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        Cluster Headache Help and Support >> Cluster Headache Specific >> going to the neurologist today
        
(Message started by: Charlotte on Aug 4^th, 2006, 10:55am)

Title: going to the neurologist today
Post by Charlotte on Aug 4^th, 2006, 10:55am

Appointment in 3 hours.

My attitude sucks. Please keep me in mind and prayer today.

Thanks.

Charlotte

Title: Re: going to the neurologist today
Post by drivin_blind on Aug 4^th, 2006, 11:06am

Try to be upbeat. Best of Luck. Let us know if they have discovered "The Magic Pill" yet.

Title: Re: going to the neurologist today
Post by LeLimey on Aug 4^th, 2006, 11:11am

Charlotte you probably know more than he does by now.. tell him what you want hon! :)

Title: Re: going to the neurologist today
Post by Bond007 on Aug 4^th, 2006, 11:11am

Yeah, Charlotte! Definitely try to stay positive.

I'll be sending you good vibes today. 8)

Title: Re: going to the neurologist today
Post by Mattrf on Aug 4^th, 2006, 11:27am

Good luck, I really hope he can come up with something to help you and is a good doc for you.
Prayers and vibes coming your way.

Matt

Title: Re: going to the neurologist today
Post by E-Double on Aug 4^th, 2006, 3:44pm

There will be no sucking....ummmmmmmmm

Stay positive ;)

Title: Re: going to the neurologist today
Post by Charlotte on Aug 4^th, 2006, 5:41pm

I conveniently had a headache for the neurologist. He said it has elements of but is not cluster headache or chronic paroxysmal hemicranium, and it also is not migraine.

He has prescribed Neurontin and gave me a chart. He said I can keep using the kudzu & the maxalt melt. I have a med to try and answers to the questions that the gp didn't answer. So, officially, I'm not a clusterhead because of the frequency and because Verapamil didn't work when I tried it in 1998, and Verapamil works for cluster headaches.

Do we have a support group for no name elements of headaches?

Also, I am a supporter, even if I'm not really one of us.

Charlotte

Title: Re: going to the neurologist today
Post by prcole18 on Aug 4^th, 2006, 5:54pm

From what I know Verapamil does not work for everyone with CH.

Also a lot of the time you need to be on at least 480mg of Verap to see some success from what ive heard.

Title: Re: going to the neurologist today
Post by Bond007 on Aug 4^th, 2006, 6:02pm

I've also just read that it's not uncommon for clusterheads to be prescribed doses of up to 800mg of verapamil for it even to be effective. Maybe you need a second opinion?

Title: Re: going to the neurologist today
Post by prcole18 on Aug 4^th, 2006, 6:23pm

I agree with Bond007, id get a 2nd opinion

Title: Re: going to the neurologist today
Post by Brumm on Aug 4^th, 2006, 6:37pm

on 08/04/06 at 17:41:06, Charlotte wrote:

Also, I am a supporter, even if I'm not really one of us.

Charlotte

You can still be one of us. Get a second upinion.
I was talking to thre doctors before I got one even heard about CH.

Title: Re: going to the neurologist today
Post by LeLimey on Aug 4^th, 2006, 7:25pm

I'd get a second opinion too.. based on the fact that he isn't doing much for you regardless.
His knowledge of CH is sketchy, verapamil IS the first line of defence against CH but for me it didn't work although admittedly I couldn't get higher than 480mg without passing out due to low BP!
Good luck Charlotte and whatever it is, you have our support, we WILL get you through this CH or not okay?!
Helen

Title: Re: going to the neurologist today
Post by E-Double on Aug 4^th, 2006, 7:25pm

Hey Charlotte,

PF wishes regardless!!!

If you do not mind refreshing my memory, how do your ha present?

frequency?
location?
duration?

:-*

Title: Re: going to the neurologist today
Post by Charlotte on Aug 4^th, 2006, 9:47pm

Thank you for the moral support. I appreciate it.

