, at least I can read in comfort off cycle now!

Pain meds suck and I am allergic to most of them. Actually, there are only 3 on my available list. They are for when I am taken by surprise and stuck away from home.

Or, when I am awakened 3-4 times a night about 30 seconds from a head crusher when my eyes pop open. Then, I hit it all: Pill, O2, coffee and don't lie down!!!!! If I still have a shadow and lie back down, the beast will return shortly. So, every attack means 2-4 hours up-right. Now, with O2 in the house, I am treating a night time shadow like a full 'light up'!

Currently, I just really want to make the Doc eat his words! Considered sending him the NIH and MAYO symptoms of Horners, but he would not be happy and I don't need to alienate him. :(

The color change took place over several month (3-5). I am sure if it is through or going to continue to lighten.

Take a pic of both eyes, up close. Save it for later reference. Then you won't be stuck in this he thinks/I think situation that I am now. I say 'left' and the rest of the world says 'right'. I am the one who takes all photos around here, so I have no reference pics. Since they confiscate your old drivers license now in this state, the only old pic is gone. Then, forget it. You will notice the change first with a question mark and then the obvious will end the question.

But hey, on the positive, since hazel eyes are supposed to be more common than green eyes for CH's, I'll just get the other one changed to green, via Brews' advice. Does that equate to a 'cure' and end the Beast permanently?  :)

Oh, rats. I guess not. Being female, I don't get Clusters. After all, they only affect .1% of the population and 70% of patients are men.  :'( I must just be hysterical - being female and all). I had to take my husband my second trip to the Neuro, because the Doc did not believe me from symptoms I described. Hubby said "I want my wife back. She is up, in agony for hours, every evening." Doc decided that since a MAN said it, it must be true, not hysterical female. Gotta love it.

Stay safe and PF! Being 'not alone' is the biggest boost to morale.

spiny

Spiny,
Great to hear you got o2 and an 8 hour night sleep.  I've got o2 and is currently working for me 70% of the time, was only 50% of the time.  The improvement % for me I believe is staying on the o2 at a lower (15 lpm) flow rate after the abort for about 10 minutes or so to avoid a re-attack 45 minutes later.  Yet I still get ATTACKED by the DRAGON at least 5x/night + 3x/day.  Hopefully the high flow (25--40 lpm) with a Non-Rebreather Mask proves 100% helpful for you.

Based on what you described about your neuro...he is ignorant and even worse-doesn't want to put his ego aside and learn about CH's to treat his patient.  Personally I wouldn't waste anymore time with him and find somebody else.

Below is a list I copy/pasted for you from the OUCH website (left side of your screen) of recommended doctors who are in NC.  Maybe 1 of these docs will prove beneficial for you compared to your current neuro?...

North Carolina
Asheville:
Dr. Morris Maizels Blue Ridge Headache Center␣

Chapel Hill:
Dr. Alan Finkel Carolina Headache Institute␣

Clyde:
Dr. Howard W. Palay Mountain Medical Associates

Durham:
Dr. Timothy Collins, Duke Health Center at Morreene Road␣

Raleigh:
Dr. Rhonda W. Gabr Raleigh Neurology
Dr. David A. Konanc Raleigh Neurology

Winston-Salem:
Dr. Paul G. Martin Triad Neurological Associates

As for your Prednisone prescription, it just doesn't sound right.  Pred is nothing to fool around with and one must really consider the risk/reward factor.  Needless to say, it should always be prescribed properly for the individual treatment and not be taken long term. 

There are 2 Prednisone tapers that are prescribed.

1. Medrol dose pack is prescribed for a 1 week taper.  It is Methylprednisolone which is more potent than regular Prednisone.  It comes in a foil blister pack.

2. The other Pred taper that is most common is typical 20mg pills that are most commonly prescribed for CH's to start high (60mg--60mg) and taper down over a 2 week period while the preventative med titrates into the bloodstream.  In your case, Verapamil is that preventative med and unless you have heart issues I don't see why you are starting so low dosage when you know 360mg is your previous therapeutic dosage.  Why would you wait an entire month to increase?  This also doesn't make sense? 

Considering you will need to be your best advocate...please read on this preventative meds subject to help yourself get PF faster.  Plenty of threads in the medications/treatments section and the archives.

I'm not familiar with blood pressure nor pulse rates on a low level, just on a high level.  This is something I personally will research today as I will be increasing my Verapamil today from 320mg to 400mg and want to know everything I can about it. 

