Get a real diagnosis.

     Potter

Hmmm.  Looks like she didn't want to.

 If you should decide to come back..I need to tell you that the advice to get an accurate diagnosis  is something we tell a lot of folks.  It is good advice.  

Geez Potter ya skeert her off. Just a little sensitive. ;D
thebb

She has another post on the thread above.    ;D

So, let's see....I've seen my doctor, 3 neurologists, had a CT scan and an MRI.  The docs tell me it's not a brain tumor, it's not MS, it's not lyme disease, it's not a migraine of the type I had as a teen, it's not a viral infection or a bacterial infection, it's not my eyesight nor my dental work.  The docs say, "It's vascular, probably cluster headaches."  How much more of a "real" diagnosis is there?

I posted here because I have a few symptoms that the doctors ignore when I list them and I wondered if others had them too.  

I was hesitant to post because my symptoms are not as severe as most of the folks I read about on here and I didn't want to be treated as 'one who is not worthy.'  But after reading a lot of posts I had the impression that people on this forum were fairly kind.  Hm.  Not so much, apparently.

I'm unlikely to post again.  Not really worth the judgment.  I'll find out what I need to know in some other way.

Cynthia I meant no disrespect.  I was just telling the others that you had posted on another thread so that they could read about you there.  The people that responded, I don't  think that they meant to be unkind.  Please don't stop visiting here.  There are MANY who are willing to help.

Jeannie

Hi Cynthia-

Stick around- you are wanted!  There is lots of great info on this site that may be able to help you-  Whether you do or don't have CH, many folks here have lots of experience with HA and i feel confident that you will be pointed in the right direction!

Welcome and sorry that you are having trouble-

Kelly

Don't let it get to you, I'm sure it wasn't meant to "get off here, go away" type of thing, it was just poorly worded.  Keep in mind that cluster headaches can be and are very painful and draining, both physically and emotionally so sometimes people get short, rude, what have you without meaning to.

"It's vascular, probably cluster headaches" really isn't the best diagnosis but I don't really know what he's basing that from.  What are your symptoms?  Did you go in with a headache diary?  On the left side of the page is a link to the OUCH site, go to Treatment and Other Information and scroll down to Sufferer Recommended Doctors.  Is your neuro on there?  These are doctors that other sufferers have had success with.  

We're here to help and we want to help.  Give us some more information and we'll do what we can to help.  We all know what it's like to go through doctor after doctor, test after test, etc.  Remember, emotions fly high when you're not feeling well and nothing was meant as a direct attack at you.

I'll continue to read and educate myself.  Thanks.

Cynthia,

Your original post doesn't show up anymore - maybe you deleted it (didn't know you could do that).  From what you wrote on the other thread, a diagnosis of CH is a bit suspect, but who knows!  This disease takes lots of forms.

I would highly reinforce the suggestion to keep a headache log.  I kept a 2-week log writing down every detail I could, took it to a headache specialist, and got the correct diagnosis on the spot after 8 years and dozens of doctors scratching their heads.

Note I said "headache specialist."  Just any old neuro may not do.  I saw two neuros who weren't specialized in headaches and they had no clue.


Finally, you may want to search yourself through the International Headache Society diagnostic criteria for primary headaches and see what fits best:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Thank you for the info.  A headache specialist is what I will look for.

I'd look up the definitions on that site for hemicrania continua and paroxysmal hemicrania.  They're both one-sided, and can include autonomic activation (eye pressure/tearing and nasal congestion/dripping).

The "good" thing about those two is that they're supposed to respond 100% to an NSAID drug called indomethacin in a matter of days.

If you're going to have to wait awhile to see a ha specialist, print those two out, take them to your GP, and maybe he'll let you try the indo.
Also, have you been to an opthalmologist (not optometrist)?

Hemicrania continua was the first guess from the neuro.  She said we would know definitively if indocin worked.  Unfortunately, it didn't make a dent.  Other than the fact that it didn't respond to indocin, the symptoms fit.  But, that stumped them, I guess.  

Appointment with the opthalmologist is on the books for next week.

HI Cynthia!

I was just wondering if you would re-post your symptoms and all of the meds you have tried.  I remember a little of it but not all.  I know you had asked about shadows.  Does it sound like that is what you are having?  Have you tried Red Bull or Rock Star for when you are not in a high pain time?  When I am in full cycle I feel bad for 3-4 months at a time.  Not all of that time is unbearable but I do no feel "right" till my cycle is over.   Please remind us what all is going on with you such as the symptoms that the docs shrugged their shoulders at.   Let us have a second chance to offer our help! ;)

Jeannie

Hi Cynthia,

I'm sorry you aren't having much luck with finding an answer for your pain.  I just wanted to comment on the Hemicrania Continua.  There are some people, for whom the diagnosis fits perfectly, that do not respond to indomethacin.  I do not know off the top of my head what the best things to try are once the indomethacin has failed, but I do know that there are people who still have that diagnosis who did not respond to indomethacin.  If you can get to a headache specialist, that is truly your best bet - they really are the best at helping to sort all this out.