"If you do not mind refreshing my memory, how do your ha present?"
-starts with one or two rounds of forehead sweating, r. side nasal drip, pf time, then two ramp ups of pain through inside corner of r. eyebrow, pain in f. temple &/or r. eyebrow, * somewhere in there is rocking & pacing but I can't seem to remember right now.

"frequency?"
-Hit every 2 hours since 2-8-06, with slight variations of less 40 minutes or so either way.
-Before that hit every 3 hours between 11-27-05 and 2-9-06.
-Before that, every 4 hours for several months.
-A year ago, only hit every 8 to 12 hours.

"location?"
-right side, starts above right jaw hinge, travels up and over down through the eyebrow. End of trigiminal nerve burn. Main pain from inside corner of r. eyebrown & straight down in cheek.

"duration?"
-The pain portion currently lasts 12 to 40 minutes. During the farther spaced hits it may last up to 3 hours if untreated.
-some of the high & low mini-cycles end with back to back headaches with 7 to 12 pf minutes in between.

I don't know if I mentioned it anywhere beside the kudzu thread.

I am going to try the neurontin. I have nothing to lose. The neurologist did actually listen and did seem to know what he was talking about. He did not look at me while he was writing, which keeps him out of the "good" category, but he did listen and he asked some good questions and answered some of the questions I've been asking for years.

It's funny that the very thing that drew me here, getting hit every 2 hours, is what puts me over the 3 to 8 daily category.

Charlotte

Title: Re: going to the neurologist today
Post by starlight on Aug 4^th, 2006, 11:01pm

Charlotte,

I am disappointed that your neurologist did not have any official diagnosis to give you. The headaches that you are having do have a name, and he needs to figure out what they are. Either that or he needs to refer you to someone who can. My advice is to go to a headache clinic. I have been to several neuros--I (I can only speak personally) found a higher level of "integrity" at the headache clinic in terms of them taking a very very careful history of my headaches. Also there you find the "headache docs"--they know their headaches.
Also, I will have to look on the net--there is some headache that mimics clusters and often (or perhaps exclusively) strikes women but is not clusters. However it is similarly painful. Although I am not convinced you don't have clusters. Not everyone presents "typically" in every single way.

Title: Re: going to the neurologist today
Post by starlight on Aug 4^th, 2006, 11:15pm

OK--I just did a search on the net--here are two ideas--"paroxysmal hemicrania" or there is also a diagnosis called "probable cluster headache" (which I did not know)--well I guess there are a lot of different headache types out there--but those are two possibilities???

Title: Re: going to the neurologist today
Post by starlight on Aug 4^th, 2006, 11:25pm

Charlotte--see this on paroxysmal hemicrania--sorry I do not know how to "copy" links: http://headaches.about.com/od/essentialinfosheets/a/parox_hemicran.htm

It says in the article they can be "chronic or episodic" and that there can be "5 to 40" headaches a day.

Maybe you have two different types of headaches occurring at one time, but does this sound like it could be one of them?

Hope it helps figure it out.
Starlight

Title: Re: going to the neurologist today
Post by starlight on Aug 4^th, 2006, 11:26pm

oh this thing copies links for us--sorry didn't know

Title: Re: going to the neurologist today
Post by Charlotte on Aug 4^th, 2006, 11:39pm

chronic paroxysmal hemicrania was the other thing he said my headache had elements of but was not.

I do know Verapamil doesn't work for everyone.

The kudzu, 1/4 maxalt melt, & red bull keep me fairly functional, and I'm continuing them, just adding Neurontin which starts at 1 a day for a week, and adds another daily for a week, up til 9 a day. I should know long before I hit that # if it's going to give me a break.

I really appreciate the moral support. If I go eventually go back to every 3 hours, I will fit the definition again, but I'm hoping for a better break than that. I love my job & it is a real struggle to get through the work day.

