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suesue422
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update from the eye doc and a couple of ?'s
« on: Dec 27th, 2007, 12:32am »
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Not sure if this is the right place for this or not... so sorry if it's not!
 
So I went to the eye doc today because my primary doc found that my left eye (same side affected by possible clusters) didn't track correctly.  He just wanted to make sure it wasn't associated with the headaches, which he seemed to think were clusters.  Well, let's just say it was quite a day...
 
When I finally get to see the eye doc, he asks me why I'm there.  I tell him the problem the primary doc found and that he (GP) thinks I'm having clusters.  So the doc says, (I'm paraphrasing but using quotes), "No, you're not getting cluster headaches.  Only men get clusters.  If you were getting them, you'd be a scientific study - I'd have to report you."  WHAT?  Then report me.  He starts talking about migraines because only women get migraines.  Then he says, and this is a direct quote, "You know, they do have headache specialists.  They're called neurologists."  Maybe he thought I really didn't know, but it seemed very condescending.  Apparently, because I'm a woman, I can't get cluster headaches, and I'm also an idiot.  Ugh.  
 
So, we move on, and he puts like a million different things in my eyes, makes everything blurry.  The final diagnosis... I'm "super" farsighted, which affects my near vision, so I'm experiencing eyestrain from trying to focus back and forth.  I need reading glasses.  Also, I've got a lack of lubrication in my eyes and a build up of some oils (said it's related to acne?? - and mine really isn't that bad), which causes swelling and pain around my eye(s).  But it only hurts around one eye and goes down into my jaw and neck, but that's because of the oils around my eye, right?  Anyway, I need oral meds and eye drops.  I'm sure this is a legitimate problem, but I don't think he should be telling me whether or not I've also got clusters when he's NOT a headache specialist.  I walk out of there, expected to drive home, but I'm all blurry and can't see anything, ugh.  And guess what happens shortly thereafter... a nice unilateral headache, which must have been a migraine, right?  It wasn't the worst I've had, but I took a nap when it started to fade (bad idea) and woke up with another one.  And so we begin again...
 
So, I wanted to share my experience but also had a few questions...  Can dilation of your eyes trigger an attack (or a negative experience at the doc, ha)?  Also, I took Imitrex for the first time (I know the pills are pretty much useless anyway), and it didn't seem to help, even in warding off a second headache.  I felt really strange after taking them though.  I felt worse at first (which could have just been the headache getting worse), and then it was like my head down through my neck got a strange, almost pins and needles feeling, and I sort of felt like I had shortness of breath (but not really).  My hands also felt kind of numb but not totally.  It was just a very strange feeling overall.  Just wondering if anyone else has ever experienced this.
 
Also, I've read about "shadows" and was wondering if someone could elaborate on them (or post a link that describes them).  I don't really understand what they are.  Are they sort of like the auras people with migraines get?  Sorry, I know we're not supposed to compare to migraines, haha.  The doc asked me if I was seeing spots or anything, and I said no, and he said I would be if I were actually getting clusters... not sure if that is true?  
 
During an attack, I tend to get minimal relief if I clutch my hands behind my head and lead forward (almost as if prepping for a crash), rocking slightly.  This helps when I'm in the car (wonder if this is also a trigger for me, riding as a passenger), when I can't get out and pace.  I also try to wrap something around my head, like a sweatshirt or something.  It's like pressure for pressure.
 
Lastly, do people tend to get dull ongoing headaches (in the same areas) during cycles?  For me, it's like they never truly go away, but they definitely aren't banging my head bad.  
 
Just a side note... I'm still referring to my headaches as such (rather than clusters) because I'm still not positive that's what they are.  I'm still trying to figure that out with my doc.  He pretty much said that if the meds do work, I definitely have either clusters or migraines, but if the meds don't work, it doesn't mean I don't have either of them.  It's trial and error at this point.  I also only took one pill, even though he said I could take another after an hour.  I just didn't want to feel that strange feeling again.    
 
Okay, sorry this is so long.  I appreciate any and all input... even if you think I'm NOT having clusters.  Just don't tell me it's only because I'm female  Wink!
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purpleydog
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Re: update from the eye doc and a couple of ?'s
« Reply #1 on: Dec 27th, 2007, 1:21am »
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Sue, have your doc refer you to a neuro, preferably one with headache experience. From your post, I can't say either way what you have, and I'm not a doc. Did you take the cluster quiz to the left? If not, then take it, it may help you and your doc to determine what you have exactly. print it off and take it to the doc.
 
As far as your eye doc, he is full of shit. Also, he is not a headache specialist, there are plenty of women who get CH, I'm one of them, and chronic to boot. You should really see an opthamologist, not an optometrist. If this guy IS an opthamologist, then my mistake, and he really doesn't know what he's talking about, headache wise. When I first started getting my attacks, the pain was in my left eye, and it was excruciating. I went to the opthamologist, because I thought there was a problem with my eye. After the 3rd visit, he told me he thought it was neurological, he couldn't find anything wrong.
 
I can't comment on the diagnosis your eye doc gave you, but please get to a neuro. Read all the info to the left, and take the cluster quiz.
 