Why you were prescribed such a low dose of Verapamil makes no sense to me whatsoever considering how long it takes to titrate into the bloodstream (typically 2 weeks) and knowing YOUR therapeutic dosage is 360mg.  Are you on Verapamil for another reason other than CH's or is your neuro that much of an idiot prescribing you that low ineffective dosage?

Did you get a script or samples of any Triptan meds to help as an abortive or just the pain pills?  Pain pills will cause rebound attacks and addiction issues as this is not something that lasts a day or 2 like dental surgery.  In addition to your high flow (25--40 lpm) o2 therapy with a NRB mask, you should have received a script or 2 for triptan meds such as Imitrex inj or Imitrex nasal spray or Zomig, etc.  Although these Triptans also will cause rebounds, they are more effective at CH treatment than pain pills.  Pick your poison!

I would suggest not being so concerned about the color of your eye right now considering you mentioned the elevation change for doctor visits is a CH trigger, and hold off on that until after you are successfully out of cycle.

Hopefully you take what i've written as educational and as constructive criticism offering sincere best wishes of PFDAN to you Spiny.

Oh and don't forget to thank your husband for being so supportive, CH's takes an emotional toll on them and they can be a real life saver.

Gregg in Las Vegas

Went to the mirror during and after several attacks these past few days/nights and have noticed at times my eye color will go from natural blue to hazel/green....very strange and never really looked at my eyes close enough during/after attack previously to notice.

Also, noticed my pupils often get smaller during/immediately after an attack...never noticed that either.

Regardless, my eyes are still bloodshot and everyday/night I feel like a wearwolf and/or The Hulk...currently week 15  :(

Hey LasVegas!

Your advice is appreciated, not to worry!

No, I am not going off my mountain for a while yet. My daughter is coming to visit the first of Dec. and has been advised to get her own transport up the mountain. It is rough on her, but she definitely understands!

I upped the Verapamil to 360 and then called the Dr. two days later to ask for an increase in script dose. I got it. Told them my bp and pulse rate. In another week, I will repeat the same procedure. I don't think he wants to see me anymore than I want to see him, so he will do it. If I go too high, then my heart pounds like crazy walking up hill. Right now, I bet I could double it and be fine!!!

Yep, that eye thing is funny. The ptosis and pupil constriction is common with Horners. Mine is permanent with the pupil now.  >:( The eye color change is not so common, but is well documented. Hey, perhaps I will get a side switch and turn the other eye more green! ;)

Fortunately I am not getting the total number of hits that you are right now. I do get lots of shadows during the day. Mostly pressure/pain in the temple and burn over the eye to the temple.

Energy drinks suck - way to sweet!!! So, I have upped my coffee consumption from one to several a day. Frequently starting at 3:00am. Why bother going back to bed after 20 minutes since another one will just show up in no time? A cup of coffee at 3:00 works as fast as my O2 at 3:00am and I don't wake my husband that way. :)

This round started Sept 15th. Not counting weeks, but over two months. If the Dr were more help, this could have been truncated I think. My heart goes out to you.

Also, agreed that pain meds suck, but they have their place for me. I have to be so careful with any new medication that I stick to the old stuff whenever I can.

Argued with PCP for years about taking Cipro. Took it once and discovered that I really did have kidneys - even without a 'kidney' punch. He said that was not on the list of adverse reactions. Well, they only report 'adverse' reactions that occur in 5% of the test population I think. Been a while since I did that research.

Then, another Dr prescribed Levaquin for a respiratory infection without any supporting evidence for such a RESTRICTED drug. D*** near killed me. Covered with a drug rash from top to bottom and any bump over about 12 hours old opened and bled everywhere. Dr got angry when I confronted him, said he wrote 10 scripts for that s*** everyday! Also argued that it was NOT related to Cipro. No, it is just a 3-4th generation of Cipro! And, NIH says to use as a last resort drug, not a first line of defense!

Also, I can take nothing with Tylenol, Advil, or any of the other Aspirin substitutes. Enteric Asprin only. Try finding any pain med that does not contain Tylenol today. They make it, but pharmacies don't stock it! >:(

Hey, question. The first wake-up call, I can get about a 30-45 minute nap after O2. The next call, I only get 10-15 minutes. By the third call, I am in pain and sick and disgusted that the clock has barely moved!!!!! Even when the pain is completely gone before I lie back down, the time frame shrinks. If I stay upright for 1-2 hours, then I can get some sleep. but not a lot of sleep time left for the night!!!!! >:( What happens on your end?

Triptans. Tried them a long time ago in pill form. I would have to do a lot of research to try them again. In the last 10 years I have developed allergies to 5 standard meds and now keep an Epi-pen with me at all times. I can't even take the newer synthetic Prednisone!

