Does anyone here have a cycle start like you are having an attack, eye lid dropping, etc., but with no pain?

What is the best treatment now, it's been awhile? Last time I used 02 and it worked part of the time.

Also, does anyone's vision get worst in the eye during attacks?

Please let me know.

Thanks,
campergal

Mine starts with the nasal congestion, then the eyelid droopping and tearing as the pain gets worse.  I have some blurred vision in the affected (right) eye, but I can still see fairly well with my glasses.  The nasal congestion and running will start about 10 - 15 minutes before!  Never had the symptoms without pain at some point, though . . . hope this helps a little look forward to hearing back from you.  Hang in there, you can make it!  :)

Daniel

Yes, and yes.

What you are describing are called phantom attacks.  They are not usual, but I get them occasionally, especially since I started hormone therapy a while back.  The occur the same time as I would normally get hit, and present all of the other symptoms including agitation, irritability, impatience, and the need to move, but without the pain.  I'll gladly take them over the full thing! :D

O2 still seems to be the abortive of choice for most here.

Jerry

Hi campergirl,
i get the blocked nose and different shades of red eye and my pupil gets smaller, wich doesnt help my eye sight, on and off most of the day with out the big hits but i know the beast is only waiting for me to fall asleep. its hard to keep track of what time i get hit as i work shift work changing every week but the beast is good at his job and just waits for that REM phase to pay me a visit. start keeping a headache diary and read up on O2 its the next best thing to sliced bread.

Mark (what a great idea sliced bread)

There is a rare painless cluster. But if your experience is limited to a random experience ????

Current therapies:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
========

If you want a good overview to bring you up to speed:


 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

 

I've had clusters most of my adult life, on and off. Been in remission for some time. The later cycles lasted longer in duration of attack and length of cycle time. Last one lasted a year, 02 helped some.

These are like attacks but no pain. Seems to last all day long, just lots of pressure across forehead and side of face. The eye pulling down was worst on Sat. with tearing. Still a little going on.

My last two cycles of pain started this way. Like two wks before pain. So I understand the pain! Hate it!!

None of the docs who treated me are still here.

Anyone know of a good doc/s in Wichita Ks.? I noticed a bunch of people from Wichita. Anyone know of anyone from here that I could find a good doc?

Thanks for the welcome. You all hang in there! Nice site, and you all seem GREATTT!

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Thanks for all the replies with info. I have lots to read.

I'm rather upset right now.

They got me in to see a doc 2day. I think they thought I was having a stroke since my eye was drooping.

I told the doc what I needed and that migraine medication doesn't work for clusters.

When I get the medication it says it's for migraines...Zoming!!!

She said this is what she wants to start me out on. I told her I used 02 last time but she didn't go for it, at least for now.

She is not my reg doc.

Love to all here!

Love is the answer.

Quote:

When I get the medication it says it's for migraines...Zoming!!!

Zomig Nasal works well for me......but O2 is what I use 99.9% of the time.

Tell your doctor to visit this site...specifically START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Like I said in my PM, you may need to educate your doctor!!

:)

Racer1_NC wrote on Jul 14^th, 2009 at 9:23pm:

Quote: When I get the medication it says it's for migraines...Zoming!!! Zomig Nasal works well for me......but O2 is what I use 99.9% of the time.

Same here.  Zomig nasal spray is effective as long as I don't delay too long before using it - and I stay on the O2 to help the process. IMHO, it works better with O2 than without.

I will also repeat that it is very rare to have to need it now that I've discovered high flow O2, thanks to the folks here.

Marc

campergal if u really have ch u are the luckiest one...no pain uauu...

Relative to your question,my vision never got affected by my ch´s

What has been going on in my head is like a precursor of whats to come...full blown attacks. Last cycle it started off like this as to tease.

The eye drooping and the pain is mild yet.