I have never seen spots or anything else when getting hit by a cluster headache. My sight in that eye gets incredibly out of focus, and my eyes tear up so bad, I can't really see out of either eye, and pretty much have to be led anywhere. The eye on the side of the hit tears up, and I'm usually crying by then, if it gets that bad (when the trex or O2 isn't working).
 
When you have your headaches, do they come on right away? And stop right away? Pounding, like a migraine, is not a symptom of CH. Can you lie down when you have these headaches? How long do they last? Do you get breaks in between? Do they wake you up out of a sound sleep? Are they one sided, and do they always show up on the same side?
 
There are different triggers for everyone, alcohol and cigarette smoke being the two main ones. Shadows are kind of like having a minor cluster. The pain is fairly low, to high, and can break into a full blown Ch at any time. Or maybe it won't. Read the med board, and the cluster specific board, there is a lot of info there in those threads.
 
Also, if you do have CH, then have your doc get you a script for injectable Imitrex, or the nasal spray. It works within a few minutes to kill a CH. Oxygen is your best bet as an abortive, using it at 15 liters per minute (LPM) with a non-rebreather mask. It works best if you get to it and use it AS SOON as you know you are about to get hit. It has no side effects, and is fairly cheap. There are also many preventative meds available that you will try. You will find the best combination that works best for you. We are all different.
 
Read the topics to the left, and read some more. Ask questions, we are here to help. But right now, you need to get to a headache specialist to get a diagnosis. And as I said, print off anything from here you need to, to take to the doc.
 
Welcome! And ask more questions, we are here to help!!
 
Chris
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suesue422
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Re: update from the eye doc and a couple of ?'s
« Reply #2 on: Dec 27th, 2007, 1:58am »
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A little more from me...
 
Yes the doc was an MD eye doctor, which was what my GP stressed to me when sending me there.  Honestly, I think the main reason I was sent there was to rule out a brain tumor of some sort, just because of how specific my symptoms were.  No sign of a brain tumor there.  Now the plan is to call my doc in the morning, explain the reaction to the meds and discuss the eye doctor's results.  Then we see where to go from there (likely a neurologist).  I'm exhausted but at the same time so excited that I might actually be getting somewhere with this.  I know it's a process.  I've had the TMJ treated and been to the eye doc, so we're ruling out the other possible problems.  We'll see what happens.  Again, thanks to all for you help and support.
 
Oh, and for Chris, yes I have done a lot of reading on the site and had some of my questions answered, especially on the shadows and cluster symptoms.  I have taken the cluster quiz and definitely have all of the symptoms listed there, but it's the little ones I'm unsure of.  Oh well, I'm going to try to get to bed now, but I'll post more later.  I'm addicted, lol.  
 
Sue
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Re: update from the eye doc and a couple of ?'s
« Reply #3 on: Dec 27th, 2007, 10:11am »
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Oh wait until Linda hears about this, I've been telling her forever women don't relly get CH, now I have a doctor backing me up, yes!!!!! Grin Grin
 
So anyways........he is either a very old doctor...there was a time when they really believed only men got CH...or just a very un educated doctor. As frustrating as it is, it sounds like your GP is on the right track. Part of diagnosing CH is eliminating a bunch of other possibilities.  
 
I have a lazy eye also, coincidentally on the same side as my CH. In my late teens when they still had no idea what my headaches were they tried glasses thinking my lazy eye was causing the CH....needless to say no relief!
 
Keep plugging away, there are hundreds of headache types, many with similar symptoms, getting the right diagnosis is critical to an effective treatment! Sending you wishes for a quick diagnosis and en effective fix! Good luck.
 
Guiseppi
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Re: update from the eye doc and a couple of ?'sSue
« Reply #4 on: Dec 27th, 2007, 11:33am »
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Sue,
 
You came to the right place...  and by all means, get a consult with a good neurologist to confirm your cluster headache diagnosis...  I've had my eyes dilated every month like clockwork for the last 5 years and never had a cluster headache as a result...
 
If your neurology consult results in a confirmed diagnosis of cluster headaches...  and it sounds from your note that it will, be sure to ask the neurologist for a prescription for oxygen therapy at a flow rate of 15 liters/minute as an abortive...  A lot of folks on this thread have already recommended this to you… Oxygen Therapy is the single most cost effective abortive for most cluster headache sufferers...  It is also the least invasive and there are no side effects like imitrex save for a dry mouth that's easily fixed with a sip of cold water or soda...  I see you’ve already found what Imitrex will do to you…
 
You'll hear that there are some cluster headache sufferers that find oxygen therapy is ineffective...  Read this as they're not using a high enough flow rate or they have a defective non-rebreather mask, or both...  Most of us need a minimum of 15 liters/minute or better yet, 25 liters/minute to achieve aborts in a reasonable amount of time...  A number of us use 25 liters/min and higher.  At these flow rates we are all able to abort nearly every cluster headache attack in 5 to 7 minutes.
 