With the use of the heavenly O2, my pain med use is down by 2/3's. That is a very good thing as I hate being a 'mush' brain for part of my day and you can't go to sleep with the darn stuff until an hour after you take it. Pain is gone in 20 minutes (mostly) but my brain is wide awake and thinking!

Also, do you have to stay upright for periods after the hit is over? That part is really tiring. My neck hurts from falling asleep sitting up in bed.

And yes, my husband is the GREATEST! He can't take the pain away, nor really comprehend it, but he is always there for me. No one could ask for better support than I receive from him. 8-)

thanks!

spiny

Good morning Spiny,
Always a pleasure to read when one was suffering and something is working in reducing the frequency and/or pain intensity.  Hope your treatment continues to help you improve!

I will try to remember and address a few things you typed.

Your concern of energy drinks being too sweet.  Have you tried switching brands?  Some of these energy drinks such as Redbull make a Sugar-Free version which may be less sweet, not sure, never tried and compared to regular Redbull.  Regardless, now that you are on Verapamil, you may consider monitoring how many energy drinks you consume per day, as the Taurine plays a role similar to the Verapamil and too much Taurine with Verapamil may not be favorable to the heart.  One may be ok, two may make you feel different, to each his/her own.

I've read double shot espresso drink are helpful, similar to an energy drink.  Something to consider since you are ok with coffee.

Your neck hurting after sitting upright is just that...may want to try re-positioning of your head/neck.  Are you sure it's from sitting upright in bed opposed to the typical stiff painful neck associated with CH's? 

Your o2 use you mentioned is successful the 1st attack, but less effective the 2nd and 3rd, etc.  Might consider staying on the o2 for 5 or 10 minutes AFTER you are PF/abort.  You don;t need to necessarily stay on the same high flow rate after abort, but should consider to breathe the o2 to rid any addtl co2 buildup.  This should assist with longer PF periods btw attacks.

OTC and pain meds often don't touch the pain of the CH's.

Pain meds obviously also create addiction issues due to the frequency of CH's and how many pain pills would be taken each and everyday/night.

Triptans such as Imitrex are very effective aborting attacks, but NOT in the pill form as the pills take too long to abort the attack.  Injections are best and nasal sprays are effective for many CH'ers also.  You mentioned the epi-pen, are you referring to the Imitrex statdose kit with the injection pen?  Imitrex injections in that statdose kit are 6mg.  We have found that 2mg or 3mg is effective for aborting attacks.  Unless you are using Imitrex vials with insulin syringes, the only way you can use a 2mg or 3mg dose injection is with the Imitrex Tip.  Have you tried this? 

See yellow tab on the left side of your screen for understanding the imitrex Tip.  This helps conserve expensive med, reduce how much trex you use to abort each attack. 

OTC, pain meds and tryptans will all cause rebound attacks!  These are some of the reasons why o2 is pushed around here as the #1 abortive treatment for CH's.

You've mentioned you can't take the newer synthetic Prednisone.  Not sure specifically what you are referring to.  There is Prednisone and Prednisolone, both similar with the latter more potent.  You seem to be experienced with Pred Tapers so not elaborating unless you inquire.

Congrats to your husband being supportive.  Check out a thread I posted in the Supporters board titled "Supporter To Do List", might be of assistance to you and your husband.

Are you keeping a headache diary?  This will prove helpful for you and also your doctors.

Don't be a stranger and try to stay on top of that mountain ;)

-Gregg in Las Vegas

LasVegas,

A soda to me is Tonic Water! Since they quit prescribing Quinine pills for Restless Leg S., I get mine from Tonic.

I really don't indulge in sweets much as I have had low blood sugar since I was a kid and candy made me sick. So, I don't like sweet stuff except when it is a great dessert!

Pain meds - down to one every 1-3 days now. I am thrilled. Soon to be another item gone from the medicine cabinet! Like I said, I don't like them at all.

Maybe it is hurting from the CH! Never thought of that. I actually fall asleep and my head drops forward while sitting straight up. So, I look like the poor little two month old in the car seat without a head holder in it! :-[

Thanks for the warning on Taurine and Verapamil.

The Epi-pen is for anaphalactic (spelling) shock. Epinephrine. I never take a new med without it and my husband close by. Actually, for at least the first day!

Things are getting better. One good nights sleep is a real booster and I am having more of them.

Got to get ready to go hunting. 8-) Now that is stress relief.

Diary - well, yes, most days. Some are just too ----- to worry about it. But, I do get it mostly caught up.

Cheers. I hope your day and night are PF. :)

spiny