Hang in there!
Carrie :)

Thanks for the input, everyone.  I've never had to sort through an illness that was out of the ordinary and I'm not as up to speed at taking charge of it as I should be.  I went to the neurologist my primary sent me to, never thinking there might be a difference among them.  So, I've learned, I'll go find a headache expert.  I feel encouraged about that.

So, per request, my meds in the order that they did not work:
tons of ibuprofen
tons of coffee
less coffee
back to tons of coffee
Fioricet (like tylenol with caffeine)
topomax
indomethacin
DHE injection
prednisone
o2 in the neuro's office with just a nose tube
lidocaine nasal spray -- actually that works really well for the pain!  weird, but well.  
verapamil -- finally felt some lightening of my eye pressure, not gone, but lighter

symptoms:
left eye, puffy, droopy, watery, pressure, pain -- my boss asked me if I had had a stroke.
left nose, running, extremely congested, nosebleeds
left face, burning skin, numb skin
left brain, dull pain 24/7, much much more pain at 3am and mid morning
can't sleep lying down
started in Jan, got worse in Feb, gradually better each day since then, but still there, never a time when there is no sensation/pain, but you carry on because you can't lie down anyway

ct scan, normal
mri, normal
blood work, normal

I'm not asking you folks for a diagnosis, just to be clear.  I offered that info because someone requested it.  I also don't think I have true CH, although, maybe I'm just having shadows for ever and ever -- that's why I asked what you all meant by "shadows".  Anyway, I appreciate the time you take to offer your thoughts.

Cynthia

Cynthia

Thanks for the run down!  

This season I did not have any intense periods of pain.  Mine were all shadows.  One year, in the fall, I only had pain in my teeth.  CH can be different from person to person and from year to year.  

I hope that you are able to find a specialist in your area who can offer you some help.  Maybe you could ask your Dr. to prescribe the correct 02 for you.  If it helps it may be a way to determine if you have CH or not.

Keep us informed!

Jeannie

2 things stood out to me:
Burning face / face pain is more in line with trigeminal neuralgia - ask about that
I'm not sure what the effectiveness of prednisone is for CH, but I had thought it was 100%.  Has anyone ever heard of prednisone NOT working with CH?  Nothing has worked for me except for pred, at least before busting.

Chappy wrote on Jun 23^rd, 2008 at 12:38am:

I'm not sure what the effectiveness of prednisone is for CH, but I had thought it was 100%.

From START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Kudrow noted that prednisone provided substantial cluster pain relief in 77% of 77 episodic cluster patients and partial improvement in another 12%. Chronic cluster patients did not fair as well, with only 40% of 15 patients treated showing marked improvements.

What wonderful information.  Very useful.  Thank you.  It helps a lot to know the relative effectiveness for different things.  

Another thank you to the person who introduced me to the idea of combining meds, some of this plus some of that.....my docs only offered one thing at a time, all or nothing.  So all this information is very very helpful.

And one more thank you for the idea that I could have more than one thing happening in my head.  

Many many good things to think about.

Two more sypmtoms I forgot to mention
LOUD squeaking in the arteries / veins in my head -- so loud I sometimes can't hear people talking to me (it's not a ringing, it's squeaking!)
and my blood pressure, normally very low, has gone through the roof in the last 3 months (the neuro said, "well, being in pain for so long could do that"...)

Cocktails are common, prednisone works well but the headaches come back when you taper off the drug, just be glad all your getting is the shadow. Pray that doesn't change. This is a forum not a boxing match.
Not everyone is going to say what you want. No one here is trying to hurt you. Leave you sensitivity at the door and you will be fine.
Welcome and if you want to learn about CH stick around.
all the best
thebb
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Audre wrote on Jun 22^nd, 2008 at 9:30am:

Don't let it get to you, I'm sure it wasn't meant to "get off here, go away" type of thing, it was just poorly worded.  Keep in mind that cluster headaches can be and are very painful and draining, both physically and emotionally so sometimes people get short, rude, what have you without meaning to. "It's vascular, probably cluster headaches" really isn't the best diagnosis but I don't really know what he's basing that from.  What are your symptoms?  Did you go in with a headache diary?  On the left side of the page is a link to the OUCH site, go to Treatment and Other Information and scroll down to Sufferer Recommended Doctors.  Is your neuro on there?  These are doctors that other sufferers have had success with.   We're here to help and we want to help.  Give us some more information and we'll do what we can to help.  We all know what it's like to go through doctor after doctor, test after test, etc.  Remember, emotions fly high when you're not feeling well and nothing was meant as a direct attack at you.

    I wasn't being rude,  I was being succinct .

       Potter

[quote author=7358525344360 link=1213975053/0#17 date=1214195913]2 things stood out to me:
Burning face / face pain is more in line with trigeminal neuralgia

Actually, when I'm in cycle, the skin on my painside (both face and skull) feel constantly as if scourged, so it can most certainly be an effect of CH. To be honest, I thought everyone had that, but seemingly it's not. I've learnt quite a lot here.