Here are a few sad facts about cluster headache sufferers and cluster headaches...  Nearly all of us took far too long to get a proper diagnosis...  2 to 3 years on average for episodic sufferers and longer for others...  There are also a good number of us that were diagnosed incorrectly with sinus infections or problems associate with our teeth... I had both and it took 3 years of episodic agony prior to getting diagnosed properly...  My Navy Ophthalmologist finally made the diagnosis.  Ah yes… your eye doc’s knowledge of cluster headaches is out of date and sadly inaccurate…  Some remedial study may be in order…
 
Even neurologists have a hard time diagnosing cluster headaches…  Dr. Todd Rozen, MD, Neurologist, and leading expert on cluster headaches told us the average neurologist sees only two cluster headache sufferers in their first 10 years of practice and less than one in ten has actually witnessed a cluster headache attack in person as it was happening…  
 
Take care, hang in there, and keep us posted…
 
V/R, Batch
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Re: update from the eye doc and a couple of ?'s
« Reply #5 on: Dec 27th, 2007, 10:46pm »
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Sue, I don't know whether you have any kind of cardiac history, but your reaction to Imitrex sounds not too different from mine.  I had mild angina, pressure in my chest and tingling down my right arm, just enough to scare me off of the triptans given my history of poor circulation and bypass surgery.  Talk to your doc before you try Imitrex again.
 
And I am one of the many women here who can vouch for the fact that women do indeed get clusters, and some doctors are truly ignorant.
 
BTW, saw my cardio-thoracic surgeon today and he actually asked intelligent questions about my clusters, as if he actually knew what they were! I was impressed.
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Re: update from the eye doc and a couple of ?'s
« Reply #6 on: Dec 28th, 2007, 7:47am »
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Sue,
 
I'm waiting for BobP to come along... he always has to tell us that "wemins get megraines not CH!!" (he's joking!).  Grin  Find a new eye doc - that one hasn't been keeping up....
 
Get your doc to refer you to a neuro who knows a little about CH and then interview your new neuro. If he doesn't know about O2 - find someone else. If he doesn't know about CH - find someone else. Just because he's got a diploma hanging on the wall doesn't mean he knows anything as a lot of us can attest to.  
 
My GP (unbeknowest to me) interviewed my present neuro and then snuck him in on me while I was in the hospital supposingly to get a DHE treatment. Best thing he ever did for me. I'd been to about a dozen before that and had flat refused to go to another one and told my doc that he and I would treat me without a neuro (I can get a little stubborn at times). But as luck would have it, while the neuro was in the room I got hit. He grabbed the O2 and slapped it on me - I issued orders for cafergot and he followed them and we've been together for the past 10 years. He's wonderful and keeps up with the latest in meds, reads everything that comes out about CH and best of all asks questions and LISTENS. He's even recommending Red Bull now cause I told him about it.  
 
Hopefully you'll find a good neuro soon and get some relief.  In the meantime - try some frozen peas on the back of your head for that pain there (if that doesn't work try heat - it's a  crap shoot which one works). Chug-a lug a can of Red Bull at the first sign of the Headache. That helps a lot of us.  
 
Let us know how things are going...
 
Hugs BD
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Re: update from the eye doc and a couple of ?'s
« Reply #7 on: Dec 29th, 2007, 12:25am »
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Sue,
 
Glad to see you back.  I'm also glad you did your research so you weren't affected by the eye doctors prehistoric notions of clusters and migraines - his comments are really sad.  There should be a review board to report docs to for givog out seriously out of date misinformation, which would then require some serious continuing education to retain their licenses.
 
Anyway, I wanted to answer some specific questions that others hadn't responded to, and second everything they said.
 
First, the only definition of shadows I found is on the New Visitor page, just after entering the site, after clicking Enter.  It's a "phantom" headache that is low-level, may come and go, may warn you that an attack is coming.  I've heard others describe shadows as continuing throughout the day after bad attacks, kind of like reverberations.  Personally, I get crawly feelings, coming and going on my pain side, electric shocks, pins and needle, all sorts of wierd sensations and pains when I'm having many attacks per day, and before I was taking prevenives (topomax and verapamil) I just said the headache never stopped.  Really, I'd say it was multiple attacks with lingering shadows in between.  Once I started O2, when I feel any shadows O2 usually kills them for 2-3 hours completely, but I rember it feeling much like you describe before I had any effective preventives or therapy.
 
There are two other types of one-sided headaches that a neuro will be thinking of, so it really could save you time if you print the cluster quiz with your answers, and maybe look up info about these conditions too.  They are Hemicrania Continua and Paroxysmal Hemicrania.  When I said that I had a dull ongoing headache between the really bad ones, the neuro threw out clusters and jumped on test two for 4 months because I guess cluster sufferers aren't supposed to have ongoing headaches.  Well, I don't now that I'm being treated for clusters, but I've heard alot of others here say after a bad night attack "I've still got the shadows today, but can deal with that."
 
Your experience with Imitrex sounds like the first few times I used it, kind of, but min weren't Cardio related and they didn't happen after that.  It felt like fire ants were crawling under my skin down my left neck, and my head and neck were on fire.  I get tingling and numbness during attacks anyway, so not sure of that.  Anyway, the next day my neck muscles were sore as hell, but I haven't had problems since.
 
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