Anyway, thank you again.

I can still offer other people moral support but I guess I will have to be quiet about advice.

Charlotte

Title: Re: going to the neurologist today
Post by starlight on Aug 4^th, 2006, 11:39pm

Was your neuro aware that the paroxysmal hemicrania can be episodic like cluster headache in that regard? Well, I will stop the detective work for now.
Hope you figure out what it is. STar

Title: Re: going to the neurologist today
Post by Charlotte on Aug 4^th, 2006, 11:41pm

No, he was not aware. Thank you for the research. If you want to send me any links, I'll read everything. (I see the links up above.)

Charlotte

Title: Re: going to the neurologist today
Post by nani on Aug 4^th, 2006, 11:49pm

Char, I don't care what you have... you are always welcome here.
PH and CPH are often diagnosed/ruled out during a trial of indomethacin. Worth a try, I think. The neurontin won't interfere with kudzu and the other meds. Expect some dizziness and fatigue as you ramp up. Keep us posted, OK?
hugs and pf wishes, nani

Title: Re: going to the neurologist today
Post by starlight on Aug 5^th, 2006, 12:00am

Charlotte,

Here's one good link: http://health.enotes.com/neurological-disorders-encyclopedia/paroxysmal-hemicrania

(ps. you are always welcome here...and I know what it is like to have to keep banging on the door for answers)

(ps. thought for some reason you said in your other post before it was of episodic nature--my brain is fried--either way trying the indomethacin might be well worth it--your symptoms sound remarkably similar in many ways to this disorder)

Title: Re: going to the neurologist today
Post by Charlotte on Aug 5^th, 2006, 12:01am

Thank you Nani. I'm blondish so dizzy is good. Took the first one. Do you think it will help me sleep, or will that come later?

Charlotte

PS Thank you Star. Am reading now.

Title: Re: going to the neurologist today
Post by nani on Aug 5^th, 2006, 12:06am

Neurontin helped me get sleepy, but didn't always help me sleep all night. You may feel a bit of a "buzz", too. Nothing major, not really unpleasant...just kind of "hazy". Sleepy, pf wishes to you, sweetie, nani

Title: Re: going to the neurologist today
Post by lionsound on Aug 5^th, 2006, 4:40am

Charlotte,

It's time to see a headache specialist.

Title: Re: going to the neurologist today
Post by E-Double on Aug 5^th, 2006, 5:15am

sounds like ch

Title: Re: going to the neurologist today
Post by LeLimey on Aug 5^th, 2006, 6:00am

Charlotte I have several friends who have episodic paroxysmal hemicrania. For one of them O2 does actually work so it is ALWAYS worth trying that although as Nani says, the best med for PH is indomethacin which will prevent the majority of attacks. Its a dirt cheap drug so no one should have any problems with you trying it and its very fast acting. It should have you pain free within a week. The only thing to bear in mind with indo is that it can be harsh on the stomach so you do need to take it with anothe rmed to protect your stomach.
Hope that helps
Helen

PS A good friend of mine here reckons that PH, as she has, is Posh Headaches whereas CH for me is Common Headaches.. snobbery even in pain eh?! ;) ;;D

Title: Re: going to the neurologist today
Post by Charlotte on Aug 5^th, 2006, 10:50am

Helen, I'm not sure if I've told you how much I appreciate you - not just for what you give to me but for everyone. Did you ever figure out how to twist your hair like your friend at the convention?

In 2000, I saw another neurologist and he gave me several scripts - one was indocin. I didn't know what it was for until I got a copy of the neurologist's report. It didn't help, but I didn't know what to look for to evaluate it properly.

I mentioned it to this neuro, and he made sure I knew how to use the neurontin, it's history - developed for something else and had an incidence of helping some headaches, and he gave me a 9 week chart so I do know how to use it and do know what it's for so I can evaluate it.