Interesting to know that someone else feels odd skin sensations on the pain side -- from numb to odd pinching to totally on fire, blistered and burnt, can't even think about touching my face or scalp.  

Anyone else feel that?

Yep, hair hurts, skins sensitive. Effected side only.
thebb

Same here. Touch that side of my scalp and die.

And does your scalp/face hurt for the exact duration of a cycle or does it only happen during a hit or does it ebb and flow?  

I'm finding that it is the first thing to appear and the last thing to go.

cynthia_in_nh wrote on Jul 8^th, 2008 at 12:17am:

Interesting to know that someone else feels odd skin sensations on the pain side -- from numb to odd pinching to totally on fire, blistered and burnt, can't even think about touching my face or scalp.   Anyone else feel that?

Shingles?

[/quote]

Shingles?
[/quote]


well, see, that's why I was interested to find out that others feel this.  If you google scalp pain or skin pain you get directed to shingles -- that's all.  The only other place it shows up is in the case of an arterial infection.  But shingles or herpes zoster would also have blisters along the nerve and that is not the case for me.  When I asked the neuro about it she waived it away and said "just some overstimulation as a result of the headache."  So, although that may be true, I still find it interesting that others feel it, too.  

Scalp hurts during, but is overshadowed by the actual hit. After the hit subsides, it's very tender for probably 20 minutes or half an hour.

As Brew stated, the hit itself will make you forget about it (and about all other things) but to me the sensation of a scourged scalp remains pretty much all the time. The worst off course directly after I've been beaten, but it stays sore anyhow.

Hi Cynthia~  I typed HEMICRANIA CONTINUA into the search and found you!  Kind of freaked me out for several reasons.  They are:
1.  My name is Cynthia
2.  I too am experiencing your same symptoms
3.  MRI normal, Opthamologist, 2 Neuroligists say it may be CH
4.  Primary Doc thought I had had a stroke!
But here's what is different.... I am a card carrying CH sufferer.  My last cycle was 9 yrs. ago.  I am exhausted by just trying to get my history of CH out of the current symptoms.  I cannot take indomethicin.  ER with severe rebound Headache.  Lets talk more 8-)

My hair hurts too, just on the pain side

When I'm in a really heavy cycle, I have pain and sensitivity on the scalp and face.  It is a constant until the cycle is over.  I can't wear any thing in my hair, head bands, pony tails, ect. Combing it even hurts.  In fact sometimes wearing my hair up will kind of trigger shadows even when out of cycle.  Maybe that's just my imagination though.    I'm kind of goofy about worrying about getting a  hit.  

A couple of years ago I went to the ER because I had been sick for a while.  They wanted to test me for the Flu and I refused.  I was so convinced that sticking that swab up my nose would cause a cycle to start I just couldn't let them.  Crazy?

Take care,

Jeannie

maalstroom wrote on Jul 6^th, 2008 at 8:23am:

[quote author=7358525344360 link=1213975053/0#17 date=1214195913]2 things stood out to me: Burning face / face pain is more in line with trigeminal neuralgia Actually, when I'm in cycle, the skin on my painside (both face and skull) feel constantly as if scourged, so it can most certainly be an effect of CH. To be honest, I thought everyone had that, but seemingly it's not. I've learnt quite a lot here.

Mr. Potter, you are a gem  :)!  I love reading your comments.
Sandra

What are shingles, Jonny? Remember, I am a naive foreigner who doesn't know the ins and outs of your language.

Are they:
1. Crispy chips? Sounds like they are edible.
2. Chinese angels?
3. People without a relationship but with a speech impediment?

maalstroom wrote on Jul 23^rd, 2008 at 2:20pm:

What are shingles, Jonny? Remember, I am a naive foreigner who doesn't know the ins and outs of your language. Are they: 1. Crispy chips? Sounds like they are edible. 2. Chinese angels? 3. People without a relationship but with a speech impediment?

They are pieces of wood that cover the roof of a house  :D!

maalstroom wrote on Jul 23^rd, 2008 at 2:20pm:

What are shingles, Jonny? Remember, I am a naive foreigner who doesn't know the ins and outs of your language. Are they: 1. Crispy chips? Sounds like they are edible. 2. Chinese angels? 3. People without a relationship but with a speech impediment?

LOL
Sounds to me like you know the ins and outs of English.

shingles is the  chicken pox virus, when the virus stays in one's system and happens again at a later date

Charlotte

Thank god my head doesn't ever hurt to the touch.. Even when a k10 shows its ugly face.  I get numbness and a tingling sensation (somewhat hot). The pain is mainly in my neck, temple, eye and cheek bone. Sometimes i wrap a towel tighly around the base of my scull and twist it around my forehead. Anyone else try this method? seems to help temporarily. Well I wish everyone a PF day and look forward to talkin more with you guys ;)
                        Greg

"What are shingles, Jonny?"

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Linda