I did do more reading about Zoming and found it is used for clusters. I was  pretty ticked it said migraines!! >:(

It's very expensive. Out of pocket was over $65 for 6 doses! That would be a 3 day or 6 day supply!  :o

campergal wrote on Jul 15^th, 2009 at 4:51pm:

It's very expensive. Out of pocket was over $65 for 6 doses! That would be a 3 day or 6 day supply!  :o

That's one reason I use O2.......my insurance pays more than yours but the O2 is still way cheaper.  ;)

Only time I'll use the Zomig is if I can't get to O2......and those times are rare. Air travel is one example.....

Thanks guys you have been great.

Just wanted to say welcome to our exclusive club! ;D The dues suck. I'll just echo what others have said, oxygen has all but eliminated my other abortives for me. Finding a decent preventative, I use lithium, verapamil is a popular starting point for many, will also greatly improve the quality of your life. As Bob said, finding a knowledgeable headache specialist is critical to getting effective treatment. Glad you found us.

Joe

And to your first question, my wife sometimes spots my cycle starting before I do...when she notices the eyeball "droop" starting!

Yeah Joe,

hubby saw the eye drooping and redness.

Don't know where to put this but....

I'm sure at one time someone has tried a cpap machine to see it that helps (I really don't think it would!!), but asking. Has anyone here been tested for sleep apnea as maybe a cause? (again I don't think so) If this is covered sorry for asking. I'm not thinking straight! >:( :( :o

Hi Campergal.  

I was tested for sleep Apnea (actually have hypopnea) and given a CPAP machine.  I was told by specialists that there is no possibility the apnea would be a Cause of the CH, but that getting a good night's sleep would better prepare me to deal with the attacks!!  Was also told that the CPAP might help control the higher blood pressure that I have had with the CH, as well as the lack of concentration, the anxiety, etc.  Who knows?  
I understand not thinking straight.   :-[  But it was a good question!  no cause in Apnea/ Hypopnea...

Val

Thanks Val,

Have you seen any improvement with the machine for concentration and anxiety? Blood pressure? I tend to run high and during times like this it really goes! :(

Campergal, you might want to PM Brew, he uses a CPAP machine too. Doesn't help his CH but has done wonders for him in other areas. Be worth yaking with him.

Joe

Thanks again Joe! 8-)

Went to the reg doc 2day and he said 02 right away!  ;D  Knew about high flow rate.  ;D Also an open MRI. I can't take a closed. Not that I can take the open either, but he said it's been awhile since one.

Neuro and other med if needed...anything he said. ;D

He seemed to know about it and said he has treated others.

WOW!!!!!!!! A Knowledgeable neuro!!! Worth their weight in gold, that's great news.  [smiley=thumb.gif]

Joe

That was my family doc, not a neuro. He said he'd send me to one if I wanted.

Going to try an open MRI and 02 for starters, I guess.

Hope Open MRI is ok.

I've checked out the few docs recommended here but found 2 of them had low ratings, and one other doc recommend by someone my reg doc didn't like.

So not sure what to do about 'a specialist'. My reg doc seems knowledgeable. How much I don't know. He did order a MRI that I had Friday, and 02 will get next week.

MRI is normal.

So I guess that is good, not surprised, but nice to know.

GReaT!!  Still a good thing.  How was the open MRI experience?   8-)  Easier to handle?

Nuther thing with the O2 -- Make sure you have the RIGHT mask. On this site is the CH.com store -- the Op2tx (or whatever it's called) mask is great. But be SURE you have a non-rebreather mask or you're not getting what you need with the 02.

I'm an O2 pusher like a lot of others here. I use the demand valve and very seldom have to use another abort.

If you happen to be out (away from your O2) you might try a can of Red Bull (or another energy drink with at LEAST 1000mg of taurine in it). I carry one with me (just in case). Chug it at the first sign of CH - helps in a pinch.

Welcome to Clusterville. It's the best place to be if you're a Clusterhead. We KNOW how you feel = believe me WE KNOW!!

Hugs BD :-*

Val,

The open MRI was great. They did give me med but my system doesn't respond to pills. What they gave me should put someone out, but only once did I feel a little sleepy.

They covered my face and I think that really helped!!

So over all it was a good experience! 8-)

BD,

My last cycle I used a non-rebreather mask and it worked for me most of the time if I got it early. :)