I also appreciate that he gave me only one med and one that fits into the pattern I am taking kudzu. It's easier to evaluate one new thing at a time for me, and I will be able to tell if it is helping or harming.

One link from Bob refers to neurontin as an anti-seizure medication that has been useful in migraine & tesion heache prophylaxis , does not appear to cause end-organ damage, & weight gain is relatively minimal (40 lbs?).

The pharmacy insert says used for seizure, nerve pain from shingles, diabetic neuropathy, peripheral neuropathy, & trigiminal neuralgia.

It seems to be in the right ball park.

I feel better today - emotionally.

Charlotte

Title: Re: going to the neurologist today
Post by kcopelin on Aug 5^th, 2006, 11:33am

Charlotte,
This is your home and we are your family, no matter what the docs say about your headaches. While it seems that this neuro did listen to you and got you started on a good trial, he is misinformed about verap. It really does not work for all CHers..so he needs some education. I am so sorry you're getting hit so frequently-you continue to be in my prayers....
PFDAN,
kathy

Title: Re: going to the neurologist today
Post by MJ on Aug 5^th, 2006, 11:35am

on 08/04/06 at 21:47:56, Charlotte wrote:

Hi Charlotte.

Interesting diagnosis.

First off regarding frequency, most of the medical textbook literature states (if I remember right) that clusters typically come around 2 to a max of 4 per day.
This is completely untrue. and is really due to the lack of knowledge of our CH as probably most sufferers do indeed get hit less then 4 times a day It took some time for me to be diagnosed years ago for this reason as I also get hit 8-12 times per day but allways the attacks last 1-2 hours.. and the short in between breaks are not uncommon.

Secondly as you know Verapamil and many other meds do not work for everyone, I am one of them who gets no, zero, results from traditional meds at any dosage except high dose prednisone above 160 mg tapers.

Duration- this in my opinion is the only question on the 12 minute hits unless you are using immitrex or o2. but the 3 hour unmedicated hits bring you back to clusters.
(sunct ?)

inside corner of eyebrow being a center point of pain still goes with the trigeminal nerve but havent untill now heard of this one. (Except with severe sinus issues)

I never feel pain in my eye like many others only the temple regions are focused and spreads from there.

Your case deserves more research and another opinion but I suspect you are in the right place here at the very least for the support you give and recieve as well.

I'm in a denial phase so I dont have CH either.

Title: Re: going to the neurologist today
Post by Bond007 on Aug 5^th, 2006, 2:08pm

Charlotte-

Indocin is the brand name for indomethacin. If that didn't work, then you most likely don't have hemicrania continua or paroxsymal hemicrania.

I still think you should get a 2nd opinion from a headache specialist. Even my neuro told that my headaches don't necessarily fit completely into the CH category, but the symptoms fit "enough" to diagnose them that way. We all do, and can, present a variety of symptoms.

Best of luck for PFDAN's!!!

Title: Re: going to the neurologist today
Post by Charlotte on Aug 7^th, 2006, 9:58pm

I did try indocin in 2000 but I had several kinds of headaches going on and I couldn't really evaluate it as I didn't know why it was being prescribed, at that time.

At this time, I have only one type of headache occurring, and if there is no relief from the neurontin in a reasonable amount of time, then I will ask to try the indocin again. The kudzu has almost entirely eliminated my migraines, and has calmed whatever beast this is to almost bearable. The red bull & maxalt melt helps over half the time.

And being chronic means I have plenty of time to try something out. I don't care what you call it, I hate this. I am doing ok, though. It could be a lot worse.

Title: Re: going to the neurologist today
Post by kevinpix on Aug 7^th, 2006, 10:19pm

You're a proud member of "the pain society" for all we care, right ya'll?

Title: Re: going to the neurologist today
Post by Bond007 on Aug 8^th, 2006, 12:07pm

Exactly! Who cares?! You're in pain, you're welcome here! 8)